shall I go for the offered surgery?

Moni
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Hi Dr Bland, your website is a valuable piece of knowledge. It's great. I looked through the page "when surgery failed", but could not find anything about complex regional pain syndrome. In New Zealand it is a recognized complication of CTR, but the German orthopaedic surgeons do not believe in it (according to my parents). My NZ orthopedic surgeon told me that I have developed it after CTR. I looked it up on the web, but what I read there does not fit my symptoms at all. For me, it is more like having still carpal tunnel syndrome, although ultrasound and MRI showed a separation of the carpal ligament (and a bruised nerve). That was ten months ago. The latest conduction study (Sept 2011) showed improvement in some parts (I think it was the motor function of the left hand), no improvement in other and there was also something mentioned about suboptimal stimulation when doing the measurements (right hand). I cannot be more specific because I was so frustrated that I put the letter away and cannot find it anymore. I am quite frustrated about my situation and my orthopaedic surgeon is it as well. Because of an on-going deterioration of my symptoms (for 5 months now, increasing numbness, tingling and surely pain), he offered me to do an "extended release surgery", but I do not know if I should go for it or not, because the timing is not the best. The surgery would be within 2-3 weeks before I am heading back to Germany. At the moment I think I will go for it, because I am scared to return to Germany and nobody is willing to help me there. That is my nightmare. My parents told me to wait till being back in Germany and see a hand specialist. Here it would not be a hand specialist, but at least someone who would be willing to try to help. He failed to improve my hands permanently (my symptoms improved only for six weeks and returned then), but he was always there when I had trouble to cope in the past 18 months. Sorry that I do not give much information, but I am afraid to get disappointed again. My question is - Shall I go for the surgery or not? I would do almost everything to get rid of the pain and the Oxycontin to go diving again. Thanks a lot and have a good night, Moni

jeremydpbland
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This is a remarkably similar post to that of 'Twinnie' - is there a large population of expatriate Germans in NZ? As with that other query I think the strongest grounds for re-operation are the change in the NCS results. To boil it down to a very simple recommendation - if it was grade 5 or below before surgery and it is still the same grade 6-12 weeks later then it is worth re-operating. Interpreting what you say about the imaging results is difficult as it depends very much on who looked at the images/did the ultrasound. I would certainly try to go to a specialist hand surgeon for re-operations. Complex regional pain syndrome (what used to be called reflex sympathetic dystrophy) is a known, but rare complication of carpal tunnel surgery and should be diagnosed on the basis of typical features of the condition - not used as a diagnosis of last resort when you cannot think of anything else to call it. Any more specific recommendation really depends on being able to examine the hands I am afraid. You clearly need to find someone local to you who is interested in CTS. JB 

Moni
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Thanks a lot for your answer! The story of 'Twinnie' and mine are similar because we are identical twins. We have similar problems with our hands, but had different orthopaedic surgeons. She always had problems with numbness, whereas I always have trouble with pain. Both of us have trouble with delayed onset of local anaesthtics, we need more local anaesthetics and metabolise the drugs faster (unfortunately not chocolate ;-) ). I was the lucky one, because my hand surgery was 4 hours after hers and my surgeon got warned by hers, so that he used more anaesthetics and it only hurt a bit. Antje is always looking for help in the web, but I am too scared to do so. As Antje found your webpage, I asked her to ask you some questions, but she did not want to confuse you. We tend to confuse people. Therefore I created my own account and asked the question which bothered me most. If I get it right, you suggest to wait till I am back in Germany and see a specialist there? If you would be able to help us, I would not mind to come to England and see you. Chronic pain is something terrible and I haven't got much hope that it will get better some when in future. I begged my orthopaedic surgeon in January 2011 to re-do the surgery, but he did not want to jump into it. I have had steroid injection in both hands instead, which helped for about four weeks. In this time I could reduce the Tramal (sustained release version of Tramadol) to almost nothing - that was great. In March 2011 I saw a pain specialist here, who did also the exclusion diagnosis, that it might be atypical complex regional pain syndrome, but at that time I was cooling my hands with ice packs for several hours a day to numb the pain and burning sensation. Sometimes the hands still get so hot that it is hard to tolerate, but with Oxycontin I can do so a bit better than I could do it back then. Life is still not easy, but at least you gave me hope.
Thank you sooo much, Beate

