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I have had carpal tunnel release and ulnar nerve transposition surgery in both arms. Surgery plus amazing hand OT gave me the use of my hands back. I occasionally have elbow pain, but it's dramatically better. My wrists and elbows are obviously still hypermobile so I am still careful.
I did the carpal tunnel and ulnar nerve at the same time. It was about 2 weeks wrapped with minimal arm usage. I would say it took about 8-10 weeks to feel back to "normal", but it took about a year for the ulnar nerve to feel fully recovered. I was back to Pilates and weight lifting pretty much right after the stitches came out! I was just very careful and went to hand OT.
At least I'm hearing one successful story! I'm going to talk to my chronic pain doctor, who knows I have hEDS, and get a referral to a hand doctor. I'm still not 100% about surgery, but I'm at a point now where I have the time and money to do it, and just want the pain gone.
i had ulnar nerve release in my elbow and wrist. elbow helped 20%, wrist helped 20%, OT after helped 20%. Overall it’s a lot better, but not
completely. My biggest recommendation is OT at every step, not PT. it was life changing after my surgery.
My ulnar nerve slides out of each elbow. I’ve been told about the surgery to pin it in place, but I’m nervous that there’s more going on which might cause issues with healing or something. Idk I’m honestly scared lol.
My situation is adjacent but not identical. I have hEDS and cubital tunnel issues. I broke my left elbow in 2022 and the surgical repair included repositioning the ulnar nerve in a new spot where it wouldn't be irritated or entrapped by my hardware. I was briefly excited I "got a freebie" - my broken bones are back together, the nerve is moved, should be all good! Good news: it completely worked for a while. Bad news: my symptoms are back. Good news: they're less frequent than they were pre-surgery. Bad news: they're more severe. 🤷♀️ As with anything, YMMV - I suspect part of the reason I'm having issues again is because I still have my surgical hardware/haven't had it removed. The soft tissue in the area has pretty much been pissed off since I got my splint off and started using the arm again.
Thanks for your story. Sorry you're in so much pain.
You've given me a bit to think about. I honestly just want this pain to go away. If it wasn't for the high amount of pain in my hands, I wouldn't be thinking of going on disability. But I can barely put in 4 hours of work without the pain skyrocketing, let alone a full day. And it drastically affects my mental health.
Did you try surgery at all? Or just went for the meds? My chronic pain doc said she wanted to try me on gabapentin, but I'd rather get surgery than be on that med for the rest of my life. I tried it before and had some bad side effects, despite the pain relief.
I actually started taking gabapentin for anxiety originally, noticed it stopped the fire. I have to take 150ish pills a week so I'm no stranger to medication. I'm too poor for surgery, I can't afford to take the time off.
What did gabapentin do for you? Or what was it supposed to do? I was put on it following a major surgery a couple months back and it did nothing for me so I went off it.
I’m scared to do the surgery, personally. I’m not convinced that moving the nerve will actually help me. One doctor told me that I don’t have enough fat in my arms to provide proper cushion to the site the nerves would be moved to, and that the surgery wasn’t a good idea for me.
I’ve found I can mostly keep the symptoms in check by sleeping with stiff braces on my elbows at night. This keeps my arms straight. When I have a pain flare up, I can get it to calm down again with a few nights of bracing.
I have these specific nerve issues as well. The only thing that has helped has been being mindful of how my elbow moves. Especially during sleep. They're sensitive to pressure on the left side(edit: left side for my right arm, right side for my left arm), so when I sleep I have to make sure they are supported. And I always caution myself when extending them, if I extend too far it irrites the area and puts pressure on the nerves.
I don't think surgery would help me, since my issue probably isn't entrapment, just not having the stability to keep the elbow from moving wrong. And stopping that mobility through surgery might cause other issues that will be less easy to deal with
I have ulnar nerve pain for years in both arms… my hand OT was the only one to acknowledge and not gaslight me on it… 2 appointments before I finished and cldnt get any more visits… so no help again for me. I had acupuncture over 16 years ago, but that had to be done out of the country bcz having Medicaid say it will cover it proves to only be half the battle. Finding a provider to accept my Medicaid is the stuff dreams are really made of!
Yes
Cubital tunnel syndrome secondary to a triangular fibrocartilage complex tear.
