Post Surgical Pain after bilateral Carpal Release and bilateral Ulnar Release
I am a 34 y/o male of a healthy weight. In the fall of 2018 I began to notice moderate numbness in my left arm. I ignored this until the numbness was also in my right arm and in both of my hands in all of the fingers. At the time I was doing a lot of cycling (100mi/week), weightlifting 3 times a week, and practicing my guitar 12 hours per week. I began to cut back on all of these hobbies and my numbness stayed the same. After this I completely stopped all activies. My numbness remained. At this point I became very concerned with my arms thinking I may never get the feeling back in my arms so I better go see a Dr. and figure out what is going on. My PCP referred me to a nuerologist who gave the me a nerve conduction test. I tested positive for Ulnar in both elbows and Carpal in both hands. The nuerologist then referred me to a hand surgeon who told me I need to have surgery on all four areas and that his success rate if 90%. Out of fear that I may never be active the way I once was I accepted the surgeons advice. In Feb of 2019 I received surgery on all four nerves. After the surgery I received only a slight let up in numbness but the pain was terrible for months on end. Finally two years later in 2021 I went back to the hand surgeons office. The surgeon had retired so I saw a new surgeon. She gave me an injection in both wrist which only made the pain worse and then sent me to the nuerologist again to have another nerve conduction test. The nuerologist tested my neck also and diagnosed me with cervical radiculopathy. The hand surgeon then referred me to a pain specialist. He sent me into have a cervical MRI. They concurred that I have cervical radiucopathy so he sent me to a pain management dr. who gave me cervical steroid injections which only made the pain worse. I went in for 3 injections total with no relief. This Dr. sent me in for another MRI. Sidenote: After these injections I was diagnosed with papillary thyroid cancer and had my thyroid removed. The cancer was right opposite to where the injections took place and xray machine was held. Cancer is now gone though. After the pain management failure I was then referred to a nuero surgeon who then looked at both MRIs and said I don't have cervical radiulopathy and he referred me to another nuerologist. I am set to see this nuerologist at the end of Oct. I would describe the pain I'm feeling as pain radiating from my ulnar and carpal nerves and shooting up and down from my finger tips to my neck. The pain varies from moderate to severe. The pain is constant day and night but seems to flare up at random and also when I'm under stress or using my hands more. My hope is that posting this story I can have someone who can tell me what is going on because each Dr. I see just seems to lead to more problems. I have put all of my hobbies, career, and generally all aspects of my life on hold. Posting my story is just a hail mary I suppose. Thank you for reading, Patrick
Original nerve conduction studies can be seen at https://ibb.co/y8PHfm7
Thank you
There are a variety of odd things about those results. The most convincing lesion seems to be the right CTS which would rate as grade 3 by my standards. The left median nerve result is actually better than the left ulnar and much the same as the left radial nerve - nerves which we would usually use for comparison so I'm not altogether convinced by the left CTS. There is something odd about the velocity calculations with the right median nerve showing a longer sensory latency than the left (4.3 vs 3.8) but a faster conduction velocity (50 vs 48). If they were measured at the same distance, as is usual in the US then a longer sensory latency should result in a slower velocity. The normal values are much tighter than mine so I guess this is a warm climate so we'll take them at face value. The ulnar sensory studies seem to suggest an ulnar nerve lesion at the left wrist but looking at the traces I'm not really happy with those recordings and the 88 m/sec conduction velocity for the right ulnar sensory is implausibly high so I think there are recording problems there. Similarly a right ulnar around elbow conduction velocity of 100 m/sec is superhuman and the drop in amplitude of the left ulnar motor potential above the elbow is not really significant so I'm not convinced that you had evidence of ulnar nerve problems at the elbows on either side. All of the f-wave latencies are prolonged however which should make one wonder about a generalised polyneuropathy. Even the grade 3 right CTS would not necessarily have needed immediate surgery so I think the original surgeon was a bit 'gung ho' by my standards. JB
Yes it is a warm climate (Texas) but it was in January so the temps are typically 40-70F that time of year.
Do you have any experience dealing with people in a lot of pain post surgery years later? What do you tell patients to do when they are in chronic pain? They won't prescribe me pain killers.
