[suz66]

Hi: I have had RSD for 10 months; in that time, I have had 3 nerve blocks (didn't work), a MUA of my rt. shoulder and constant PT/OT. I direct the children's choir at my church and play the piano.....or used to anyway. I am predominantly rt handed and have had to relearn to write with my left. I fractured my rt elbow and developed RSD in my entire rt hand and arm. Once the doctor numbed my arm and did the MUA of my shoulder, I began to improve. Now my doctor says that I won't get anymore use of my hand without surgery. I can bend my finger tips, and my mp joints. The doctor wants to do a capsular release of my pip joints (no bend) soon. I am allergic to most pain meds and am concerned about the outcome of this procedure. Has anyone had this surgery and/or knows of the pros and cons? I have been told that my RSD could recur with the surgery, but won't get anymore use without it. I will never make a fist with my rt hand again, but I may get my grip back, if all goes well. Any advice you can give me would be greatly appreciated. Suz

[Dubious]

Similar issue with my shoulder. A second opinion doc said I desperately need a capsular relese but wouldn't touch me without a 6 month period of no-CRPS symptoms. I can't go one day withouth them! Third opinion doc said I need the surgery, he would do it, but there is a significant chance that it could flare my CRPS to the worst day prior to my stellate blocks when I had uncontrollable pain. My surgeon hasn't even brought it up!

[SBOWLING]

Hello,

I have full body RSD (9 years now). I haven't had the kind of surgery you are referring to. However, about 5 weeks ago I had ankle surgery. My docotor didn't want to do it because of my RSD. I was lossing the strength in my ankle and it was giving out. My ortho doctor talked to Dr. Schwartzman in Philly he is an RSD specialist (I live in OH I have been to Philly several times to see Dr. S). He recommended a ketamine infusion after surgery in addition to a nerve block that numbed me from the waist down. The infusion lasted four hours after surgery. I don't know the mg that were used. The surgery didn't flair my RSD. I flaired it several days after surgery trying to do too much.

Dr. S in Philly is always willing to talk to doctors and give advice. The key is getting doctors to swallow their pride and call him.

I know it all seems so overwhelming at times and very confusing. I hope you make the best decision for you.
I hope you find relief.
Take care,
Sherrie

[gabbycakes]

HI,

I believe contracture and capsular are the same or at least in the same family as far as surgeries go. I had 2 contracture releases of the elbow. The reason I had to have 2 was because the first one did not work. The reason for this type of surgery was I did not have any range of motion,could not use my arm at all. I had fractured my elbow and had to have some titanium replacement pieces inserted, the scar tissue grew and caused the contracture. It was not an easy surgery put the second surgeon I worked with did a great job got my arm back to about 90% function and if you did not see the scars or no what had happened you would not even know I had a problem. My limitations at this point is I have RSD in that area, I had it before I had the 2nd release done, I am limited to what I can lift and I can not pronate and supinate my hand fully. Pronate is palm down, subinate is palm up.

I will give you one piece of advise that I wish someone gave me contracture/capsulars are very tricky and needs a surgeon who has done it 1000 times in his career. The doctor who finally did the job correct only does contractures of the elbows his whole practice is centered around that, at least 80% of it. He was a hand surgeon and hand surgeons study extensively from the elbow down to the tip of the fingers.


Just to give you some other facts about the surgery: I was in the OR about 6 or 7 hours my hospital stay was 5 days. As my surgeon explained to me for the best possible results was to move the arm hours after surgery. In order to acheive that I had to have a continouse "interscaline block" to numb my arm so I could tolerate a CPM Machine, Continuous Passive Movement. That was also the reason for the long hospital stay the block could only be administered my an anesthiaologist and monitered quite often throughout the day.

I know this sounds like a lot and it was but the result was excellant I had a short period of PT maybe 2 months 3 times a week and it was over.

Again, I can't stress enough about having the correct doctor for this type of procedure. What part of the country do you live in? Maybe I can refer someone. Good Luck.

Gabbycakes

Originally Posted by suz66

Hi: I have had RSD for 10 months; in that time, I have had 3 nerve blocks (didn't work), a MUA of my rt. shoulder and constant PT/OT. I direct the children's choir at my church and play the piano.....or used to anyway. I am predominantly rt handed and have had to relearn to write with my left. I fractured my rt elbow and developed RSD in my entire rt hand and arm. Once the doctor numbed my arm and did the MUA of my shoulder, I began to improve. Now my doctor says that I won't get anymore use of my hand without surgery. I can bend my finger tips, and my mp joints. The doctor wants to do a capsular release of my pip joints (no bend) soon. I am allergic to most pain meds and am concerned about the outcome of this procedure. Has anyone had this surgery and/or knows of the pros and cons? I have been told that my RSD could recur with the surgery, but won't get anymore use without it. I will never make a fist with my rt hand again, but I may get my grip back, if all goes well. Any advice you can give me would be greatly appreciated. Suz

[daylilyfan]

have you looked into botox? I had symptoms very similar to frozen shoulder from my RSD. My PM sent me to a neurologist that does botox and although I had a bad reaction and it was a tough 6 weeks - when it was over, I gained back better than half what was frozen without any surgery or severe PT. I am still compromised, but much better. We are toying with doing another round of botox even though I had an unusually rough time of it... but I am doing fairly well and I hate to upset the boat. However, another round might give me 100% use back. It still hurts when I use it - from the RSD - but at least I can do things.

Might try it... it seems to work quite well for "stuck" areas and RSD.

I am not sure I understand what your problem entails with your hand, so this may not help at all... but if it would, I think I would try it before trying surgery.

[suz66]

Thanks for the replies. I am seeing a hand specialist about this surgery. I don't have alot of pain right now, just from stiffness, etc. The RSD has gone into remission; seems like. I really don't want this to flare up again, but don't have a grip with my right hand and have trouble holding a pen. I think that I could compensate, eventually , but am concerned about "what if" down the road. I have the surgery scheduled for Aug 11, (day before my birthday) and it will be an outpatient procedure. I can still cancel it, but not sure if I should do it or not. I will have to ask my Dr about the ketamine, but he plans on me going home same day. It would be good to be able to talk to the other doctor (Dr. S) if I can. I live in Central Ohio; if that helps. Thanks and will check again later for more good advice. Thanks again to everyone. Suz

[daylilyfan]

Suz, the doc that did Botox on me is in New Albany. He also has a couple other offices around Columbus.

He told me he has helped people whose hands have been stuck in claw shape for years with Botox.

Might be worth hearing what he has to say -- would have to be better than surgery.

Typing on a phone right now so will sign off, but I can pass his name on to you.

I am also in central Ohio. I have RSD in several areas, had it since 2001. Know quite a few doctors in the area if you want to PM me.