Poor outcome of carpal tunnel surgery

jeremydpbland
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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

MaryAnne
User offline. Last seen 1 year 18 weeks ago. Offline

Good Morning Dr. Bland,
Its been a while b/c I didnt have much to say .. I wanted to keep you up on what has been going on. Today I am finally getting that MRI....It took an act of Congress but FINALLY .. I got it .lol.... .It will be of wrist and arm i think .( they wouldnt approve the hand , for whatever reason .. )

.I will also get the EMG results this week .I expected them right after I took it but was told it takes 2 weeks.. so that would be this week.. hopefully I will have something to send along soon.... When neuro doc did EMG he said he didnt "get anything " from median nerve. I think he meant from the wrist, and he dug those prongs deep into my wrist, elbow crease area and neck.. not sure what that meant, sounded like there was no nerve conduction through fingers 1, 2, 3 ??? That didnt sound very good, but .he said radial nerve was good , and Thenar muscle was good.. so that is good news ... More good news is that I am getting some feeling back in the web of my thumb... across to the center of my palm.. which is great... Otherwise all other fingers and some palm area numbness are the same as day after surgery... I will get on with results as soon as I get them... I feel like this course of action will enable us to reach some kind of conclusion and find out definitively what is going on in my hand. At least that is my hope ...

.Have a good Thursday, keep up the great work and after all this typing , dont forget to stretch those hands and make sure those tendons glide .. otherwise you know what happens.. ( lol.. )
Best to you, MaryAnne

jeremydpbland
User offline. Last seen 2 hours 27 min ago. Offline

Do they give you your MRI scans on CD/DVD? The median innervated area of the palm is supplied by a branch of the nerve which passes outside the carpal tunnel and is not usually involved in CTS as such so that should in theory have been OK all along. The comment on the NCS does not sound promising but let's see what the actual results show. JB

MaryAnne
User offline. Last seen 1 year 18 weeks ago. Offline

Hi Dr. Bland,
Rainy morning here .... but the upside is its Friday !! Yes, they do give scans on CD. Specifically the area in my palm that is numb is the median nerve digital branch area ( right under pointer finger, it was numb to the thumb, but recently the web area is getting feeling back) . I asked him about this because I read median nerve sensory distribution is both from the forearm and the carpal tunnel. The area that is numb in my hand, according to my reading, is innervated from the forearm. I asked the question b/c if it does not run through the carpal tunnel why is it affected especially since I had no complaints of numbness or pain prior to surgery and this feeling was the day after surgery, I had pointed it out to him that next day.

His response was that it also goes through the carpal tunnel, so I accept that as my answer. What you are saying in your response is what I thought ( the median innervated area of palm is supplied by a branch which passes outside the carpal tunnel) . He is the doc and I am the patient, I asked the question that was his answer I have no " leg to stand on " at the moment since he is the expert. Im not sure what to say or do about this. However, I am confident that the MRI and the EMG will give me a definitive direction to take and I know I am moving in the right direction to get help.

I appreciate your guidance our conversation of a few weeks ago was really the impetus for me to be more proactive and try to alleviate this pain. It does hurt but its more inconvenience now than pain. For example, I cant keep it resting on a surface for too long it gets hot , like friction would make your hand hot, so that is annoying at night, I have to keep it face up when it rests on blanket too long it wakes me... but, with therapy I am using it alot more, and even though it is painful I push through it so the hand stays strong. It cant last forever thats the way I am looking at it. I am hopeful. When I get the emg results I will send them along. I should have had them already. The MRI report will probably come on Tuesday.

Have a great weekend .... I would be at a huge loss without your expertise, thank you so much. However this turns out at least I know I did all that I could to get myself the help I need, and again that would not have happened had it not been for your guidance.