My latest diagnosis is nueropathy. That seems like a catch all term for when they can't figure out what is wrong with people. Is there a specialist I should be seeing other than a nuerologist? I have no clue what to do at this point. I have tried chiro, PT, acupuncture, you name it.
Thanks
Patrick
Neuropathy is indeed a fairly catch all term. Translated it just means pathology of the nerves so it covers everything from vitamin B12 deificiency to leprosy. That initial set of test results would immediately have made me wonder about a polyneuropathy, ie a disorder affecting all of the nerves rather than just a case of one injured or trapped nerve, but that would then require further investigation to try and pin it down, possibly nerve conduction studies in the feet and a wide variety of blood tests, though quite often it proves impossile to be certain either about the diagnosis or the cause. Treating nerve related pain is a whole field in itself and I can't really get much further with this on here but neurology is certainly a good speciality to start with, preferably one who sub-specialises in peripheral nerve problems - it's quite a specialist interest. I'm afraid I don't have any local contacts in Texas I can recommend. JB
Today I finally had my office visit with the neurologist after waiting for several months. She stated that because of the complexity of my case she would only be able to refer me to a pain specialist for pain management and to a hand surgeon to asses the possibility that there was damage to my nerves from the surgery. She offered no testing. The nerve conduction studies and MRI that I have had done is as far as she goes in testing. She also would not prescribe pain meds as a matter of hospital policy despite my high pain levels.
The hand surgeon she referred me to is 100 miles away(I live in a provincial area). She stated that this particular hospital has a research facility attached to it and would have greater resources along with neurology specialist that have more resources.
I'm thinking of doing my own research regarding finding a Dr. but the site she referred me to has an excellent reputation. Patience is probably my best bet at this point. If only the pain would die down so I could sleep better and be more active. Unfortunately the pain specialist didn't have any appointments for 4 months sigh. At least the pain specialist is local.
It does sound as though you are out in the sticks a bit. I would certainly want further nerve conduction studies in this circumstance. Have you noticed any symptoms in the feet at all? JB
I did have another nerve conduction test done after the surgery. This was done 2 years post surgery and about 22 months ago from today. I can post online if you'd like to see the results.
I have no symptoms in my feet. The pain is primarily in my arms but on a day of a real bad flare up I get pain and stiffness in my back, hips, and legs but never down to my feet. More often than not the pain is around the four nerves that I had surgery on. Those nerves being median bi lateral and ulnar nerves bi lateral.
Thank you for the feedback.
It's often useful to look at how nerve conduction results are changing over time and a 22 month gap from the last set is certainly long enough for them to be worth doing again but I wasn't altogether happy with the first set. If you want to post the follow-up ones I'm happy to take a look. JB
https://ibb.co/7CR0098 Here are the most recent nerve conduction results. Thank you for taking a look Dr.
A couple of updates:
I was prescribed gabapentin at my last pain Dr. apt. The pain relief was non existent and the side effects were pretty serious including irritability among other things. I have been set up with a different pain dr that I will see in March at a clinic that has a better reputation than my current Dr.s clinic.
Regarding the neurologist my apt in April was cancelled for no apparent reason. I have had my apt pushed back to June. Who knows if they will push it back again. It is evident that there is a shortage of neurologist.
My pain has increased and most days I'm left sitting around because of pain and stiffness. Icing, heat, and stretching can relieve pain to a small degree. The pain is still primarily in my arms in particular around the incision sites form the cubital and carpal surgery but also knots have developed in my upper arms and pain is in my neck and spine most days as well.
If I could just get a little relief in pain I think the stiffness would back up and I could function a little better day to day. What concerns me the most is that the pain is worsening despite me living a fairly healthy lifestyle given my pain.
I can't currently access that latest set of nerve conduction results and I can't remember if I've actually looked at them and replied by email. From across the Atlantic I can only sympathise and comment that the whole problem really needs looking at from scratch by a neurologist who is actually interested in peripheral nerve disease and has the resources to investigate it properly. Unofrtunately, as you are finding, such people are relatively few and far between. JB
Here are the latest nerve conduction results. https://ibb.co/W6XL7L9
I will be contacting another hospital that is supposed to have the best nuerologist in Texas soon. If that doesn't pan out I'm willing to move somewhere that does have a nuerologist that can at least diagnose me if not even send me in the right direction to get better.
