Poor outcome of carpal tunnel surgery

The following discussion has been continuing on the site here for a while but got erased after being hijacked by spammers posting dubious adverts. I am here reproducing the discussion from a copy - JB

(MaryAnne) Dear Dr. Bland,
I want to thank you for your expertise and insight into this topic. Your guidance has been invaluable to me as I am post surg. with some issues that are not resolving.
I was dxd with cts in 7/11. The neurologist advised me to wear a brace for 4 wks then return. After I used the brace my symptoms totally disappeared. In 11/ 12 my symptoms re appeared , so I wore the brace . After 5 weeks or so and no change I went to see ortho and told him about some other symptoms I was having: my hand would fall asleep at night and awaken me, I would shake it out and then be ok .. I had additional tingling in the other 2 fingers only at the tips. I did not have any other pain, or discomfort, just slight tingling in tips of fingers. I thought the cts was worsening and I was fearful that I would have nerve damage. I went to see hand ortho and he did some hand tests, looked at my emg from neurologist from 7/11 and confirmed dx of cts.
On 2/28/13 I had open ct release surgery. When I awoke from procedure it felt very bad, I told the surgeon in recovery that it was 100X worse than when I was dxd ( this is quantitatively incorrect but I wanted him to understand how bad it was feeling ). My fingers were far worse than they had been before surgery in terms of symptoms, and a my thumb and palm area were totally numb... My thumb felt like it was on fire on the palm side right to the tip. I did not have any symtoms near this . Also there was an area that I could press on in my hand that would make my pointer and middle finger go totally numb. The dr said the release was a success b/c my hand was not falling asleep afterwards. I explained to him that it was already asleep, and is always asleep now... or on the way out of that asleep feeling. I hope I am describing this properly.
It is 5 weeks later I am seeing an O.T. 2x weekly and it is still the same, no change at all, except swelling went down somewhat. . I spoke with dr. after I read some of the advice you gave to people who had the similar issues to what i had and asked him to do a ncs or emg... he said no, he would not because it would show severe carpal tunnel syndrome... and that I had to heal. He said it would heal 1mm a week , so at that rate I wont feel any relief for about a year .. This hand is unbearable . I cannot touch many surfaces, it feels as if i have 100 glass splinters in the tips and the rest is hypersensitive. My thumb feels as if its on fire but only on one side the outter side of the thumb and the pad of my finger. My palm just under my pointer is totally numb and that extends down to about the top of the scar from surgery and over to the thumb.. This was never like this , not even close. He has dxd me with innervation hypersensitivity. On my own I went to see my neurologist and he gave me steroids and gabapentin.It has helped with swelling...
Everything I touch gives me pain...and nothing except not using it relieves the feelnig. I am trying to figure out what happened, reading and trying to understand. I have read tons of stuff on cts, complications , papers etc.. .... I have looked over hand diagrams to pinpoint what is going on . I even thought it could have to do with the nerve blocker that was given in the Ulnar nerve .. I had alot of swelling and pain at that site, I told dr. at my post op visit.. ... and from what I read there is a branch of the ulnar nerve that goes into the area that I cannot feel... I thougth this could be a result of that ...but what do I really know... I read alot of posts on your site and none really speak to me about my specific problem. Some are similar but not precisely my problem.
Dr. basically says I had severe cts to start with and there was damage before he did surgery it will take alot of time. I asked how he knew it was so severe since no emg before surgery and no symptoms for 1 year since original dx.. he said he could see it visually when he went i. I asked what my number was, ( referring to the severity ) b/c I see on here you ask if its a 1-6 and he said he didnt understand what I was asking him. Of coruse I tried to explain but he is the Dr. and I probably didnt explain it correctly.
I know this is alot to take in and I know every case is different. Could you suggest anything else I can do to figure out why this has turned out so badly and what I can do to help myself. I feel ridiculous trying to tell the dr what I need on the other hand I feel I have to advocate for myslf.
Thanks for your time ... Keep up the good work with CTS sufferers.. I have a feeling, after watching how much were are overusing our hands these days and placing them in peculiar positions that hand issues are going to become the hot topic of surgery in the near future... too much typing and texting ... etc...
MaryAnne