jeremydpbland
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Well the two of you together would constitute an interesting and almost unique case report I think. You are relatively young to have CTS, though that does tend to be the case in patients with a strong family history of CTS and you seem to have four failed carpal tunnel decompressions between you, if I understand correctly and you have each had both hands operated. Is there anyone else in the family with CTS? It is perhaps also interesting that you seem to share other presumably genetic features in common - hence the local anaesthetic story. I do not wish to use this website to encourage people to come and see me as patients, especially not from abroad, and in any case I always find it much harder to pick up a case in the middle - I prefer to see my CTS patients from first presentation and deal with my own disasters. I doubt if I could contribute enough extra to solving the problem to justify you travelling to the UK. I am however interested in the fact that both of you have reported a response to steroid injection after surgery and, all other things being equal I would be inclined to suggest a little experiment before embarking on further surgery. I would repeat the NCS and ultrasound, give another steroid injection, and then repeat the NCS and ultrasound, perhaps 2 and 4 weeks afterwards, all the time tracking the subjective severity of symptoms in each hand. Between you you have 4 hands on which this could be tried. It is very unlikely to make you worse, and it may be predictive of whether further surgery is appropriate or not - though we are working in a completely evidence free zone here medically speaking. The limitation of course would be the availability of someone who could carry this out. It has just occurred to me that I may have a contact in Germany at present who would be interested so give me a chance to contact him and I will get back to you.JB

jeremydpbland
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One more question occurs to me - prompted by your comment about the hands feeling hot and responding to ice-packs. Is there any colour change in the hands, and have you ever had similar symptoms in the feet? (Alright that's two questions!) JB

ews
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Hi, I am a Neurologist with a special interest in CTS practicing in Heidelberg, Germany. Feel free to contact me or the hospital if you should wish to. After assessing you clinically- from what I have read in the blogs- it is likely that a possible treatment option would be US guided injection with steroids- depending on what is seen with the work-up.
http://www.klinikum.uni-heidelberg.de/Dr-Wilder-Smith.118952.0.html
Cheers! EWS

jeremydpbland
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As you can see Einar Wilder-Smith, who is the contact I was thinking of in Germany, would be willing to take a look at your hands (Thankyou Einar!) if you can get to Heidelberg and would undoubtedly give you a very experienced opinion on what to do next. Let me know how things turn out please. JB

Moni
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Sorry that I did not come back to you earlier. Due to some side effects of the narcotics I take, I was sick for the last 10 days. From now on, I will take constipation more serious. I had to reduce the amount of pain killers and stop using the voltaren emugel (my stomach got upset as well). Maybe steroid injections are helping - probably I am going to know that soon-ish. The surgeon here suggested to get another steroid injection when having the knee arthroscopy in the end of this month. Then I will know if it helps or not. Unfortunately the last time after the steroid injection (January 2011) I had terrible stomach pain for a week. My mum did warn me that that may happen - at least that were her experience when getting steroid injection for her back. Regarding your question - What do you mean with changing the colour? When the hands are hot, the arteries are more pronounced and the hands were most of the time a bit red-ish, but not as red as one put the hands in hot water. And my feet tingle once in a while, but only after long walks. And yes, CTS runs in our family. My mum had surgery in the same age as we had, two of her sisters and a brother had CTR between 35 and 45 years, and my dad as well as his mother had it done but in an age of 55+ years. Thanks for the contact to Einar! We definitively will contact him. A friend of us just told us that she had the CTR done in Heidelberg in 2001 when she was 24 years old. She still has problems with her hands but otherwise she is fine. Up to now, we were thinking about getting a referral to the center for hand surgery in Bremen, where we have friend we can stay with. For sure, we will let you know how it is going. Thanks a lot for your help!!! All the best, Beate