Best of everything,
MaryAnne

jeremydpbland
User offline. Last seen 2 hours 27 min ago. Offline

There is actually quite a lot of variation from person to person in the anatomy of the forearm and wrist so you cannot guarantee that your arm will be exactly like an anatomy textbook but in most people the median palmar branch does pass outside the carpal tunnel and the sensory loss of CTS does not affect the palm of the hand. You can identify the median palmar branch on ultrasound imaging as it breaks away from the median nerve but I'm not sure if it can be reliably spotted on MRI which does not have such high resolution. No doubt we will be in touch again when your NCS results come through. JB

MaryAnne
User offline. Last seen 1 year 18 weeks ago. Offline

Hi Dr. Bland,
I know it is well after hours there but I wanted to send this along. I finally got the results of my tests after probably about 2 months... wow... I dont know what to make of them yet because I didnt do any research or reading.. My pcp said he is not a hand specialist but the mri shows that there was cts surgery and swelling and it is a most likely part of the healing process and the area of the swelling is where they did the work... he referred me back to the surgeon who did the surgery for more clarification.

This is what the emg said: ( I tried to make it more readable but cant line up the top line with numbers below it hope you can discern)

Motor Nerve
---------------------P Lat D Lat Dist Disp/ amp NCV
Right Median 8.4 4.2 22 N / N 52
Left Median 8.4 4.9 do do / do 49
Right Ulnar 8.4 2.2 32 do / do 52
Left Ulnar 8.6 2.3 do do / do 49
Right Radial 2.0
Left Radial 1.9

F Response
Right Median 26.5 Left median 26 Right Unlar 26.5 Left unlar 27.0

-----------------------distance cm amp/ microvolts
Sensory Nerve
Right Median 4.8 11 250
Left Median NR 11 do
Right Ulnar 2.7 10 250
Left Unlar 2.5 10 do

Technique Antidrdmic

Also a section that says EMG - muscle- Upper Limb top part of the report has the same indications with Do's down the page but at the botton , Abductor Pollicis Brevis - insertion 1 Fibs L- +1 Facic. 0 Pos L +1

EMG and NCS indicate evidence of continually, distal median neuropathy on the left , a minor CTS on the right. Needle EMG did show some reduction in the number of motor units but no myopathic potentials.

I have the MRI on disc, but this is what the report said:

MRI of the wrist performed consisting of the following pulse sequences:
Axial T1 and PD fat suppressed, Coronal T1 and PD fat suppressed Sagital PD fat suppressed oronal gradient echo

The joint spaces and articular cartilage are preserved. There is a Type II Lunate. there is a neutral unlnar variance. The bone marrow signal is normal. The extensor and flexor tendons are normal in course, caliber and morphology. There is suggestion of prior ctr. The median nerve appears mildly increased in caliber and signal. Mild increased signal present within Thenar musculature. The visualized unlar nerve and contents of Guyons canal are unremarkable. Then it says Impression: Median nerve is increased in caliber and signal likely related to median neuritis or post surgical change. Nonspecific increased signal within the thenar musculature which may be post surgical in etiology or related to early denervation.

My questions are can you tell by the results of the emg if there is or was any demyelination ( or is it demyelization dont know which word to use ) and can we tell how long it has been happening..that is , is it early , like lately post surg.. or old. And, does NR in the median senory nerve measurement mean , no response, and if that means no response does it mean its severely damaged ? At this stage of recovery should I have had some kind of response in that measurement if there is going to be a recovery ? Im sorry to shoot all these questions out at you .. Please take your time in answering..I realize this whole thing has been a process for me and I am learning at ever stage and am fortunate to have your expertise and do not want to be a burden to you with the case load you have.

In the MRI they refer to early denervation. When they say early do they mean pre-surgical? Pre surg, i had some tingling in my fingers, and they did fall asleep at night , but after a shake woke up..Is this the denervation they are referring to ? Now my fingers never wake up since 2/28. They are not as asleep as when your hand is fully asleep they are almost waking up in that tingling burning stage .. the painful stage , they are stuck there...

I am cynical that I had any demyelination before surgery b/c my symptoms were considerably less than now... and I have these from the day of surgery and its 100x worse than it was.( not mathmatically correct lol... ) just want to get it across how much worse it is ...

I dont know what to make of all this. I have this gut feeling that I usually need to follow but often do not and then turns out I should have. So, I need to follow through with this hand problem as I have had very little if any relief with the sensory issues. I think I am just getting used to the pain and discomfort and pushing past it. It hurts all day with touching different things but I cant stop my life. It does wake me up at night , fingers throbbing dull pain, high sensitivity. I cant imagine staying like this and if something can be done to help the condition now I want to do it and not wait. If I have to wait because this is the healing process I will do that too. I just dont want to wait and have more damage occur, or have less of a chance of making this a better outcome.

