I haven't been able to write the last few weeks just out of sheer exhaustion. I've had a few things going on and ended up with several doctor's appointments almost everyday. I didn't really try to schedule 2 appointments or more on the same day, now scheduling appointments everyday is just too much.
Let me think. I had the stress test last week. Well, tried to anyway. I lasted a whole of 4 minutes at a moderate walking pace and just pooped out and couldn't go anymore. My heart rate shot up to 140 and my blood pressure rose to 140/90. Since they Cardio couldn't get a good reading they're going to induce me chemically. I'm kind of scared about that, but it's done at the hospital so I guess it's in a controlled environment with all the necessary equipment should anything happen.
I also started seeing an Allergist/Immunologist to test for Mast Cell Activation Syndrome. The allergist wanted to rule out a few other things like Eosinophilic Esophagitis and Celiac Disease, both of which have come back negative. I had a histamine blood test yesterday and today I'm collecting urine sample for the tryptase test (sorry TMI?). We'll see what happens. No matter what, food avoidance will be part of the solution and so far some of the foods I can't tolerate are: rice, corn, lactose, yams, wheat, eggs, tomatoes, shellfish, yogurt, chicken, ground beef. I also can't tolerate probiotics, atenolol, antibiotics except penicillin, NSAID's specifically Toradol, any narcotics or opioids...I'm sure I'm forgetting some stuff. The funny thing is he said Mast Cell Activation Syndrome is "very rare, extremely rare" and that "there are rumors that it is linked to EDS but that is extremely controversial". I'd like him to visit the Ehlers-Danlos National Foundation Forum and see that we seem to have our fare share per capita, extremely controversial or not!!! I'm not seeking this diagnosis specifically, I'm just seeking answers to why I have so many allergies. They have to be coming from somewhere. I think IBS is the Fibromyalgia of the stomach. I also need to be able to get nourishment because right now I'm severely undernourished and dehydrated, and weight has nothing to do with it; I will however note that I have lost 12 lbs in the last 4 weeks. I have been hearing nasogastric feeding a little too often lately...
While I was at the Allergist, he also had me do an Incentive Spirometry just to have a baseline reading on me. My reading came in pretty low. So he had the tech give me a breathing treatment with albuterol and repeat. It came in 10% worse than the previous reading. I have been feeling tight chested lately but not enough to need my inhaler, just tight chested in passing, like with walking or other activities. So, the reading might indicate the beginning of COPD. Geez, when it rains it pours! He didn't make any changes then, but said "we'll talk about it at my next visit".
It seems like EDS has taken EVERYTHING from me. It has affected just about every system in such a short amount of time. My head/brain with daily migraines with auras, mental fog and concentration problems because it affects neuron connections (neurons require collagen to make connections). Mood disorder due to a medical condition through dealing with an extremely painful chronic medical condition that waxes and wanes according to pain level and systems affected. It has affected my intestinal tract through GERD due to the laxity of the sphincter that controls the opening of the stomach. Gastroparesis, due to the laxity of the intestinal muscle which has caused poor nutrient absorption and slowed or stopped movement of waste. Lung and respiratory issues through difficulty breathing, shortness of breath, frequent respiratory infections and now symptoms of COPD. Diffuse joint pain: toes, ankles, knees, back, neck, shoulders, wrists, fingers. Also, easy bruising, intolerance to sun, De Quervain's, possible Mast Cell Activation Syndrome, food intolerances, multiple medication allergies. Osteoarthritis of the spine resulting in a fusion and the possibility of a future surgery...well, the list goes on.
I wish I could be more cheery. I wish I could just be one of those people that always looks on the bright side and doesn't let things get them down. But you know what? This is depressing. This does suck. Right now I'm thinking that I would love some chicken noodle soup from scratch becuase I make some mean chicken noodle soup. But, then I think, I have no energy to make it. It's not laziness, it's just outright no energy. It would require the effort to stay in the kitchen standing up, chopping things while I'm ready to fall asleep. I would rather not eat at all. Also, I can't really eat the chicken or the noodles so what's the point...Is this something that I should be cheery about? NO! It sucks!
Let's see how I feel tomorrow. Tomorrow might be better.
Tuesday, September 18, 2012
Tuesday, September 4, 2012
DISASTER, DISASTER, DISASTER
I've been gone for a while. Longer than I planned or wanted to because I've been going through a total chaotic mess. Disaster is more like it. This is the stuff that you see in movies and say "that would never happen in real life!" or would maybe say "she needs a Dr. House to find out what's wrong with her!". This is going to be a loooong posting so get comfy....
I had left off going to have some time away for R&R (rest and relaxation) after having had acid reflux surgery. The surgery had some complications where I was experiencing some low grade fevers around 99.5 or so and vomiting, even though it should be virtually impossible to vomit after this type of surgery because of it's very nature: the opening of the stomach is tightened. The surgeon had told me that because it was a very invasive surgery some swelling was normal so "just give it time, it WILL get better", emphasis on the WILL, followed by an almost mumbling to himself "I did a good surgery"...red flag!!!
During my R&R I kept vomiting and vomiting and vomiting...I vomited so much that my stomach and esophagus hurt and I cried. Because it hurt so much I decreased my food intake, but unknowingly also decreased my liquid intake. By the time I got back, I began to experience a continuous pounding headache that was unresponsive to my migraine medications (Imitrex, Frova and Tylenol); I had stopped going to the bathroom altogether, was having palpitations and experiencing fevers if 101+.
On the second day back I had a 6 week follow up with a new surgeon as the old one had left the practice. I explained about the continuous vomiting and decreased food and fluid intake, how tired I was feeling and the fever. My temperature was take in his office and was 101.4. He sent me for a CT scan of the abdomen looking for an abscess and ordered 1 liter of hydration. The scan was normal (of course) and after the fluid my headache decreased and I had a little more energy. He referred me to my Gastroenterologist.
I called the Gastroenterologist's office and the nurse said that I had been vomiting for way too long and had a high fever so I should go to the Emergency Room, they would be able to do blood work and look for infection. Since my fever kept rising and reached 101.8 I decided to go to the ER. They said I was severely dehydrated probably due to the prolonged fever and vomiting (duh!) so they gave me another liter of fluids IV, however the blood work did not reveal any infection. The only other thing they could do for me was give me Toradol to help ease the migraine pain. I was in the ER from 6:30 p-10:00p.
At 2:30a I woke up with palpitations. I thought they were related to POTS and the dehydration and didn't think much of them. I drank a large glass of water and went back to bed. At 4:00a I woke up with a sharp stabbing pain just below my rib cage that went all the way through my chest to my back. I took and extra dose of Prilosec and some antacids and waited a few minutes to see if it would help. It did not. The pain kept coming in sharper and sharper waves and moved up into my shoulder. At 4:40 a I woke up my husband and said I would call 911 because I thought it might be a heart attack. The EMT's came and hooked me up to an EKG machine and during one of the "waves" registered what they explained as a "cardiac event". During the ride to the hospital they gave me Nitroglycerin and wanted to give me Aspirin but couldn't because of my gastric issues. The Nitro just made me worse and that's when I really got bad! I couldn't breathe, my chest got really tight and my heart felt like it was going to come through my chest, I felt like throwing up, dizzy like I was going to pass out...I had been feeling all of these things, it just got worse with the Nitro. I could hear the EMT's saying "BP 130/PALP, heart rate 130", they put in an IV in the ambulance and there was blood everywhere because my blood pressure and heart rate was so high!
Finally we got to the hospital. I heard the EMT's turning me over to the nurse saying "she showed a mitral tear, whe gave Nytro, she got worse, then showed posterior mitral (something)". This reminded me of people who say they can hear everything that goes on in the operating room even while sedated. I couldn't really communicate, especially without the oxygen, but I could hear them. They administered another liter of fluids IV with Zofran for nausea, Tylenol and Zantac and repeated bloodwork. The blood work showed low potassium consistent with dehydration. I was given potassium tablets, which were pretty big and I reminded them that I was having problems swallowing and keeping things down. About 45min to 1 hr later they did another CT looking for a blood clot in the lung, there was no blood clot, but the potassium tablets were still lodged in my esophagus!!! Proof that solids were not passing through my esophagus. However, once they fluids were in, my blood pressure and heart rate stabilized; 3 liters of fluid in one day and the doctor said he though I was still dehydrated. At 10:00a I was sent home on a liquid only diet and a follow up with my Gastroenterologist to have a dilation of the Nissen wrap (acid reflux surgery).
I had the Nissen wrap dilation a week ago today, but I've had no improvement. The Gastroenterologist said he didn't think it would help and was also of the opinion that it was just post-surgical inflammation. After the dilation, which is done by endoscopy, he said that there was no inflammation, that the endoscope passed through the esophagus no difficulty or obstruction, he did perform the dilation anyway "but it's like a rubber band, you stretch a rubber band but it's going to come back. If it continues we could do an esophageal motility test." However, he did prove himself wrong in that there is no inflammation! He then said, "why did you have the surgery?" I told him, you were the one who suggested it. He said "I told you to talk to the surgeon and then come back to me (he never said that). I would have discouraged you from having the surgery." COMO, WHAT?!?! Then why send me to talk to the surgeon in the first place if you thought having the surgery was a bad idea?!?!
I spoke to my geneticist and my primary care doc, they think that an esophageal motility test is exactly what is needed. I called the Gastro's office back and said that all of these doc's thought the test needed to be performed because I was still vomiting and dehydrated and in metabolic ketoacidosis due to lack of nutrition, which is causing secondary tachycardia and possible heart condition. Guess what they said? That I needed to go back to the surgeon's office, in other words, he's not going to treat me!!! Meanwhile, the surgeon's office refers me to the Gastro's office because they're the ones who do this kind of test, so they don't want to treat me either!!! Lawsuit anyone??? I'll be going back to my primary care doc tomorrow so he can sort this out for me and either talk to these doc's himself or just order the test himself. While all of this is happening, I'm drinking Boost and Gatorade in order to get SOME nutrition..........AAAARRRRRGGGGGHHHHHH!!!!!
I have seen a Cardiologist and he's concerned about the symptoms I presented during and post the "cardiac event" and I'll be having an echocardiogram, sonogram of the carotid artery and a stress test...I hate stress tests! However, the migraine doctor started me on a low dose of Atenolol, which is sometimes used to reduce migraines, but I don't like! It making me itchy, even causing some pustules, my eyes itch and sometimes hurt, and it's made my auras worse! The Cardio says it's a good drug and it's okay to keep taking it, even without the results. The itching and pustules are enough reason to stop it (see MCAS below)!
On some other news, but just as disastrous...
My primary care doc thinks I might have Vascular Ehlers-Danlos; the bad EDS. This is the one that can result in rupture of the arteries and organs. My follow up with the geneticist is in December, so I'll bring it up then. This type has to be confirmed through genetic testing.