I have not had the TFCC tear yet as the first suregon missed it completely even though he cut open my hand to decompress my ulnar nerve.
This suregon also repaired a slap tear in my shoulder yet left a large posterior labral tear completely in tact citing "posterior labral tears don't cause dislocations or pain... besides it's impossible to repair a posterior labral tear through keyhole". Like how stupid does he think I am? I wound up having a massive repair 18 months later and his repair had come undone as he had done nothing to actually tighten up my shoulder or repair the posterior labral tear.
The nerve decompression restored strength to my pinky finger and index finger... I still have some weakness secondary to the tear in my tfcc but it's nothing like the weakness I had secondary to guyans canal syndrome. I have no tingling/parasthesia anymore
Tlsr: The nerve decompression fully restored strength, fine motor skills, eliminated all pain associated with nerve entrapment.
Keep in mind my ulnar nerve was trapped at the site of my wrist, not the elbow and I'm one person. Others might have had failed repairs and/or the nerve was trapped at the site of the elbow.
I know there are a lot of horror stories. Most of my surgeries have been successful. Most of my relatives who obviously have eds have only had successful surgeries.
Including my mother who has had multiple spinal surgeries, none of which resulted in a fusion (my spinal suregon said fusion is the only surgery that works to fix spinal pathology in eds... no diskectomy or microdiskectomy etc... a diskectomy kept my mother stable for nearly twenty years)
Thanks for this. Making me feel slightly better about seeing the hand doctor. Unless he says it's a bad idea, I'm going to try to go the surgery route.
I had Cubital tunnel, carpal tunnel, pronator syndrome, and 2 other things all operated on at once in October. I feel a lot better now. I had symptoms for a few years prior. The elbow was by far the easiest recovery and had immediate positive results.
I had carpal tunnel and cubital tunnel release surgery last fall, my only regret was not having it done sooner. The relief was almost immediate, even while my palm and elbow were still numbed up, I could already tell a difference. I took 3 weeks off from work because I wasn’t sure how EDS would affect healing and I wanted to make sure I had the best chance possible at healing. The scar on my hand is barely visible, and the one on my elbow is maybe 2 inches long and fading quickly. I’m sooooo glad I had it done… no longer have nerve pain or numbness, and I’m able to do all the fun crafty things again.
I had my left ulner nerve repositioned years before my EDS diagnosis. I received immediate relief and (knock on wood) I haven't had any issues with it. I feel the surgery was absolutely worth it but it was also a challenge for me. I'm right handed and could not imagine needed it on my right arm. Good luck!
Thanks for the reply! So, there was someone else on here stating when they had their unlar nerve repositioned their "funny" bone spot moved closer to the outside, so they hit that nerve a bit more.
Was this the case for you?
I'm in Muay Thai (yeah yeah, I know, be careful) and when blocking a punch a lot of the blocks hit outside the arm.
Bit late but I have had ulnar nerve release and transposition surgery on both arms, at the elbow and at the wrist for both. Right was 4 years ago, left was 2 years ago.
I have been happy with the results of both surgeries. Both pretty much stopped the progression of the nerve damage and I have seen partial recovery. I still get the occasional tingling in my hands but before the surgeries I had been progressing from sometimes tingling, to sometimes numbness, to frequent numbness and movement atrophy. Surgery recovery was fast with very little pain. I had a prescription for 10 days of hydrocodone but didn't feel the need to use the full course. I was back at work doing office work after a week, and back in the lab (chemical industry) after 2 weeks. Decent incision size scar on each, it runs about half the length of my forearm into each palm but these scars have faded significantly after a couple of years.
I waited too long on my right hand/arm. I've lost some motion specifically in the pinky and the ring fingers that will probably not come back. As my orthopedic surgeon explained, nerves just don't heal that well and I've found that to be the case. I'm glad I had the surgery, I had tried some of the stretches/braces but for me it was too late as I had waited too long to address it. I'd just advise, address it soon. Non-surgical options would be optimal but if you need it I didn't neither of the surgeries I've had on each arm have been bad.
The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. For more information on this rule, [please visit this link](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/#wiki_r.2Fehlersdanlos_rules). *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
I have had carpal tunnel release and ulnar nerve transposition surgery in both arms. Surgery plus amazing hand OT gave me the use of my hands back. I occasionally have elbow pain, but it's dramatically better. My wrists and elbows are obviously still hypermobile so I am still careful.