I know this is alot to digest. Im sorry to send it all at once. Please take all the time you need to read it. There is no hurry, I am grateful you are there to give your opinion and expertise. I dont expect that I can make this better in short order but I am going to continue to advocate for myself until I am certain that I am getting the best care possible for my hand.

Enjoy your weekend....its overcast here but tomorrow will be bright and sunny , i hope you get to enjoy the same there.
With much gratitude,
MaryAnne

jeremydpbland
User offline. Last seen 2 hours 27 min ago. Offline

It is late here so I'm only going to post a quick comment on those nerve conduction studies. Your left hand was grade 2 before surgery and is grade 4 now, so physiologically this is worse. The main uncertainty is that we do not know how bad it was immediately before surgery because the grade 2 test result was a long time before the operation and it may have got worse in the interim before it was operated. I will cover the rest in a subsequent message but the radiologist reporting the MRI should be asked it they think the transverse carpal ligament has been fully divided or not - they have not commented on this in that report - the phrase 'There is suggestion of previous CTR' - sounds as though they are a bit uncertain. JB

MaryAnne
User offline. Last seen 1 year 18 weeks ago. Offline

Dr. Bland,
Thank you, please don't take up any more of your weekend, or down time with this. I dont know how I missed that wording. I just got the results and didnt have a chance myself to do any research. I quick sent them off to you.
I dont know what to say but thank you ...
MaryAnne

jeremydpbland
User offline. Last seen 2 hours 27 min ago. Offline

It is cases like this that this bit of the website is for, so I am going to tackle this at some length. Failed carpal tunnel surgery is relatively uncommon and you are doing a very good job of documenting yours with actual results so it all adds to my experience.

Firstly the nerve conduction studies. Two pathological processes occur in the median nerve in carpal tunnel syndrome - demyelination and axonal loss. Demyelination - the loss of the insulating layer around nerve cells which improves the transmission of signals along them - results in slowing of nerve conduction. We make separate measures of conduction in motor and sensory nerve fibres and sensory fibres tend to be affected before motor ones in CTS. In your original nerve conduction studies the sensory conduction velocity of the median nerve at the carpal tunnel was 24 metres/second. Normal values for this measurement vary a bit from laboratory to laboratory but 45-50 m/sec is fairly representative of normal nerves in most labs and 24 is unquestionably slow. Thus in the original tests you had evidence of demyelination.

The motor studies are a little more complex and the usual measurement of interest in CTS is the time taken for a signal to get from the wrist to the thumb muscle and produce a twitch, known as the median distal motor latency or DML. Again the normal range for this varies from one lab to the next but your original value of 4.5 milliseconds would have been just about within the normal range in my lab.

Axonal loss is the destruction of the nerve fibres themselves. This is reflected in the size of the measured signals in nerve conduction studies and in the findings on needle EMG. Very small or absent nerve conduction signals and things called fibrillations and positive sharp waves on needle EMG are all signs of axonal loss. In your latest studies the sensory nerve action potential which was originally present is now absent and the EMG shows fibs +1 and Pos +1 - ie small numbers of fibrillations and positive sharp waves so you now have evidence of axonal loss as well which would be considered worse CTS than at the time of the original studies.

It is no longer possible to measure the sensory nerve conduction velocity because there is no signal at the recording electrode to work with (NR = not recordable) but we do have the DML motor measurement in both studies and it is now taking 4.9 msec for the signal to make your thumb twitch instead of 4.5 msec. This conduction is therefore slower (ie worse and now definitely outside the normal range for every lab I know of) and indicates demyelination of these motor fibres.

As I said in my short post last night, if your lab has similar normal values to mine then your original measurments can be expressed as grade 2 on my severity scale and the latest ones as grade 4. The grading would be the same using the Italian severity scale.

