jayne
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Posts: 6
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Post by jayne on Jan 15, 2014 1:52:24 GMT -7
Hi,
I have just joined this forum as I find myself in a lot of distress for the past 6 months with severe lower left leg pain, severe cramping, twitching and tingling which came on after an injury I acquired.
I am not an amputee but I was hoping to get some helpful advice about my situation while I am waiting to see a specialist about this problem (won't be until April). The pain is so severe I actually wish for it to be amputated and a recent nerve conduction test showed nerve damage in the affected leg. However, the doctors have also raised the possibility that it could actually be from my back! I do not have any back pain so I found this odd and was convinced it was from my leg.
An MRI I had on the leg in September showed a muscle tear and some edema. The muscle twitches involuntarily and the tingling to my foot is unbearable. I have been to the emergency room twice and I am not coping at all with the pain and feel I am on the verge of disaster. I have had physiotherapy, osteopathy and tried numerous medications, none of which touch the pain.
Basically my question is, can amputation stop nerve pain? I realise that phantom pain can happen.
Thank you for reading and looking forward to your replies. Jayne
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Post by stonecutter on Jan 15, 2014 8:04:06 GMT -7
Hi Jayne - welcome to these forums... Sorry to hear you're having these issues.
First off - let me be clear that I'm not a medical professional at all... I'm just an amputee who found himself in this situation through an industrial accident.
What I can tell you, though is that I do know that problems with the main nerve as they stem off your spine that serve your appendages can present as pain in your appendages. There is a gentleman in my office who broke his neck about 7 years ago. He recovered with some limited mobility in his neck after spending a few weeks in a halo. But now he has found that with the injury the body is responding with bone spurs and growths to even unaffected vertebrae which is effectively slowly pinching off the main nerve stems as they exit the spinal column. This is presenting as pain and weakness in his hands and fingers, even though the problem is nowhere near his hands...
This example is a little more extreme, as I don't know the nature of your original injury AND as I said - I'm not a medical professional at all. I guess what I'm saying is that if you are considering amputation - I'd recommend that a full investigation of what's causing your issues before making any invasive interventions like that.
I hope you're having a good day.
Trevor
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Post by allenuk on Jan 15, 2014 8:15:40 GMT -7
Jayne.
Sorry to hear your story.
The problem is, as you've already worked out, that if it IS your back that is damaged, then amputating your leg and foot might not cure it. The pain might just come out somewhere else.
I assume you're in the US, which probably makes 2nd opinions more difficult (i.e. expensive) than here in England, but that's what I think you need. A specialist in backs and legs and nerve pain, who can try and pin down the source. It might well be the case that it IS your leg/foot that's doing the damage, but you really have to find out before pursuing amputation.
Anyway, your essential question, can amputation get rid of pain? The answer is yes. Most of the 'elective' amputees on this board were in some degree of pain pre-operation, and that's why we went for it. And most of us are free from pain now, or at least free-er. The problem of phantom pain is very real, however, and you MUST take precautions, otherwise you end up with the same sort of pain but nothing to rub, which can drive some people mad.
Precautions include discussing the amputation with (a) interested parties like us, and (b) your anaesthetist. Anecdotally, but lately being accepted as mainstream thinking, it seems that if you 'fool' your brain into thinking your leg doesn't hurt (at the point of the amputation), you have a MUCH better chance of avoiding eventual phantom pains. You do this by going on to an epidural morphine drip at least the day before the operation, to deaden and calm the affected area. Having a local (regional?) anaesthetic rather than a general one can also help, if you can stand the noise of the operating theatre.
Following this sort of procedure won't guarantee freedom from phantoms, but it seems to help many people (it did me - 8 years on and no phantoms, thank the lord).
But you've got to find a way of seeing that nerve specialist, otherwise this all could be academic.
Please let us know how you're doing and what's going on with you - our collective experience might be of help to you.
Good luck.
Allen (London).
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jayne
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Post by jayne on Jan 15, 2014 17:36:48 GMT -7
Thank you Trevor and Allen for your replies.
