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Ulnar Nerve Transposition Severe Pain Two Years Plus

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Posted 2/27/2018 8:54 AM (GMT 0)
Lost job in professional video field as a result of chronic to severe pain from Ulnar Nerve Compression.
Had a subcutaneous transposition to inner elbow end of 2015. Emg tests are normal and no muscle wasting.
Pain stays at a 7 out of ten and only gets worse with activities. Currently use gabapentin (high dosage), lidoderm patch (at night to sleep alleviates some burning), and have had several injections for pain (ganglion block and near nerve w ultrasound). Pain relief is short-lived. Have also done disensitizing therapies. Cold air on 4/5 fingers as well as hot water near elbow/forearm makes arm feel on fire.
MRI year after surgery shows nerve is wider in transposed part towards hand. Dr. Doing injection recently said nerve looks flat and larger than has seen before.
Anyone have any ideas? Pain has been life changing and getting employmemt is tough.
Can’t find a Dr. here that will operate on a neuroma like area of a nerve and everyone warns agains a revision reiease.
Posted 2/27/2018 3:25 PM (GMT 0)
Wow. I'm so sorry to hear you didn't get the best result from your transposition.

Mine is also irritated by use of the forearm.

You didn't specify what type of doctor you have been seeing for your situation. Have you had a consult with a neurologist? If you have a University Hospital nearby, you may want to run your case past them. Teaching hospitals have access to the newest innovations that your regular doctors may not be aware of.

I know someone that was supposed to be having revision surgery and will try to get in touch with her to see if she has had it done yet. If she has, perhaps she will post something of her own experience here.

Meanwhile...back in 1996 when I had mine done the physical therapist used a modality he referred to as 'points'. A stylus would be placed at increments along the new nerve path and a 'pulse' would be sent, similar to an emg, at each 'point' along the path. This helped regenerate the nerve and helped 'teach' it. I haven't heard many people recently say that they have had this therapy done and I'm wondering if anyone still does it. I'm not sure it would help you, but it might be worth looking into.

What positions so you sleep in? Have you tried the night time brace? I kept my arm on a pillow for a very long period of time post op. I still have difficulties with the arm rest in cars and the edges of tables and desks.

I also took Benadryl to help with any histamine action in relation to swelling and Advil for inflammation.

Even this many years later, the nerve pain and it's triggers must be managed.

I lost quite a bit of nerve function...my outer forearm is numb/burning/tingling 24/7 although a bit milder now but never totally 'calm'. "Cold" = "wet". "Hot" = "hot" still, thank goodness. I can feel "itch" but not "scratched" and must be careful not to injure myself by scratching relentlessly...scratching the corresponding area on my other arm seems to help a bit.

Feel free to 'vent' to me anytime! This is a great place to release frustration. Even when we are not very 'busy' here.
Posted 2/27/2018 8:06 PM (GMT 0)
I have a team of Drs I have seen. Orthopedic, nerologist, Occupational Dr, and therapy. I just had nerve mapped with ultrasound and had three injections near nerve. Have a zynex sleeve device to send pulses. So far limited success. I take ibuprofen daily with gabapentin and lidoderm patch. Went through trials of lyrica, cymbalta, noratryptaline, and tramdaol. My problem is when I extend arm and push or pull it immediately fires up. I would love some numbness. The stabbing and burning pain is awful. Thanks for response.
Posted 2/27/2018 8:12 PM (GMT 0)
Yes and i rest my arm always on pillows and cushions same thing. Does the benadryl help? I take Xyrtec for allergies.
Posted 2/27/2018 9:56 PM (GMT 0)
I really can't say that the Bendryl 'worked'...I just know it was one of the things I had taken post op.

Back then, I was given a prescription of Elavil (not sure what the generic name is). It was technically listed as an anti depressant but it also showed it could help with nerve pain. They've come out with many more drugs to calm nerves since then.

I've not heard of a zynex sleeve before.