(JB) Well I guess the one thing you can say about this is that feeling markedly worse after surgery is definitely not the expected outcome so something is wrong here. The closest story to yours on the website is the posting from an Australian lady who was dramatically worse after her second hand was operated. She had the previous experience of the successful first hand to compare with of course. Look for the posting from 'Annepan' about 2 or 3 pages or so into the general forum (and my apolgies that the search function in the website is rather erratic).
Many surgeons think that they can judge the severity of nerve damage by looking at it at surgery but I am afraid I think they are mistaken. The only way to satisfactorily assess the functional state of the nerve is with nerve conduction studies. In an ideal world yours would have been repeated before surgery as the original set were quite a long time before the operation but even the ones you have are better than nothing.
Get a second opinion from a reputable hand surgeon, get some nerve conduction studies done, and if you have anyone in the area with the necessary expertise, get some ultrasound imaging of the carpal tunnel and median nerve. If you have a copy of your original nerve conduction studies we can try to grade it (the grading is based purely on the nerve conduction studies so no wonder your orthopaedic surgeon doesn't know what it's about - he is seemingly not a believer in the usefulness of NCS) JB

(cobra) Well this is my first posting...and this person is saying they feel exactly as I do..certainly much worse than before..I had open release surgery done eight weeks ago,and the wound has healed well,although it is extremely sensitive and even the breeze blowing on it hurts.I had nerve conduction study done which showed moderate suffering of the nerve,but all the muscles were very tight.Then it hurt badly...now it hurts MUCH more!!! Im told it all takes time,and I am sure that no hand would appreciate being hacked about like that....at one moment the surgeon must have brushed the nerve...as with all the local anaesthetic I shot off the bed...therefore that wont have helped.My whole palm and all fingers feel numb but are actually hypersensitive,they were before but are now much worse,Doctor Bland I also replied to your e mail separately I hope it reached you.I have to begin work now and therefore have little time for tests etc..Ive had so many but because I make an effort to try and look half decent
I think that the doctors are fooled...and I should go in when I have no make up on and have been crying with frustrating pain.I am told to exercise...but this makes my arm and shoulder start to burn...next step is MRI of the shoulder to see if the trapping is there and never was in the wrist area...all these pains make one too aware of waiting for the next one!!! and they DO come if you think about them but then they come anyway.!!! it is wonderful that there is the possibility of sharing experiences with others..where I live this would never happen...so however UK folk moan about the NHS DONT!!!! certainlynot until you have experience with other systems and health services...God bless real GP's too they only specialise here!!!

(MaryAnne) Dear Dr. Bland,
I did not realize how lengthy my last posting was until I sent it. So sorry for all of that reading, there are alot here who need answers and you are thoughtful resopnse is appreciated. I am very grateful to you for your time and help. This website has been the most helpful source of information on the web. I ve been doing alot of research and it always comes back to this website. Thank you for sharing all of this.
Yes you can say I am markedly worse since surgery...I did read Annepans posting, and now Cobras, and they are similar to my outcome. I got some direction from your response to her. I actually tried to get my ortho to do a ncs after 2 weeks with this outcome he said no. It would show severe carpal tunnel. I asked about wrist ultrasound and he said no and gave me a reason, but i cant recall it right now.
One of your postings( I think it was to annepan) said if after 2 wks it is still worse than before surgery and there is no change , then something is wrong and needs further study. I did try. After ortho dr i went to my neurologist and he gave me gabapentin and medrol . ( this is 4 wks post surg) I used it for a week and swelling went down, was not as tender when pressed certain areas, still going numb but not as bad. Other symptoms remained the same. Ive been off it for 3 days and its back to when i touch it , my 3 fingers go numb 1, 2, 3. ( thumb, pointer, mid) . Neuro dr put me back on Medrol. already helping. I dont think gabapentin is doing anything but i will do as he suggests. Neuro dr is sending me for wrist mri.. trying to , but insurance may not agree b/c he is neuro and they want ortho to request this test. but neuro will try , he wants it as soon as possible. He is very proactive and totally gets what im feeling. He believes it will be a good dx tool and I think it will provide me with some answers that we can work with. What do you think about the wrist mri as a dx tool ? What exactly will it show?
These are the results of my original Nerve Conduction Velocitty test. I just wrote transposed what was written in report, dont have a clue what any of this means or if it will be of any help or even if it is what you are talking about when you say NCS.
Motor Nerve- Upper Left MEdian Proximal Lat 8.9, Distal Lat 4.5 Distance 22, Dispersion/Amp N NCV 50
Left Ulnar Prox Lat 8.3 , Distal Lat 2.2 , Distance 32, Dispersion/ amp N NCV 53
Left Radial Distal Lat 2.2
F Response- Left Median 25, Left Ulnar 26
Sensory Nerve ( snap) Left median 4.6 Dist 11 ( cm) Amp MIcrovolts<50
Left Ulnar 2.6 Dist 10
If my CTS was so severe from these test results then maybe there was alot of damage and it will take time, a year he says... i cant imagine this for a year......
I asked ortho what is this called that I am experiencing, he dx this as reinnervation hypersensitivity .. i feel like i have frostbite and am in the constant state of thawing out, burning fingers always feel hot , glass spllinters in fingers...... I chose to have surgery to avoid nerve damage, and now its far worse than I could have imagined ... with new problems..
. If I have to wait to heal I understand but I havent had one bit of relief from the surgery date... no change.. just saying that makes me sweat.... . I probably wrote too much again.. I wont continue this lengthy writing, I promise. Thank you again ...MaryAnne