Some of the criteria for it are:
1. family history that includes arterial, intestinal and/or uterine rupture. My grandfather and uncle died of sudden aneurysms, my uncle was in his 40's, and my mother had a uterine rupture.
2. thin translucent skin, and you can see an entire highway of veins and arteries through my skin!
3. extensive bruising. I have also noticed that when I use the Imitrex injection, the only way Imitrex works for me, I have started to get huge hematomas on my thighs which didn't use to happen.
4. small joint hypermobility in the fingers.
I have also been doing some investigating in why Ian and I have so many allergic reactions. I learned of something called Mast Cell Activation Syndrome (MCAS) or Mastocystosis that goes hand-in-hand with EDS!!! In simple terms, the body is in a constant state of allergic reaction as there is an overabundance of mast cells. These can accumulate anywhere in the body: GI tract, liver, spleen, bone marrow, lymph node, skin and blood causing leukemia. Symptoms can include: itching, flushing, fainting/hypotensive shock/dizziness, abdominal pain, nausea and vomiting, diarrhea, fatigue, memory problems, depression, tachycardia/palpitations, breathing difficulty, osteoporosis, pain in the muscles and joints. Often it is missed because blood work is normal unless looking for MCAS and/or allergy related indicators. Initial treatment is composed of Zyrtec, Zantac and Epipen, and then tailored to the individual's specific manifestations. Ian was already on Zyrtec-D, and I started Zyrtec-D and Zantac because I have so many gastric complications. Through The Mastocystosis Society (tmsforthecure.org) I found The Bernstein Institute right here in Cincinnati, and it's supposed to be a leading research, diagnosis and treatment facilities in MCAS. I already have an appointment! I'll keep you updated.
So all-in-all, I'm depressed, frustrated, feeling hopeless and abandoned. I don't dismiss the value and severity of any medical disease, we're all in the same boat, but would I get more empathy if I had Cancer because it's a known disease? Diabetes even if I were in renal failure? I feel just as much pain and experience just as many complications, but because these doctors cannot gauge my pain and my complications in comparison to these other well know conditions they loose their bedside manners, their healing touch, their compassion. They pass the buck and forget about me, about the patient, about the person that is in distress and asking for their help. They don't got the extra mile perhaps because their liability insurance will also be extended that extra bit. Where does that leave us, the ones that don't fit neatly into a category of well know diseases, the ones that are classified as "orphan diseases"? Orphans...that's exactly right...orphans.
I had left off going to have some time away for R&R (rest and relaxation) after having had acid reflux surgery. The surgery had some complications where I was experiencing some low grade fevers around 99.5 or so and vomiting, even though it should be virtually impossible to vomit after this type of surgery because of it's very nature: the opening of the stomach is tightened. The surgeon had told me that because it was a very invasive surgery some swelling was normal so "just give it time, it WILL get better", emphasis on the WILL, followed by an almost mumbling to himself "I did a good surgery"...red flag!!!
During my R&R I kept vomiting and vomiting and vomiting...I vomited so much that my stomach and esophagus hurt and I cried. Because it hurt so much I decreased my food intake, but unknowingly also decreased my liquid intake. By the time I got back, I began to experience a continuous pounding headache that was unresponsive to my migraine medications (Imitrex, Frova and Tylenol); I had stopped going to the bathroom altogether, was having palpitations and experiencing fevers if 101+.
On the second day back I had a 6 week follow up with a new surgeon as the old one had left the practice. I explained about the continuous vomiting and decreased food and fluid intake, how tired I was feeling and the fever. My temperature was take in his office and was 101.4. He sent me for a CT scan of the abdomen looking for an abscess and ordered 1 liter of hydration. The scan was normal (of course) and after the fluid my headache decreased and I had a little more energy. He referred me to my Gastroenterologist.
I called the Gastroenterologist's office and the nurse said that I had been vomiting for way too long and had a high fever so I should go to the Emergency Room, they would be able to do blood work and look for infection. Since my fever kept rising and reached 101.8 I decided to go to the ER. They said I was severely dehydrated probably due to the prolonged fever and vomiting (duh!) so they gave me another liter of fluids IV, however the blood work did not reveal any infection. The only other thing they could do for me was give me Toradol to help ease the migraine pain. I was in the ER from 6:30 p-10:00p.
At 2:30a I woke up with palpitations. I thought they were related to POTS and the dehydration and didn't think much of them. I drank a large glass of water and went back to bed. At 4:00a I woke up with a sharp stabbing pain just below my rib cage that went all the way through my chest to my back. I took and extra dose of Prilosec and some antacids and waited a few minutes to see if it would help. It did not. The pain kept coming in sharper and sharper waves and moved up into my shoulder. At 4:40 a I woke up my husband and said I would call 911 because I thought it might be a heart attack. The EMT's came and hooked me up to an EKG machine and during one of the "waves" registered what they explained as a "cardiac event". During the ride to the hospital they gave me Nitroglycerin and wanted to give me Aspirin but couldn't because of my gastric issues. The Nitro just made me worse and that's when I really got bad! I couldn't breathe, my chest got really tight and my heart felt like it was going to come through my chest, I felt like throwing up, dizzy like I was going to pass out...I had been feeling all of these things, it just got worse with the Nitro. I could hear the EMT's saying "BP 130/PALP, heart rate 130", they put in an IV in the ambulance and there was blood everywhere because my blood pressure and heart rate was so high!
Finally we got to the hospital. I heard the EMT's turning me over to the nurse saying "she showed a mitral tear, whe gave Nytro, she got worse, then showed posterior mitral (something)". This reminded me of people who say they can hear everything that goes on in the operating room even while sedated. I couldn't really communicate, especially without the oxygen, but I could hear them. They administered another liter of fluids IV with Zofran for nausea, Tylenol and Zantac and repeated bloodwork. The blood work showed low potassium consistent with dehydration. I was given potassium tablets, which were pretty big and I reminded them that I was having problems swallowing and keeping things down. About 45min to 1 hr later they did another CT looking for a blood clot in the lung, there was no blood clot, but the potassium tablets were still lodged in my esophagus!!! Proof that solids were not passing through my esophagus. However, once they fluids were in, my blood pressure and heart rate stabilized; 3 liters of fluid in one day and the doctor said he though I was still dehydrated. At 10:00a I was sent home on a liquid only diet and a follow up with my Gastroenterologist to have a dilation of the Nissen wrap (acid reflux surgery).
I had the Nissen wrap dilation a week ago today, but I've had no improvement. The Gastroenterologist said he didn't think it would help and was also of the opinion that it was just post-surgical inflammation. After the dilation, which is done by endoscopy, he said that there was no inflammation, that the endoscope passed through the esophagus no difficulty or obstruction, he did perform the dilation anyway "but it's like a rubber band, you stretch a rubber band but it's going to come back. If it continues we could do an esophageal motility test." However, he did prove himself wrong in that there is no inflammation! He then said, "why did you have the surgery?" I told him, you were the one who suggested it. He said "I told you to talk to the surgeon and then come back to me (he never said that). I would have discouraged you from having the surgery." COMO, WHAT?!?! Then why send me to talk to the surgeon in the first place if you thought having the surgery was a bad idea?!?!
I spoke to my geneticist and my primary care doc, they think that an esophageal motility test is exactly what is needed. I called the Gastro's office back and said that all of these doc's thought the test needed to be performed because I was still vomiting and dehydrated and in metabolic ketoacidosis due to lack of nutrition, which is causing secondary tachycardia and possible heart condition. Guess what they said? That I needed to go back to the surgeon's office, in other words, he's not going to treat me!!! Meanwhile, the surgeon's office refers me to the Gastro's office because they're the ones who do this kind of test, so they don't want to treat me either!!! Lawsuit anyone??? I'll be going back to my primary care doc tomorrow so he can sort this out for me and either talk to these doc's himself or just order the test himself. While all of this is happening, I'm drinking Boost and Gatorade in order to get SOME nutrition..........AAAARRRRRGGGGGHHHHHH!!!!!
I have seen a Cardiologist and he's concerned about the symptoms I presented during and post the "cardiac event" and I'll be having an echocardiogram, sonogram of the carotid artery and a stress test...I hate stress tests! However, the migraine doctor started me on a low dose of Atenolol, which is sometimes used to reduce migraines, but I don't like! It making me itchy, even causing some pustules, my eyes itch and sometimes hurt, and it's made my auras worse! The Cardio says it's a good drug and it's okay to keep taking it, even without the results. The itching and pustules are enough reason to stop it (see MCAS below)!
On some other news, but just as disastrous...
My primary care doc thinks I might have Vascular Ehlers-Danlos; the bad EDS. This is the one that can result in rupture of the arteries and organs. My follow up with the geneticist is in December, so I'll bring it up then. This type has to be confirmed through genetic testing.
Some of the criteria for it are:
1. family history that includes arterial, intestinal and/or uterine rupture. My grandfather and uncle died of sudden aneurysms, my uncle was in his 40's, and my mother had a uterine rupture.
2. thin translucent skin, and you can see an entire highway of veins and arteries through my skin!
3. extensive bruising. I have also noticed that when I use the Imitrex injection, the only way Imitrex works for me, I have started to get huge hematomas on my thighs which didn't use to happen.
4. small joint hypermobility in the fingers.
I have also been doing some investigating in why Ian and I have so many allergic reactions. I learned of something called Mast Cell Activation Syndrome (MCAS) or Mastocystosis that goes hand-in-hand with EDS!!! In simple terms, the body is in a constant state of allergic reaction as there is an overabundance of mast cells. These can accumulate anywhere in the body: GI tract, liver, spleen, bone marrow, lymph node, skin and blood causing leukemia. Symptoms can include: itching, flushing, fainting/hypotensive shock/dizziness, abdominal pain, nausea and vomiting, diarrhea, fatigue, memory problems, depression, tachycardia/palpitations, breathing difficulty, osteoporosis, pain in the muscles and joints. Often it is missed because blood work is normal unless looking for MCAS and/or allergy related indicators. Initial treatment is composed of Zyrtec, Zantac and Epipen, and then tailored to the individual's specific manifestations. Ian was already on Zyrtec-D, and I started Zyrtec-D and Zantac because I have so many gastric complications. Through The Mastocystosis Society (tmsforthecure.org) I found The Bernstein Institute right here in Cincinnati, and it's supposed to be a leading research, diagnosis and treatment facilities in MCAS. I already have an appointment! I'll keep you updated.
