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 : )
Friday, April 30, 2010
Tuesday, April 20, 2010
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.
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.
Friday, November 20, 2009
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.
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.
Saturday, September 5, 2009
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.
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.
Monday, January 19, 2009
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!!!!
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!!!!
Monday, January 5, 2009
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.
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.
Tuesday, December 16, 2008
Almost a month post-op for ulnar nerve transposistion - Second follow up appointment
Monday Night -
still the same pains that developed Friday. They were gone in the Am but even when I use the arm a little bit they are back. I thoughts maybe it is hypersensitivity from the nerve 'waking up' but I wouldn't have thought i had that much damage to do that.. since at times I felt very minimal symptoms (although more severe at other times of course - warranting surgery).
Who knows...
The thickness under the scar is getting smaller. I wish my fingers would feel normal all the time though. It felt like it was getting like that a week ago but since last friday has been worse again. Weird.
I can sleep ok now though without really any discomfort from the surgery.
still the same pains that developed Friday. They were gone in the Am but even when I use the arm a little bit they are back. I thoughts maybe it is hypersensitivity from the nerve 'waking up' but I wouldn't have thought i had that much damage to do that.. since at times I felt very minimal symptoms (although more severe at other times of course - warranting surgery).
Who knows...
The thickness under the scar is getting smaller. I wish my fingers would feel normal all the time though. It felt like it was getting like that a week ago but since last friday has been worse again. Weird.
I can sleep ok now though without really any discomfort from the surgery.
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