11 April 2013 - 7:41am
#4
jeremydpbland

Don't worry about the lengthy postings - the more detail the better.
First your nerve conduction results. Those are left hand results only and I guess we are therefore talking about your left hand throughout (are you left handed?). Those are probably grade 2 NCS so you had only mild nerve damage in my terms before surgery and surgery should have produced immediate relief of symptoms. The caveat to this of course is that they were quite a long time before surgery and your CTS may have got worse before operation but they are all we have. Most patients with results like that are waking up with symptoms nightly before surgery and come back saying that the night after the operation was the best night's sleep they have had for ages.
Second MRI - this gives pretty good pictures of the median nerve but just how useful it is depends more on the person reporting the images than on the method used to obtain them. You need someone who knows what to look for not only in carpal tunnel syndrome, not too difficult to find, but ideally what to look for after failed carpal tunnel decompression and there are only a handful of people around the world with particular expertise in this problem. MRI is also comparatively expensive. Repeating the nerve conduction studies is easier to interpret - if yours were the same or worse 6 weeks after surgery I would suggest that there are good grounds for re-exploring the carpal tunnel looking especially for part of the transverse carpal ligament which has been missed.
Third - re-innervation hypersensitivity - this describes a phenomenon seen when a nerve has been injured badly enough that the nerve fibres themselves have broken and have to re-grow from the point of injury back to where they used to connect to the skin to provide sensation. The skin area which is newly re-connected to the rest of the nervous system when the regenerating fibres arrive can become hypersensitive. Re-growth of nerve fibres takes weeks, months or even years depending on how far they have to go. Your symptoms began immediately ater surgery (within minutes) and cannot possibly be due to re-innervation hypersensitivity.
Fourth - current treatment - Gabapentin is just trying to suppress the symptoms. Worth a try but not reliably effective in CTS. Medrol (Methyprednisolone) is a steroid and what you might expect it to achieve depends very much on dose and route of administration. CTS itself is responsive to steroids but few people use oral steroids to treat it because of side effects.
I guess form the mention of insurance and the syntax and drug names that you are perhaps in the USA so you may be rather constrained in what you can do but I would definitely want a second opinion from a different hand surgeon and repeat nerve conduction studies. JB

11 April 2013 - 2:27pm
#5
MaryAnne

Good Morning,
This is an eye opener for me ..I read your recent post many times... I feel as if I know enough to present this once again to hand ortho and to Neuro doc. Ive been doing so much reading and trying to get this but its very clear now what else needs to be done and at least I know the language and reasoning behind my requests to them. Even if they disagree at least they will know that I am gaining some insight into my problem, with your help of course...
I feel like no one is really talking frankly with me ... My own dr of 25 years says it takes time.. I believe him and have great faith in him, but I dont think he understands how much worse it is now, than it was before.
Funny you should mention that I should have had the best nights sleep that night.. When I went to the ortho dr the day after surgery , he asked me if i had a great nights sleep, i said no, I felt like my fingers were sausages I said 100X worse than before ... and my fingers are now always asleep so shaking them at night doesnt make any difference....he said did the pinky fall asleep? , i said no , so he said the surgery worked...the other fingers were just going to have to heal.. After surgery he also said it was " tight in there" thats all he told me when I woke up ...
I am right handed. I only sent left hand test information b/c thats where i had the surgery. Re: dx tests. I asked ortho for wrist sonogram he gave me a reason that I cant remember, and when I mentioned to neuro he said an MRI would be better, however my ins may give him a hard time b/c he is a neurologist and not an ortho. Neurologists cant order thistest ( wrist mri) typically. I am giong to ask for ultrasound as you have suggested if the mri doesnt get approval. I am going to another ortho shortly. He is considered the best in this area by far. I couldnt get consult with him before surgery for a while so I went with another recommendation from the regular ortho doc that we use.
My neurologist has been very concerned form the moment I saw him and I can see he is not in agreement with ortho, but isnt saying anything until we get test results..Neuro is the only person who is really getting this and doing something to try to get me on the right track.. and you too.
I really needed this information, and I cant thank you enough. i have been trying to learn on my own and its hard to understand and present to the dr as I am not qualified or educated in this area. I have said things that you told me and those are the things that gets him thinking ( ortho in particular) ... Neuro gets it... totally..
Thank you so much.. Have a lovely day, ..
MaryAnne