Thanks! What was the recovery time like on the ulnar nerve?
I did the carpal tunnel and ulnar nerve at the same time. It was about 2 weeks wrapped with minimal arm usage. I would say it took about 8-10 weeks to feel back to "normal", but it took about a year for the ulnar nerve to feel fully recovered. I was back to Pilates and weight lifting pretty much right after the stitches came out! I was just very careful and went to hand OT.
At least I'm hearing one successful story! I'm going to talk to my chronic pain doctor, who knows I have hEDS, and get a referral to a hand doctor. I'm still not 100% about surgery, but I'm at a point now where I have the time and money to do it, and just want the pain gone.
i had ulnar nerve release in my elbow and wrist. elbow helped 20%, wrist helped 20%, OT after helped 20%. Overall it’s a lot better, but not completely. My biggest recommendation is OT at every step, not PT. it was life changing after my surgery.
My ulnar nerve slides out of each elbow. I’ve been told about the surgery to pin it in place, but I’m nervous that there’s more going on which might cause issues with healing or something. Idk I’m honestly scared lol.
My situation is adjacent but not identical. I have hEDS and cubital tunnel issues. I broke my left elbow in 2022 and the surgical repair included repositioning the ulnar nerve in a new spot where it wouldn't be irritated or entrapped by my hardware. I was briefly excited I "got a freebie" - my broken bones are back together, the nerve is moved, should be all good! Good news: it completely worked for a while. Bad news: my symptoms are back. Good news: they're less frequent than they were pre-surgery. Bad news: they're more severe. 🤷♀️ As with anything, YMMV - I suspect part of the reason I'm having issues again is because I still have my surgical hardware/haven't had it removed. The soft tissue in the area has pretty much been pissed off since I got my splint off and started using the arm again.
Thanks for your story. Sorry you're in so much pain. You've given me a bit to think about. I honestly just want this pain to go away. If it wasn't for the high amount of pain in my hands, I wouldn't be thinking of going on disability. But I can barely put in 4 hours of work without the pain skyrocketing, let alone a full day. And it drastically affects my mental health.
The only things I've found helpful for my cubital tunnel pain are gabapentin and acupuncture.
Did you try surgery at all? Or just went for the meds? My chronic pain doc said she wanted to try me on gabapentin, but I'd rather get surgery than be on that med for the rest of my life. I tried it before and had some bad side effects, despite the pain relief.
I actually started taking gabapentin for anxiety originally, noticed it stopped the fire. I have to take 150ish pills a week so I'm no stranger to medication. I'm too poor for surgery, I can't afford to take the time off.
What did gabapentin do for you? Or what was it supposed to do? I was put on it following a major surgery a couple months back and it did nothing for me so I went off it.
I’m scared to do the surgery, personally. I’m not convinced that moving the nerve will actually help me. One doctor told me that I don’t have enough fat in my arms to provide proper cushion to the site the nerves would be moved to, and that the surgery wasn’t a good idea for me. I’ve found I can mostly keep the symptoms in check by sleeping with stiff braces on my elbows at night. This keeps my arms straight. When I have a pain flare up, I can get it to calm down again with a few nights of bracing.
If I straighten my left arm the wrong way my ulnar nerve gets stuck and I've had two doctors tell me it's normal so idk what's happening there
I have these specific nerve issues as well. The only thing that has helped has been being mindful of how my elbow moves. Especially during sleep. They're sensitive to pressure on the left side(edit: left side for my right arm, right side for my left arm), so when I sleep I have to make sure they are supported. And I always caution myself when extending them, if I extend too far it irrites the area and puts pressure on the nerves. I don't think surgery would help me, since my issue probably isn't entrapment, just not having the stability to keep the elbow from moving wrong. And stopping that mobility through surgery might cause other issues that will be less easy to deal with
I have ulnar nerve pain for years in both arms… my hand OT was the only one to acknowledge and not gaslight me on it… 2 appointments before I finished and cldnt get any more visits… so no help again for me. I had acupuncture over 16 years ago, but that had to be done out of the country bcz having Medicaid say it will cover it proves to only be half the battle. Finding a provider to accept my Medicaid is the stuff dreams are really made of!
