Wrapup in 2014 - Six years post surgery

I've received many messages asking me for the current state of my arm. I'm happy to say (knock on wood) I consider the surgery a success. Was it a 100% success? Maybe for what I had done. I believe I have sensitive nerves for some reason. It doesn't seem to take much to cause my fingers to tingle. I can drive a car with my operated arm not flexed but straight and after a long while let go of the wheel and my fingers tingle, but that's not often. Most of the time the arm is great. I don't ever have the burning like I did previously that I can recall.

My right (un-operated arm for that procedure) arm is also quite a bit better than it used to be but every now and then I consider going in for surgery on that arm since it can still act up on occasion. IE my operated arm is definitely the better arm and I hardly ever notice anything with it.

The scar is never a concern of mine now but it was prior to surgery. It's really not visible where it is on the arm unless I hold my arms above my head to stretch but really, who cares :)  Would I do it again? Certainly.

Why did I have that weird recurrence a year after the surgery? No idea and thankfully that went away never to return. I wonder if there was some weird part of the healing process since they say nerves can take a year to heal - maybe that was the final plug-in wake-up recovery portion (although it surely didn't feel like it). That will remain a mystery. I don't weight lift like I used to so maybe that was a cause. I am very active though. I'm an avid mountain biker & runner at age 40 and like to hike big mtns and workout (cardio and light weights) to prepare for challenges like Tough Mudder. I mention this only to make the point the arms hold up pretty good for that, although sometimes the right un operated arm lets me know when I'm pushing it too much (which sometimes doesn't feel like much again prompting thoughts to get surgery but with a third child on the way and two toddlers the timing never seems right)- far far better than it used to be though.


Here's a quick pic of my arm (taken from hotel I'm staying at late night as I write this if you are wondering why I decided to have a shower in the pic). I have very bony elbows anyways, so that's not an effect from the surgery :)

Signing out now - best of luck! Adam

Another update

weird. ok.. so the HNPP test came back negative - which is the good news. Why my nerves seem to be sensitive at times? Not sure. My arms haven't been 'bad' lately (ie no flare up in a couple months now although I still feel it) knock on wood.
Left arm that I had the transposition on I've tried to especially sleep with it straight. I thought I was but my Wife every now and then wakes me up when she sees I'm sleeping with them bent.

Another interesting thing I noted - when we go surfing in cold water and then come out once I'm quite cold - my hands tingle like crazy. its so intense its such a weird feeling. It doesn't hurt.. just weird.. I know : )

HNPP?

Ok so my arm I had surgery on still acts up at times. It's better than the other hand but I do get weird twitches in it. After having surgery and being great for a year and then acting up again made me wonder what the heck is going on. I've seen several doctors and no one seemed to give me anything decent. My EMGs came back fine but something is definitely not OK. Finally I went to a neurologist a friend highly recommended. He said it's possible I have HNPP which I had never heard of. It basically means genetically I am more prone to pressure palsies. Since my arms aren't the only thing affected this does make sense, so we got a genetic test done. I'm awaiting the results.
This is defined as:


What is hereditary neuropathy with liability to pressure palsies?
Hereditary neuropathy with liability to pressure palsies is a disorder that affects peripheral nerves. These nerves connect the brain and spinal cord to muscles as well as sensory cells that detect touch, pain, and temperature. In people with this disorder, the peripheral nerves are unusually sensitive to pressure.
(from http://ghr.nlm.nih.gov/condition=hereditaryneuropathywithliabilitytopressurepalsies)

Hereditary neuropathy with liability to pressure palsies causes recurrent episodes of numbness, tingling, and/or loss of muscle function (palsy). An episode can last from several minutes to several months, but recovery is usually complete. Repeated incidents, however, can cause permanent muscle weakness or loss of sensation. This disorder is also associated with pain in the limbs, especially the hands.

Strange issue a year later

My left arm had been doing great.

In the last week both arms kicked into high gear.. including my left arm which has been on the rise for a year, now tingling is back.. bad sensations. pin prickles that pulse with my heartbeat at times. Also other areas are acting up too (legs) which leads me to wonder if something else isn't going on here to make my nerves (all of them) more sensitive... but the left operated arm feels worse than my other arm today for literally the first time since this all happened. I did a long drive recently.. but Im pretty sure I've done that before so this doesn't make sense. I have a blood test scheduled to see if there isn't something else going on (btw.. I had an emg recently that showed my operated left arm to be basically back to normal) so this is all weird.

10 months later all is well

am indeed doing quite well now. I've successfully beat up both arms this summer between software development and lots and lots of mountain biking. My right hand, still an issue (that arm I had the endoscopic procedure on) and my left hand (the arm with the transposition) has been doing great. Its not 100%, but prob 80-90%. I still have a weird feeling in it every now and then - like mild pressure in the hand, but no burning like before. Sometimes though I do wake up with the fingers tingling. It is rare and this didn't happen to me often before the surgery, but would surely take that over what I had before. That is rare though and probably if I sleep with the arm all curled up. So all in all looking back, recovery was a snap and now I dont even think about the arm much. The scar is slightly numb around ie.. well not numb but decreased sensation. That is normal though with any significant incision to the skin and I really don't notice/think about it unless I specifically touch the elbow and think about it. If you are about to get the surgery, its not bad. Besides sleeping discomfort the first few days it wasn't a huge deal. I just remember thinking 'wow.. wondering after all this time I finally had it done.. and now its all uphill from here' so keep that in mind : )

The incision is of course visible but the part along the formarm is hardly visible but the part near the bicep side of the arm is a little more visible. Not bad though at all. I may have the other side done this November or so.. we'll see : )

I did not have an emg yet on that arm but may have to get one just to see what the difference is and if there was a full nerve recovery in terms of conduction speed across the elbow.

Hopefully almost last doctors appointment

Had my roughly two month appointment last friday.
Grip strength:
Left 130, Right 150

I was told things are looking good (elbow still somewhat numb but at the same time hypersensitive to the prickly wheel they run down your arm and hands). That was from the incision itself I believe.

Its been pretty good lately.. definitely better than two weeks ago. I was told I can use it for most things now, just basically dont beat it up... IE no mountain biking yet. Doh.

So... next followup is end of february, hopefully I will get the OK then and I can fully test arm out with exercise and bike riding. Right arm has actually been pretty good lately as well. I've had almost no tingling in the left hand, even after taking both dogs for a long run the other day and a leash in both hands. I was told I can go skiing now too. WOOHOO!!!!

About 7 weeks post op

Grip strength: 100 left, 150 right

The last doctors appointment two and a half weeks ago I didn't post anything on. The doctor said my symptoms were not typical, and you would think that the surgery corrected the issue and shouldn't feel additional tingling when I do activities like type on the computer or lightly use my arm. He thought maybe it was just my body saying "you are doing too much" and to give it another month or two.

I spent the last two weeks in PA. When back there I didn't use my arm much. I used it on the computer with no problems. I did some painting with it back East utilizing the arm lightly and had no problems. I came back to CA and used the arm a little bit more and bam. Today my hand felt worse and fingers tingly again.

So.. 7 weeks and still tingling. This tingling is not what I felt before surgery.. it is worse.. err should I say different. I didn't really feel specific pins and needles, that was rare, more numbness, lack of sensation and an irritated feeling. So.. I have to be careful with the arm. I was going to try to get the other arm operated on quickly.. but its best to wait and see outcome.. although I feel confident (hopeful) this will resolve itself.