I understand what you are both saying and it is what I thought. The big question for me is to find out if it is my back or leg. I am really hoping it is my leg and if it is and there is no treatment available I would want it removed if it meant putting up with this pain for much longer.
I am at least pleased to hear that amputation has resolved a lot of members nerve pain. It gives me hope as this pain is giving me some very dark thoughts. Also I am located in Australia.
Thanks again Jayne
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Post by stonecutter on Jan 16, 2014 8:25:57 GMT -7
I hope you find the answers you seek soon. Please keep us posted.
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jayne
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Post by jayne on Jan 17, 2014 13:53:37 GMT -7
Thanks I hope so too. I saw my GP again yesterday and he referred me to the pain management centre at the local hospital. The twitching and cramping and pain is getting worse and I think he just does not know what to do with me. I just have to wait at this stage until specialist appointment in April if I can.
I have had a CT scan done of the lumbar spine recently (November 2013) which just said the following comments:
"AT all levels the discs are intact. There is a minimal flattening of the posterior aspect of the disc at L4/5 level without neural compromise.
There are OA changes in the facet joints from L3 downwards."
This gives me hope that the nerve damage is just based in the lower leg and not from the back though I suppose only an MRI can properly confirm this.
I know you can't give medical advice but I just thought I would share this with you as at this stage I am desperate. Even knowing I could get rid of the leg gives me hope to be out of this pain.
Thanks for reading again.
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Post by snarfler on Jan 17, 2014 20:14:28 GMT -7
Jayne, Having had similar problems for years, I can tell you that even the best MRI can be inconclusive. Based on what you've said, I suspect what you feel in your legs and feet is a symptom of the problem and not the cause. There is an easy way to make this determination through the use of a TENS machine. Your nervous system operates on electrical current. By applying Transcutaneous Electrical Nerve Stimulation, we can effect a disturbance in this flow of current which will reduce your pain in the lower extremities if the problem is in your back. If it doesn't effect your pain then it would be coming from the legs. I'm sorry. I wish I had more to offer but even what little I know of it is very dated. Goodluck and please keep in touch
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Post by allenuk on Jan 18, 2014 9:14:20 GMT -7
Jayne: re. the medical advice - I wish we could. It's not that we're constitutionally bound not to offer advice, it's just our collective ignorance. We DO have a prosthetist on board, who looks in occasionally, but I doubt if he'd be able to offer much in the way of diagnosis from the US to Oz.
Out of interest, did you have any trauma with back or leg prior to these attacks of pain? Any injuries, bashes, falls, etc.?
The TENS machines are used quite widely in the UK, by physiotherapists and doctors, so what Snarfier says might be worth pursuing. Have you tried going out of the mainstream medical area? I'm thinking of osteopathy, chiropractice, etc. I KNOW these aren't specifically 'nerve' specialists, but they might be able to offer something, or at least point you in a better direction. What is health provision like in Australia? Even in the UK it can get difficult these days (too much money diverted to the Bankers), so it must be harder without a 'free' health service.
A.
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jayne
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Post by jayne on Jan 18, 2014 19:55:18 GMT -7
I did have trauma which led to the pain. I was doing a training course in learning to ride a motorbike and was asked to push another rider on a bike so they could learn to turn corners I was pushing doing this and running at the same time when the calf went into the most painful spasming cramp I have ever felt. I had to stop the course for myself and just barely could walk out of the place.
I had an MRI as it was not improving which showed a muscle tear and swelling. Still was not getting better so I had a nerve test which showed damage.
I have had physiotherapy and osteopath treatment. Due to finances I could not keep it up. The physio did the TENS treatment and it offered no relief.
I believe I had compartment syndrome and it is just getting worse. No doctors will even listen when I mention this and I am at my wits end about what to do.
It was beyond just muscle pain - the whole leg was tingling and pressure sensations.
Thanks for the advice so far and help. I do appreciate it.
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Post by allenuk on Jan 19, 2014 9:33:27 GMT -7
Getting to sound more and more like leg/ankle rather than back.