11 April 2013 - 4:43pm
#6
MaryAnne

Dear Dr Bland,
I just received a call from neuros office and the MRI is not approved b/c he is not an orthopedic doc.
I decided i am going to see the ortho surgeon and ask him why he will not send me for this test or an ultrasound. I am not one to beat around the bush and I dont want to offend him but I also do not want to have this discomfort if it can be mitigated in some way.
Also I want to ask neruo to do emg again , I dont understand why he wouldnt do it , I did ask.. I think he said it wouldnt show conclusively what is causing the problem. He said something of that nature. It will show severe cts and that would be attributed to me healing from surgery. I think that was his reasoning...
I am no better in all this time since surgery, with the exception of somewhat less sensitive and I believe that is the medication and ot. It could also be the healing process...
But for the most part at night when med wears down I feel the same as when i woke up from surgery. but not as swollen.... The hypersensitivity is mostly the same... and the numbness in skin is exactly the same. ( I didnt have this before surgery ) ..
I think it is worth more exploration to find out why. He has been consistent with his answer that my cts was severe when he went did the surgery... there was nerve damage ( visible), he said the nerve was flat.. and I am steadfast with my response that I did not have one single symptom for a year and a half before 2nd recurrence of symptoms so how is it possible that I could have this kind of damage..
Am I way off base with my thinking ?
When I see him we hit this same ball back and forth... with the exception of the last visit when he tried to explain how damage occurs. He used the ex. of me falling asleep on my arm for an hour and waking up with it being numb and having to shake it out.... he said imagine falling asleep on it for 1.5 years, there is going to be damage. I said but it wasnt asleep, I didnt have symptoms, none at all. I said wouldnt wouldnt there also be symptoms? and from 7/2011 until 11/ 2012 I had no symptoms whatsoever....he said not necessarily when the release occurred the nerve work up..this is whats causing these symptoms now.
. and so we hit the ball back and forth. Im tired of that, its pointless to go on and on I just want to get better and not wake up feeling my hands every day .hoping for a change... I want to do something about it .. or at least make sure that I am on the right track..I also want to prevent any further damage from scar tissue formation.
Thanks for your guidance and thoughtful responses ...
MaryAnne

12 April 2013 - 6:15am
#7
jeremydpbland

Pity about the MRI. Your neurologist will know more about the local expertise available around you so if he/she expects to get better answers from MRI that is probably because there is no-one with the necessary skills available for ultrasound so I would not push too hard for one test or the other - it depends on local circumstances and you will have to be guided by the locals.
In terms of severity assessment - surgeons have been describing the nerve at operation as 'thin' or 'flat' or 'pale and ischaemic' for many years and one can see that placing an interpretation on what you can see in front of you at surgery is a very natural thing to do. However, it has become apparent since the advent of high resolution imaging methods that they have in fact been completely wrong all along about thinning of the nerve indicating severity of CTS. In fact the median nerve in CTS patients is larger than normal, not smaller. The illusion of local thinning under the transverse carpal ligament is caused by the fact that the nerve is even more swollen on either side of it. If they can be so wrong about this very obvious piece of visual interpretation then I think the chances of assessing the degree of local nerve damage accurately by eyeball at surgery are essentially negligible - for CTS at least, it is of course quite different for injuries such as nerve lacerations. I therefore pay only a little attention to surgeons comments about severity assessed by inspection at surgery.
There are some reliable indicators of the degree of axonal loss and demyelination of the median nerve in CTS. Wasting and weakness of the muscles at the base of the thumb is a sign of severe disease, as is fixed, unchanging loss of sensation in the median innervated fingers, but by the time these have developed it is beyond the ideal time for surgery so people should be treated before these signs appear. Interestingly, the severity of pain is not related to the degree of nerve damage. The nerve conduction studies are at present by far the best guide to severity but we are still investigating the role of ultrasound imaging in this respect.
What can we say about the time course of your symptoms - a short episode resolved by a splint, then a gap of a year with no symptoms, then a second episode not responsive to splinting. Essentially you are asking does this tell you anything about severity? The answer I think is that it only amounts to circumstantial evidence. If you are diabetic it will be wholly unreliable but assuming that you are not, then during the year when you had no symptoms you are not likely to have had advancing nerve damage. However during the period between recurrence of symptoms in November and surgery in February it is actually possible for the CTS to have advanced to any degree of severity - the rate of progression is enormously variable between patients and although, on average, it advances at about 1 neurophysiological grade a year, knowing the average rate of progression is of no more help in assessing the individual CTS than knowing that the average height of UK males is 5'10" is a help in guessing the height of a single individual. It is that variability in progression which leads me to suggest that surgeons chould carry out baseline NCS in the 6 or 12 weeks before surgery - but my suggestion has not been widely taken up in the orthopaedic world.
I still think your best chance of getting anywhere with this is going to be a second opinion from a different surgeon and it sounds as if you already have this in progress. A new surgeon does not have any psychological capital invested in the first operation and it's success. Please let me know how it turns out - cases like this are rare enough that we need to collect them together as much as possible - even if only through patient self-reports. My anecdotal experience so far is that virtually all patients who say they are much worse in the few weeks after surgery have a problem which needs attention - not all can be successfully treated but they should, I think, be investigated fully. I think we now have four in this forum, for two of which we know what was wrong, yours and the fourth case are unresolved at present JB