Now the MRI. There is a lot of descriptive stuff in there about the way the study was done and the other structures in the wrist. We are really interested in two structures however, the median nerve and the transverse carpal ligament. They describe the median nerve as increased in caliber and signal - ie larger and brighter on the MRI image than it should be. These are just the MRI changes of carpal tunnel syndrome and it would have looked like this before surgery. Imaging studies of operated patients suggest that these structural changes in the nerve tend to reduce after surgery but do not necessarily return to normal (much the same happens with the NCS). Simply seeing an enlarged nerve after surgery therefore does not tell you a great deal unless you can compare with a pre-operative image. You can quantify this change by measuring the cross sectional area of the nerve but they have not given us any numbers and we do not have the pre-operative image so the comments on the nerve are not a lot of help. The comment in the report about early denervation is a reference to increased signal in the thenar musculature and is the imaging equivalent of the fibrillations and positive sharp waves in the EMG - evidence of some axonal loss, early in this case meaning 'mild/recent' not pre-surgical.

The transverse carpal ligament or flexor retinaculum is of interest because the surgeon is supposed to have cut it... and the commonest single reason for failed carpal tunnel surgery in studies of the issue is failure of the surgeon to successfully divide all of the ligament - accounting for 50% of failures in a large German series. This is doubly important because if there is an undivided sliver of ligament still compressing the median nerve this can be corrected by further surgery. My personal suspicion is also that a thin strand of ligament compressing the nerve exerts a 'cheesewire' effect and is mechanically worse than having a broad band of ligament spreading the pressure over a larger area of nerve but that is just my guess. The ligament can be seen fairly well on imaging and the person reporting the images should be trying to see whether it has been divided fully or not. I find this easier myself on ultrasound but a good MRI radiologist should be much better than I am with MRI images.

So... your latest round of tests confirm absolutely your own impression that the situation is worse than it used to be in 2011. At the time of the original NCS you had some demyelination of the median nerve. Now you have more demyelination and some axonal loss. None of us can tell for sure however how much it had deteriorated before surgery. The only guidance we have on that is the surgeon's observations at the time of the operation and as you know I consider these to be unreliable.

By far the most important decision to be made is whether to re-operate, and the reason for more surgery would usually be to divide a residual band of transverse carpal ligament. If there is no residual ligament left to divide then you really do not want to re-operate and cause more scarring and manipulative trauma to the nerve - so ideally one needs to know if the ligament has been fully divided or not before you decide to operate and take a look. This can be quite hard to figure out.

The nerve conduction studies help somewhat. In my own studies almost all patients who we have clearly shown to have an undivided band have presented with symptoms which are unchanged or worse immediately after surgery and nerve conduction studies which are the same or worse than their pre-operative ones. Conversely hardly any patients whose NCS show improvement after surgery have undivided ligaments. My current policy is to recommend surgical re-exploration for all patients who say they are worse after surgery and whose NCS have not improved but to apply this policy you do need up to date pre-operative NCS to compare with. Without these, the second best policy is to do two sets of post-operative NCS 2-3 months apart and look for the direction of change - if they are getting worse you re-operate and if they are improving you leave well alone. I think this is very much second best however and exposes you to the theoretical risk that prolonged compressive injury to the median nerve might result in permanent structural change in the nerve which cannot then be reversed by further surgery. We know that grade 5 cases have noticeably poorer surgical outcomes than grade 4 so I would not want this to deteriorate further.

Imaging can certainly help with this decision making but the person looking at the images has to understand what they are being asked  - is there an undivided band of ligament? - and try to assess that issue in particular.

I hope that explains the way I think about these things as clearly as possible and shows how I apply them to a specific case. There are, I am afraid, no magic bullets in this scenario and a few patients will be left with permanent hand problems whatever is done but I think it is possible to make rational decisions about how best to play the odds. JB

MaryAnne
User offline. Last seen 1 year 18 weeks ago. Offline

Dear Dr. Bland,
I have read your post slooowly and out loud and completely and thoroughly understand what is going on at this point. I even understand how the EMG is read and its significance. You could not have made it simpler, you have answered all of my questions including questions I was going to ask .. lol....