So all-in-all, I'm depressed, frustrated, feeling hopeless and abandoned. I don't dismiss the value and severity of any medical disease, we're all in the same boat, but would I get more empathy if I had Cancer because it's a known disease? Diabetes even if I were in renal failure? I feel just as much pain and experience just as many complications, but because these doctors cannot gauge my pain and my complications in comparison to these other well know conditions they loose their bedside manners, their healing touch, their compassion. They pass the buck and forget about me, about the patient, about the person that is in distress and asking for their help. They don't got the extra mile perhaps because their liability insurance will also be extended that extra bit. Where does that leave us, the ones that don't fit neatly into a category of well know diseases, the ones that are classified as "orphan diseases"? Orphans...that's exactly right...orphans.
Friday, August 10, 2012
Out for a few days, don't forget me!
I just wanted to say that I will be out for about 10 days. I need some well deserved rest and relaxation. I appreciate everyone who has been coming by, whether "sutmblingupon" or visiting regularly, and don't want you to forget me. I will be back!
LOL
Let's see what the Universe has planned for me....
In the meantime,
LOL
Let's see what the Universe has planned for me....
In the meantime,
Wednesday, August 8, 2012
Radiofrequency Neurotomy for pain relief
It's been really quiet with my boys gone on vacation. It's RELAXING.... I'll admit, I feel kind of guilty....but it's a well deserved guilty.
On my visit two days ago to the pain specialist, we planned to do radiofrequency on my lower back. Radiofrequency Nurotomy basically involves burning the nerve endings on the spine in order to provide pain relief when all other methods have failed. However, there are steps that have to be performed before jumping right into this. The first and less invasive method tried is pharmacology. Ideally, a non-narcotic medication such as Cymbalta, Wellbutrin, Lyrica or Neurontin, would be preferable to most doctors, but narcotics like Vicodin and Percocet are also recognized as viable. It's also necessary to rule out any physical damage that may be causing the pain such as herniated or bulging discs that may need to be addressed through other means such as surgery or physical therapy. This would be done with imaging like an MRI or CT SCAN. Next, facet injections are used to deliver numbing medication into the spine. If there is any pain relief, it is a positive response and it would be viable to move on to the next step. For some people, facet injections alone are enough to provide pain relief, but for most relief will last from an hour up to a week before the pain returns. In some cases, a step may be added here, in the form of an epidural injection. This would depend on patient history, prognosis and how aggressive the patient wants treatment to be; in some cases an epidural may be enough to control pain. If there is no success with an epidural, or it is not used, then radiofrequency would be the next step.
http://www.spine-health.com/treatment/injections/radiofrequency-neurotomy-facet-and-sacroiliac-joint-pain
In my case, we skipped the first step altogether because I can't take any neuropathic medications, they all give me adverse effects from depression to violent migraines. I also can't take any narcotic medications because I have developed allergic reactions to them within the last year. This is something that actually gets me on the doctor's good side, they know I'm in pain but am not drug seeking....then I frustrate them again when they try to give me NSAID's but I can't take them either because I have erosive esophagitis because of the GERD. Then they don't like me anymore and say "Well what do you want me to give you? What can you take?" I just say "Nothing, I'll be okay. It's just another pain."
**NOTE: These side effects, from what may be serotonin syndrome, to allergic reactions which may be mast cell reaction or ideopathic anaphylaxis are linked to EDS, but there is still research being done on these subjects.
I've already had 2 rounds of facet injections, one on each side with positive results. The first one lasted about a day. The second lasted about 1 month on and off until it wore off completely. I've noticed increased pain if sitting for 1 hour or more. I have to lay down more often throughout the day and if I have a long day I may need help getting up from bed the next day. Because of my history and prognosis, we're just going straight to the radiofrequency and skipping the epidural. There's no point in trying something that may not work and will just subject me to an unnecessary procedure that could cause more harm, the radiofrequency will get right to the point and has higher probability of being effective. Of course EDS'ers are full of surprises so if 30-50% of people get significant pain relief for 2 years, and 50% get some pain relief for a shorter amount of time, I'll probably be in that lower and shorter range, that's still better than now! My life changed the 1 month that I had pain relief from the facet injection alone. It changed enough for me to notice when I went back to having pain, so I'll take those odds.
The doctor and I also discussed getting the initial facet injections in my cervical vertebrae because of the continuous spasms and bursitis I get. Before we do this he will have me see the surgeon again to approve it. I've had imaging previously which showed C3 was starting to bulge, C4 had arthritis and C5-C7 is my fusion (which was 75% fused already!). I'll speak with the surgeon about the possibility of chronic dislocation of the shoulder leading to the bursitis, and my wrists. I don't think dislocating that will deter from having the injections done, if I am dislocating I don't feel any pain directly related to it, I just feel the bursitis and muscle pain....I'm happy to let go of that! But, maybe he can prescribe a brace for support when I sleep and on busy days.
I've already been explained that radiofrequency HURTS and that I'll be in increased pain for about 1 month afterwards....and that's PER SIDE...I'm getting both sides done. They're done 1 week apart just to make sure that there's no adverse reaction to treatment.... and to prolong torture as much as possible for their sick entertainment....Joking, LOL!!!
I'm sure I'll be fine. I made it through the acid reflux surgery with no pain meds, I'll make it through this too! I'll just do some auto-hypnosis and EFT before the procedures and....
..... trust that all is and will be well....
On my visit two days ago to the pain specialist, we planned to do radiofrequency on my lower back. Radiofrequency Nurotomy basically involves burning the nerve endings on the spine in order to provide pain relief when all other methods have failed. However, there are steps that have to be performed before jumping right into this. The first and less invasive method tried is pharmacology. Ideally, a non-narcotic medication such as Cymbalta, Wellbutrin, Lyrica or Neurontin, would be preferable to most doctors, but narcotics like Vicodin and Percocet are also recognized as viable. It's also necessary to rule out any physical damage that may be causing the pain such as herniated or bulging discs that may need to be addressed through other means such as surgery or physical therapy. This would be done with imaging like an MRI or CT SCAN. Next, facet injections are used to deliver numbing medication into the spine. If there is any pain relief, it is a positive response and it would be viable to move on to the next step. For some people, facet injections alone are enough to provide pain relief, but for most relief will last from an hour up to a week before the pain returns. In some cases, a step may be added here, in the form of an epidural injection. This would depend on patient history, prognosis and how aggressive the patient wants treatment to be; in some cases an epidural may be enough to control pain. If there is no success with an epidural, or it is not used, then radiofrequency would be the next step.
http://www.spine-health.com/treatment/injections/radiofrequency-neurotomy-facet-and-sacroiliac-joint-pain
In my case, we skipped the first step altogether because I can't take any neuropathic medications, they all give me adverse effects from depression to violent migraines. I also can't take any narcotic medications because I have developed allergic reactions to them within the last year. This is something that actually gets me on the doctor's good side, they know I'm in pain but am not drug seeking....then I frustrate them again when they try to give me NSAID's but I can't take them either because I have erosive esophagitis because of the GERD. Then they don't like me anymore and say "Well what do you want me to give you? What can you take?" I just say "Nothing, I'll be okay. It's just another pain."
**NOTE: These side effects, from what may be serotonin syndrome, to allergic reactions which may be mast cell reaction or ideopathic anaphylaxis are linked to EDS, but there is still research being done on these subjects.
I've already had 2 rounds of facet injections, one on each side with positive results. The first one lasted about a day. The second lasted about 1 month on and off until it wore off completely. I've noticed increased pain if sitting for 1 hour or more. I have to lay down more often throughout the day and if I have a long day I may need help getting up from bed the next day. Because of my history and prognosis, we're just going straight to the radiofrequency and skipping the epidural. There's no point in trying something that may not work and will just subject me to an unnecessary procedure that could cause more harm, the radiofrequency will get right to the point and has higher probability of being effective. Of course EDS'ers are full of surprises so if 30-50% of people get significant pain relief for 2 years, and 50% get some pain relief for a shorter amount of time, I'll probably be in that lower and shorter range, that's still better than now! My life changed the 1 month that I had pain relief from the facet injection alone. It changed enough for me to notice when I went back to having pain, so I'll take those odds.
The doctor and I also discussed getting the initial facet injections in my cervical vertebrae because of the continuous spasms and bursitis I get. Before we do this he will have me see the surgeon again to approve it. I've had imaging previously which showed C3 was starting to bulge, C4 had arthritis and C5-C7 is my fusion (which was 75% fused already!). I'll speak with the surgeon about the possibility of chronic dislocation of the shoulder leading to the bursitis, and my wrists. I don't think dislocating that will deter from having the injections done, if I am dislocating I don't feel any pain directly related to it, I just feel the bursitis and muscle pain....I'm happy to let go of that! But, maybe he can prescribe a brace for support when I sleep and on busy days.
I've already been explained that radiofrequency HURTS and that I'll be in increased pain for about 1 month afterwards....and that's PER SIDE...I'm getting both sides done. They're done 1 week apart just to make sure that there's no adverse reaction to treatment.... and to prolong torture as much as possible for their sick entertainment....Joking, LOL!!!
I'm sure I'll be fine. I made it through the acid reflux surgery with no pain meds, I'll make it through this too! I'll just do some auto-hypnosis and EFT before the procedures and....
..... trust that all is and will be well....
Sunday, August 5, 2012
Physically, emotionally, mentally spent...
Sadly, I haven't been able to write for a few days. I've needed to but just haven't been able to. These days it just seems as if nothing is going right and as if nothing I do helps.
First my wrist. It's not broken and apparently the ligament is not torn. Yay me...That's as far as any good news is going to go. I went to the Ortho the Urgent Care referred me to, and their x-ray's were much clearer. The diagnosed De Quervain's, fancy name for tendonitis. After asking the routine, do you type a lot? do you have toddlers? because that is the population the most see it in, I made it easy for them and said "I have EDS, this is just par for the course". We agreed on a steroid shot in the tendon after explaining that this would be my 3rd shot in my right wrist, and 1 in my left left wrist in the last 3 years, upon hearing that he suggested that we talk surgery at the follow up appointment. SURGERY?! REALLY?! I'm not ready to talk surgery, I haven't gotten over the last one! UGGGGGGHHHHH!!! AAAAAAGGGGHHHHH!!!
It's been 4 days since my steroid shot and I'm feeling MORE pain that BEFORE the shot! I've never had this much pain after a steroid shot to the wrist. I didn't even have pain when I hurt myself in the first place! Well, tomorrow I have an appointment scheduled with the pain management specialist at CAST. Fortunately, he can treat tendonitis, as well as, bursitis and migraines! I have planned a few topics for discussion: bursitis and possible chronic dislocation, any testing that could be done to detect this (such as wear on the joints) and whether there might be a sling I can wear on busy days or at night; facet injections for neck/shoulder pain; migraines and occipital/trapezium injections and how long it would take to get in to actually see him for these when I'm status migranosus; and of course, treating my biggest current concern, the tendonitis! I don't see why they wouldn't be able to do another shot right then, they also have x-ray there so they could take another look. I would definitely trust them to give me an unbiased opinion on whether surgery is really needed, and trust their referral to be the best possible, since they don't do any work on hands themselves.