12 April 2013 - 1:05pm
#8
MaryAnne

Good Morning Dr. Bland,
Again, thank you for your time and very thoughful response. I do live in the USA , I live in Long Island a suburb of NYC. Quite a distance from the UK, but Im happy to have found your website. To be honest I could not find anything locally that presented a forum like this with a real person behind it. And I know you are real because I read about you too just to make sure you were real. and Im happy to report you sure are !! .. My nature is to investigate, and be just. Im a retired cop and am now a social worker.
While I did find alot of helpful resources , Brigham Young and Womens Hospital has excellent guidelines for this type of surgery, but this site, reading about the other post surgical experiences and your comments have really helped me through this, so thanks again so much.
You give me alot to think about. I was going to go back to the surgeon that did my surgery and ask foran MRI, or ultrasound. I even found a journal article that talks about the benefits of MRI with poor post operative outcomes that I was going to bring to support my requests......but have decided that I would contact an ortho hand surgeon who also specializes in nerve reconncetion in NYC, Hospital for Special Surgery. I dont think I have a cut nerve but I think he would be the man to distinguish exactly how the nerves have been affected. He has a stellar reputation and as you said he does not have the psychological capital invested in my surgery. I am hoping he will take my case.
I am not diabetic, I did not have any tenar atrophy, or weakness in my hand. My symptoms were slight tingling in the tips , first joint up in all 3.5 fingers, positive tinel reaction which by the way is worse now than prior to surgery maybe that is expected. If I slightly tap my wrist i feel electric shocks in myfingers, before he had to hit it with a rubber tipped hammer type instrument to get the response i get when slightly tapping now. I was also waking up at night shaking out my hand. I did not have pain, just a little aching ocassionally. He did Phalens assessment and asked me to let my hands hang down and tell me when they got hot. I did not know what he was doing, but I now know it to be Phalens. They never got hot anyway...
You mentioned de mylineization, I actually asked him that on our 2nd visit after surgery not knowing that you cannot see that with the naked eye. I felt awfully incompetent, which I am ..... but I had read that this would be an indicator of nerve damage, this is when he told me it was flat. I was not convinced that I was so bad and that was what I was sticking with and still am, however it is a moot point at this time since I did not have another emg to show exactly what grade I was. And, he is the surgeon and expert, I will yield that point to him at this time since I cannot prove otherwise. And btw, this is not about right or wrong I want to be better, and have my hand back and I want to know why I am so much worse after surgery.
I bet your suggestion to do a baseline NCS shortly before surgery is not popular.. lol... but I totally agree with you and I would suggest it to anyone I know who is anticipating the surgery. After my surgery I asked the surgeon , why dont you do an emg before surgery and his reply was that it would be too painful to put someone through that and he had the one from 7/11 .
I have learned so much with this experience. I will be sure to spread the message to anyone I know who is anticipating having surgery. Before my surgery I I spoke to about 5 people I knew who had it done, all had great outcomes. All waited a long time to do it ... way longer than I did. I understand we are all unique and there will be different outcomes. I just cant believe how this has turned out but am very hopeful that I will get better with the right care.
I will keep you and the people in this forum apprised of my progress and I intend to make alot of that. Have a lovely weekend and thanks so very much. Best, MaryAnne

