Flymo - severe CTS

I've moved this posting to a topic of it's own as it was originally appended to another conversation, hopefully you will still find it here. I've also removed a duplicate.

There's quite a lot of history in there overall, seemingly going back at least 13 years, and I don't think it's possible to be at all sure what is going on in your hands from the story. I think you can say that there are several atypical features for carpal tunnel syndrome and I note that you came out with a pretty low diagnostic score on the questionaire which tends to confirm that impression. Localised pain at the thumb base, your most prominent current symptom?, is more often due to local problems in the joint there than to CTS.

You clearly do need some nerve conduction studies doing, and it's interesting that someone is working on a Sunday to do them. As you obviously have a rather odd presentation in terms of symptoms you should try to ensure that they are done by someone who is fully trained in clinical neurophysiology - ask about their qualifications and be wary of anyone using a small handheld machine - these devices are unlikely to be able to test adequately for the full range of other nerve disorders which can be confused with CTS. Ask for a copy of the results. Anyone who is actually qualified to do these tests will be happy to do these things. The problem we are having at present, at least in the UK, is that virtually anyone can set themselves up to do these tests, whether they have been trained or not (and sadly some of them think that a half-day with the sales rep of the machine's manufacturer telling them what buttons to press constitutes training). Even if you do get high quality nerve conduction studies performed and they show evidence of CTS it is also important to remember that the presence of a measurable physiological impairment of your median nerve at the wrist does not prove that that is what is causing the symptoms.

If I am interpreting your post correctly you were worse for at least a few days after injection in 2005 - is that right? and if it is how were the hand symptoms a few weeks later - better or worse than before injection?

Given the complexity of the story and the odd features I would think your best course of action would be to consult a specialist and one could go for a neurologist, a rheumatologist or a hand surgeon. How you go about this depends very much on where you are and what local expertise is available. Any of these people will be able to help decide how to proceed in terms of investigation and treatment and it's probably more important to find someone who is interested in hand/nerve problems than to worry about exactly which speciality. Good luck, and I would be interested to know what turns up on the nerve conduction studies. JB

Thank you so much for your reply, it feels you are the first person in all these years that also finds my history, let's say not typical of CTS. After the injections in 2005 I was in horrendous pain, it started about six to eight hours after, and lasted for around two weeks before they felt any improvement. Since then my hands have been so much worse. I wish so much I hadn't have had it done, too late now. After the 'barrocca' incident, I was searching the net for answers, possible alternatives to surgery. I read about laser theophy, searched for the best hand surgeons in and around London. I found a mr Giles bantick, and somehow got his direct line, I spoke to him, he told me laser doesn't work. I was so upset. I did manage to ask him if I was referred to him, if I didn't want surgery, could I have access to the chealsea/Wellington hand dapartment, one of he places he works. I had read they make you customised (made to measures literally) straps. With the hope they may investigate further, maybe show me coping exercises. He said I had to get my dr to refer through the 'west Middlesex university hospital', but stated I could use the chealsea/Wellington facilities. O.k so that was four years ago! Two years I waited for my first app. Only to be seen by someone other that him. Lovely dr who was sorry he could help me and made sure I would be able to re-book direct with mr bantick, who only works at this hospital on Thursdays. So another year on till my next app. Which was last week, he is busy and sends his registrar. Nice guy but not the reason I'm travelling an hours drive to get there! Not sure I will ever get to meet the mr bantick. He sent me to west Middlesex for hand theosophist, not their fault but customised straps to them were small medium or large! Nerve study is at the same hospital, I been told not use body cream, wear loose clothing and remove jewellry, so should all be legit. Yes I thought it was unusual for an appointment on a Sunday too! Thank you also for your advise regarding getting a copy of the results, I will certainly ask. I also was astounded by my test results on here, this all leads to the fact my instinct tells me the root of all this started else where. Could diet be a link? Didn't I read on here someone had cts, then found out he was allergic to wheat, and other things, when he changed his diet the cts stopped? Also a girl with alopicia was put on a certain diet, and her cts went to. So much more research needs to be done. I will keep you updated, thank you once again.

I can't find out a lot about nerve conduction studies at the West Middlesex online so it will be interesting to see who does them. It will either be a consultant/trained neurophysiological scientist whose base is elsewhere, or alternatively it may turn out to be someone from another speciality entirely or a therapist. Mr Bantick seems to be easily found online and is a plastic/hand surgeon. Specialists in hand work mostly come from either orthopaedic or plastic surgery backgrounds and he seems to have taken a particular interest in hands, even having gone to Australia for postgraduate experience in the field so he's certainly a reputable opinion. The problem of course is that people who are good at things tend to get very busy and getting to see them can be a challenge.

