[RobinM]

Hi, it looks like I will have to get surgery on my left arm. Here is my quandary...

...decompression I can deal with, but I have heard some nasty tales about 'relocation' of the nerve. Personally I would like it left where it is (i.e. it is there for a reason) plus I have heard some consultants tell me that it is a dangerous procedure that could screw up your arm permanently.

Does anyone know about this more to make a comment... I am not shy enough to not pull the surgeon before hand and say NO!

Am I over-reacting? It is just that I am in the UK and I feel that our medical procedures are still in the stone ages!

[Mite]

Hi Robin,

At one point I thought i had cubital tunnel syndrome and did TONS of research into it.

Try decompression for sure.. its the safer route, some people get decompression a few times before they do a transplant.

The plus to decompression is the recovery is quick. However the problem can come right back if you do not take care. With me, I slept with a arm splint for a while cause I was sleeping on my arms. It helped tremendously although had a lousy sleep for a while.

THe transplant where they cut the forearm muscle and run the nerve under the forearm muscle, (muscles can heal well) however, some people take 2 years to recover from this surgery, and the cast you will have on for like 6 months for sure.

Do you have any muscle wasting? or constant numbness in your pinky? .. if so do the decompression FOR SURE.

Good luck!

[RobinM]

Thanks Mite for you rapid response.

Yes I have muscle wasting between my thumb and fore finger and I cannot (claw) extend my 3rd and 4rd digit (pinky and ring finger) however, my grip strength is still the same.

Yeah, decompression is not an issue, it is just that I spoke to a consultant (not my own) and he said you really should try and stay away from relocation.

Thanks allot for your input, surgery seems like it will be soon and I want to get any info I can. Anyone can read a text book, but first hand experience is invaluable.

Sleeping is a nightmare though, because I just don't sleep on my back... maybe I need a flat screen tv on the roof of the room!

[gabbycakes]

Originally Posted by RobinM

Hi, it looks like I will have to get surgery on my left arm. Here is my quandary...

...decompression I can deal with, but I have heard some nasty tales about 'relocation' of the nerve. Personally I would like it left where it is (i.e. it is there for a reason) plus I have heard some consultants tell me that it is a dangerous procedure that could screw up your arm permanently.

Does anyone know about this more to make a comment... I am not shy enough to not pull the surgeon before hand and say NO!

Am I over-reacting? It is just that I am in the UK and I feel that our medical procedures are still in the stone ages!

You are definintly not over reacting. A Ulnar Nerve Transposition is not a easy surgery or recovery. I had this type of surgery in 2005 and yet it improved one problem in caused another.I also have RSD but I was DX prior to the ulnar nerve surgery. So my situation is a little different. My nerve had to be moved because it was tangled in hardware that I had in my elbow. I also had other procedures done at the same time my arm was a mess. But on the good side after much time has passed I did go from absolutely zero functioning in my arm to I would say I have 85 percent functioning and if you did not know I had many surgeries to correct this arm you could not tell. The only advice I can give you is that make sure your surgeon is extremely experienced in this type of nerve surgery, ask him how many time has he performed this type of surgery. When I was searching for a doctor to help me when I first had my accident many doctors I saw would say " you have to see such, and such he is the only one that can fix this problem". To be honest it scared me what doctor doesn't want to take on a problem that has many surgeries ahead which is many dollars to them. So, I knew it was a serious procedure. When I finally got to this doctor in NYC. I finally felt like thank god someone who will help me. He explained how serious doing this procedure was and the what would have to be done after and how the RSD would have to be under control before hand. So I just did exactly what he said each time we walked down that cold hallway to the OR and if it was not for the RSD I would of had a 100 percent recovery from a serious inquiry.When I stated that it caused another problem I still have pain in the area where the nerve was moved from and where the incision is but it's a type of up and down thing some days are better then others and it is definitly affected by the weather especially humidity, it's the worse. I hope I answered your questions.I wish you all the luck is the world and PM me if you have any other questions.

Gabbcakes

[Jomar]

Originally Posted by RobinM

Hi, it looks like I will have to get surgery on my left arm. Here is my quandary...

...decompression I can deal with, but I have heard some nasty tales about 'relocation' of the nerve. Personally I would like it left where it is (i.e. it is there for a reason) plus I have heard some consultants tell me that it is a dangerous procedure that could screw up your arm permanently.

Does anyone know about this more to make a comment... I am not shy enough to not pull the surgeon before hand and say NO!

Am I over-reacting? It is just that I am in the UK and I feel that our medical procedures are still in the stone ages!

Hi Robin,
I'm wondering what cased this , your job? a specific acute injury?

Some with thoracic outlet syndrome {TOS} get a clawing and wasting of the hand.
Sometimes there is a definite compression or impingement at the elbow or wrist as well as up at the upper junction {neck/shoulder/collarbone etc} - that can be a case of double crush or even triple crush if all 3 areas are involved.

I just want to mention this because some w/TOS in the past had the ulnar surgery and it did not address the proper cause of the symptoms.
Their symptoms were not really coming from the elbow they were referred pain from higher up.
Do you also have neck, shoulder or upper back pain & tightness?

If you want to read more about TOS here is our forum link -
http://neurotalk.psychcentral.com/forum24.html

[RobinM]

Thanks all of you for you input, it is greatly appreciated.

I don't know why exactly I got to this stage, my other arm started showing symptoms, but has now made a full recovery on it's own.

However my left hand has had 'pins and needles' for about 6 years but only recently started to claw. I haven't given up on it yet and believe that with just the decompression surgery it can heal itself.

Thanks again.

[Jomar]

Is it only your hands that have the pins and needles, and not the whole arm?
Here's a good info page that shows some basic positional tests for TOS {just in case }
http://www.nismat.org/ptcor/thoracic_outlet/
It is a condition that is often overlooked and not well known to drs - until it becomes painful and chronic.

[RobinM]

Thanks for the links Jo, yeah.. it is just my hand... I get the odd 'stabbing' pain in my elbow, but nothing that stops me from doing anything.

I went to a physio and they determined it was not an issue with the nerve getting trapped in my upper spine. Every now and then I get a light 'throbbing' about 2-3 inches below my elbow, which makes me think that is where the problem lies.

Thanks again Jo... as I said before, the more information the better. I get a feeling that the UK health system is running on information that they learnt while training in the 80's!

I mentioned 'methycobalamine' and 'benfotiamin' to 4 consultants and 1 doctor.

All gave me the same response... "Never heard of that!"

[hurting]

RobinM

Good luck on what you do for your nerve pain problem as I fully understand how painful having any nerve work done can be. Mine is not the same nerve as yours but I have been living with nerve pain throughout my right arm for almost 4 years now. As others have said take the time to find the very best Dr. in your area.