12 April 2013 - 3:37pm
#9
jeremydpbland

One more worthwhile point about painful nerve conduction studies. Done well most patients tolerate them fairly well and do not find them a catastrophically unpleasant experience but there are certainly a few people who do find them very unpleasant indeed and about once a year I meet someone who I cannot test at all (which is not bad out of about 5000 patients). In the USA I think there is still a strong tendency to combine the electrical nerve conduction studies with needle EMG examination which increases the overall unpleasantness of the procedure but I have never been convinced that the needle exam is required in simple cases of CTS. I do not think sparing the patient the modest discomfort of NCS is sufficient justification for relying on results which are clearly out of date - no haematologist would argue that a blood count from a year ago 'would do' to spare the patient the discomfort of having another blood sample taken.
If you have the reference for your article about post-operative MRI I will check and see if it is one I have read.
Out of interest - I did ask the NIH to link to this site from their patient information pages relating to CTS but they have a policy of not linking to non US based websites
Oh! and the last time I checked I was definitely real :-)... more seriously I have tried to identify myself on here in a way which does allow people to look me up as it can be very hard to know what authority lies behind small websites like this. JB

12 April 2013 - 8:30pm
#10
MaryAnne

Hi Dr. Bland,
I thought the answer that an emg would cause me discomfort was flimsy but what could I do, he is the doc. I am a good advocate but I have to "somewhat" know what Im talking about first... i didnt have the confidence to be more challenging then..Im not at all worried about any discomfort or pain that an emg will cause. Its a means to an end in my estimation. I didnt flinch the first time, well the electric shock made me flinch but it didnt hurt ... and I really dont care what has to be done. Ill say a long prayer for my own peace and that will get me right through it.
Good point re: bloodwork results... The article I found was in the Journal of Hand Surgery , 1993 entitled Magnetic resonance imaging in the evaluation of persistent carpal tunnel syndrome. J Hand Surg 1993;18A:113-20. Murphy, R.X., et al.
I dont have it in front of me, this was what I jotted down when researching. I read the abstract and ordered the article.
Also Current Problems in Diagnostic Radiology has a published article "MRI of the Wrist" by: Dr. Mark Anderson, Kaplan, Dussault and Degnan- Nov/Dec 1998 Vol 27, No. 26 - 185-229 see page 222. You can get this article free on google scholar, or I can email it to you if you like. Of course I dont understand alot of the article, it is written way above my level of understanding but the key points I get.
It was kind of you to try to share this resource with the NIH, Im sorry they did not take you up on it. I looked briefly at their resources most of them I had already researched. I think the Brigham and Women's hospital Standard of Care: Carpal Tunnel Release was the best resource I found along with your site.
Yes I did have to do a little research to make sure you are a real entity lol, as you know so much deception on here. I just made sure of your authority and that you exist.
Well then, time to get things done and stop perseverating on this hand dilemma. It is not my style to get so caught up in something like this I just feel I have to be proactive and move quickly.
Stay well, have a great weekend, keep up the great work, and thanks so much for your help and guidance. I will let you know how things are going when I get appt with new doc. Hopefully its not too long a wait for an appt. Im going to work on brevity when writing to you the next time I cant seem to keep it short, lol...
Best,
MaryAnne

12 April 2013 - 10:15pm
#11
jeremydpbland

Thanks. I've read the Murphy paper in the past - only 8 cases re-explored and 7 of those had incomplete division of the transverse carpal ligament so it is essentially just a study of one complication. The Anderson review I hadn't seen - probably because it is really a general survey of MRI of the wrist with just a paragraph or two about CTS diagnosis and post-operative findings which does not report any new original data. JB

16 May 2013 - 3:39am
#12
MaryAnne

Hi Dr. Bland,
I just wanted to touch base with you because it has been a while. I have been unsuccessful in getting anyone to see me because none seem to want to treat me post surgery in that hand. I am trying to get my primary care physician to authorize an mri. I think its pretty late now to try to find out whats going on. I still have the same symptoms and the hand is falling asleep again totally , including last two fingers.
Its been an awful 3 months almost. I am going to Occup Hand Therapy 2x a week since surgery to help desensitize, it has helped somewhat but overall the way I am today is the way I was on 2/28.
I meant to ask Is a ncs the same as an emg ?
The surgeon is holding to the explanation that I was severe to begin with and the nerve was compressed. I got a copy of the operative report, it said the nerve was hour glass shaped, i think is the word he used. I thought of something you had mentioned earlier about the surgeon believing he can accurately visually assess nerve damage when the nerve is under the carpal tunnel and swollen on both side it gives the illusion of thinning. I tried to tell him this and he really put it down because of his many years of experience and the accuracy of his visual assessments. I relinquished the point to him because he is the expert.
If I knew I was going to recover from this I would just take all of this because the end result will be that I am no longer suffering with this pain. My fear is that I will be like this forever and that is unthinkable to me as it is so debilitating and frankly depressing to think that I cannot use my hand as I was formerly.
So that is what is happening. I am going to continue to try to get to the bottom of this but it is taking more time than I thought, and I think I was secretly hoping it would be ok by now.
Thank you so much for your help and guidance I will keep you posted.
Best,
MaryAnne