jeremydpbland
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I can't say I am surprised at the very strong family history. There are a few famiies who have been written up in the literature in which pretty much all members get CTS, usually at a surprisingly early age. In these families CTS sems to be inherited as an autosomal dominant characteristici but no-one has identified a gene to my knowledge. In your family the age of onset seems a little later than would be typical in these other families. The query about feet and colour change was related to the possibility that some other generalised nerve problem (like HLPP - described elsewhere on the site here) might be present - the feet question, and to the possibility that there may be a disorder of small unmyelinated nerve function - which can result in very unpleasant 'burning' sensations which can be alleviated by ice-packs - this is sometimes associated with marked redness of the extremities but is usually more marked in the feet. These disorders can be inherited. If that all sounds a bit technical donl't worry none of it is very serious and it is just illustrative of the sort of thinking processes behind trying to understand what might be going on in your family. If you can get to Heidelberg I would definitely go and see Einar before deciding about further surgery. `i'm assuming that your sister is also reading this thread now of course so I'm only posting in the one thread. JB

Moni
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Jepp, you are right. Antje is reading here as well. She just told that she got tested for HLPP. The result came back negative. Going down to Heidelberg is not a problem from our parents' place where we will stay in the beginning.Regarding the age, when the CTR was done in my family - I only know the exact age of my mum. For the others I had to guess because the family members are not so close. My mum was about 30 when the problems started and 34 when she got CTR done. The four years in between was a torture for her because nobody believed her in the beginning of the 1980s that she had pain in her hands. The doctors in our rural region just told her that she imagined it and only did not want to work. After two or three years of pain she finally ended up in a hospital where the doctors believed her and made the right diagnosis.
Thanks again for getting in contact to your German colleague. I am still not sure what is the right thing to do. The pain in my hands is ruling my life at the moment and I would do almost everything to get rid of the pain. Lately sometimes (like right now) also the ulnar side of the forearm close to the wrists are hurting as hell radiating into the wrists. I hurt the forearms close to the wrists when I slipped in the wet kitchen last year. That was the end of a series of small accidents aggravating my problems with the hands. Unlike my twin I overworked the hands in the beginning of last year by driving 90km over windy gravel roads every day for 4 weeks, carrying heaps of 20L buckets filled with water and shrimps, and building my own experimental equipment. I was not used to the latter work and did not had the right tools to build dividers for the flume tanks. I had to use carving power tools to drill holes, smooth edges, and cut wooden boards in shape. I think I got tendonitis in both hands, but the GP just told me that I overworked my hands when I was unable to move my left thumb and saw her. Instead of getting better as I was told, the hands got worse, tingly, and numb. Then I tripped and fell on my hands (and twisted both ankles - trust me that is possible). And the freak accident in the kitchen was the end of this dilemma. I hit the bench top / dishwasher basket with both forearms (on the ulnar side close to the wrists). Since then the pain in my hands and wrists got worse until surgery. The rest of the story you know - it got better for a short while and then worse again. I finally conducted the long planned behavioural experiment for my PhD this year in May for which I built the experimental equipment last year. Since then the hands started to worsen again. The strength as well as most of the sensations are gone, the hands are clumsy and for a few times I could not move my fingers (thumb to middle finger) any more. It is a strange feeling to be unable to move (bend) the fingers, although one really wants and tries it. Once it took a few minutes until I was able to bend them. That was the time the surgeon here decided to re-do the CTR surgery, but it is still not clear where the funding will come from. However, the knee goes first. Both, osteopath and podiatrist think that the torn meniscus needs to get done sooner rather than later. We will let you know how it is going. Will we be able to update this thread or need to create a new one?
Thank you very much for your help and advices! Beate

Twinnie
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Dear Dr Bland,
yes, I am following your conversation with Beate. It is not necessary to post it in two different threads. Thanks a lot for making contact to your colleague in Heidelberg. I highly appreciate it. We already had a look at his web page. He worked at the same university at which we are currently doing our PhDs. :-)
I am keen to see him and learn what he would suggest to try. Beate has so terrible pain and desperately looking for a solution to get rid off the pain. I also hope to become pain free some when again. I do not want to need pain killers and steroid injection to do my job for all my life. If there is a non-surgical option to become permanently pain free again, I want to give it a go. I am terrified of surgeries after an ACL reconstruction surgery 15 years ago. I did a bad choice with doctor and especially with the hospital, but, well, that is another story. Surgery is really the last resort, but if there is the chance to get rid off the pain, I would go for it as well. If you can think of anything else we could try to improve the pain, and if it is only for a period of time, could you please let us know?
I cannot thank you enough for your help. You are the first in a long time who is seriously thinking about our problems. Here we got the mark "pain syndrome" and nobody seems willing to think about alternative. Thank you! Antje