It's been hard to get anything done with the wrist splint and the added pain. I can't write, hold a utensil to eat, forget driving...it's sooo freaking painful! I drop everything! I go to grab my phone and I hit and drop the phone, the remote, the Ipod, the water bottle and anything else that's nearby...stupid left hand! And don't get me started on doing my hair! MY HAIR! I can't even tie a ponytail because I can't twist my hand!
My son has also been going through a crisis period with his Bipolar Disorder. During his last doctor visit we decided that adding a morning dose of Seroquel might help keep his mood more stable. He did well on the samples so we decided to get the script; the insurance company denied the coverage. Since then, about 3 weeks, he has been having mood swings and violent rages. He was in partial hospitalization all last week, but was discharged this week because he had to visit his paternal family. I know he doesn't like being out-of-control, and it hurts me to see him like this. It is a daily struggle with him, a very exhausting day-in-day-out, because every little things is like going into combat! Asking him today to put away the dishes that yesterday he put away with no trouble or argument, could result in harsh words, yelling, and broken dishes. Perceived wrongs result in threats. And my heart breaks a little more each day because I worry about his future, his safety and the safety of everybody in the house. He's supposed to start school 2 days after he returns from his trip. He'll also have a follow up scheduled with his doctor and therapist. We all know he may need to go back to partial hospitalization...but at least there is a plan in place for his return.
So this past week, when I didn't write...I was physically, emotionally and mentally spent. Having my wrist in a splint and hurting is exhausting and so limiting. Helping my boys pack for their trip did not help. Worrying about my boys just spent me because I tried and tried and tried to figure out how to postpone this vacation so my son could stay in treatment, but between airfare and a cruise it was economically impossible to change. Nevertheless, if he had to be hospitalized, I would let all the travel go in a second! And, I'm sooooo emotionally spent. I locked myself in the bathroom and cried and cried and cried. I cried because I felt powerless, becuase I felt helpless, becuase I felt frustrated. I cried becuase I didn't know what else to do but cry, because I can't always keep it together, because I don't always have the answers. I cried because it's all just too much for me so I surrendered...
...I cried remembering to just let go and let God. To just let things unravel trusting that God's plan for all of us is in place, that everything is as it should be, and that everything will be alright, and He has us all in His hand...
First my wrist. It's not broken and apparently the ligament is not torn. Yay me...That's as far as any good news is going to go. I went to the Ortho the Urgent Care referred me to, and their x-ray's were much clearer. The diagnosed De Quervain's, fancy name for tendonitis. After asking the routine, do you type a lot? do you have toddlers? because that is the population the most see it in, I made it easy for them and said "I have EDS, this is just par for the course". We agreed on a steroid shot in the tendon after explaining that this would be my 3rd shot in my right wrist, and 1 in my left left wrist in the last 3 years, upon hearing that he suggested that we talk surgery at the follow up appointment. SURGERY?! REALLY?! I'm not ready to talk surgery, I haven't gotten over the last one! UGGGGGGHHHHH!!! AAAAAAGGGGHHHHH!!!
It's been 4 days since my steroid shot and I'm feeling MORE pain that BEFORE the shot! I've never had this much pain after a steroid shot to the wrist. I didn't even have pain when I hurt myself in the first place! Well, tomorrow I have an appointment scheduled with the pain management specialist at CAST. Fortunately, he can treat tendonitis, as well as, bursitis and migraines! I have planned a few topics for discussion: bursitis and possible chronic dislocation, any testing that could be done to detect this (such as wear on the joints) and whether there might be a sling I can wear on busy days or at night; facet injections for neck/shoulder pain; migraines and occipital/trapezium injections and how long it would take to get in to actually see him for these when I'm status migranosus; and of course, treating my biggest current concern, the tendonitis! I don't see why they wouldn't be able to do another shot right then, they also have x-ray there so they could take another look. I would definitely trust them to give me an unbiased opinion on whether surgery is really needed, and trust their referral to be the best possible, since they don't do any work on hands themselves.
It's been hard to get anything done with the wrist splint and the added pain. I can't write, hold a utensil to eat, forget driving...it's sooo freaking painful! I drop everything! I go to grab my phone and I hit and drop the phone, the remote, the Ipod, the water bottle and anything else that's nearby...stupid left hand! And don't get me started on doing my hair! MY HAIR! I can't even tie a ponytail because I can't twist my hand!
My son has also been going through a crisis period with his Bipolar Disorder. During his last doctor visit we decided that adding a morning dose of Seroquel might help keep his mood more stable. He did well on the samples so we decided to get the script; the insurance company denied the coverage. Since then, about 3 weeks, he has been having mood swings and violent rages. He was in partial hospitalization all last week, but was discharged this week because he had to visit his paternal family. I know he doesn't like being out-of-control, and it hurts me to see him like this. It is a daily struggle with him, a very exhausting day-in-day-out, because every little things is like going into combat! Asking him today to put away the dishes that yesterday he put away with no trouble or argument, could result in harsh words, yelling, and broken dishes. Perceived wrongs result in threats. And my heart breaks a little more each day because I worry about his future, his safety and the safety of everybody in the house. He's supposed to start school 2 days after he returns from his trip. He'll also have a follow up scheduled with his doctor and therapist. We all know he may need to go back to partial hospitalization...but at least there is a plan in place for his return.
So this past week, when I didn't write...I was physically, emotionally and mentally spent. Having my wrist in a splint and hurting is exhausting and so limiting. Helping my boys pack for their trip did not help. Worrying about my boys just spent me because I tried and tried and tried to figure out how to postpone this vacation so my son could stay in treatment, but between airfare and a cruise it was economically impossible to change. Nevertheless, if he had to be hospitalized, I would let all the travel go in a second! And, I'm sooooo emotionally spent. I locked myself in the bathroom and cried and cried and cried. I cried because I felt powerless, becuase I felt helpless, becuase I felt frustrated. I cried becuase I didn't know what else to do but cry, because I can't always keep it together, because I don't always have the answers. I cried because it's all just too much for me so I surrendered...
...I cried remembering to just let go and let God. To just let things unravel trusting that God's plan for all of us is in place, that everything is as it should be, and that everything will be alright, and He has us all in His hand...
Wednesday, August 1, 2012
Follow up on my wrist...
I wrote previously about my first dislocation. Well, it kept getting more bothersome. Today I wasn't even able to lift cups or use my hand to push thing, like the coffeemaker; mind you, I have a pretty simple run-of-the-mill coffee maker, none of the stainless steel K-cups stuff. So I decided to go to the Urgent Care and have them take a look and do some X-rays. Better safe than sorry. If it was just a sprain then I had lost nothing and my mind would be at ease. But with EDS, nothing could end up being a huge something and require fixing that could end up leading to surgery.
I'm glad I went to the Urgent Care! My wrist is fractured. Not only that, the POP I heard....was the sound of the ligament being torn from my wrist!!! The nurse and doctor kept asking and telling me that I must be in terrible pain. Weird thing is, I'm not! I have some discomfort, but it's more of an inconvenience that anything else. The doctor asked me what pain meds I could take..."None", I said. Then she asked about ibuprofen..."I can't take it or Naproxen", I said. "Then what can you take for the pain?!", she asked..."Just Tylenol" I said...."Does it help?"she asked..."It's going to have to" I said. LOL. She gave me a referral for an orthopedic specialist and said it was important they see me because of the torn ligament..."it might be serious". I explained to the doctor about the frequent bursitis in my shoulder and my thought that maybe I was dislocating through the night and didn't know it. Her thought was that because I'm a pretty advanced case of EDS and have so much degeneration, I was probably a chronic dislocator and didn't know it. She said, "I'm more surprised that you say you HAVEN'T dislocated or broken anything before. This is a pretty serious injury. And, I don't doubt that you are dislocating through the night." WOW, chronic dislocator? Serious injury? please no more surgery...
All I can say is, I'm sooo glad I had hypnosis! I've heard about how painful fractures, breaks, and torn muscles and ligaments can be, even making football players cry. I DID NOT FEEL A THING! And, I'm so glad because that's one more pain that I can do without. Even the bursitis isn't as painful. I still have to take the Robaxin and Flexeril, but the level of pain is somehow more manageable. I'm still going to ask about the shoulder sling though. I think it will make a difference and bring the pain down even more by preventing it.
For now, I was told to keep wearing the wrist splints that I usually wear when my wrists are hurting from the EDS. I just have to wear them all the time as if they where a cast, and they're just as good. The benefit is they don't get hot, sweaty or itchy. I have to admit, I do take them off for a shower but I just don't use that hand. After all, they're removable so why should I cover them with a plastic bag? Let's just make things easier, right? Vacation is also coming so I'll probably take an ace bandage that I can tie really tight so the splint doesn't get wet and start to rust inside.
I'll see the orthopedic specialist on Friday morning and find out what happens from here. They got me in fast!
Tomorrow I have the two week follow up for the acid reflux surgery. The surgeon may get an earful from me. Today I was not able to eat until 3 pm! I tried eating some mashed potatoes earlier, but they cam right back out. I tried drinking Gatorade, but I couldn't swallow. Darn his nurse! This is NOT normal! And why the heck is HE NOT AVAILABLE?!
Let's see what the Universe has in store for me tomorrow...
I'm glad I went to the Urgent Care! My wrist is fractured. Not only that, the POP I heard....was the sound of the ligament being torn from my wrist!!! The nurse and doctor kept asking and telling me that I must be in terrible pain. Weird thing is, I'm not! I have some discomfort, but it's more of an inconvenience that anything else. The doctor asked me what pain meds I could take..."None", I said. Then she asked about ibuprofen..."I can't take it or Naproxen", I said. "Then what can you take for the pain?!", she asked..."Just Tylenol" I said...."Does it help?"she asked..."It's going to have to" I said. LOL. She gave me a referral for an orthopedic specialist and said it was important they see me because of the torn ligament..."it might be serious". I explained to the doctor about the frequent bursitis in my shoulder and my thought that maybe I was dislocating through the night and didn't know it. Her thought was that because I'm a pretty advanced case of EDS and have so much degeneration, I was probably a chronic dislocator and didn't know it. She said, "I'm more surprised that you say you HAVEN'T dislocated or broken anything before. This is a pretty serious injury. And, I don't doubt that you are dislocating through the night." WOW, chronic dislocator? Serious injury? please no more surgery...
All I can say is, I'm sooo glad I had hypnosis! I've heard about how painful fractures, breaks, and torn muscles and ligaments can be, even making football players cry. I DID NOT FEEL A THING! And, I'm so glad because that's one more pain that I can do without. Even the bursitis isn't as painful. I still have to take the Robaxin and Flexeril, but the level of pain is somehow more manageable. I'm still going to ask about the shoulder sling though. I think it will make a difference and bring the pain down even more by preventing it.
