AnonymousAugust 8, 2010 at 11:45 pm
I know there have been older threads on this topic but I have recently had a severe downturn in my CIDP symptoms. I was diagnosed 10 years ago and have been stable with treatment including cymbalta, lyrica, and IVIG every three weeks. I started noticing muscle weakness and pain from my fingers to my neck. this got gradually worse over the summer so I saw my neuro last week. I told him it felt like what I imagine carpel tunnel would feel like. He repeated my EMG when had not been done since I was at Mayo in 2007 and 2008 because it had not changed. My EMG should serious decline especially in my arms. My neuro said that Carpel tunnel in cidp patients is hard to sort out and treat for all the obvious reasons.
I am curious about others that have faced this and if anyone has gone through carpel tunnel surgery and if not what you have done to cope. I am wearing splints but I my hands are almost always asleep, tingling and painful.
As always I appreciate all the feedback I get from everyone!
AnonymousAugust 12, 2010 at 4:16 pm
I have not undergone Carpal tunnel surgery, but I can tell you a little bit about it from handling wc claims. They usually do one side and then about 6 weeks later do the other side, if you have bilateral. You want to have the scope v. open surgery so healing time is faster. Most people only have to have it done once and it is resolved. Occasionally, people will have to have it redone. As far as recovery, I would say max 3 months if you have one arm, maybe 6 months with 2. It all depends on the individual. I know people personally who have had hip surgery and are recovered in like a month, whereas in the wc arena, it is a year. ;)The doc may have you do some Physical therapy afterwards. I have never heard much complaints, so I imagine it is a pretty routine and simple surgery. Good luck!
AnonymousMarch 5, 2011 at 6:05 am
Hi, I have just been dx withe severe carpal tunnel in r/h and moderate in l/h.
Im waking up every hour or so with extreme numbness in r/h, my fingers feel like sausages but I dont have any pain in my hands just funny sensations. The pain I do have is in my elbows at night. I have great difficulty lifting my arms especially the left one.
After reading some earlier threads I’m wondering if it is worth having the operations.
Does anyone else experience this elbow pain and is it associated with carpal tunnel?
Overall I’m deteriorating rapidly and my walking stick is beckoning me.
AnonymousMarch 5, 2011 at 10:45 am
This question will surely make a great who dunnit mystery.
Meaning? Start with some symptoms- tingling, burning and numbness. Go to the doc. doc sends you to a neuro. Neruo, or somebody (a non-specialist) performs EMG/NCV testing and declares- Eureka! I’ve found it. You have slowing or other evidence of nerve problems across your wrist(s) and maybe your elbows. I recommend Carpal Tunnel Release.
Get the release done. At first, weeks and then months go by with no relief, no change in your symptoms. You may even get worse. I did. Oh, sigh. Oh, gee the surgery was not successful. Repeat the above.
Get a release done again. Ditto.
As for the elbow pain, they often perform an ulnar transposition. They make a small incision on the underside inside of your elbow and move the nerve away from the bony protuberance that is pinching it. It is often successful for those with a pinching problem.
Oh, yeah, I forgot- a carpal tunnel release, in theory, does the same thing. It relieves pressure from the ‘pinching’ of the median nerve where it passes through the tunnel.
Unfortunately, if your symptoms are due to the demyelination of the nerves caused by CIDP, then, in all likelihood, all your surgeries will be in vain. And, theoretically, could make your symptoms worse.
You see, I’ve been there, done that. I had the scope version of Carpal tunnel release (CTR) in- wait a second, I’ll look it up, Sept 2000. Then, I had an open release in 2002 and, ready for this? Scheduled for a third release in 2004, which was canceled the day before by a neurologist who finally said ‘hey, wait a second, maybe something else is going on….’
It was this neurologist, also not a specialist, who speculated ‘…patient may benefit from bilateral ulnar transpositions.’ Yeah, and maybe not.
Proceed at your own risk.
AnonymousMarch 5, 2011 at 11:44 am
Absolutely the same thing happened with my husband Yuehan. Hubby spent 3 years with a neurologist saying it was carpal tunnel, he had the release surgery, got worse, and then was referred to a neuromuscular disorder neurologist who diagnosed CIDP. By then he had major atrophy and loss of use–never to be re-gained. He has IVIG q. 3 weeks.
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