It began on Jan 18, 2005. I was having a "simple" hand surgery to fix the thumb on my right hand. My joints had deteriorated from osteoarthritis. 12 wks later when the surgeon took off my last cast, he confirmed the RSD diagnosis. He already had a suspicion when my hand did not heal right. He had to go in and put more stitches in on the 2nd week and the pain, swelling and color never changed since the day of the surgery. He just kept putting me in new casts..the long immobilization made it worse.
The surgeon then had me go to his PT dept and they proceeded to do the wrong therapy on me, making it much worse. Like the infamous hot/cold torture. I quit them and found another physical therapist. After 2 months, he refused to treat me anymore because it wasn't working. Doctors don't like patients they can't fix....
That started the journey to find a pain specialist that could help me. The first one did 3 SGB's that didn't work. Started me on pain and nerve meds. He was also knife happy. All he wanted to do was operate; I said no, surgery causes spreads. Why is it these so called RSD experts don't remember that?
My 2nd RSD doc wanted to amputate my entire hand. I asked him if he ever heard of phantom pain. So every 28 days, I had to go in for script refills (class 2 meds), even though the medicine never makes the pain go away. It just makes you so dopy and stupid that you forget about it. Every month came the same thing: amputate.....I saw him for over 4 yrs.
By the time I had finally had enough of him and his adding and adding meds, I was on so much medication that I had lost both my short and long term memory so I didn't realize what the medications were doing to me physically and mentally. That is a whole other story in itself.
Over this time the RSD spread to both hands,arms,legs, jaw and back. I also lost my bottom teeth because of the lack of circulation. I still haven't been able to replace them because all of our savings had gone for doctors, meds, etc. I could not remember anything; not even for an hour. My husband, who is disabled himself, had to take care of me 24/7. I had gone from the breadwinner of my family to the family burden.
Anyway, such is life. Getting my wheelchair was a big help. I keep having to find new doctors because my medicare advantage plan keeps cutting their reimbursements and the doctors just stop taking on patients like me. Right now I have a great, new primary doc and I'm inbetween RSD doctors.  |
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