Patient Tales
These personal accounts of carpal tunnel syndrome were drawn from a blog on www.the patientsvoice.org and give a vivid picture of the range of experiences which people have with this disorder. Remember however that some of these people may have been misdiagnosed and that patients who have had a bad experience with treatment are perhaps more likely to post on a forum like this than someone whose problem has been dealt with quickly and successfully.
AW - Hi, I have been diagnosed with carpal tunnel some 4 years ago. The first sympton was my right hand 'going to sleep' at night and I kept waking up with very painful pins and needles and finding it hard to get the blood flowing through my hand again... I since have received 4 injections into the wrist, which appears to stop this happening for about 8 months and then gradually, the same symptoms re-appear. I understand that the only real cure for this is an operation, where the tunnel is cut and reshaped to provide more space for the blood to pass through to the hand... I am very busy in my job and need my hand to work on the computer and have so far not had the chance to take out 4 or more weeks for the healing of the wrist after such an operation....more comments would be welcome...
GM - 1. numbness and tingling in my thumb and fingers of my right hand 2.by having very painfull needle reaction comparison tests on both hands and lowerarms. 3.it was uncomfortable to hold the steering wheel of my car or hold a telephone to my right ear. 4. i had surgery 5. i am not really qualified to answer this question although i believe tests to determine whether one has cts or not have moved out of the dark ages.if not then they should. my operation was about 9 years ago and i believe the problem may be returning. 6. yes
RP - I started feeling the effects of tingling fingers in my right hand and the eventual loss of ability to grip anything effectively afrer a while. I wouls also awakw with a cramp feeling in my hand. My doctor recognised the symptoms immediately and eventually a nerve conduction test was done which confirmed the diagnosis. Surprisingly the nerve test was done on my left hand and although I was not feeling any symptoms of CT I was told that my left hand was affected and that it would deteriorate in the short term...and it did within 6 months my left hand was experiencing the full effect of CTS. It did not have a great impact on my social or professional life really. I suppose with similar conditions you just learn to mange it; when the symptoms present themselves you just shake the hands out, wait a while and resume "business as usual" I was presented the options of having the surgical proceedure or having the wrists injected. I was told that even if i had the injections it was a short term solution so the surgery would be the better option. whilst the surgery to my right hand was successful i developed a "trigger finger" in my right thump which is basically the join locking. This was more inconvenient than the CTS. It was injected at the time when I had the surgery for the left hand.I eventually has to have surgery to the thumb. It has since been fine and so has my left hand. The only thing I am left with is a bit of sensitivity in the would site if both hand but otherwise I must say the problems have been resolved. Advice to health care professionals? I must say that I was pleased with the speed of appointments I recieved. I had the operations under "local" - I am not one to hang about after surgery!! The atmosphere in surgery was excellent among the surgical team and great care was taken to minimise the scaring e.g. cutting along the natural lines of the hands. I say three jobs well done - two carpul tunnel proceedures and one trigger thumb release.
MM - I was diagnosed about 10 years ago with CTS in my right had - I had the nerve test to confirm it and had also had the injection in my wrist. In late 2000 I had a severe stroke affecting my right side so I could only use my left hand. Sure enought the symtoms of painful pins and needles and numbness soon started in my left hand making it impossible to use the telephone. I was operated on in 2001 which made the condition much better. I echo the sentiments of Richard with regard to the surgery. I now have severe pain in my left hand mainly in my ring and third finger but I think that this is unrelated.
AH - I suffered with Carpal Tunnel Syndrome for over 10 years. I had no idea what it was, until I read an article in a Sunday newspaper, describing the same symptoms that I had. I went to my G.P. who quickly made an appointment to se a consultant surgeon. Because CTS was not classed as an emergency proceedure I had to wait for a few years, until I could be "fitted in". I waited, and waited until eventually a slot was found and I had my right hand operated on. I still had severe pain and discomfort in my left. I had to wait a further year until my left hand was done. Even though both my hands have now been operated on, the consultant advised me that CTS can return, and that I have to be aware of this. Whilst I am now free of CTS, there has been a down side to my operation, my middle finger on my left hand is still numb from the operation, which I had 16 months ago, and could not return to normal. It's a waiting game alright.