For now, I was told to keep wearing the wrist splints that I usually wear when my wrists are hurting from the EDS. I just have to wear them all the time as if they where a cast, and they're just as good. The benefit is they don't get hot, sweaty or itchy. I have to admit, I do take them off for a shower but I just don't use that hand. After all, they're removable so why should I cover them with a plastic bag? Let's just make things easier, right? Vacation is also coming so I'll probably take an ace bandage that I can tie really tight so the splint doesn't get wet and start to rust inside.
I'll see the orthopedic specialist on Friday morning and find out what happens from here. They got me in fast!
Tomorrow I have the two week follow up for the acid reflux surgery. The surgeon may get an earful from me. Today I was not able to eat until 3 pm! I tried eating some mashed potatoes earlier, but they cam right back out. I tried drinking Gatorade, but I couldn't swallow. Darn his nurse! This is NOT normal! And why the heck is HE NOT AVAILABLE?!
Let's see what the Universe has in store for me tomorrow...
Monday, July 30, 2012
On the Role of Family and Friends
I want to discuss the role of family and friends is, when an individual, a family member or a close friend, is facing a chronic and debilitating illness?
Being Hispanic, I have beliefs of what family should and should and behave like. I also have past experiences that affect, distort or guide what my views of what I feel and believe a nuclear family and extended family should and should not behave like. The first thing that I would expect from family is caring. Caring as in showing interest, attitude and support. Chronic illness will be around for a long time, it's here for life. It's not the flu, and it's not a transitory issue like a one time knee surgery. If someone in the family had cancer, everyone would be around with heartfelt wishes, wanting updates, bringing food, picking up the kids so mom (or dad) can rest, so parents can have some time to themselves, and so on. Believe me, I'm not making light on the risks and pain of cancer. But cancer is "visible", people know what it is and that it could be terminal. Maybe because EDS is an invisible illness, and the mortality rate depends on the level of care and what organs the illness attacks, family forgets. In the beginning months, they call and asks how you are doing, but then they're not interested anymore. This is taking too long and there really isn't going to be an end goal for treatment, it's also too complicated with so many doctor's involved in your care and you're not going to get any better; there are not going to be any "visible" results. So, there are no more calls for updates. There are no calls to ask about the pain. No calls about what the doctor said. No calls about new treatments you're trying. No more calls about the next surgery, before or after after all, you've had so many of them. YOU ARE TOO MUCH TROUBLE FOR THEM! You have your own family (nuclear family that is) let them worry about you. There is no "let me take the kids so you can rest", if there ever was that to begin with. However, unlike the family member that can so easily let it go, the chronic illness, degeneration, disability and pain is very much present in your life day-after-day-after-day, You can't choose to let it go and not be bothered with it. So you keep feeling lonelier and lonelier.
Let me give you an example: a family member recently texted me for something and I replied that I couldn't talk now I had to get a few things done before my surgery. My family member wrote back "OK" but never asked what the surgery was for or when it was scheduled to happen. NICE!
Fortunately my nuclear family is strong. My husband and I share similar beliefs and values and our family is what we like it to be. For example, we don't drink and don't believe in having the kids in environments where there are drinkers. We're also happy to stay home and share quiet evenings together, rather than attend parties. We also share the belief that, we have children so we are responsible for caring for them. Therefore, we don't often ask for childcare, from friends or family except on the rare occasion of an emergency; plus the kids are older and usually don't require it anyway. These are just our beliefs. We are in no way perfect, it's just who we are and you may disagree. However, dealing with a chronic illness is tiring and stressful, not only for me, but for the whole family. Time off would be a blessing, but because people are not interested in the invisible illness there is no break, no time off, no respite. There is no OFFER for time off because that would mean having to ask how you are, becoming involved with you, even for a moment. Not to mention, you have an invisible illness, so WHY do you need, no, why you deserve some time off ?
Another example: one of my family members becomes upset, or does not want to spend time with the kids, because of our values and the values we are raising the kids with, are not in agreement with the family member's values; this family member wishes to impose their values and discord ensues.
Regarding friends, first you have to differentiate between friends and acquaintances. Friends stick with you acquaintances just occasionally call if they happen to see you or think of you. Friends are not family, therefore they do not have an obligation to you. They have lives and problems of their own,and should be allowed some latitude regarding if and how often they check in, and they definitely do not needed to "babysit". If you are fortunate, some friends can even become as close or even closer than family. However, through this process or, voyage of EDS, I have lost many friends and had to "refile" them under acquaintances or colleagues. This is partially die to not having the energy to meet with them in bars and other social environments. I don't drink and it would cause to much pain afterward. In short, I would be a drag to them and it would cause too much pain for me. I don't "entertain" at home because clean up would also be too much hassle and exhausting. I also get the feeling they may think I'm not exercising the "power of positive optimism" enough, as if this alone would make a chronic and degenerative illness magically disappear. Sadly, for them, I subscribe to depressive realism (read more on this in the book First Rate Madness, excellent book) so that I am realistically prepared for every circumstance. So the calls and interest dwindles from those who no longer have time to be my friends, and now live the normal life of 30-somethings. We do have a couple that visit every few months and who we vacation with. They share some of our interests and are happy visiting our home; they also help with the clean-up! I've also had the pleasure of turning a colleague or acquaintance into a friend. The times we talk on the phone, email back and forth, or have visited together have been delightful. And that's all it takes. No babysitting needed! Just some interest without the need to take on my woes. Some human interaction, some humanity, some empathy and some warmth. Come over for a movie, some coffee, a game of scrabble, some gossip...that doesn't hurt and it is sooooo MEANINGFUL and VALUABLE!
I may sound a little negative, even angry. Maybe I am. It's hard to know there are people that need support but they are abandoned because they "don't look sick" or people don't want to get involved, or just the general feeling that "it's just taking too long" so interest drops off and people that are hurting are abandoned. That one's the best! What is too long? We have to keep living with this every day for the rest of our lives and so do our families. We are frustrated and so are our families. We get tired or going to doctors, trying new therapies, new medicines, more surgeries, new allergic reactions....so are our families. We would love to say we're sick of it and we're done with being sick too!
When I grew up in Puerto Rico, this was just something we did, we cared for one another. The neighbor and family we brought over the plate of rice and beans and took the kids over to their house so mom could eat a hot plate of food and take a shower in peace. Family would come over, even once a month, just to talk, and they would call. This is what I grew up, but it's no longer the norm, here or in Puerto Rico. This is a hard concept to accept.
Many times doctor's and therapist suggest, "use family as support, keep social ties", easier said than done, they don't always stick around.
Hoping and praying....
Being Hispanic, I have beliefs of what family should and should and behave like. I also have past experiences that affect, distort or guide what my views of what I feel and believe a nuclear family and extended family should and should not behave like. The first thing that I would expect from family is caring. Caring as in showing interest, attitude and support. Chronic illness will be around for a long time, it's here for life. It's not the flu, and it's not a transitory issue like a one time knee surgery. If someone in the family had cancer, everyone would be around with heartfelt wishes, wanting updates, bringing food, picking up the kids so mom (or dad) can rest, so parents can have some time to themselves, and so on. Believe me, I'm not making light on the risks and pain of cancer. But cancer is "visible", people know what it is and that it could be terminal. Maybe because EDS is an invisible illness, and the mortality rate depends on the level of care and what organs the illness attacks, family forgets. In the beginning months, they call and asks how you are doing, but then they're not interested anymore. This is taking too long and there really isn't going to be an end goal for treatment, it's also too complicated with so many doctor's involved in your care and you're not going to get any better; there are not going to be any "visible" results. So, there are no more calls for updates. There are no calls to ask about the pain. No calls about what the doctor said. No calls about new treatments you're trying. No more calls about the next surgery, before or after after all, you've had so many of them. YOU ARE TOO MUCH TROUBLE FOR THEM! You have your own family (nuclear family that is) let them worry about you. There is no "let me take the kids so you can rest", if there ever was that to begin with. However, unlike the family member that can so easily let it go, the chronic illness, degeneration, disability and pain is very much present in your life day-after-day-after-day, You can't choose to let it go and not be bothered with it. So you keep feeling lonelier and lonelier.
Let me give you an example: a family member recently texted me for something and I replied that I couldn't talk now I had to get a few things done before my surgery. My family member wrote back "OK" but never asked what the surgery was for or when it was scheduled to happen. NICE!
Fortunately my nuclear family is strong. My husband and I share similar beliefs and values and our family is what we like it to be. For example, we don't drink and don't believe in having the kids in environments where there are drinkers. We're also happy to stay home and share quiet evenings together, rather than attend parties. We also share the belief that, we have children so we are responsible for caring for them. Therefore, we don't often ask for childcare, from friends or family except on the rare occasion of an emergency; plus the kids are older and usually don't require it anyway. These are just our beliefs. We are in no way perfect, it's just who we are and you may disagree. However, dealing with a chronic illness is tiring and stressful, not only for me, but for the whole family. Time off would be a blessing, but because people are not interested in the invisible illness there is no break, no time off, no respite. There is no OFFER for time off because that would mean having to ask how you are, becoming involved with you, even for a moment. Not to mention, you have an invisible illness, so WHY do you need, no, why you deserve some time off ?
Another example: one of my family members becomes upset, or does not want to spend time with the kids, because of our values and the values we are raising the kids with, are not in agreement with the family member's values; this family member wishes to impose their values and discord ensues.
Regarding friends, first you have to differentiate between friends and acquaintances. Friends stick with you acquaintances just occasionally call if they happen to see you or think of you. Friends are not family, therefore they do not have an obligation to you. They have lives and problems of their own,and should be allowed some latitude regarding if and how often they check in, and they definitely do not needed to "babysit". If you are fortunate, some friends can even become as close or even closer than family. However, through this process or, voyage of EDS, I have lost many friends and had to "refile" them under acquaintances or colleagues. This is partially die to not having the energy to meet with them in bars and other social environments. I don't drink and it would cause to much pain afterward. In short, I would be a drag to them and it would cause too much pain for me. I don't "entertain" at home because clean up would also be too much hassle and exhausting. I also get the feeling they may think I'm not exercising the "power of positive optimism" enough, as if this alone would make a chronic and degenerative illness magically disappear. Sadly, for them, I subscribe to depressive realism (read more on this in the book First Rate Madness, excellent book) so that I am realistically prepared for every circumstance. So the calls and interest dwindles from those who no longer have time to be my friends, and now live the normal life of 30-somethings. We do have a couple that visit every few months and who we vacation with. They share some of our interests and are happy visiting our home; they also help with the clean-up! I've also had the pleasure of turning a colleague or acquaintance into a friend. The times we talk on the phone, email back and forth, or have visited together have been delightful. And that's all it takes. No babysitting needed! Just some interest without the need to take on my woes. Some human interaction, some humanity, some empathy and some warmth. Come over for a movie, some coffee, a game of scrabble, some gossip...that doesn't hurt and it is sooooo MEANINGFUL and VALUABLE!