Most of what I have learned I learned from your site , it is by FAR the best information out there ANYWHERE about CTS. I know poor outcomes in cts are usually a result of an incomplete release and I believe that is the prevailing thought across the board... as I did look at some other reliable sources ( none as detailed as yours ) and confirm this.

So, I asked the surgeon a few weeks after my surgery if he was sure he completely removed the ligament, and he assured yes, so of course I believe he did. That doesnt mean that he did entirely , it is what he believes. You have mentiond that a sliver or strand could have been left, and in that case he could have missed it. However, he contends that my [post surgical, ongoing symptoms ( albeit far worse than before ) are the result of longstanding cts and my pain is the nerves" scrambling around" and trying to reconnect, those are his actual words.He said nerve will grow 1 mm a week and It could take up to a year to resolve. I think he was quite certain that he didnt leave anything behind , otherwise I would imagine he would have ordered an MRI a few months back when I asked him to so to confirm that no tissue was left behind, that seems to me to have been the prudent thing to do. When I asked him, his response was no, it would not show anything, and MRI is not used to dx cts. Thats when I began to ask other docs to order test and I was put off for a few reasons, and denied by insurance ... but was finally able to do so.

Also, I can see how the idea of a 'cheesewire' effect is mechanically worse than having the band of ligament put pressure over a larger area of nerve and it sounds strangely familiar. ( but who knows at this point). If that has happend to me, the great thing is it can be corrected to some degree...

The MRI report says " evidence of prior carpal tunnel release" and there is a " suspicion of prior carpal tunnel release". It seems like dr's reporting language is somewhat incongruent with literal translations of words, because as a retired cop I would think that " evidence means there is some form of proof something happened, and suspicion means it may have happened or there is a belief it happened, neither confirm that something has occurred. One suggests it could have happened, the other offers proof, so why not say " there is no evidence of the flexor retinaculum - transverse carpal tunnel ligament confirming carpal tunnel release surgery. I mean , wouldnt that be confirmation that something has indeed occurred and not leave it to the reader to decide? As you know, I am prone to superfluous questions. lol.. and you are kind enough to give me thoughtful answers every time , and it is truly appreciated.... anyway.....

At this juncture I think there are two main concerns, 1. have the radiologist confirm that the ligament has been completely divided and that there are no strands or even slivers of ligament left. 2. the possiblity of further axonal loss ( which will lead to permanent damage) I do not want to " graduate " to the next class of this syndrome and possibly put myself in a position where it cannot be corrected. However , if I am one of those few patients that is left with permanent damage it will not be for lack of me trying to do all that is possible to avoid this outcome. I have to add I would not be half as capable of doing so without your help in raising my awareness and giving me understanding of all the nuances of carpal tunnel syndrome, dx, sx, and treatment options, in my case surgery.

I have alot to consider, but first have to get clarification of MRI, after that I will assess what is the best course of action to take. You had mentioned in an earlier post that not many radiologists are qualified to see this , that there are a few in the world, was that comment pertaining to looking for ligament strands or slivers in an mri, if so I think I have to go further than Long Island to find someone capable of that.

Not surprisingly, I have a few questions, for the sake of your vision, I hope that I have learned to ask more relevant questions at this point ..

1) Would surgery be a consideration if there is a sliver, or strand remaining? I would think if the ligament was there the radiologist would have mentioned it.

2) Is it possible for me to have had axonal loss( which would be indicative of a higher grade cts) before surgery and not have had significant symptoms, or known about it, as I can readily feel such a distinct difference post surg, than from before surgery. I understand that I did not have a ncs just prior to surgery so I do not have a measure right before, but if I were that severe, wouldnt I have had more severe symptoms , even thenar atrophy , ...This is the part I just cant understand...no matter how I try to wrap my head around his insistence that I was so bad, I am convinced that I was not, especially in comparison to what is going on now.

( btw do you do repeat ncs studies before surgery if there has been a significant amount of time since the last study, lets say 1.5 years...) I ask this because I asked the surgeon why he didnt do one prior to surgery and he said that 1.5 years is close enough to use as a pre surg indicator ? .. not sure if he used the words pre surgical indictor, but thats what was meant..(.I remember you saying that one would not do surgery with year old blood results ) I did do some research and here in the US, it doesnt seem to be protocol, that is to do repeat ncs right before ct surgery. I dont know why though... wouldnt they want to have a baseline to see how the patient progresses or doesnt progress? ( hmm as I think it through, maybe I just gave myself the answer ) still interested in how you do it there. Would a 1.5 year old emg be used to determine if ct surgery is appropriate ?