PC - Three or four years ago I developed what my medical friends called 'trigger fingers'. It pricipally affected my ring and little fingers on both hands, and the symptons came, stayed for a while and sometimes disappeared as quickly as they developed. Then they persisted, to the extent that the problem began to make typing rather uncomfortable, so I consulted my GP. She suggested that I should make an appointment at the local hospital with a consultant who specialised in hand problems, and after the inevitable wait which attends all National Health Service referrals in Britain, I was seen by the Orthopaedics and Trauma team. I was told that a simple operation was needed, and fortunately for me there was a window of opportunity on the surgeon's list only two or three days later. However, when details were being taken, I had to disclose that I was taking Warfarin, an anticoagulant drug which as a consequence of two deep vein thromboses in my right leg during the previous several years had been prescribed indefinitely. For this reason, the almost immediate operation was ruled out, and I was told that I should be contacted again when the operation could be scheduled and steps could be taken to substitute a different medication for the Warfarin, which would lessen the risk of serious bleeding during the operation. Before I was advised about a date for the deferred operarion, my trigger fingers ceased to be a problem, and my hands have been normal ever since. I was able to inform the hospital that I should not be requiring their services after all, unless the symptoms recurred, and they have not done so to date. I am 78 years old. Whether or not my problems resulted from carpel tunnel syndrome, I cannot be certain, but the condition must have been related to some form of trapped nerves in the hands or wrists.
A? - i got carpel tunnel both times i fell pregnant . they r not severe they niggle a bit now but i was told it was just due to pregnancy i had it .
KR - I had CTS confirmed in both hands about ten years ago. i had them operated on succesfully, although i did get a recurance in my right hand which was dealt with by injections. what they dont warn you about is that you may lose strength in your grip or in finger to thumb pressure after the operation.I retained about 80% strength in my thumb pressure, the significance of this did not become apparant until I became an insulin dependant diabetic. I find I now have real difficulty using the syringes with my reduced thumb strength.
E? - I was a ladies Hairstylist for many years,Then my husband and I went into boarding kennels, where I found the scrubbing down of the knnel walls, becoming a real chore, the poains in my wrists and fingers just got worse and worse, it started off, like a throbbing tightening in the wrists and down into the dfingers,and such pain used to make me feel sick, almost vomit with it........it was really getting to me, I was becoming tense, irritable and started dropping things...........so I finally went to the Dr's and he said it was carpal tunnel syndrome probably through the years of hairdresssng, then the kennel work although I loved the animals was just the final straw, I could find no resting place, so was admitted into hospital the ' Stoke Manderville' where I had the operation on both wrists.........this was way back in 1992, and although it defiantely helped ease the pain, my wrists even today play up and I have to wear a brace to help me.......now at going on for 74 years I doubt if they would operate again......so I just have to wear the braces, and rest the hands and wrist when I can......
BP
- Had an operation on the left carpal tunnel, this was not sucessful stil suffer in both hands with pins and needles and with hands both going to sleep (lack of circulation)
H?
I too have been diagnosed with CTS which affects my left hand/arm. Originally due to a car accident where I injured my left shoulder,arm and neck, it is very painful, with constand pins and needles, I am prone to dropping many things and I am left handed. I am currently waiting for repeated Nerve Conduction studies to determine whether they can operate or whether I "Just have to live with it" which in this day and age is pathetic. My shoulder and neck will never be right and have been told to learn to write with my right hand. All well and good but I cannot play a guitar the other weay round very easily.
SM - I had CTS in both hands during pregnancy. In the left hand it went away after pregnancy but I was left with it in my right hand. I was not in pain with it, but had the usual deadening of the hand and lots of tingling, resulting in me hanging it over the side of the bed lots! In the end, I had the operation and would recommend it, definitely. It took a good 8 weeks to feel anything like normal afterwards, but now I don't suffer at all and the scar is hardly noticable - about 3 cm long on my hand (I had heard all sorts of rumours of long scars all up your arm!). The operation was done under local anaesthetic and that was the worst thing - I would ask to be put out next time! I didn't even need pain killers after the first 24 hrs. Go on, get it done! I had it done on the NHS at Addenbrookes hospital, Cambridge and the surgeon and the team there were fantastic!
GK - It seemed to come on overnight, very sudden sharp pain but was diagnosed also very quickly - thankfully! Had to be off work for a short while and wear a terribly attractive brown splint, but it was cured relatively fast. Hoping that I am cured, as it really wasn't at all pleasant. I'm now very careful when spending any length of time at my PC!! I had excellent information and assistance from my GP. Regards GK
CD - I had surgery on my right hand 7 years ago after developing CTS whilst pregnant I am having surgery on my left in July. My right hand still experiences CTS so the surgery is not a cure and i am sure the numbness is connected to my neck and upper spine which i have arthritis in.