I may sound a little negative, even angry. Maybe I am. It's hard to know there are people that need support but they are abandoned because they "don't look sick" or people don't want to get involved, or just the general feeling that "it's just taking too long" so interest drops off and people that are hurting are abandoned. That one's the best! What is too long? We have to keep living with this every day for the rest of our lives and so do our families. We are frustrated and so are our families. We get tired or going to doctors, trying new therapies, new medicines, more surgeries, new allergic reactions....so are our families. We would love to say we're sick of it and we're done with being sick too!
When I grew up in Puerto Rico, this was just something we did, we cared for one another. The neighbor and family we brought over the plate of rice and beans and took the kids over to their house so mom could eat a hot plate of food and take a shower in peace. Family would come over, even once a month, just to talk, and they would call. This is what I grew up, but it's no longer the norm, here or in Puerto Rico. This is a hard concept to accept.
Many times doctor's and therapist suggest, "use family as support, keep social ties", easier said than done, they don't always stick around.
Hoping and praying....
Saturday, July 28, 2012
On my first dislocation, communication with my Aspie son and...a better week?
I just dislocated, or partially dislocated, my first joint! At least the first that I am aware of. This morning I woke up with a sore wrist, my right one. I could feel it was sore before I actually got out bed, but thought I probably just stressed my hands the day before, so I didn't really think much of it. It would just be a wrist splint day. I sat up in bed and waited for the initial vertigo to pass and when I was ready put some pressure on my hands/wrists to get up. Then I heard it, POP! I still didn't think much of it, other than it sounded different than the usual pops and crackles in the morning as things fall into place. It also felt different from the usual initial movement of things falling into place. It felt forced, harder and somewhat grind-ier. Then I felt the pain.
The pain from a dislocation/subluxation varies and managing a dislocation is not like in the movies, you don't have to bang yourself against walls and you don't necessarily have to rush to the Emergency Department. It's all going to depend on the joint, and on the nerves, tendons and muscles affected; then, whether there is damage involving any of these, and whether the joint is worn down so that it doesn't cause much pain at all. I also have a threshold for pain tolerance so, in my favor, I can probably cope with it better than most. I also don't whether the joint went in or came out, so I'll have to monitor the situation for the next few weeks and see if it gets any worse. Even if the joint went in and readjusted itself, the pain could last for weeks because it causes inflammation to the surrounding, regardless of whether there is damage or not. So, if the joint had popped back into place and I went to see my Ortho, he would not be able to see anything on an x-ray and I would seem like crazy person (LOL). Actually, my Ortho knows and understand that EDS causes a lot of pain and "weird" things to happen. (Most doctor's than know about EDS are actually quite fascinated about us) He just makes sure that there is no permanent damage that needs to be attended to and "attempts" to find something that will offer some pain relief.
I said it was the first dislocation/subluxation that I was aware of because I suspect that this is what is happening when I get bursitis and muscle spasms in my shoulder. They usually happen after a day when I have been active and have stressed my arms and shoulders. And, I've always thought that I've been hurting myself through the night and wake up with the pain. It also lasts for weeks on end and suddenly goes away. So my thought is that my shoulder dislocates/subluxates through the night, particularly after a day when I have stressed my shoulder; and it's always the left one. That is definitely something that I need to bring up with the Ortho, he may be able to prescribe some sort of sling to use through the day or even at night to prevent this from happening so often...and it is soooo often!
Dislocations/Subluxations was a subject I had to bring up with my son. He has never had one to my knowledge either. He also presents a challenge on two fronts. First, with Asperger's communication is difficult for him. He doesn't always let me know he is feeling pain, so I have to stay in-tune with his body language and ask him what he's feeling. A few days ago I noticed he kept laying on his belly and pulling his arms back. He was having back pain but never told me! When I asked him if he needed Tylenol, he said no. I had to tell him that, yes he needed Tylenol because this was a painful condition and I could tell he was in a lot of pain. Within a half hour of taking the Tylenol he was back to being his cheery self and interacting with friends. I also ordered some rubber-soled flip-flops with arch support that would offer cushioning so that he could be outside and wear all-day in the house. I can't walk barefooted anymore because it causes incredible back-pain; flat shoes and flip-flops like the one's at Old Navy do not offer support either and end up causing pain. Trust me, THICK RUBBER SOLE WITH ARCH SUPPORT! http://www.amazon.com/gp/product/B000KJ0TQQ/ref=oh_details_o00_s00_i00
I also let my son know about that distinctive POP and the pain he may feel afterward. I let him know that is something he needs to let me know about immediately so we can determine if he needs to be taken to the hospital or just monitored, but he needs to use his words!
The second situation, is that he has Bipolar Disorder and occasionally has rages. This is a risk factor because he does not measure the intensity with which he throws things, hits the wall or hurts himself. It would only be after he calms down that we could evaluate any damage to his body and it could possibly be extreme, such as dislocation/subluxationg several joints. The best we can do in this case is: make sure his medications are managed adequately, use his safety plan, call emergency services if necessary, and make sure my son is aware of the risks he is taking and have him actively and pro-actively participate in self-management for both conditions.
In the last post I had written about my allergic reaction to the surgical tape. That also means that I won't be able to use the physio-tape anymore. I found something that might be a suitable replacement, a shoulders-back posture support. http://www.amazon.com/gp/product/B0019SW8DE/ref=oh_details_o01_s00_i00
I tried it the first day I got it just to make sure it fit, but haven't had a chance to properly use it. I won't lie it felt pretty uncomfortable, but I attribute that to already being uncomfortable because of the allergic reaction and the pain and fatigue from using my accessory muscles. I'm waiting to feel better to give it a proper try, then I'll give it my own full review; the Amazon reviews are pretty good.
I'm still on a pretty limited diet even 12 days post-surgery. I've tried to add new foods slowly but most of the time it's a disaster! I tried white rice yesterday, just plain rice, it ended up coming right back out; grapes almost did the same thing. I ended taking a Zofran and going to bed to let it pass. I also think I'm lactose intolerant and milk products like yogurt and ice cream also cause heartburn (I miss yogurt). So I'm still sticking to Jell-o, fruit cocktail, frozen ices, apple juice...Today I tried some frosted shredded wheat, just a few, and I let them completely dissolve in Lactose-free milk. My son uses Lactose-free milk because it causes an allergic reaction that turns into asthma, so we had it in the house. The frosted shredded wheat has been okay. I'm so happy! I loooove frosted shredded wheat! It has the most fiber of any cereal (more that Fiber One, Granola, Kashi, Honey Bunches of Oats, and Chex) and less sugar.
On that note, through the Ehlers-Danlos National Foundation I learned about something called idiopathic anaphylaxis and mast cell response http://www.ncbi.nlm.nih.gov/pubmed/17493503
which has been linked to EDS. I have to read more on it, but it may explain why my son and I have all of these allergic reactions!
Well, all-in-all I've had a pretty miserable week. I do have the Olympics to keep me entertained, I'm particularly interested in swimming and gymnastics, sports I participated in but EDS took away from me, even as a child when we didn't know what EDS was. They're absolutely beautiful sports which demonstrate the beautiful and amazing, side of hypermobility as opposed to Ehlers-Danlos which is hypermobility with pain. I also have the Opera to look forward to tonight, I'll be watching La Traviata! I'll write a review that :) Anyway, tomorrow is Sunday and a new week begins, a chance to start fresh.
In the meantime...
The pain from a dislocation/subluxation varies and managing a dislocation is not like in the movies, you don't have to bang yourself against walls and you don't necessarily have to rush to the Emergency Department. It's all going to depend on the joint, and on the nerves, tendons and muscles affected; then, whether there is damage involving any of these, and whether the joint is worn down so that it doesn't cause much pain at all. I also have a threshold for pain tolerance so, in my favor, I can probably cope with it better than most. I also don't whether the joint went in or came out, so I'll have to monitor the situation for the next few weeks and see if it gets any worse. Even if the joint went in and readjusted itself, the pain could last for weeks because it causes inflammation to the surrounding, regardless of whether there is damage or not. So, if the joint had popped back into place and I went to see my Ortho, he would not be able to see anything on an x-ray and I would seem like crazy person (LOL). Actually, my Ortho knows and understand that EDS causes a lot of pain and "weird" things to happen. (Most doctor's than know about EDS are actually quite fascinated about us) He just makes sure that there is no permanent damage that needs to be attended to and "attempts" to find something that will offer some pain relief.
I said it was the first dislocation/subluxation that I was aware of because I suspect that this is what is happening when I get bursitis and muscle spasms in my shoulder. They usually happen after a day when I have been active and have stressed my arms and shoulders. And, I've always thought that I've been hurting myself through the night and wake up with the pain. It also lasts for weeks on end and suddenly goes away. So my thought is that my shoulder dislocates/subluxates through the night, particularly after a day when I have stressed my shoulder; and it's always the left one. That is definitely something that I need to bring up with the Ortho, he may be able to prescribe some sort of sling to use through the day or even at night to prevent this from happening so often...and it is soooo often!
Dislocations/Subluxations was a subject I had to bring up with my son. He has never had one to my knowledge either. He also presents a challenge on two fronts. First, with Asperger's communication is difficult for him. He doesn't always let me know he is feeling pain, so I have to stay in-tune with his body language and ask him what he's feeling. A few days ago I noticed he kept laying on his belly and pulling his arms back. He was having back pain but never told me! When I asked him if he needed Tylenol, he said no. I had to tell him that, yes he needed Tylenol because this was a painful condition and I could tell he was in a lot of pain. Within a half hour of taking the Tylenol he was back to being his cheery self and interacting with friends. I also ordered some rubber-soled flip-flops with arch support that would offer cushioning so that he could be outside and wear all-day in the house. I can't walk barefooted anymore because it causes incredible back-pain; flat shoes and flip-flops like the one's at Old Navy do not offer support either and end up causing pain. Trust me, THICK RUBBER SOLE WITH ARCH SUPPORT! http://www.amazon.com/gp/product/B000KJ0TQQ/ref=oh_details_o00_s00_i00
I also let my son know about that distinctive POP and the pain he may feel afterward. I let him know that is something he needs to let me know about immediately so we can determine if he needs to be taken to the hospital or just monitored, but he needs to use his words!