Those reported waits for NHS appointments seem to be very long as most units are still working to a target of about 13 weeks from GP referral to treatment starting. I'm afraid not seeing the consultant in clinic is a recurring 'feature' of British healthcare. We have fewer doctors per head of population than some other countries, 2.7 per 1000 population in 2010 compared to 3.4 in France, 3.5 in Italy and 3.7 in Germany, so we are quite thinly spread to start off with. You then have to consider that the trainees in a speciality have to learn somewhere and one way they do that is by seeing patients in out-patients, where a lot of specialist work takes place. Finally we do all take holidays and work cannot usually stop when we are not there. All of these things mean that it is probably unavoidable that on some occasions patients may not be able to see 'their' consultant but on the whole I do think we should try to make it possible for patients who want to have a discussion with the person who is ultimately responsible for their care to do so.

If what you have is not primarily CTS then the list of other possibilites is quite long and when it isn't an obvious diagnosis it's not the sort of problem you can approach usefully online without meeting the patient I think. Anecdotal stories from other patients need to be treated with caution. Remember that many episodes of symptoms, of all kinds, turn out to be self limiting anyway - ie the symptoms go away even without any treatment. We human beings however always like to understand our experiences in terms of cause and effect and we are very good pattern recognition engines so most people who have an episode of symptoms which get better will attribute the improvement to something - be it a change of diet, physiotherapy, anti-inflammatory drugs, or thought field therapy. You can rarely actually tell from a single example what really made the difference.JB

Hi, thank you once again for your reply, it so kind of you to answer everyone's questions. It means a lot, that you are genuinely answering questions. Had the nerve conduction test on Sunday, just gone. We were the only people in the outpatient dept that day! I did ask for my result, but she said they would be ready that evening, and I would have to discuss the results with mr Bantick. I received an appointment on Monday to see Mr Bantick on the 1 May, so I'm hoping with it being a while til the app. I might actually get to see him, thank you again, I'll come back with the results when I receive them, and up-date you on my upcoming appointment .

That sounds very like nerve conduction studies done by someone other than a doctor. Quite a lot are performed by neurophysiological scientists. That is fine as long as they have the appropriate training but they often do not wish to take responsibility for saying what the results mean so it's also not unusual for those measurements to be looked over by someone like me later and a report then issued. They should still be willing to send you a copy of the report and you shouldn't have to wait until May for that - at least for a fairly minor condition like suspected CTS. Hopefully you will get to see the man himself this time. JB

Hi
Well it's been a long time coming, I finally have my nerve test results. I did have to wait until my appointment, and I no I still did not get to see the consultant I had been referred to. From Enfield to Isleworth 3hr round trip to be seen by a different person each time I'm afraid to say. You said you would be interested to see my results, I will email my results to you, I hope that's o.k? I appreciate you looking at them. The consultant reluctantly gave me a photo copy of the results, there was no discussion about them. I was told I need the op, asked which hand was worse (obviously did not take in the results, if he looked at all) even a novice like me could see from the results (which totally mean nothing to a non-medical person like myself) that the left hand results are very conclusive, as you will see. Sorry if I'm rattling on, I'm so disappointed after 4 years of trying to get to this stage regarding the referral to this surgeon, I'm no closer to a solution, iv gained nothing with respect to relieving my problem. Iv basically been on a fools errand for four years. Why would I travel so far to see random people? I could have done the same in my local hospital, actually I already did many years ago, been on their waiting list since 2004! Feel really let down by the situation. After all it was Mr Bantic himself who said I could be referred to him. Four years to get the appointment and three consultations later still no show. I did agree to the op on the day (Thursday 1st May) having had a couple of days to reflect, Iv now decided I will contact them Tuesday morning to cancel it. It's obvious I will not be operated on by Mr Bantic, it could be anyone, and although I'm sure they are wonderful surgeons, I'm not prepared to have it done by a random person I know nothing about. I might sound over the top, wow it actually feel over the top! After all this is my hands we're talking about, suffered since the young age of 27yrs, pain I know, not going to swap it for pain I don't know. Wanted to be able to put my trust in a surgeon who specialised in hands. As my symptoms are not typical of cts, I suppose I was thinking he would work out the root of the cts, looking for miracles that simply don't exist. I'd really like to get a copy of my nerve test results that where taken in 2005, so I can compare the new and old. Could I get this from my doctor I wonder? Sorry for what has probably come across as a load of blar. I defiantly have more constructive things to add on the subject of cts that I will add at another time ....when I'm out of this disappointed Rampling mode!

