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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 12-18-2007, 09:05 PM   #1
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neverenough915 HB User
Hand Surgery or not? NEED ADVICE

So I have broken my wrist probably seven times and in doing this i screwed it up pretty bad. Last January I was diagnosed with RSd after ten years of pain. After my spinal cord stimulator didnt work my pm dr. sent me to a hand surgeon to see if there was anything he could do. Well I went yesterday and he said i have sublexing ECU tendonitis. There is also a 1/4 inch gap between to on my bones. The tendon that runs along the side of my wrist (the side that always hurts) keeps popping out of place. now hes talking about doing a reconstruction surgery to fix it. it is already really weak. when they did the pinch test i could do 13 lbs with my good hand and only 6 lbs with my bad. then with the grip test my good hand was 45 lbs and my bad hand was less than 5 lbs. So its do you fix the mechanical problem and risk making the nervous problem worse? or do you leave it as is. Im so confused. He said he wanted a MRi and then wanted to have a long talk with my PM dr. If you were in my shoes would you agree to do the surgery or not?
NEED ADVICE! Thank you.
Amber

 
Old 12-19-2007, 05:24 AM   #2
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Michelle94 HB User
Re: Hand Surgery or not? NEED ADVICE

Amber,
Thats a tough call.. I was in that same situation.. I needed surgery on my cervical spine. My ortho said I was a canidate for the surgery but he was not willing to do it. Do to the fact of the RSD.. He felt that it would do more harm for me..
Thats the question.. Do you take that chance of the RSD spreading? I guess its up to you.. Depends on the mobility of your hand.. Do you feel you have enough? You could possibly lose more of it.. How much pain are you having with it? These are all the questions you need to ask yourself..
I could of easily went to another dr who probably would have done the surgery.. One who did not have knowledge of RSD.. I chose not to have the surgery.. The ortho wanted to see if the treatments for RSD would help my pain.. Four long yrs later. It did help.. I am so glad I chose not to get the surgery.. I went for 2 yrs of PT, I had lidocaine treatments for the RSD.. Now Iam almost pain free from the herniations.. I guess that tells me that the RSD was arrgravating it even more..
I think its good that your DR is communicating with the PM.. Its such a tough call.. Just from my experience if it was me.. I think I would probably wait and see how the RSD progresses and also I would think about my pros and cons of the surgery..
I wish you lots of luck.. Take your time and think about it...
Michelle

 
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Old 12-19-2007, 10:40 AM   #3
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jodom1979 HB User
Re: Hand Surgery or not? NEED ADVICE

Hey Amber,

I agree with michelle. I would avoid surgery at all costs... Having surgery would most likely upset your RSD even further so it would be a crap-shoot on wether you would get relief overall from this.. Good luck and keep us posted!

Jon

 
Old 12-21-2007, 06:52 PM   #4
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Cool Re: Hand Surgery or not? NEED ADVICE

Hi Michele,

I have RSD on both my hands, arms, my feet, now my scalp and my left breast. I am on Cymbalta & Gabapentin. This all occured after to much typing using my right pinkie which caused my DIP joint to fuse together and the RSD/CRPS I March 2007. I could not handle the pain on my dip joint so after several mris', x-rays, nerve blocks & therapy I just had a right pinkie fusion surgery on 11/23/07 and it was the best thing I could have ever done. I have more funtionality in my finger and my strength is getting much better and my flexibility. I have had 3 weeks of therapy 2x a week and have a few more weeks and most of my pain there is gone. My burning since being on cymbalta is gone everywhere on my arms, hands, feet, shoulders. I still have some on my breast and it just started on my head. I have some ointment for my scalp and it is going away quickly. I will be going to the doc next week for some ointment or a patch for the breast.

If I did not have the surgery I would not be able to type anymore.

 
Old 12-22-2007, 12:14 PM   #5
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aicirtapo HB User
Re: Hand Surgery or not? NEED ADVICE

I agree with Jon and Michelle. I have arthritis in my knees. Then car accident gave me RSD in one knee and I have been told by every doctor I have seen that no Orthopedic surgeon would ever give me a knee replacement as they know the risks of it spreading and I could sue them for malpractise if they operated unnecessarily. This type of surgery is always considered elective and only non-elective surgery (such as if I developed cancer of the bone or something) would be done for me. Laura.
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Old 12-23-2007, 06:49 AM   #6
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Michelle94 HB User
Re: Hand Surgery or not? NEED ADVICE

Thyca95,
You sound just like me.. We basically have the RSD in the same places. I just recently started with the rsd in my breast. Its not has bad as my hands and feet. but when I flare up thats when it bothers my breast.. At this point I have it everywhere.. I feel it in scalp, my face. Its not visible like it is on my hands and feet. My arms and legs, they flare up too.
I can walk, Thats about it.. forget any strenuous, I'll just pay for it later.. I've been thinking about getting a job.. Part time.. just a little extra money and some piece of mind. My B/F doesn't want me to work.. He thinks it will be to much for me.. but I feel at this point something needs to be done.. We need more cash flow.. lol.
As for treatments right now, all Iam taking is neurontin and tylenol 4.. and using lots of heating pads. I had two lidocaine infushions.. They helped alot.. I see Dr S in May, and we're gonna talk about ketamine treatments..
How does the neurontin work for you? Without that Iam a mess and without those lidociane infushions.. I wish everyone could try the infushion.. I really do feel it helps..
Well, I hope you have a painfree day.
Michelle

 
Old 12-23-2007, 08:50 PM   #7
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neverenough915 HB User
Re: Hand Surgery or not? NEED ADVICE

Thank you guys for your advice. BUt i am still so confused. My pm doctor doesnt want to do ketamine treatments. I am one fentanyl and morphine... but i dont want to be on them for the rest of my life. So its like what do you do to get off of them. he suggested do something like yoga to help seperate my muscles groups since ive started having pain in my right hand. it kinda seems funny that something so simple and little might help.
I just dont know how much longer i can deal with the pain. Its starting to get worse where i am going to have to ask my pm doc to up my fentanyl because i just cannot stand it anymore. Part of me is just like i need to trust my doctors right now. Ive tried lyrica, neurotin, ot, and two spinal cord stimulators. nothing has helped. So if i dont have it them what happens? Do i have to live like this the rest of my life? What treatments have you guys tried? has anything really helped?
Amber

 
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