CRPS

[vivikin]

i have crps which was caused originally by a cyst on my spinal cord and has given me peripheral pain in both my legs i have had this for over 8 years now and it has been life changing, i have been offered a spinal cord stimulator trial and wanted to know if anyone has had this done and if so what is their experience of it as i am very unsure about the whole thing

[Hidden]

What does crps stand for?

[grace111 in reply to Hidden]

Complex regional pain syndrome

[morphalot]

Hi - yes I have a spinal cord stimulator in place -what exactly do you want to know about it. I'm happy to tell you everything but there's so much it takes ages for me write everything down!

[vivikin in reply to morphalot]

Hello morphalot thank you for helping so here goes firstly have you had the one that tingles or as i have been offered a burst stimulator which i understand is high frequency that i have been told you don't feel anything also i have been told that if the trial works then i will have up to 6 months recovery where i cant bend stretch or twist in case it moves and i am worried about this as i live alone, i do have some more questions but don't want to overload you so if ok with you i will take it one bit at a time but just another thought at the moment do you recommend it?

kind regards Viv

[vivikin in reply to morphalot]

Hi Morphalot sorry to bother you but i wondered if you had received my questions on the stimulator as i haven't been on here for about four years and wasn't sure if i had done it correctly, just in case you didn't i asked would you recommend it or not and why also during the recovery which i have been told is up to six months, that you can't bend stretch or twist in case it moves i would find this very difficult as i live alone and have two indoor cats to take care of, so i would be very interested to hear your views on this.

kind regards Viv

[morphalot in reply to vivikin]

Hi - I have the implant that you can't feel buzzing or anything. It helped s lot of people in my group as well as me. I was never told anything about the 6 months of no twisting, bending etc. Who told you that - was it your GP?

[vivikin in reply to morphalot]

Hi that sounds like the one i have been offered, it was the consultant who may be doing the operation he said that until scar tissue grows around it you have to be really careful so that the lead doesn't move he made it sound like i could do nothing except walking, so i take it you would recommend it then? may i ask where you had it done and if you had to attend a two week course? thank you again for your help

kind regards

Viv

[morphalot in reply to vivikin]

Hi I had it done at st Thomas hospital in London. I did the 2 week course before the implant but this has now been increased to 3 weeks

[vivikin in reply to morphalot]

Hi was the course before the trial?

[morphalot in reply to vivikin]

Hi - yes it was. I can't remember how long I had to wait between the course and the treatment afraid. Everybody in my group saw and felt the benefits of the course - makes and females. Pl

[vivikin in reply to morphalot]

Hi thank you for all your help i really appreciate it x

[morphalot]

Hi - it's absolutely no problem. Where are you having it done? Different hospitals may have their own procedures of course but I can only tell you about mine . I guess you know all about the actual implant but if you have any more questions don't be scared to ask them. I would be lying on the sofa if I wasn't doing this! X

[vivikin]

bless you that is so kind, at the moment i don't know what is happening i was lucky enough to have private insurance who have paid for a lot of different procedures over the last eight years and i have was just referred to a consultant to have this done and my insurance have said they will pay for the op and for two months of aftercare but won't pay for anything more to do with it if there are any problems after that ie the lead moving battery problem and so on, which is quite fair as it is part of the policy that they have the option to do this if it is for CRPS so i asked my GP if i went ahead would the NHS cover it after that and he went to whoever makes these decisions and the answer was no and that i could be referred to the pain clinic and then onwards to have it all done on the NHS which seems ludicrous to me that i would do everything i have already done again and have this done by and paid for by the NHS and they say they are in crisis, unbelievable, what a waste of money when my insurance have offered to pay for it, so im at a bit of loss to even go ahead and start all over again.

kind regards Vivien

[Coradelphine]

Hi there sorry to read about you pain. I had the same thing but I was offered an operation to remove the cyst from my spine, most advice was not to have it but I went ahead and had it done under epidural - voila! The pain went immediately and has not returned. Perhaps you should speak to your doctor about this if you haven’t already.