Would it be very difficult to find a leg surgeon who already specialises in amputations? Partly because of his/her knowledge of similar problems to yours, partly because they will take it seriously - they tend to see amputation as just another possibility, rather than a failure of medicine, which is how many orthodox doctors seem to regard it.
I know how hard it must be to drag yourself to yet another appointment (apart from the expense) but I think it might be a way forward. And you know that you've got to be pretty certain before pushing to have your leg cut off.
Amputees have problems too, of course, although constant debilitating pain is thankfully not usually one of them.
Allen.
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jayne
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Post by jayne on Jan 20, 2014 17:33:05 GMT -7
Thanks for your opinion, Allen. I also think it is more based in the leg than back.
I really don't know how I would go about finding a leg surgeon who specialises in amputations. I have an appointment to see an orthopaedic surgeon in April so my only hope is this specialist. I just need to try to convince him of how much this is affecting my quality of life without becoming emotion and upset talking about it, which I tend to do.
I can only imagine that amputees have issues that may be ongoing but as you say, hopefully chronic pain is not one of them.
Please wish me luck with my specialist in April.
Cheers Jayne
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Post by allenuk on Jan 22, 2014 3:24:38 GMT -7
I wish you all the luck there is, Jayne. The orthopaedic surgeon should certainly be an expert in this field, and as such will be used to people in chronic pain asking for help, maybe even crying about it.
And you're right about amputees and problems; ours tend to be 'how can I do this', 'how can I wear that' - fairly straightforward and practical. Living with constant pain is not so easily addressed.
Good luck again.
A
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jayne
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Post by jayne on Feb 15, 2014 13:59:18 GMT -7
Thanks a lot Allen for your reply on this.
The pain for me is actually getting worse for this each day and I am on a waiting list to see an orthopaedic doctor in April even though it is not bone and a nerve/muscle issue.
I am interested to know if you or anyone knows of anyone successfully having an amputation from nerve/muscle damage type disease (possibly RSD though not sure). I would very much like to hear if this has helped otherwise I really don't know what to do.
It is the type of pain that is just sending me crazy.
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Post by allenuk on Feb 16, 2014 6:03:33 GMT -7
Jayne: sorry you're in such a position. Have you tried other amputee sites? This one is very relaxed, which is good, but the flip-side is that sometimes urgent questions take longer to answer. Two sites which have always seemed busier (with more through traffic) are: www.heathermills.eu/forum/index.php?act=idxwww.amputee-center.com/forum.htmlNo, your problem doesn't fall neatly into the usual categories (i.e. broken ankle, badly healed, continual pain, etc) but it is close enough for the orthos to know what you're going through. Try the other sites - there are more if you Google, and there might even be some which are Oz-based which could be useful - and I hope you get some helpful response. Good luck, again. Allen.
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Post by snarfler on Feb 19, 2014 20:57:32 GMT -7
Allen, The Amputee Treatment center forum has been closed to new registration for a very long time. I haven't been able to get in with my old username or password. If you can still access the site, would you please let the administrators know.
Meanwhile Mz. Mills seems to be more of a chat room. I doubt one could expect practical advise.
Very good of you to suggest
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Post by allenuk on Feb 20, 2014 5:42:57 GMT -7
Jayne/Snarfier. The Amputee Treatment Center board is open, up and running. I had to retrieve my password (hadn't logged in for years), but it's still going strong. Worth a go, certainly. Snarfier: send me a Private Message with what you want me to pass on to the ATC if you still can't get on to it, and I'll send them an email on your behalf, if that's the best way. Jayne: yes, Snarfier is right about the Heather Mills board, it can get a bit like a chatroom, but there are many serious people there as well, and you might strike lucky, so still worth trying. Googling 'amputee discussion boards australia' throws up several possibilities, one at random being: www.healthboards.com/boards/amputation-prosthetic/768542-how-do-i-get-over-my-below-knee-amputation.htmlBit advert-laden for my taste, but again, it's worth spreading your net as wide as poss, just in case you can find some better (more Oz-specific) advice. Allen.
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