3) If axonal loss is permanent then what is lost as of this time is permanent? Can nerves regain their myelin sheath ? Once there is demylenation is axonal loss imminent ? Is there any thing I can do to stop this from progressing, i.e. using it more , exercise, not using it ? Will the axonal damage stay the same and not progress or is that as bad as it gets.. once its damaged its done for.

More than I can ever express, I appreciate your time , energy and effort to help me understand what is happening with my hand. I dont know what I would have done without your clarification and expertise, because all the reading in the world cannot make up for someone who is educated in the field and is well qualified to answer. I have spent countless hours reading and trying to educate myself, some of it was fruitful but none of it would have made a bit of sense without your guidance, I am at a loss for words, and thats not usual for me. ... thank you is not enough. Ill keep you apprised of my progress. In all cases I will progress to either a better physical state or a better understanding of what is going on.
Have a good weekend....looks like you may have some sunshine in your part of the world tomorrow, enjoy it....

With much gratitude,
MaryAnne

jeremydpbland
User offline. Last seen 2 hours 27 min ago. Offline

I'll try to answer those specific questions - after a large dinner I'm afraid so sorry about any typos.

1) Yes, if there is a residual band of undivided ligament it is well worth re-operating to try and cut it. The difficulty with imaging - both MRI and ultrasound is finding someone to look at the images who knows what to look for. Most of these MRI scans will be looked at by radiologists whose daily work consists mostly of images of ligament, joint, bone and tendon problems and few of them will have seen failed carpal tunnel surgery even once.

2) You could have had axonal loss before surgery but in my experience the subjective severity of symptoms in the individual patient is a fairly reliable guide to the direction of change in the neurophysiological grade. ie if I was seeing you just before surgery and you told me that, overall, the symptoms felt about the same as in 2011 I would expect to find a grade 2 CTS, if you told me it felt worse I would expect to find a higher grade and if you told me it was not as bad I would expect to find a lower grade. Occasionally these predictions turn out to be wrong but not often.

One and half years is not close enough to use as a surgical indicator. I have seen it go from asymptomatic (normal) to grade 5 in 3 months and I just have to disagree with your surgeon there. You will have gathered by now that disagreements between doctors are not uncommon - sorry! There is no established protocol specifying a recommended interval between NCS and surgery - we are actually still arguing about whether NCS are required before surgery at all, never mind when they should be done. My own rule of thumb is that I like there to be no more than a 6 month gap between the most recent NCS and surgery but even that is a matter of guesswork and compromise and is not as evidence based as I would like it to be.

3) Both axonal loss and demyelination can reverse - the body is quite good at repair given a chance. Axonal loss recovers by both regrowth of damaged axons from the point of damage outwards (this is the process being referred to by your surgeon when he says x mm per week) and also by surviving axons taking over the work of dead ones (Axon incidentally is the technical term for the long thin extension of a nerve cell which carries a signal - I see I am bandying the word about casually here on the assumption that you have now picked up most of the anatomical terminology). There is not much you can do to influence the process other than avoiding things that might damage the nerves. JB

MaryAnne
User offline. Last seen 1 year 18 weeks ago. Offline

Good Morning Dr. Bland,

Well at least we know for sure you eat, but do you ever NOT WORK ? .. lol... Thanks for your response. Ok , schools out for now ... You have given me so much information I assure you I will put it ALL to good use. Disagreement between docs( and in science ) is good because it makes way for study, advancement and research...Its great actually !!

These last answers are a comfort especially about axonal loss and demyelination, deep exhale. I was expecting dire news but instead got a pleasant surprise. I am getting lazy, Dr. B, I could have looked that up now that I look at the question but I suppose I was on a roll. I wont let that happen again.... Have a happy Sunday I usually say , and productive one, but that is a given with you. ( btw, no typos that I caught) ......

MaryAnne

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