JH - I was first diagnosed 6 months after i had my right leg amputated after bone cancer and i had to put a lot of pressure on my wrists with having to use crutches all the time this was in 2002. Firstly like most i had pins and needles, then using the phone was very uncomfortable, sleeping also was bad as it was painfull when i woke up all numb on my right arm and wrist. I had all the test and they confirmed CTS in both wrists. So in Feb 2003 i had my right one done and although they said it would be a while to recover it took a lot longer and they wanted to operate on the other one within 6 months i just couldnt. So i cancelled the op. 2years later i had the other one done. I must admit that both ops went very well and certainly relieved a lot of the pressure and pain, now and then i get a pulling feeling in my palms but other than that i would advise anybody needing this op to go ahead.It was very difficult for me in my situation dealing with an amputation and then 2 ops but i got through it and i now watercolor paint and im always on the PC so you see it is worth it, Good Luck to everyone.
JP
- I have had problems with my left arm going "dead" and floppy for years now and my neurosurgeon (I have several discs out in my back and neck)did nerve conductions tests which showed slight CTS in both hands.I had had no pain, it did not effect my day to day life except for this deadening of the arm at night and the occasional wrist pain where I had to wear a Tubigrip for a few days. In June last year I had surgery at Leeds General Infirmary on my left hand, under local anaesthetic (a weird experience in itself) ever since, I have to admit, the night problem has gone. I'm supposed to be having the right hand done but it never has caused any problems and so I'm reluctant to go through that local anaesthetic gain, which believe me is pretty damned nasty! I would recommend the surgery to anyone in dire need, but it isn't pleasant and soory according to my surgeon it is all done under that these days no knocking out!
E?
I had an operation several years ago and I still have problem with pins and needles and the hand going to sleep. The surgeon wanted to operate on both my hands but I am glad that I decided to have one done at a time. I will not be having the second operation. I have degerative discs and arthritis in my neck and I have often wondered if this is the cause of my problems.
F? - I was 30 and had my first baby when I first experienced symptoms of carpul tunnel. I worked in a surgical theatre and kept dropping instruments; as a result Ihad t change jobs. I was diagnosed through the symptoms I was exhibiting. I wore stapping for a few months then eventually had the carpul tunnel release operation. My general conclusion is that the condition is really debillitating.
PO - Have been suffering for quite a number of years now and think it will be with me forever after having both wrists operated on 3 times each and still it has returned.I feel it is something I will have to contend with even though the quality of "life" regarding thing has been severly disrupted as I cannot do any type of work that involves much usa of my hands.Night times are getting worse once again the lack of a good nights sleep is wearing me down I would be very grayeful to anyone that has some solutions that are of help.
RS - I have read with interest these varying experiences and one thing comes to mind is what I was told by my surgeon; that we are all different physiologically. We should not expect the same outcomes to proceedures as the other person. That is the reality i am afraid. I have had both hands operated on for CTS, both under local aesthetics. The worst part was the injections (does anyone disagree) but beyond that the operations were fine. The usual 4 weeks off work and 8 weeks or so to get back into the groove of full usage. I would urge anyone to have the operation if it is available; but keep in mind it may work effectively or it may not, but you will not know unless you give yourself the chance. That's the human body for you!
DV - I was diagnosed some years ago. My symtoms were numbness, pain and tingling mostly at night, bad enough to disturb sleep. I had a superb GP who knew exactly what it was and sent me for follow up tests which confirmed the diagnosis. I opted for surgery straight away and I've never looked back since. unfortunately I think it's starting in the other had but I wouldn't hesitate to have surgery again.
DR - I first had CT during my first pregnancy in 1979. It was extremely debilitating, towards then end of the pregnancy i was even unable to hold a fork to feed myself, or a pen to write. It was in both hands, and I got very depressed wondering how I could possibly care for a baby like this. Baby arrived, symptoms went! I was free of pain for the next 20 years, and then the symptoms retutned in both hands, very severely in the left. 3 years ago I had the operation, the relief was amazing. I still get some symtoms in both hands from time to time, and it does seem to be getting worse again in the left hand, but nothing like as bad as it was pre op.