Those NCS show grade 1 right and grade 4 left CTS so there's not a lot of doubt about the physiological abnormality in the left hand at least and those tests were done by a fully qualified person. I can only apologise for the NHS's performance in dealing with what should be a fairly simple problem overall - you deserve 15 minutes to discuss the pros and cons of surgery with someone who understands CTS. I'm happy to continue discussing it on here for as long as you like but ultimately you are in the hands of your local medical staff.

Your 2005 results should be on file somewhere - 9 years ago is not long and I have records of some things done in my department going back to the 1960s - though I think I can only get the actual recordings of nerve conduction studies back to about 1996. JB

Hi JB
Well I was first booked in for op in June, I cancelled. I was rebooked for the 1st September, had a call in August to say they realised I was booked with another person and not mr bantic, so they have booked me in for the 15th this Tuesday. Still have not even met this guy, think it would help if I'd met him first. My hands have been improving they are nothing like they was when I first got in touch, I have full mobility I can do almost anything with them, dull ache in the wrist and base of thumb that doesn't seem to go really, occasional going dead tingling, bit of a shake gets them back. Could it be getting better? 13 yrs and a totally compressed nerve? Could do with another nerve test, (for peace of mind maybe) do you know the worse case scenario if I don't have it done? If my hands are better than they have been for years am I crazy to risk the op? If I don't have it done how bad in your personal opinion could it get? I'm still trying to talk myself into it, my op in a couple of days so I'm really running of time. I'm at a stage where I'm nearly crying (and sometimes actually crying) at the thought of it. This is not a good way to feel with it being so close. In an ideal world I would not have it done right now, but I'd like to be able to have it in the future if need be. ...........I'm irrationally scared to bits, my gut is screaming at me, not to do this. My head is rationally telling me iv come this far, getting it done by a surgeon of choice, I will never get this opportunity again I'd be mad not to go ahead. There's probably not a lot you can say to answer this post, (apart from the worse case scenario you have come across) sorry for my outburst, I am in personal turmoil.

You are quite right that no-one else can make this decision for you. However I can say that, in my experience, if CTS feels better to the patient then it is usually better on NCS too so if your tests were repeated now they might well be better than the grade 4 which was recorded earlier. CTS can improve, stay the same, or deteriorate at any time and often for mysterious reasons. What you really need is a chance to talk it through with your surgeon. JB

Thank you, yes your spot on. That's what I've always needed. Day of surgery seems a little late, on his website he shows the c-trac and a certain strap, this is all I wanted, to try the c-trac and the straps shown. Here I am am about to have surgery, because all the people iv seen instead of him have no idea what I'm talking about......I will let you know how I get on, thank you for your reply JB. Your doing such a fantastic thing with site, I truly mean that.

I'm still dubious about the c-trac (and there is now a much more aggressive 'ligament stretching' device too). There is no satisfactory evidence that it is any more effective than a simple splint. It needs some decent trials doing. JB

I've taken on board your view of the c-trac. I'm so trying to prepare myself for the op. Just keep thinking, if I don't have it done, how bad can it get? Don't want to end up with no use, I don't want to have the op with a view of a negative view of outcome, because I know that won't help. I'm really struggling to be positive, anyone reading this who has had a good experience please let me know and reply below! I'm desperate for positive feedback! JB how bad have you seen someone end-up? (Without surgery) and how wrong can surgery go? Iv read about a lady who since surgery can't put her thumb to her little finger?( I can overlap mine with ease) also an electrician who's life was practically ruined by a deep seated burning pain he was left with after surgery.

You have probably realised that this forum tends to attract people with problems after surgery and there are plenty of depressing sotries on here but it is important to remember that the vast majority of patients do get very good relief of symptoms from the operation. The interesting thing to ask is how much do you have to gain from treatment - ie how much of a nuisance are the current symptoms. If it's not a problem then my inclination is more towards conservative treatment or no treatment rather than surgery but there so deem to be surgeons who think that surgery for CTS is more or less mandatory for anyone with symptoms so there is room for quite a wide range of opinion. JB