jeremydpbland
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I have been thinking about the story of the two of you being resistant to local anaesthesia. There are a few reports of this in the literature, along with some suggestions that it can be an inherited trait, perhaps related to mutations in the genes for sodium or potassium channels in the cell membranes, though there is some scepticism about this in the anaesthetic community and no gene seems to have been identified. Does anyone else in the family have that problem too? JB

Twinnie
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Yes, our parents have the same problem. Our father found it out when he had hand surgery under local anaesthetics, our mother had similar experiences. Because they did not want to scare us before the CTR, they did not tell us about their problems with the local anaesthetics. Well, so we had to learn about it the hard way. I am not sure if anybody else in our family has the same problem. I never heard anything like that. I know my grand mother woke up during her abdomen surgery, but from my opinion it was probably more the fault of the hospital. The hospital is infamous for malpractice, but the only hospital in the region where our parents are living. Beate and I also assume that we inherited this problem from our parents.
Thanks a lot for report. It was interesting to read. Like the woman in the report Beate and I have also trouble with the local anaestehtic for dental treatments. Our dentist in Germany never believed that we actually had pain after having local anaesthetic, but despite his attempt to numb the area the dental treatment always hurt. Especially root canal treatment hurts like hell. Our dentist here in New Zealand told us about a family who he could only treat under general anaesthesia. They did not react to local anaesthetics at all. So he was aware of this problem when he treated us, luckily for us. Beate is wondering if the this resistance could be a reason why she needs so many pain killers to numb the pain in her hands. It is bothering her quite a bit that she need 40mg Oxycontin, 150mg Diclofenac and 75mg Amitriptyline per day to keep the pain in her hands more or less under control.
I want to thank you again for getting in contact with Dr Wilder-Smith. We will see him when we are back in Germany in beginning of next year. We found out that he worked at the same University at which we are doing our PhD. The Otago Peninsula with it's unique wildlife is a favourite place of all of us. The world is really a small place. :-)
Cheers, Antje

Twinnie
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Dear Dr Bland,
you asked us to keep you updated. Yesterday Beate and I got steroids injections in the both wrists again. Beate could not cope with the pain in the wrists any more, I had a knee arthroscopy yesterday and I could not deal with the crutches because of the hand pain. Both of us got pain relief from the steroids injections. You mentioned earlier if the steroids injections have effect on the pain of the hands, there is something what can be done for our hands. It gives me hope that there may be a solution for our hands.
Cheers,
Antje

jeremydpbland
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If there is an immediate response to injection of the wrist that is usually because the doctor has included a local anaesthetic in the injection. I found another paper recently suggesting that subjects who showed 'resistance' to one local anaesthetic might show no resistance to another one so there is scope for considerable complexity in this. The effect of steroids on CTS symptoms usually takes at least 12 hours to appear, and is usually between 24 and 72 hours - so I wonder just how fast the efect was and what exactly was injected? JB

Twinnie
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Thanks for reminding me that first the local anaesthetics kicks in. I forgot about that. And I am sorry, I can't tell you really what he had injected. I got the steroids injection, after my orthopaedic surgeon had finished the knee arthroscopy, so I was knocked out at that time. While I was at the Day Surgery Unit to recover from the surgery, he gave Beate the steroids injections. Beate forgot to ask what exactly he had injected. It was a mix of local anaesthetics and steroids. Sorry, that I can't be of more help. I will see the surgeon again in 3 weeks and will try to remember to ask him. The steroid injection which I got in beginning of September contained Kenacort A 40, 40mg/1ml, if that is of help. I am getting really furstrated now, that my hands made a turn to the worse again. Only the contact to you and the hope that EWS can help, keep me going.
Cheers, Antje