What you are describing about extending, pushing, pulling 'triggering' leads me to think it has to do with placement of the nerve and when the muscles 'bunch' from use, it compresses the nerve. I'm surprised that it is still at this level 2 years post op.

I've had nerve problems similar to sciatica (only a different nerve) that the only thing that helps is ice. I'm wondering if applying ice above the scar...closer to the armpit area...might help to numb the nerve down when it's flaring?

As you can see from my 'signature', I have a rather complicated history, of which the ulnar nerve is one small part. Years ago, I had considered revision surgery because I mostly worked either in a factory setting or cashiering and where the nerve is would constantly get 'bumped' causing excruciating pain. My surgeon (the one I chose to see, not the one workers comp sent me to see) informed me that, in his opinion, I would have only a 30% chance of benefit from a 'redo'. Not good enough odds for me, so I have what I have.

It did take a few years to level off to where I am now. I'm never not in pain, but in a lot of ways, I have adjusted to it. Hopefully, yours will respond to additional treatment.
Posted 2/28/2018 9:00 AM (GMT 0)
Yeah you have been through alot wow. I think it should have been placed sub muscular I guess too late now.
Posted 2/28/2018 10:36 PM (GMT 0)
I have scoliosis and thoracic outlet syndrome. My left ulnar nerve in my case is likely affected by the latter. Nerve conduction tests have shown a significantly reduced velocity and I used to have numbness and tingling in the outer two fingers and left side of my hand.

While I have to keep my left arm down so that I don't exacerbate the nerve impingement, I found that tianeptine sulphate has taken away the nerve pain that was constant for my left arm and left side for years. Likewise, while my left arm feels funky (vague is perhaps a better term), no more tingling in my hand or fingers.

If you don't want to go that route (tianeptine is by prescription in most other countries, but sold as a "supplement" here), it is chemically similar to a tricyclic anti-depressant -- so perhaps you might want to explore TCAs with your doctor.
Posted 3/15/2018 3:56 PM (GMT 0)
Hi Rochestereast-
Have you checked another opinion on moving the nerve in the muscle? When I had a problem with mine about 8 years ago, I discussed with the hand surgeon my options. He suggested moving it into the muscle
So the pain would not come back. He noticed those that did subcutaneous had more trouble. I feel some pain now off and on but I’ve lost a lot of weight over the last 2-3 years so the nerve keeps getting caught
Where it is. Not all the time.

Good luck. 👍. That’s a lot of drugs to live day to day. Keep us posted.
Posted 4/23/2018 4:22 AM (GMT 0)
Was that sub muscle or just inside the muscle? I only do gabapentin with the lidoderm patch. Definitely think nerve needs a buffer.
Posted 6/22/2018 4:47 AM (GMT 0)
Had surgery to re release ulnar nerve where transposed. There was so much scar tissue Dr had to slowly follow nerve from above elbow to find where it was. Besides the cut which hurts, 50% less pain at elbow. However forearm and pinky finger are a bit more painful. Hopefully that subsides. Didn’t use any opioids. Lidocaine and tramadol twice a day. Prolly under treated pain a tad but as expected.
Posted 6/22/2018 1:04 PM (GMT 0)
Wow! Healing thoughts going out to you RochesterEast! Thanks for the update. I'm really hoping you get a better result from the repeat surgery.
Posted 6/22/2018 4:45 PM (GMT 0)
Rochester, I sure hope this last surgery brings you much success & relief! Please keep us posted on how you are doing.
Posted 6/25/2018 5:31 AM (GMT 0)
Jury out on surgery...the cut line pain is a 12 anspd heel of hand and last two digits are awful. Anyone know if Dr.s can do pulse radio ablation at the elbow on the ulnar nerve without affecting the motor part of nerve?
Posted 6/26/2018 2:20 PM (GMT 0)
I have not heard of this procedure, but that doesn't mean anything. Perhaps try a google search & see if you can find anything.

The only experience I have with ablating nerve endings by RF, deals with spine issues. It is not a permanent fix either, the nerve endings grow back in time. Some may get 6 months relief at best.
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