16 May 2013 - 11:19am
#13
jeremydpbland

Thanks for the update. Yes in common parlance EMG and NCS are used interchangeably to refer to the test which is often abbreviated to EDX in the USA - for ElectroDiagnostics - confusing with all the abbreviations I know. Hourglass shaped is a pretty good description of the 3D shape of the section of the nerve which your surgeon gets to see but it sounds as though he is not aware of the imaging literature demonstrating quite what that means. If you were in the UK and it was this bad 3 months post-op we would be reassessing the nerve with every investigation at our disposal trying to work out what the problem was. JB

17 May 2013 - 3:19am
#14
MaryAnne

Good Morning Dr. Bland,
Thank you for the continued education and support. The surgeon recommended I see a pain management doc. I can't take any opiates at all and quite honestly advil and tylenol are ineffective. I think I am going to get injections of something , somewhere...Ill see him tomorrow ...I cant see how this is going to help on a continual basis ... and I cant imagine taking these injections for 9 months.. The surgeon said it could take that long to get better and may not come back fully at all. I cant think about that.....
I was taking 500 mg of Gabapentin which neuro doc prescribed and it helped alot, except I was falling asleep all the time.. I had to stop taking it. Lyrica is another option but I dont feel comfortable taking that with what I have read.
I am not giving up with trying to get some relief here and find out what is really going on but I am a little discouraged that other docs wont see me, but I kind of understand their reasons... ( of course i didnt ask them , i was told by staff when I attempted to make an appointment, they dont accept patients who have had CTR)
We shall see what pain managemnt doc does and I will see neuro again and ask for emg...I think he will do that and I think he really wants to help me but his hands are tied b/c insurnce wont give me the mri if he ( neuro doc ) requests and i cant get a hand ortho doc to treat me b/c of my post op status AND the issue I am have ...
I am happy to hear that the healthcare system in the UK would have you pursue any dx tests, treatments etc... that could provide your patients with relief. I am still hopeful that I will get the help I need to resolve this I just have to be more persistent and your words are encouraging.
Thank you so much for your thoughtful and insightful responses, have a lovely weekend...
Best,
MaryAnne

17 May 2013 - 4:50am
#15
jeremydpbland

Sorry I can't do more to help - for purely selfish reasons I would love to know what your exact problem is but I can't do anything through the website which could be construed as direct intervention in your medical care because I am not qualified to to practice in the USA. I don't think that stops me repeating however, that I would find it impossible to manage this problem without repeat nerve conduction studies myself. Let me know how it turns out please. JB

17 May 2013 - 5:37am
#16
MaryAnne

Dear Dr. Bland,
You have done so much already.... I spend alot of time researching my hand problem, this wonderful site is just one stop I make. It has been very helpful and it is where I first read anything about failed carpal tunnel surgery from there I just kept reading and learning. You are an adjunct to my education about my problem.You are a great resource because you obviously love what you do and have in depth specialization in CTS. I have been trying to educate myself since the surgery. To me , this is like being in a classroom.
It is my hope that anyone who reads about my case will 1. make sure they are well informed before they decide to have the surgery and 2. explore all other options before making the decision. 3. make sure they have a ncs right before their surgery. If they do so they will have a baseline before to compare with the results after surgery. If one person does that all of our correspondence has been of great value to someone else ( besides me ) .
I APPRECIATE all the guidance you have given me. When I find out exactly what is wrong with me I will let you know the details.
I understand ENTIRELY that you cannot intervene with my care here, and havent in any way. I hope I have not been imposing too much on you for your opinion. I will let you know what happens because in the next week I intend to be very proactive in getting help to resolve this.
Thanks for everything again, have a great weekend ..
Best,
MaryAnne

18 May 2013 - 4:05am
#17
MaryAnne

Dr. Bland,
I came across this article, not sure if you have seen it but wanted to send it along to you.
http://www.ajronline.org/doi/full/10.2214/AJR.08.1433 -
September 2009, Volume 193, Number 3 Musculoskeletal Imaging
Original Research
MRI Assessment of Recurrent Carpal Tunnel Syndrome After Open Surgical Release of the Median Nerve
Raphaël Campagna1, Eric Pessis1, Antoine Feydy1, Henri Guerini1, Dominique Le Viet2, Patrick Corlobé2 and Jean-Luc Drapé1
I also found an article on the benefit of ultrasonography but wont send it along b/c I am certain you already know them... I needed the MRI in case im told that it is not a test that is done with cts.. thats what i was told...
Thanks again for everything
MaryAnne