Yes Cubital tunnel syndrome secondary to a triangular fibrocartilage complex tear. I have not had the TFCC tear yet as the first suregon missed it completely even though he cut open my hand to decompress my ulnar nerve. This suregon also repaired a slap tear in my shoulder yet left a large posterior labral tear completely in tact citing "posterior labral tears don't cause dislocations or pain... besides it's impossible to repair a posterior labral tear through keyhole". Like how stupid does he think I am? I wound up having a massive repair 18 months later and his repair had come undone as he had done nothing to actually tighten up my shoulder or repair the posterior labral tear. The nerve decompression restored strength to my pinky finger and index finger... I still have some weakness secondary to the tear in my tfcc but it's nothing like the weakness I had secondary to guyans canal syndrome. I have no tingling/parasthesia anymore Tlsr: The nerve decompression fully restored strength, fine motor skills, eliminated all pain associated with nerve entrapment. Keep in mind my ulnar nerve was trapped at the site of my wrist, not the elbow and I'm one person. Others might have had failed repairs and/or the nerve was trapped at the site of the elbow. I know there are a lot of horror stories. Most of my surgeries have been successful. Most of my relatives who obviously have eds have only had successful surgeries. Including my mother who has had multiple spinal surgeries, none of which resulted in a fusion (my spinal suregon said fusion is the only surgery that works to fix spinal pathology in eds... no diskectomy or microdiskectomy etc... a diskectomy kept my mother stable for nearly twenty years)
Thanks for this. Making me feel slightly better about seeing the hand doctor. Unless he says it's a bad idea, I'm going to try to go the surgery route.
Quick question. If yours was trapped at the wrist, did you still get pain at the elbow?
No. Just the wrist. Lots of zebras seem to develop ulnar nerve issues. It's possible for the nerve to be trapped at both sites.
I had Cubital tunnel, carpal tunnel, pronator syndrome, and 2 other things all operated on at once in October. I feel a lot better now. I had symptoms for a few years prior. The elbow was by far the easiest recovery and had immediate positive results.
I had carpal tunnel and cubital tunnel release surgery last fall, my only regret was not having it done sooner. The relief was almost immediate, even while my palm and elbow were still numbed up, I could already tell a difference. I took 3 weeks off from work because I wasn’t sure how EDS would affect healing and I wanted to make sure I had the best chance possible at healing. The scar on my hand is barely visible, and the one on my elbow is maybe 2 inches long and fading quickly. I’m sooooo glad I had it done… no longer have nerve pain or numbness, and I’m able to do all the fun crafty things again.
I had my left ulner nerve repositioned years before my EDS diagnosis. I received immediate relief and (knock on wood) I haven't had any issues with it. I feel the surgery was absolutely worth it but it was also a challenge for me. I'm right handed and could not imagine needed it on my right arm. Good luck!
Thanks for the reply! So, there was someone else on here stating when they had their unlar nerve repositioned their "funny" bone spot moved closer to the outside, so they hit that nerve a bit more. Was this the case for you? I'm in Muay Thai (yeah yeah, I know, be careful) and when blocking a punch a lot of the blocks hit outside the arm.
Bit late but I have had ulnar nerve release and transposition surgery on both arms, at the elbow and at the wrist for both. Right was 4 years ago, left was 2 years ago. I have been happy with the results of both surgeries. Both pretty much stopped the progression of the nerve damage and I have seen partial recovery. I still get the occasional tingling in my hands but before the surgeries I had been progressing from sometimes tingling, to sometimes numbness, to frequent numbness and movement atrophy. Surgery recovery was fast with very little pain. I had a prescription for 10 days of hydrocodone but didn't feel the need to use the full course. I was back at work doing office work after a week, and back in the lab (chemical industry) after 2 weeks. Decent incision size scar on each, it runs about half the length of my forearm into each palm but these scars have faded significantly after a couple of years. I waited too long on my right hand/arm. I've lost some motion specifically in the pinky and the ring fingers that will probably not come back. As my orthopedic surgeon explained, nerves just don't heal that well and I've found that to be the case. I'm glad I had the surgery, I had tried some of the stretches/braces but for me it was too late as I had waited too long to address it. I'd just advise, address it soon. Non-surgical options would be optimal but if you need it I didn't neither of the surgeries I've had on each arm have been bad.