I decided to chronicle my experience of going from misdiagnosis to living with Ehlers-Danlos Type III, and how it has affected most of my body. I am fortunate that getting a diagnosed led to my 15 year old son being diagnosed early, before he sustained any organic damage.

My hope is that my blog will allow others realize that they are not alone, and it's not "all in their head", it's very real and debilitating! I also hope that my Counseling background will inspire others not to neglect their mental health as EDS can push our limits; seek support!

Saturday, July 21, 2012

Post-Niessen Fundoplication (acid reflux surgery)

Well, I'm back after having had my Niessen Fundoplication (fancy name for acid reflux surgery) and hiatal hernia repair. The surgery went smoothly and quick.  And I will say, HYPNOSIS WORKED! I was in absolutely NO PAIN post-surgery and left the hospital with NO PAIN MEDS! I only felt discomfort from anesthesia and gas which made it hard to breathe the first day and reason I used any pain medication. I used so little of it, the nurses constantly kept reminding me "You can use it every 6 minutes". By the time I left the hospital 2 days after surgery I had used less than 1mg of Dilaudid!!!

Post-surgery wasn't quite as smooth, there were a few bumps in the road but nothing too alarming. First, I began developing the initial signs of an allergic reaction to the Dilaudid. Some pain meds can cause some flushing of the skin, I looked like a lobster and irradiated heat! I let the nurse know and said said they had already left a standing order for Benadryl knowing my past history and it was up to me whether I wanted it by mouth or IV...IV please! We started at 12.5, standard initial dose for IV but I could get up to 50mg, I just needed to ask when I felt I needed it. I felt powerful! The doc's were listening to me and trusting I could manage my condition! (that or they were terrified, result is the same) I waited a couple of hours with no change so I asked for a second IV dose; the flushing and heat started to dissipate. Even after another Dilaudid dose, the flushing did not return. Phew!

Initially, I was told this would be outpatient surgery, however, the day before surgery I was notified I would be staying the night. I think the doc decided to be cautious precisely because of my history with med allergies...and well, just because of my history. However, the day after surgery I was still experiencing some nausea and I was held an additional night. He explained that after a Niessen Fundoplication and after anesthesia, its not unusual to experience nausea and there is a risk that vomiting might develop causing the surgery to become undone. I would need to be given Zofran to manage the nausea until it passed. I'm familiar with Zofran, it's what I use when I have an intense migraine that is accompanied by nausea; it's also what is used in cancer patients to control nausea related to chemotherapy. Zofran was of no help. I asked for Phenergan (the most wonderful pharmacological invention along with Benadryl!) but it never came...don't know what happened there....so I just used Dilaudid to fall asleep and let the nausea pass.

I'm able to ambulate around the house freely with no pain, but I don't press my luck by standing for too long and definitely don't lift heavy objects. I've graduated from a clear diet consisting of broth, frozen ices and jello, to a soft diet that includes yogurt and a little bit of milk. I won't be able to have fresh fruit for a while, and I may not be able to have seeds forever because they can become stuck, maybe meat too...it's going to be a lot of trial and error.

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