18 May 2013 - 11:44am
#18
jeremydpbland

Yes I've got that one thanks. I do my best to read everything published on CTS in the scientific literature, in English at least, but I always have a big pile of stuff waiting to be read. JB

21 May 2013 - 2:46am
#19
MaryAnne

Dear Dr. Bland,
Im very upbeat today about this hand situation... even though my hand is throbbing and burning at this moment... lol..
I saw my neurologist and prim care physician today and explained myself with some journal articles to support my request for an mri /ultrasound or emg. My neurologist was on board with emg and administered it because I have new symptoms on the unlar portion of my hand ......It seemed to be ok ...
.Neuro doc said he could not get any signal from my post surgical hand sensory nerve in part of the palm and 3.5 fingers... ( branch of median nerve? ) I think he used the word signal, he actually said he got nothing. Might this be an expected outcome for someone who had longstanding CTS. He also gave me a test putting a needle in the thenar muscle (muscle? yes ) ... He said it was good, fine and healthy.
He will send report to primary care physician tomorrow. I also saw him today and and he ordered an MRI, because of how much worse I am not than before surgery and im 3 mos post op. Im not sure insurance will authorize, but im pretty hopeful. I think this is the best that can be done at this time.
I will keep you posted. I cant begin to thank you for your guidance and for this forum.
My best to you,
MaryAnne

21 May 2013 - 11:42am
#20
jeremydpbland

At least we got some new NCS/EMG performed. From that description it sounds as though the median sensory potentials might be absent now which would be worse than the original set. I would like to know whether the thumb muscles twitched satisfactorily when the nerve was stimulated at the wrist. The reportedly normal needle exam is quite encouraging. If you can get the numbers as before that would be very interesting though of course the original set of tests were very out of date. JB

22 May 2013 - 1:42am
#21
MaryAnne

Good Morning Dr. Bland,
Well its been a week since I said I was going to be more proactive about resolving this hand issue and I feel like Ive gone a long way in a week, and again I thank you for your insights and information, they are very encouraging.
I should get the emg numbers from the test today ( 5/22) and I will send them to you. Can I email you ? Do you have an email I can use or do you prefer me sending them here ?
I was very happy about the good thenar reaction, my dr. was pleased too. There was no wasting or atrophy before or now... soooo very good news.... As far as the question about whether the thumb muscles twitched satisfactorily when nerve stimulated at the wrist, would that be recorded in the test result numbers? or is that a question I have to ask my dr... Im excited that I have strength in the hand and its good measureable strength. Im hoping that the sensory part of my problem is not too severe...I hope the mri will help to bring that to a conclusion too.
Thanks for giving me a hand with this.. : ) ..
Hope you are having a peaceful day
MaryAnne

22 May 2013 - 6:06am
#22
jeremydpbland

The single most important measurement for comparison with the previous studies is the median distal motor latency, the time taken for a stimulus at the wrist to make the thumb muscles twitch. It was 4.5 msec in your previous tests which is close to the upper limit of normal for most laboratories (larger numbers are worse for this measurement). It should be in your EMG report. There is an email address for me in the contact information page on the site which can be used for more confidential material but on the whole I prefer to keep things in the forum which acts as its own filing system. Although the NCS results are important in this situation the bottom line here is really what your symptoms feel like - do you think it's starting to improve at all subjectively? JB

22 May 2013 - 3:08pm
#23
MaryAnne

Good Morning Dr. Bland,
The only improvement I have seen or felt is swelling, it has gone down. When it was more swollen, I could press on my hand next to the scar on the right side ( toward pinky ) and I could put the first 3 fingers entirely to sleep more than they are. That is the only thing that has changed I cant do that anymore ( glad i cant do it .. ) .
As for sensitivity, no change at all, numbness in palm, the same as when I had surgery, no change. First three fingers are all hypersensitive, the same as when surgery was done from tip down. The thumb though, I dont remember if it was the entire thumb that was sensitive, b/c now I do feel down the inner side( next to the pointer side down into the web) that it is ok except the entire tip and pad,.. the other side of thumb is horrible down to base of thumb I would say then across to middle of hand ( palm) .. I have kept a small pictorial diary of my hand since surgery ( marking on a hand picture where it is sensitive, numb, etc...) to monitor the areas that change and I have noted none .... except that inner side of the thumb I seem to have not made any indication on that whether it was as bad as the rest of the thumb or not... and what I mentioned in the first paragraph about swelling , Im hoping to have the results of emg today and if i do i will send them along to the forum.
Have a great day, thanks for your interest in my case.
MaryAnne

22 May 2013 - 5:47pm
#24
jeremydpbland

It certainly sounds as though one would have to classify this as an unsatisfactory result of surgery at this point. I'll look at the NCS results of course. JB