Moni
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Hi Dr Bland, I am sorry to bother you again. I have two new questions for you. Does using voltaren emugel creme have possible side effects? I am using it more often than recommended, so about 6-8 times a day because my hands hurt so much. And a 50g tube lasts only a week what I noticed recently. Is there anything I need to be aware of? I changed from diclofenac tablets to Ibuprofen three weeks ago because I had trouble with my stomach. The other question is, can something else besides a tight carpal tunnel ligament cause pain and influence the median nerve? I am on crutches at the moment because I had bilateral knee arthroscopies 9 days ago. Although the hands got better lately due to the steroid injections two weeks ago (I had more sensations, but also more pain), since I am on crutches the hands gets worse and worse. The fingers have been totally numb three times in the last week (after a 20 min walk) and they tingle as crazy all the time. Today I have had four times a horrible pain in my wrist joint (from the outer side towards the middle of the joint - starting in the area where I hit the benchtop a year ago). It was such an agonizing pain that I started to cry. I never had such pain before. And every movement seems to aggravate the pain again. If I do not use the wrist it seems to be fine, but as soon as I use it it starts to hurt again. At the moment I take more opioids than ever before, because my knees are still quite sore from the surgeries and massively bruised. It was thought to be a torn meniscus in each knee, but it turned out to be a too tight lateral retinaculum which was loosened in both knees during the arthroscopies. The longterm outcome for my knees is supposed to be good. But regarding my hands -would you have any suggestion how to manage the pain? I cannot cope any more. It's too much at times! Thanks a lot for your patient, Beate

jeremydpbland
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Voltaren Emulgel contains diclofenac. I am not sure how much of this actually gets absorbed through the skin - presumably some does or it would not have an effect but I would expect it to be much harder to know what the systemic dose being 'taken' is. Local irritation at the site of application has been reported but that should be obvious if you are getting it. Systemic absorbtion can, as you know, cause stomach problems and allergic reactions. Lots of other possible systemic side effects have been reported with diclofenac taken orally but some of the links seem to be a bit tenuous. I think the main concern would be over gastrointestinal bleeding and the risk of that is probably proportional to the total amount of all non-steroidal anti-inflammatory drugs you are taking by whatever route - thus oral ibuprofen and topical diclofenac will both be contributing to the risk and the general advice would be always to try to limit your total consumption of these drugs.

Crutches can be a serious nuisance but it rather depends on the design. If, in using the crutch, you are placing pressure directly on the heel of the hand, exactly where the carpal tunnel is, then you are probably adding to the pressure on the nerve from the outside. As you have already had surgery your median nerve will be closer to the surface and possibly more susceptible to direct pressure and irritation by this mechanism. If you can get enough support from them it may be better to try a lightweight walking pole/ski-stick - which is held in a grip which does not apply pressure over the carpal tunnel (hard to illustrate in a text reply - I will try to put some pictures on the site at some point).

There do seem to be patients with symptoms exactly typical of CTS who have normal nerve conduction studies, normal ultrasound imaging, and whose symptoms do not respond to splints, steroid injection or surgery. They are rare but obviously such cases do make one wonder whether there is 'something else' which has identical symptoms to CTS. The best candidates neurologically speaking are probably thoracic outlet syndrome and C6/7 radiculopathy but there really should be some differences in the symptom patterns and investigation results from these and often you cannot find any evidence of these disorders either. JB