Hi, I had a rather atypical case of carpal tunnel. Had dysthesias, neuropathic pain, and tingling instead of the classic numbness/tingling. It was a nightmare. They had a hard time diagnosing me, but ultimately, CTS was what I had and confirmed by ultrasound. After trying various conservative treatments; bracing, injections, PT, acupuncture, chiropractor, meds, various herbs and supplements for months and months, I got fed up with the pain and had one hand operated on. It took a while to heal, and I still occasionally get some tingling or aching here and there but it felt better to where six months later, I was messaging my hand surgeon to (hurry!) and schedule me in for surgery for the next hand. The recovery process.... I don't have completely normal hands now as if nothing has ever happened, but my hands feel better than before the surgeries and if I had known then what I know now I would've had them done sooner. After each hand operation, I went through hand therapy which helped me. It helped me much more than the hand therapy I tried before the surgeries in an effort to get rid of the carpal tunnel. Surgery was the only thing that made a major difference in my symptoms. And the lidocaine/epi injection they use during surgery to numb the hand was the best my hand had felt in a long time.

That's quite an interesting story but I'm not sure how 'atypical' the story was - dysaesthesia, pain and tingling are all well known symptoms of CTS in some, though not all, patients. What matters much more than the nature of nerve related symptoms is their distribution and timing. So for example, isolated shoulder pain during typing would be highly atypical for CTS. This is not entirely flippant - there are papers in the literature describing patients with 'CTS' who had a symptom complex which included sensory disturbance in the feet. A lack of response to physiotherapy, acupuncture, chiropractor, most medications, herbs and supplements might also be described as pretty typical. The only thing in that story which is definitely atypical is a lack of response to injection - though one would want to know a bit more about it - what exactly was injected, where, and whether there ws really no response at all or whether there was a temporary benefit. JB

Hi JB
Well here's an update, iv had the surgery today at 10am. I got really upset in the hospital nearly never had it done. On meeting mr Bantic I asked about the c-trac and he said it's not available on the nhs, fair enough, he said I could buy one, I'm thinking but with no evidence of it working what would be the point. I said I was so scared because of being awake through it, I can't believe he said it was possible for me to have a general but I would have to re-book as no one there to do it, fair enough again. Had I'd been able to meet with mr Bantic before today I could have got all this stuff out the way, and the outcome would have meant he wouldn't have the jibbering mess in front of him that he had to face today. I can't believe I was told I could have a general after being told by everyone else it's not possible, mind you I think if you'd seen the state of me you'd be saying the same! I talked myself into to doing it, I didn't want to mess everyone about, I was feeling very embarrassed for being so upset. So I put myself into a very calm mode, had a lovely nurse talk to me all the way through, I was even laughing at one point. Then when the surgery is over, he turns to me and says 'and Jane I don't appreciate you putting bad things about me on the internet' totally shocked I said I hadn't put anything bad on the internet, I didn't know what he was talking about. He was insistent The only time iv ever talked about him is on here. Every word of what iv said is 100% true. So I said do you mean carpaltunnel.net? He said yes, I said again I hadn't written any thing bad about him. So I thought I'd better get on here and read back everything I wrote. Reading it back I can't see anything bad! And the other thing is, my real name is not on here! My user name is flymo! So how the heck would he know it's me anyway! With what he said and look he gave me I was in instant floods of tears again. He might be a great surgeon, and I am very grateful I was able to get him to do it, but don't know why he would say that having just operated on me! He had every opportunity to say it before, and had he, I would not have had it done, but then again, I guess he knew that. I can't help it if he thinks I'm spreading bad things about him, why would I do that, I wanted him to operate on me and by pursuing the fact that he told me himself I could be referred to him, now I'm the bad guy! I have told the truth, and if mr Bantic doesn't like it there's not a lot I can do about that. If he thinks it's reads bad, that says it all. I am very grateful to mr Bantic for doing my op, and our nhs for making it possible. Do I feel I made the right choice? Right now, no. In time I'm hoping I can come back on here and tell you what I wonderful decision I made, and how I should have had it done sooner! Thanks JB

I've just read back through the thread too and I don't think you were unduly critical. If you had posted direct criticism of a named doctor on here (other than me) I would probably have censored it anyway. You did report at some length however on the difficulty of actually getting to see him personally and I think that was valid comment. My guess is that he has perhaps taken that as criticism even though it is not his fault but simply a matter of demand and the way NHS clinics are organised - it's easy to get annoyed by the things you read on the net where you cannot appreciate people's tone and body language. All you have to go on is the words on the page. Even so, if he would like me to excise his name from all the postings in this thread I'm happy to do that - all he has to do is ask. JB