Thank you
P
OK I can see those. For the most part they are pretty normal results. The quoted normal limits are those for a hot climate I think :-) The slight median nerve slowing is not unusual after surgery and does not necessarily indicate continuing CTS, the important point is that these are considered to have improved compared to January 2019 set - this is certainly not "CTS moderate in severity" by my usual standards but their idea of an acceptable normal distal motor latency at <3.9 msec is much 'tighter' than mine and if we accept their normal range this would indeed make this grade 3. The evidence of neck problems at C6 is subtle, but probably worth pursuing given the continuing symptoms and uncertainty over diagnosis. JB
First off, thank you for the feedback. So what you are saying is that their standards of what constitutes CTS are much more broad than your standards or at least by English/UK standards? If this is so you could reasonably argue that CTS is probably over diagnosed resulting in more surgeries in this country rather than your country. This wouldn't surprise me at all given American stereotypes. Sigh...
My neck was cleared as having no problems by an MRI I had conducted last year. They said that I had a healthy neck yet the neurologist and you are basically saying that the nerve conduction test are showing that I have subtle problems in my neck. This is very frustrating.
Again, thank you for the feedback. You have been of tremendous help. I will keep this forum updated. My hope is that I continue to get feedback from you and maybe help someone else that is struggling with the same condition by posting on this forum.
Patrick L.
One of the difficulties with nerve conduction studies is that they are temperature dependent so that what is considered normal nerve conduction velocity with the hand at 32C is in fact pathologically slow if the hand is at 37C. We all try to deal with this in one way or another, by warming limbs and recording temperatures or applying correction factors etc but it remains the case that labs in very warm climates (Texas, Florida) do tend to have different reference ranges to those in the UK and Canada :-) My grading scale was designed to allow for this and result in a situation where two labs with different reference ranges should still arrive at the same grading.
The neurophysiological evidence of neck problems is subtle and may not be 'real.' Unlike the nerve conduction measurements it's very much a matter of subjective interpretation. Neverthless sometimes the EMG is right and the radiology wrong so I wouldn't discount the possibility of neck problems just because of an old MRI.
Practice in the USA is substantially different to that in the UK and much more variable from place to place, largely dependent on the insurance status of the patient of course. I do spend a fair amout of time visiting the US for conferences and teaching. Comparing the systems and approaches is a fascinating subject. In general I think that money plays far too prominent a role in US medicine. It's impossible to keep money out of it altogether of course because resources everywhere are finite, but in US practice it often creates perverse incentives which subtly alter the way medical services are provided. JB
I have good news for once. I went to a neurologist that specializes in neuropathy this week in the nearest "big city". Supposedly this is the best hospital for neurology in Texas and in the top 20 in the country. Also, the Dr. has a reputation for solving problems that other neurologist are puzzled with. He gave me a nerve conduction test and asked me a ton of questions. From my answers to his questions he thinks I may have Myofascial pain syndrome or something more serious such as an autoimmune disease. He said my carpal and cubital tunnel were mild at worse and that my median and ulnar nerve showed no obvious signs of damage from surgery. The nerve in my cervical spine also showed no signs of problems.
His instructions were for me to submit to a blood test testing for autoimmune conditions and for me to come back to him next month to have a nerve conduction test on my legs and lower back. He seemed confident that he can figure out what is wrong with me.
I am also seeing a new pain specialist who has me on muscle relaxers and a slightly higher dose of pain killer. I am finally able to sleep. Due to the sleep problems being somewhat solved on good days I'm even going cycling. My bicycle is a hybrid design which is a cross between a road and mountain bike with a relatively upright position not worsening my arm pain. Being able to exercise again is a massive psychological boost for me.
Thanks for pointing me in the right direction. I will continue updating this forum as things develop.
PL
That's a pretty grim tale for a 34 year old man. Neither CTS nor cervical radiculopathy are common in your age group in the absence of trauma. I would like to see the original nerve conduction studies if those are still available. JB