The second situation, is that he has Bipolar Disorder and occasionally has rages. This is a risk factor because he does not measure the intensity with which he throws things, hits the wall or hurts himself. It would only be after he calms down that we could evaluate any damage to his body and it could possibly be extreme, such as dislocation/subluxationg several joints. The best we can do in this case is: make sure his medications are managed adequately, use his safety plan, call emergency services if necessary, and make sure my son is aware of the risks he is taking and have him actively and pro-actively participate in self-management for both conditions.
In the last post I had written about my allergic reaction to the surgical tape. That also means that I won't be able to use the physio-tape anymore. I found something that might be a suitable replacement, a shoulders-back posture support. http://www.amazon.com/gp/product/B0019SW8DE/ref=oh_details_o01_s00_i00
I tried it the first day I got it just to make sure it fit, but haven't had a chance to properly use it. I won't lie it felt pretty uncomfortable, but I attribute that to already being uncomfortable because of the allergic reaction and the pain and fatigue from using my accessory muscles. I'm waiting to feel better to give it a proper try, then I'll give it my own full review; the Amazon reviews are pretty good.
I'm still on a pretty limited diet even 12 days post-surgery. I've tried to add new foods slowly but most of the time it's a disaster! I tried white rice yesterday, just plain rice, it ended up coming right back out; grapes almost did the same thing. I ended taking a Zofran and going to bed to let it pass. I also think I'm lactose intolerant and milk products like yogurt and ice cream also cause heartburn (I miss yogurt). So I'm still sticking to Jell-o, fruit cocktail, frozen ices, apple juice...Today I tried some frosted shredded wheat, just a few, and I let them completely dissolve in Lactose-free milk. My son uses Lactose-free milk because it causes an allergic reaction that turns into asthma, so we had it in the house. The frosted shredded wheat has been okay. I'm so happy! I loooove frosted shredded wheat! It has the most fiber of any cereal (more that Fiber One, Granola, Kashi, Honey Bunches of Oats, and Chex) and less sugar.
On that note, through the Ehlers-Danlos National Foundation I learned about something called idiopathic anaphylaxis and mast cell response http://www.ncbi.nlm.nih.gov/pubmed/17493503
which has been linked to EDS. I have to read more on it, but it may explain why my son and I have all of these allergic reactions!
Well, all-in-all I've had a pretty miserable week. I do have the Olympics to keep me entertained, I'm particularly interested in swimming and gymnastics, sports I participated in but EDS took away from me, even as a child when we didn't know what EDS was. They're absolutely beautiful sports which demonstrate the beautiful and amazing, side of hypermobility as opposed to Ehlers-Danlos which is hypermobility with pain. I also have the Opera to look forward to tonight, I'll be watching La Traviata! I'll write a review that :) Anyway, tomorrow is Sunday and a new week begins, a chance to start fresh.
In the meantime...
Thursday, July 26, 2012
Post-surgery Complication
I've been away for a little while because I've had a complication with the surgery. Nothing terribly serious but still very uncomfortable and worrysome.
About 3 days ago, 8 days post-surgery, my abdominal wall, or to put it plainly, my stomach started to feel itchy. Very, very itchy. So itchy I couldn't stand it! The only way I could get enough relief in order to sleep was laying sideways but slightly on top of the wounds that were the most itchy.
However, the next morning, day 9, the surgical tape had fallen off 2 the wounds. I panicked! One was still slightly open, the other was closed, but the surrounding tissue on both looked red and irritated and it was hot. I decided I was going to wait before calling the doctor's office and try to care of the wounds myself. I figured if I called they would just tell me to go to the hospital and I wasn't ready to go back so soon. So, knowing that I'm quite good at taking care of wounds, I cleaned them with alcohol and applied Neosporin 3 times a day. I attempted to cover them with band-aids to protect them, but that just irritated them more so I left them open to air out. As the day progressed I found that I was compensating with my upper chest, shoulders and neck to keep my abdominal wall extended and prevent my stomach folding because it hurt. Because of compensating, by the end of the day the pain in my neck and shoulders was unbearable. I was exhausted. I went to bed with an icepack and was asleep by 9pm!
*Note: When I say the wound was slightly open, I mean slightly, it was not a gash, nor a puncture wound. However, in Ehlers--Danlos we run the risk of dehiscence, were surgical wounds split open, not just immediately after surgery, but even years after surgery. Because this wound was even slightly open, there was a legitimate risk of this type of complication.
On day 10, at exactly 8:30 am I called the surgeon's office. The receptionist too a message and said the nurse would call me back. At 1pm the nurse had not called me back. I decided that it was time to take action. I called my primary care physician, who first recognized and diagnosed me with the Ehlers-Danlos and asked him to evaluate the incisions. Ironically, he said the wound itself was healing well, however, I was having an allergic reaction to the surgical tape! WHAT????? He showed me the perfectly square area surrounding the incision that was irritated, that's why the tape fell of! He told me not to use alcohol on it anymore which might irritate it anymore, just soap water, and Neosporin no more than twice a day, just to keep it moisturized and avoid the dehiscence risk and allow it to be aired out.
I spoke with the surgeon's nurse around 3:30 pm and let her know about my conversation with my PCP. She mostly agreed with it. I told her my biggest concern was dehiscence related with Ehlers-Danlos. She understood and also asked "had you been treated with the Steri-strips before?" I said no, and explained that for the spine fusion glue had been used. She said she would add the new allergy to the Steri-strips on my file which updates the hospital too (all of UC), and said I should let others in the future know that I have an allergy to the surgery tape. She would also put me on theNurse Practioner's client list for Monday as "to call" so that she would follow up with me because I was a high-risk patient; but if the wound opened during the weekend, I should call their office number and select the option to contact the doctor for a medical emergency.
Right now I'm in a lot of pain, but not becuase of the surgery, it's more of an exhausted pain (new pain scale definition) I can feel it in my shoulder, neck, chest and lower back...so everywhere other than my stomach :) I'm having to use all of these accesory muscles and it's wearing me down. I'm generally all-around-downright-miserable and that's making me miserable. As for my mood, I'm pretty crabby and somewhere between wanting to be left alone to die (not literally) and not wanting to be left alone becuase I would think too much about my pain. As for my family...when mamma ain't happy ain't nobody happy!
About 3 days ago, 8 days post-surgery, my abdominal wall, or to put it plainly, my stomach started to feel itchy. Very, very itchy. So itchy I couldn't stand it! The only way I could get enough relief in order to sleep was laying sideways but slightly on top of the wounds that were the most itchy.
However, the next morning, day 9, the surgical tape had fallen off 2 the wounds. I panicked! One was still slightly open, the other was closed, but the surrounding tissue on both looked red and irritated and it was hot. I decided I was going to wait before calling the doctor's office and try to care of the wounds myself. I figured if I called they would just tell me to go to the hospital and I wasn't ready to go back so soon. So, knowing that I'm quite good at taking care of wounds, I cleaned them with alcohol and applied Neosporin 3 times a day. I attempted to cover them with band-aids to protect them, but that just irritated them more so I left them open to air out. As the day progressed I found that I was compensating with my upper chest, shoulders and neck to keep my abdominal wall extended and prevent my stomach folding because it hurt. Because of compensating, by the end of the day the pain in my neck and shoulders was unbearable. I was exhausted. I went to bed with an icepack and was asleep by 9pm!
*Note: When I say the wound was slightly open, I mean slightly, it was not a gash, nor a puncture wound. However, in Ehlers--Danlos we run the risk of dehiscence, were surgical wounds split open, not just immediately after surgery, but even years after surgery. Because this wound was even slightly open, there was a legitimate risk of this type of complication.
On day 10, at exactly 8:30 am I called the surgeon's office. The receptionist too a message and said the nurse would call me back. At 1pm the nurse had not called me back. I decided that it was time to take action. I called my primary care physician, who first recognized and diagnosed me with the Ehlers-Danlos and asked him to evaluate the incisions. Ironically, he said the wound itself was healing well, however, I was having an allergic reaction to the surgical tape! WHAT????? He showed me the perfectly square area surrounding the incision that was irritated, that's why the tape fell of! He told me not to use alcohol on it anymore which might irritate it anymore, just soap water, and Neosporin no more than twice a day, just to keep it moisturized and avoid the dehiscence risk and allow it to be aired out.
I spoke with the surgeon's nurse around 3:30 pm and let her know about my conversation with my PCP. She mostly agreed with it. I told her my biggest concern was dehiscence related with Ehlers-Danlos. She understood and also asked "had you been treated with the Steri-strips before?" I said no, and explained that for the spine fusion glue had been used. She said she would add the new allergy to the Steri-strips on my file which updates the hospital too (all of UC), and said I should let others in the future know that I have an allergy to the surgery tape. She would also put me on theNurse Practioner's client list for Monday as "to call" so that she would follow up with me because I was a high-risk patient; but if the wound opened during the weekend, I should call their office number and select the option to contact the doctor for a medical emergency.
Right now I'm in a lot of pain, but not becuase of the surgery, it's more of an exhausted pain (new pain scale definition) I can feel it in my shoulder, neck, chest and lower back...so everywhere other than my stomach :) I'm having to use all of these accesory muscles and it's wearing me down. I'm generally all-around-downright-miserable and that's making me miserable. As for my mood, I'm pretty crabby and somewhere between wanting to be left alone to die (not literally) and not wanting to be left alone becuase I would think too much about my pain. As for my family...when mamma ain't happy ain't nobody happy!
Monday, July 23, 2012
Valuable list of Specialist in Ohio
I've been thinking about all of the medical professionals involved in my care. In fact, the last time I went to the Pulmo he said "you have a lot of people" referring to this. I responded "I think the only doctors I don't have are a cardiologist and a podiatrist", only half joking. He offered to refer me to some, also only half joking. But,with EDS as one thing gets "fixed" another breaks down. So, for anyone living in Cincinnati or surrounding areas, I'm adding the names of some medical professionals here, with whom I feel extremely comfortable. I know how valuable word of mouth is, but this is especially true among the EDS community. Doctors don't advertise they treat EDS and it's hard, impossible to know if they have good bedside manners, if they will include you in treatment planning, if there is a long wait in there office, if there is a long wait for an appointment (when you have an issue now!). I didn'[t know who Dr. Tinkle was until I got referred for EDS and there was a 6 month wait for an evaluation, but Dr. Nielson was available in a week and he turned out to be excellent! Knowing the people on this list are knowledgeable and sensitive to what we experience day-by-day, even though they can't begin to imagine what that truly is, and knowing they can take care of our special needs is extremely valuable indeed! So here is my list:
Primary Care: Michael Jones, CNP. Hamilton, OH
Don't be put off with him being a Certified Nurse Practitioner, he is well versed in EDS because his sister has it. He can offer referrals and do preliminary testing so you can have results in hand by your first appointment.
Rheumatology: Dr. Louis Flashpohler, Norwood, OH, and Christ Hospital, Cincinnati, OH. Listens carefully and ponders information. Likes to think about treatment carefully before using unnecessary meds. Keeps appointments tight (every 2 months) to avoid deterioration.