FD - In 1983/4 when I was preganat with my 23 year son I got up one morning with my left wrist hurting. Because I was pregnant it had to wait until son was born it was I was told RSI or Capol syn.23 years latter tip of middle finger amputated against mine & my consutants advice, then got gangrene as I have Raynauds Decease.Allergic to anascetic and get gangrene if I get a cut, so no operations for me. I have a wrist brace which holds my thumb in place otherwise it would set firmly under my hand. Have pins and needles, my finger go numb and white and there is nothing they can give me. Because of spinal damage and osteo/rhuematoid arthritis and osetoparoisis I am on patches that release a small dose of morphine every hour for my spine as I was in constant pain, the side affect of that is that the pain in my wrist is now not as bad as it was.
JD - I wake up with pain and tingling in my rt hand, holding newspaper, book etc painful, attended cts clinic, refered for physio no grerat change 6 month on. Now awaiting course of acupuncture. my problem I feel convinced stems from back injuries falling against my shoulderblade several times. My physio says it is a follow on from having charcot marie tooth disease a neuro muscular disorder I had from infancy.I have had two courses from my gp of acupuncture and each time the symptoms have dissapeared a week ot two after finishing.
FD - I have had it since 1984, do not have the use of my left hand,wear wrist brace with thumb attachment to stop thumb going under my hand due to the nerves pulling my thumb under. Can't have operation have I have Raynauds even a cut can turn gangrenous can't be anesitised as I am allergic to it any way. But having spinal damage and having patches for the back pain which releases a small dose of morphine every hour does have a knock on effect and helps the pain in my wrist, does not stop the pins and needles or numbness. There is a ey simple operation to cure it for 99% who does have it, the other 1% like me who cannot have an operation has to lump it.
DF - I started to have problems with severe pins an d needles in my right hand at night just over a year and a half ago. Within a short space of time I started to lose my ability to grip. A visit to a consultant confirmed carpal tunnel and I was given an injection which worked for about 6 months. A second visit and a second injection, this time the injection only lasted a short while before I started to feel as though my hand was being placed in a pan of boiling water all the time. I had an operation for the CTS in November last year, under local anaesthetic (never thought I'd be brave enough for that...) in the hospital that I work at has brought me total relief. i was off work for a total of 8 weeks but only because my job as a medical records officer is quite physical and the consultant didn't want me to do any physical work until he was happy that the hand was perfectly recovered. I would recommend the operation to anyone who is suffering.
T? - i have tingleing in both my hands and arms, but the nureosurgeon said it is just due to a trapped nerve in my neck, i have been siffering now for 9 wks. I am not able to work as my job is driving buses all day. i am not to sure what to do now, does anybody out there have any ideas.
L? - I developed carpel tunnel syndrome when I was pregnant, and was told it would probably go away after delivery, it didn't. I have had both hands operated on at seperate times. My left hand has now been fine for 5 years my right hand was good for about four years and is now returning. The surgery is not nice, expecially with local anaestetic, feels like 100 bee stings when going in and can be very painful for the first few days after. I would however recommend that you try surgery as it has cured one hand completely (for the time being) and they other was fine for four years
DC - I first found out I had Carpal Tunnel Syndrome when I got a tingling in my fingers and they started to feel cold. Isaw the dr and he diagnosed Carpal Tunel syndrome. i was referred to the hospital and they gave me a steroid injection which didn't work so 6 months later I had an operation to realease it. This seems to have worked but as other members of my family had the same ting we are now wondering if it is hereditary. My operation worked but when my father had his done it was a failure and his carpal tunnel syndrome in both hands was worse that it was before
A? - I've had cts for 7yrs now my gp diagnosed it very quickly and I've had all the tests and injections but nothing seems to really help. The consultant at the hospital offered me an op but told me it could go either way as there are no guarantees so being a single parent I could not afford to take time off work and just plod on as best I can. Like most people with this I have good and bad days but I agree with the comments that the painful sleepless nights are the worst. I wear a splint to help during the day and sometimes all night just to get some relief but unfortunately like most things this does not always work so I have to limit myself on the pc and a couple of other hobbies I have . I am at the moment due to start college so that I can train for a job that does not mean I am using my hands as much and hopefully this will help . My sympathies and best wishes to all of you with this quite debilitating syndrome which I feel is not understood by anyone other rhan another sufferer.
Revision date - 20th May 2011