Moni
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Dear Dr Bland,
Thanks a lot for your answer. Sorry that I haven't updated you earlier. December was a hard month for me. I had bilateral lateral retinacular release which solved my problems more or less with the knees (the left one is still a bit stiff). Afterwards I had so much pain in my hands that I went for the extended CTR. I thought and still think that it was worth a try. The surgery went well - the nerves was trapped in scar tissue and I had white plaques on the nerves in the wrist area on the side of the forearms. My surgeon never had seen anything like that before - by the way he is a foot and ankle specialist and can do miracles there - he removed the plaques and sent it to the lab for analysis. It came back as scar tissue around the nerves - sorry I cannot remember the chemical terms. The pain decreased gradually with time... till I got the stitches out (9 day after surgery, 18 stitches per hand, 11cm long incicsions). It seems to be my faith to have only a short time of relief and then pain again... The surgeon did not want to remove the stitches so early but with me going back to Germany he had no choice. I got the stitches out at the 23 December. At that time the wound has not closed properly in the left palm and was bleeding. At Boxing Day the wound on the right hand popped open in the wrist area and at New Year in the wrist area in the left hand. The wounds got infected and air is/was moving in the wrist-palm-thumb. I got two different types of antibiotics - the second one seemed to help, but also caused a skin rush all over my body. At that time I was flying back to Germany therefore I decided to continue taking the antibiotics and finishing them despite the skin rush. Since Monday the thumbs-hands-wrists are painful again. On Tuesday I had trouble to bend my left thumb because it was swollen... Therefore I wanted to ask my GP in Germany for another course of antibiotics but he sent me to hospital to get the wounds checked by a surgeon. It ended like it did the time before in Dunedin - both GPs were really concerned and did not like that I still have air in the hands and that the wounds were oozing. And the registrar (NZ) and the consultant (Germany), repsectively, were amused about the GPs' concerns. Yesterday the 'hole' in the right wrist has closed but now the hand hurts more then before. I really hope it will pop open another time to relieve the pressure. The left wrist is still open and the hand is still better than the right... I lost hope to be painfree again. In 10 days I will see EWS and hope that he has an idea how to help. I really want to get rid of the Oxycodone to go diving again...but I lost hope. My twin wanted to update you about her hands as well so please do not get confused. We wish you all the best for 2012. Cheers, Beate

jeremydpbland
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I guess partially unhealed surgical wounds and even more local scar tissue might make it difficult for Einar to assess what is going on. I saw a patient last Friday who has had three consecutive attempts at carpal tunnel decompression and has been left with more pain and less function in the hand than he started with and I think one has to be very careful about indulging in serial hand surgery. Are you both back in Germany now? JB

Moni
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Yes we are. What can you do in case when carpal tunnel compression failed multiple times? Anything?

jeremydpbland
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Sorry to be pessimistic but in the few cases that I have seen that have been operated more than twice all have been left with permanent disability - as have a significant number of those operated twice or once. Every case is different however and a great deal depends on whether the diagnosis was right in the first place and how bad the CTS was to begin with if it was CTS. Most of my thoughts on failed surgery are in the page here devoted to it - which I know you have read. JB

sallym
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hello twins,
Sorry to hear of all your difficulties. We have a strong family history of CTS in our family too, with all three of my sisters having been diagnosed with it, and my younger brother experiencing symptoms, but he has had NC tests and been told he does not have it. I believe my father also had it. I am going for surgery soon, and hope it will sort out the problem for me.

jeremydpbland
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With that sort of family history, if your younger brother's symptoms are similar to those of other sufferers in the family it is highly likely that the 'normal' NCS are a false negative result. I haven't heard from the twins for some time on here so I don't know if they have found a satisfactory solution to their problems yet. I have recently come across a patient of my own however who describes the same history of being 'immune' to the effects of local anaesthetics - another curious feature of their family history. JB

Moni
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Hi sallym,
good luck for your surgery! We keep the fingers crossed that everything will turn out very positive for you.

