Confused

janetstill
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Hi
Im feeling a bit confused at the moment and could really do with some advise. For the past 6 months or so ive been being woken up most nights, sometimes 2-3 times a night, with tingling in my little and ring fingers on both hands. It also happens when ive been led in bed reading after a while. Originally I thought it was a side effect of a drug i was taking for my epilepsy but have been off of this drug for 3 months no and things are getting worse, not better. I also get some tingling in other fingers and also pain along my thumbs, especially if ive been using them for a while.
Ive been to see my GP who said it was carpal tunnel syndrome and referred me to another GP for steroid injections. My GP said that they usually work but symptoms can often return. She said if they did return then i could have an operation done to relieve the symptoms. I had my first steroid injection 3 weeks ago and was in a lot of pain afterwards for a few days. It did settle down the pain and tingling in the fingers other the the little finger and ring finger. However, the effect only lasted a week or so. I went back to the GP who gave the injection who said i needed a second injection and to use splints at night. He then said that if that didnt work there was nothing further they can do because carpal tunnel release surgery is not available on the NHS in our area. I had the injection and its stopped the tingling in pain again but as before not in my little finger and ring finger. Im still in quite a bit of pain from the injection but it is wearing off. If it had had a significant effect on my syptoms then it would seem worth the pain but it hasn't.Im supposed to go back again and have an injection done in my other hand.
I feel very confused at the moment as the injection has not helped my main symptoms. Is it possible that these are caused by something other than carpal tunnel symdrome? I really dont want to have a third steroid injection if it isn't carpal tunnel syndrome that is causing my problem. Ive not been for any tests or seen anyone at the hospital, the diagnosis was made by the gp. I would be really grateful if anyone could offer me any help/ advise on this situation. I really cant go on being woken up in the night. My epilepsy is not under control and one of the triggers for my siezures is lack of sleep. Im having more seizures at the moment and am so tired all the time.
Thanks in advance
Lynne

jeremydpbland
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Symptoms in the little and ring fingers like that are highly suggestive not of carpal tunnel syndrome but of problems with a completely different nerve called the ulnar nerve, usually at the elbow. If the injections had some effect on symptoms in the other fingers then it may be that you have CTS as well but it sounds as though the main problem may not be in the carpal tunnel.

If you do have ulnar nerve problems at the elbow then trying to keep the elbows straight as much as possible and not leaning on them may help. If you are seeing a neurologist about your epilepsy then they should be able to tell you fairly quickly whether the right diagnosis in the arms is likely to be CTS or ulnar neuropathy (sometimes called cubital tunnel syndrome when the problem is at the elbow). You can also usually sort out the right diagnosis pretty accurately with nerve conduction studies but that may or may not be easy to arrange in your area.

I hope there is not an area of the country where carpal tunnel surgery is completely unavailable on the NHS as that would be medically indefensible. Many areas do restrict surgery to patients who have tried splints and injection and either relapsed or not responded in the first place but that is rather different to a complete ban on surgery. Where are you? JB

janetstill
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Hi
Thank you so much for getting back to me so quickly. I had noticed that leaning on my elbows made the problem worse so I think you're right about it being a problem with the ulnar nerve. I very rarely see the neurologist about my epilepsy but regularly see my epilepsy nurse so I think i'll discuss the problems with her. Hopefully she will be able to speak to the neurologist about it as it is causing problems with my epilepsy. Stupidly I hadn't thought about asking them for help!
Im in York. The GP I saw last week said that if the injections and splinting didnt work then he could refer my case to a panel but that 99% of the time they say no anyway so there's not much point. He did say he could offer me something to help me sleep but then when he looked it up i couldnt take it in conjunction with the drugs im on for my epilepsy. I contacted the PCT today and they said that they consider surgery for carpal tunnel syndrome to be an ineffective procedure! I feel like banging my head against a wall! I'll try asking the GP about ulnar nerve problems first and if i get no joy contact the epilepsy nurse.
Thanks for all your advice, I feel a lot happier for reading it.
Lynne

jeremydpbland
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The PCT's response, if that is really what they said is, frankly, barking mad - unless they have redefined the meaning of the word 'ineffective' recently. Refer them to the wholly authoritative Cochrane reviews of treatment for CTS which absolutely demonstrate with a degree of certainty which is about as good as you can ever get for a medical treatment that surgery for CTS is 'effective' - that is a little different from being 100% predictably curative and there are sometimes problems with carpal tunnel surgery. One could also argue about the relative cost-effectiveness of surgical treatment as opposed to the non-surgical options but to claim that carpal tunnel decompression is ineffective is simply denying reality.

Having said that, and rather luckily in the circumstances, it sounds as though your main problem may not be CTS anyway so the fact that York PCT do not know what they are talking about does not matter too much. Sadly the ulnar nerve problem at the elbow is harder to treat than CTS but that should not stop one trying. JB

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