Center for Advanced Spine Technologies for Orthopedics, Spine, Pain Management: Blue Ash, OH and Erlanger, KY.
Dr. Nael Shanti, Surgeon. Wonderful, sweetheart of a man! So, so, sooooo patient!
Dr. Abubakar Durrani, Surgeon. Specializes in precision spine surgery. I haven't been seen by him but if C3 herniates and I stay with CAST for treatment, he would be the one working at that level. Just know that there will be a long wait to see him, and a long wait in the waiting room. People travel from all over the US to see him; he's that good.
Dr. Zeeshan Tayeb, Pain Management. Great sense of humor, puts you at ease while he's sticking needles in you, LOL! Remembers who you are and what he did to you (what needles he stuck in you), LOL. Wonderful!
Gastroenterology: Dr. Stephen Kucera, Cincinnati, OH and West Chester, OH. Knows EDS and how it affects the gastro system. Funny and likes to talk things out, but goes straight to the point.
Surgery: Dr. Thomas Husted, West Chester, OH. Keeps you well informed, good sense of humor puts you at ease, very conservative in favor of the patient, especially in EDS.
ENT: Dr. Alfred Sassler. Knows issues that occur in EDS such as acid reflux, TMJ, and inner ear hypermobility. May not have the bedside manners though.
Psychiatry: Dr. Robert Simms, Fairfield, OH. Conservative in treatment, doesn't like to over medicate. Passionate in wanting to help the patient so he listens and takes input about where the patients want to go with treatment.
Counseling: Tracy Mert, Charles Roberts, Diane Zeiger.
Migraines: Dr. Lisa Mannix. Does not accept any insurance. Doesn't specialize in EDS. Can do Botox and nerve blocks.
Migraines and Dysautonomia: Dr. Vincent Martin. Specialized in EDS, even co-wrote article with Dr. Tinkle about occurrence of migraines in EDS. Treats underlying dehydration and dysautonomia which co-occur with EDS and contribute to migraine and auras.
Geneticist: Dr. Derek Nielson from Dr. Tinkle's Office. VERY through in explaining what EDS and co-occurring conditions. Can get in to see him in about 2 weeks, rather than waiting 6 months to see Dr. Tinkle. Dr. Tinkle is leaving Cincinnati Children's and going to Chicago so he Dr. Nielson is a good option. Will offer all referrals and set goals of treatment, will make appointment for 6 months to see progress/degeneration.
Physical Therapy Specializing in Hypermobility: Kathy Loveless, South Lebanon, OH. Kathy is the one that uses the physio-tape I mentioned in an earlier post. Focuses on strengthening core with Pilates type movement and learning diaphragmatic breathing. Very knowledgeable in EDS and PT.
Pulmonologist: Dr. Richard Sternberg, Hamilton, OH. Knowledgeable in EDS and co-occurring respiratory conditions, such as collapsed bronchioles/alveoli, or reflux-disease that may be imitating a respiratory condition. Believed me when I said that I get flu shot and get the flu!
Some doctors that I have not had positive experiences with are:
Rheumatology: Dr. Surabhi Agarwal, Christ Hospital, Cincinnati, OH. Diagnosed as Fibromyalgia, Depression and anxiety. After reading her notes, she continuously said that I was anxious at her visits! I don't have Fibro trigger points and meds for Fibro have offered no help...it's NOT Fibro!
Rheumatology: Dr. Sri Koneru, Group Associates, Various Offices throughout OH. Offered Flexeril for sleep, when I let her know I still hurt and couldn't sleep, she discontinued the Flexeril and didn't pursue any other options.
Cleveland Clinic: Rheumatology and Migraine clinics were not of much help and got nowhere near my diagnosis. They suggested I get off ALL of my meds and never take anything again because "it COULD POSSIBLY cause a headache" while ignoring pain and osteoarthritis degeneration of the spine!
Gastroenterology: Dr. Pradeep Bekal, took 3 phone calls while I was on examining table, then went on to explain that he had to take the phone calls because he was really important! When I called for refill of Amitiza to treat gastroparesis (colonic inertia) they sent samples through which took 4 days! No bowel movement and pain for 4 days and then wait for the med to work!
General Surgery: Dr. Louis Thibideaux, he was fine with good bedside manner, however there was always a 1 hour waiting time in his office even with and appointment. Not someone to go back to.
As of now, I'm still looking for a gynecologist that is knowledgeable in EDS. The GYN I have now is okay but knows nothing of EDS. The fellows and residents he was training had at least heard of it but he hadn't! PCOS is linked to EDS and can cause referred back pain. I've also been having too many issues even having the Mirena so it's time for a second opinion but only with someone who is going to be of help, not just anyone. So I added a post-it note to my agenda to remind myself to ask Dr. Martin and Dr. Flashpohler for referrals. I'll then look up the doctors they offer and make my choice. We EDS'ers HAVE to be picky!!!
All joking aside, I'm fortunate that I haven't needed a cardiologist, endocrinologist, hematologist, dermatologist, neurosurgeon, oncologist, nephrologist, podiatrist, and I'm sure many other ~ists and sub~ists. Let's hope I NEVER do!!!
Let's see what the Universe has in store for me today!
Primary Care: Michael Jones, CNP. Hamilton, OH
Don't be put off with him being a Certified Nurse Practitioner, he is well versed in EDS because his sister has it. He can offer referrals and do preliminary testing so you can have results in hand by your first appointment.
Rheumatology: Dr. Louis Flashpohler, Norwood, OH, and Christ Hospital, Cincinnati, OH. Listens carefully and ponders information. Likes to think about treatment carefully before using unnecessary meds. Keeps appointments tight (every 2 months) to avoid deterioration.
Center for Advanced Spine Technologies for Orthopedics, Spine, Pain Management: Blue Ash, OH and Erlanger, KY.
Dr. Nael Shanti, Surgeon. Wonderful, sweetheart of a man! So, so, sooooo patient!
Dr. Abubakar Durrani, Surgeon. Specializes in precision spine surgery. I haven't been seen by him but if C3 herniates and I stay with CAST for treatment, he would be the one working at that level. Just know that there will be a long wait to see him, and a long wait in the waiting room. People travel from all over the US to see him; he's that good.
Dr. Zeeshan Tayeb, Pain Management. Great sense of humor, puts you at ease while he's sticking needles in you, LOL! Remembers who you are and what he did to you (what needles he stuck in you), LOL. Wonderful!
Gastroenterology: Dr. Stephen Kucera, Cincinnati, OH and West Chester, OH. Knows EDS and how it affects the gastro system. Funny and likes to talk things out, but goes straight to the point.
Surgery: Dr. Thomas Husted, West Chester, OH. Keeps you well informed, good sense of humor puts you at ease, very conservative in favor of the patient, especially in EDS.
ENT: Dr. Alfred Sassler. Knows issues that occur in EDS such as acid reflux, TMJ, and inner ear hypermobility. May not have the bedside manners though.
Psychiatry: Dr. Robert Simms, Fairfield, OH. Conservative in treatment, doesn't like to over medicate. Passionate in wanting to help the patient so he listens and takes input about where the patients want to go with treatment.
Counseling: Tracy Mert, Charles Roberts, Diane Zeiger.
Migraines: Dr. Lisa Mannix. Does not accept any insurance. Doesn't specialize in EDS. Can do Botox and nerve blocks.
Migraines and Dysautonomia: Dr. Vincent Martin. Specialized in EDS, even co-wrote article with Dr. Tinkle about occurrence of migraines in EDS. Treats underlying dehydration and dysautonomia which co-occur with EDS and contribute to migraine and auras.
Geneticist: Dr. Derek Nielson from Dr. Tinkle's Office. VERY through in explaining what EDS and co-occurring conditions. Can get in to see him in about 2 weeks, rather than waiting 6 months to see Dr. Tinkle. Dr. Tinkle is leaving Cincinnati Children's and going to Chicago so he Dr. Nielson is a good option. Will offer all referrals and set goals of treatment, will make appointment for 6 months to see progress/degeneration.
Physical Therapy Specializing in Hypermobility: Kathy Loveless, South Lebanon, OH. Kathy is the one that uses the physio-tape I mentioned in an earlier post. Focuses on strengthening core with Pilates type movement and learning diaphragmatic breathing. Very knowledgeable in EDS and PT.
Pulmonologist: Dr. Richard Sternberg, Hamilton, OH. Knowledgeable in EDS and co-occurring respiratory conditions, such as collapsed bronchioles/alveoli, or reflux-disease that may be imitating a respiratory condition. Believed me when I said that I get flu shot and get the flu!
Some doctors that I have not had positive experiences with are:
Rheumatology: Dr. Surabhi Agarwal, Christ Hospital, Cincinnati, OH. Diagnosed as Fibromyalgia, Depression and anxiety. After reading her notes, she continuously said that I was anxious at her visits! I don't have Fibro trigger points and meds for Fibro have offered no help...it's NOT Fibro!
Rheumatology: Dr. Sri Koneru, Group Associates, Various Offices throughout OH. Offered Flexeril for sleep, when I let her know I still hurt and couldn't sleep, she discontinued the Flexeril and didn't pursue any other options.
Cleveland Clinic: Rheumatology and Migraine clinics were not of much help and got nowhere near my diagnosis. They suggested I get off ALL of my meds and never take anything again because "it COULD POSSIBLY cause a headache" while ignoring pain and osteoarthritis degeneration of the spine!
Gastroenterology: Dr. Pradeep Bekal, took 3 phone calls while I was on examining table, then went on to explain that he had to take the phone calls because he was really important! When I called for refill of Amitiza to treat gastroparesis (colonic inertia) they sent samples through which took 4 days! No bowel movement and pain for 4 days and then wait for the med to work!
General Surgery: Dr. Louis Thibideaux, he was fine with good bedside manner, however there was always a 1 hour waiting time in his office even with and appointment. Not someone to go back to.
As of now, I'm still looking for a gynecologist that is knowledgeable in EDS. The GYN I have now is okay but knows nothing of EDS. The fellows and residents he was training had at least heard of it but he hadn't! PCOS is linked to EDS and can cause referred back pain. I've also been having too many issues even having the Mirena so it's time for a second opinion but only with someone who is going to be of help, not just anyone. So I added a post-it note to my agenda to remind myself to ask Dr. Martin and Dr. Flashpohler for referrals. I'll then look up the doctors they offer and make my choice. We EDS'ers HAVE to be picky!!!
All joking aside, I'm fortunate that I haven't needed a cardiologist, endocrinologist, hematologist, dermatologist, neurosurgeon, oncologist, nephrologist, podiatrist, and I'm sure many other ~ists and sub~ists. Let's hope I NEVER do!!!
Let's see what the Universe has in store for me today!
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