Moni
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Hi Dr Bland,
it's good to hear that we are not alone with that problem, nevertheless we are sorry for your patient. It isn't easy for anyone.
We are not sure if you are still interested in our fate or better the non-progress of our hands. Here in Germany it is the same story all over again. We got told to wait and hope that the hands get better. It's frustrating. We can't work in our job because of the hands, and nobody has an idea, what we can do to change things. We have seen EWS twice, before he disappeared on us. EWS left Heidelberg in May or June. Last month we saw a hand surgeon, the first one willing to find out what exactly is causing the problems in the hands. He ordered MRIs of our hands which show that the nerves got stuck in the scar tissue. After considering every fact he offered both of us to re-do the surgery, free the nerve and put a fat-pad on the nerve to protect it from the scar tissue. He also told us that this is the LAST thing what can be done for our hands. He is confident that it will help, but can't promise wheter we get pain-free again. We thought thoroughly abpout his offer and we will go for it, because it is better to try it than to wonder if it could have helped. And it gives us a bit of hope that we can work in our jobs again. Inbetween I had given up hope, but my twin kept saying that we will find a soultion for our hand problems and that everyone needs hope in sad times. We can keep you updated if you want to.
In May my sister had an high tibial osteotomy (HTO) of her left knee. She had fourth grade cartilage damage in one compartment of her left knee, probably caused by a wrong placed ACL-graft. Her orthopaedic surgeon told her to go for the HTO better earlier than later, in 2-5 years she would need an artificial knee. And nobody wants to get a TEP in it's thirties. It was good to get it done because the original pain in her knee is gone, but she still has some trouble with her knee. We know that it will take 1-1.5 years before everything has healed.
I am wondering if you can give an advice. Besides the problems with my hands I have a SLAP tear in my left shoulder. The orthopaedic surgeon told me that I will need surgery for that as well. He recommended to get it done as soon as possible. Now I am wondering if I should get the shoulder or the hands get fixed first. Both hands and shoulder hurt a lot.
Cheers, Moni and Twinnie

jeremydpbland
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I remain interested of course, but wary of predicting a satisfactory outcome. The surgical procedure of dissecting out the median nerve form scar tissue and interposing a fat pad between the nerve and the surface has been written up a few times in case reports but there are not enough examples to make it an evidence based approach to persistent problems after carpal tunnel surgery. I think it is fairly unlikely to make you worse if done by a specialist hand surgeon.

EWS has gone back to Singapore. I saw him in Rome in May when he had more or less come to the conclusion that you did both just have particularly difficult CTS rather than anything more exotic.

I'm afraid I know very little about shoulders - I defer to my local shoulder man when I encounter a problem with that joint and in this case I would be inclined to ask your shoulder and hand surgeons which order they think would be best. One would hope that they would agree between them. JB

Moni
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Dear Dr Bland, I am sorry that I did not keep you in the loop. I wanted to write you earlier but the shoulder caused a lot of pain and I was not social at all. But back to the hands - I decided to get the right hand done first - for many reasons. In end of November 2012 we had hand surgery for the right hands. EWS was right with rather difficult CTS. In Antje's case the carpal ligament had grown back together and the nerve was still compressed. Unfortunately she got a huge scar due to a minor complication. A lack of blood supply caused some tissue to die. The scar is covering an area of 5cm x 3cm (length x width) and if it gets hard, the ulnar nerve is influenced. Despite that, it was a success. Pain and tingling have decreased! I had also a great relief from the surgery. My problem was mainly the scaring. Nerve, tendons and scar tissue had formed a solid strand, which caused pain when I only moved the fingers. I did not know that we tend to get huge scars. We stretch the scars every day and try to keep the scar tissue soft. When the scar tissue gets hard, the nerve still becomes irritated resulting in pain and tingling. But now it is much better than it was before. In three weeks the left hands will be done. We keep the fingers crossed that the left hands will get as good as or better than the right hands. The hand surgeons are quite reluctant because of the massive scar tissue, but they told us they will give their best. We will let you know how it goes. Thanks, Antje and Beate

jeremydpbland
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I'm glad there's been some progress with the nerve symptoms at least and I'll let EWS know if you don't mind. It would be interesting to know if there has been any improvement in nerve conduction studies or change in the imaging but now that he has returned to base in Singapore it would be difficult to compare new ones I think. The scars sound rather grim - if you can contribute a photograph - suitably anonymously posed - that would be useful for me but if you don't feel like displaying them don't feel obliged. I occasionally see hypertrophic scars but never one 5x3 cm! from carpal tunnel surgery. It may be of course that the tendency to form exuberant scar tissue is part of the reason there has been such difficulty in treating your CTS - and perhaps even part of the reason why you have CTS to begin with - is there any evidence of any similar tendency with the knee or shoulder surgery? You may have noticed that there is a recent posting on the forum from a patient who has had 4 operations on one hand - it remains to be seen quite what is going on in that case, and there is also an American patient who, like you, has suffered bilateral failure of simultaneous surgery. Thanks very much for the update. JB

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