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!
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