Diagnosed with Carpel Tunnel and being told I need surgery but not convinced??

Hi I have been diagnosed last year by my GP with Carpel Tunnel and he also thought that I may have De Quervain's tenosynovitis. I have had 2 shots of Cortosone steroid injections. The first one was great last October as it took all the pain away but by christmas it started creeping back and then I was in a lot of pain again so I had another shot of it in the wrist again in January but this time it didn't work. It has taken some of the wrist pain away but am still in a lot of pain with my thumb and palm.

A little info about me  - 36 year old female. Mother to young children and self employed working full time hours.

To back track I had symptons for around 2 years which first started with a pins and needles sensation in the tip of my thumb. Gradually I got pain all in thumb joint, wrist, slightly up the arm and the worst pain was pinching my fingers together to grasp an object.

Before the symptons I had an agravated shoulder which I needed physio for, I think this was caused by using crutches after a bunion op.

I then had to have another op on my foot a year later so had to use crutches for another 6 weeks or so. 

I am waiting to see a rheumatology consultant (appt in June) as several drs and physio have told me I have hypermobility syndrome (my daughter also has it). I have recently seen a specialist at hospital (carpel tunnel specialist) who said I neeed surgery for carpel tunnel. This is the part where I am concerned it may not be carpel tunnel. Its not typical of everything I read online about Carpel Tunnel as it comes and goes. Its like I have waves of it,  I will have a good few days where the pain is bearable and it doesn't stop me doing anything then I seem to have an overwhelming tiredness hit me then several days of terrible pain. On the first day of the terrible pain my whole body hurts (all joints such as back, neck, feet, hands), they all seem to subside to a level that I feel ok to deal with but the right hand (the carpel tunnel hand) is absolute agony.

I am now on day 5 of the bad pain and the hand is wearing off (still hurts a lot but not as bad as day 1,2 and 3). After a week or so of this pain it seems to ease again then the tiredness hits again and the pain comes back.

I have attached an image of my hand today as for the past 2 days I have noticed what looks like tendons or veins sticking up from my palm between index finger and thumb. It looks very different to my left hand and what ever it is sticking out is very tight.

Does this look and sound familiar to anyone with carpel tunnel? There is also a few reasons I want to be sure I would be doing the right thing with surgery: I have had further surgery to my foot after bunion op pain and looking back now I beleive this was all to do with hypermobility and I am beginning to regret it as it has restricted me a lot over the past year since I had it. Also I am self employed and a mum to 2 young children so I am  needed in top condition for my children and my business!!

You could start by doing my online symptom questionnaire which will give you a good idea of how likely it is that your symptoms are at least in part due to CTS. If you have had nerve conduction studies that also helps clarify matters when there is uncertainty about diagnosis. Follow the link from the support directory section of patientcouk

Dr J Bland

I would certainly push for a nerve test to confirm diagnosis

good luck Elaine 

Hi there..im not sure if it is cts or not..I also have had two cortizone injections in my wrist one which lasted two years the second obe only a couple of months..I found now that my thumb index and middle finger are numb mostly every day and night time it's horrendous. .ive been wearing a brace night and day for 6 months and I am looking forward to having a op to sort it but waiting list is 3months but have now noticed my left hand is starting to do the same..

DOROTHY

Hi thank you for your reply. I haven't been offered a nerve conduction test I will ask the specialist about this that I have seen recently - all I was offered was an operation after a physical examination. Sorry I can't find a link to your online sympton checker?

Thank you Elaine I will ask about this.

 

Good luck hope you get seen soon.

Just to add to my comments as I forgot to mention it, I have been wearing a wrist splint every night and sometimes a little during the day (it interferes too much with my work to use it when working). It was recently changed to an NHS one which is much comfier but less support on the thumb.

It's hard to post direct links in the forum here as they are subject to moderation - from running my own site I can see why - you can either go to the directory section of patientcouk and look for carpal tunnel syndrome there (you will have to enter a location) and then look under national support groups - its the first one. Or just google carpal tunnel syndrome and my name - it will be the top hit, or follow the link from the CTS page of nhs.net, or look a bit further down the google search - we are usually about number 6 or 7

And another attempt to direct you is being moderated (and will take days to appear) - go to the directory heading on patientcouk - search for CTS and follow the first link on the left 

Yet another way to get there is from the general information about CTS here - find the 'condition leaflet' on CTS and look for the link under 'Further Information' J Bland

Perfect thank you - I have found it.

Very good, we can continue the discussion on the forum there JB

Thank you for your help I have put a post on the forum there.

Your symptoms certainly sound like CTS. Everything you describe is what I was going through and I did not have the numbness and loss of strength and deterity all the time. Most of my problems occurred from computer use. Once I stayed away from the computer, the symptoms would go dormant temporarily. 

Before I had the CTS to both hands, I had a catscan done of the neck to rule out anything cervical and then the nerve conduction test. Generally, if you have any problems with your shoulder or spine, doctors want to do the CTS surgery first, if you were in need of that. 

In closing, I do not believe you need to have pain all of the time to have CTS.        I had more numbness than pain intermittently and if I had to do it all over again, I would have tried PT first before I agreed to both hands being surgically corrected. You might want to weigh your options and do what's right for you. A good hand surgeon can test you and evaluate your degree of cts.

Good luck and I hope all goes well.

Thank you for your reply it is really helpful.

Hi I wanted to put an update on this as I feel its important if anyone else was ever looking on the internet for similar symptons.

I now have a few more answers after tests, xrays and specialist appointments. I defo have CP and the muscle has began to waste in my hand exposing tendons which have become inflamed hence why they are visible. I defo need an op and when I feel ready for it I can be referred for it.

Secondly I also got some answers to all the pain and tiredness I have suffered for years. I am grossly low/deficient in vitamin D and apparently have been for years but somehow the previous results of this from years ago didn't make it to my GP's. This is likely to be the cause of a lot of my pain and tiredness so am now on a super high dose of vitamin D tablets and back to see the specialist in 3 months. I am also going to give it time to see if getting vit D back into me will help with my hand or if it is just CP. I defo need the op due to muscle waste and slight loss of feeling but I need to hold off as long as poss  as I am self employed and will get no sick pay plus am a taxi service for my children!!

Did you ever manage to get some nerve conduction studies done? The Vitamin D deficiency is interesting. It hasn't, to my knowledge at least, been clearly linked to CTS but it is being increasingly suggested as a cause of all sort of vague symptoms I think. Jeremy Bland

Hi Jeremy

No I haven't been offered the test but before I will be asking for it before proceeding. Although the fact that I have some loss of sensation, muscle waste and tendon problems looks likely I will need it soon.

For now I hope the high dose of Vit D will reduce some overal pain and aches as the past month my pain levels have increased a great deal. Once that hopefully flares down I will probably have to face the surgery and loss of income.

It will definitely be interesting to see how bad it looks on an objective test. I'm fairly well known for my view that no-one should have carpal tunnel surgery without getting pre-operative nerve conduction studies done. The British Society for Surgery of the Hand disagrees with me at present but the American Academy of Orthopaedic Surgeons has come round to the same view as me in their guidelines - though I had nothing to do with the development of those. Dr J Bland