Good luck and I hope you find someone to help

Xx

[vivikin in reply to Coradelphine]

Hi thanks, mine all started with a cyst on my spine but for over a year it got missed on scans so by the time i had it removed it had caused nerve damage and now 8 years on here i am in pain on loads of medication and not knowing whether it is the right thing to do to have the spinal cord stimulator, have you had this operation?

Kind Regards xx

[morphalot]

Hi vivikin - by the sound of it you'd be better doing the whole thing on the NHS, although I don't think they'd actually be paying for it I think the people who are developing the neuro-stimulator would be paying for it. I might be wrong of course. Anyway do you have any more questions I can help you with? X

[vivikin]

Hi morphalot- that makes sense actually so you may well be right, its such a hard decision to make, i have pain in both of my legs most of the time but i am able to get on with day to day things although i rarely go out and as i rely mostly on people visiting me as i live alone so have to drive myself and i can't drive after midday because of my medication it restricts what i can or can't do and i don't know what your situation was and now is, but i am worried if it makes me worse and "better the devil you know " as they say, do you mind telling me a bit about yourself and how it has improved your life? i would really appreciate it, and any other information you have that might help me make a decision one way or the other. thank you for all your help so far x

[morphalot]

Hi vivikin - I had written a lengthy reply to this then it all got lost! So this one will be slightly less detailed. I worked as a practice manager in a GP surgery, and was shoveling painkillers into my body. Unfortunately, despite the input of of health, health and safety people etc, I was diagnosed in 2012 as I could no longer manage the role. I tried to fight the decision but when you're in pain you just can't take any further hassle, as I'm sure you know. I had both my hips replaced, decompression surgery, a fusion of L3 and L4. Nothing worked, so I was referred to the pain management consultant. He tried steroid injections etc but eventually gave up and referred me for neuromodulator. I did the, 2 week course then had the trial modulator. This worked fantastically so the inserted permanent one. This didn't work as well but it still reduced my pain to a level that enabled me to reduce my painkillers. However, it only works on the area it has been inserted to help. Because it's set next to the nerve actually causing the pain it can only help that part. Unfortunately I have developed generalised arthritis which the modulator does not treat. However it's better to be almost rid of that pain when trying to deal with pain in the rest of my body. Nobody can tell you whether or not to have the implant - but you have the temporary implant which helps you to make the decision. I can do things now that I was unable to do previously, such as walking with my husband, giving us back some of our ordinary life - something we had been unable to do previously.. The two week course was really useful - there is a lot of information and practical experience that helps even without the implant. The implant should help you at least stop some of your medication and be able to walk further for example. If the temp one doesn't work you can have it removed and of course this will help your decision for the full implant. Hope this helps! X

[vivikin]

Hi morphalot i am sorry to hear how this has impacted your life, pain is relentless isn't it and because you can't see it nobody really understands how ill it makes you i really appreciate your answer and yes i guess i have to now make a decision so watch this space

kindest regards Vivien

[Baseball1234]

Dear Vivikin,

I was diagnosed with CRPS following spine surgery. Can you tell me how your CRPS has progressed? Mine started with L arm (paralysis requiring cervical spine surgery), spread to lower leg, and now it has taken over my jaw, face, eyes and head. Do you have a Rec for a good CRPS doc? Any treatments help?

[vivikin in reply to Baseball1234]

Hi Baseball, so mine started 10 years ago with pain and discolouring in my left foot which eventually went up my leg and then after some time into my right leg after more than a year it was discovered that i had a cyst on my spinal cord that had been missed by back specialists on two MRI scans the doctor at the pain clinic discovered this and i had to have back surgery but i was still left with the pain which is now being caused by nerve damage i have had various treatments over the years ie Ketamine transfusions and Lidocaine transfusions both helped but only for a short amount of time, i take 8 Co-Codamol 600 mg Pregablin and 75 mg Amitriptyline a day which helps a fair amount and two years ago i had a spinal cord stimulator fitted but for me i don't think it made any difference to my pain levels but some people have had positive results, are you in the UK? if so i would definitely recommend my pain clinic doctor but the fact your name is Baseball and your post being in the middle of night makes me think not but let me know and if you are i will let you know his name and where he works.

Kind Regards

[Baseball1234]

Dear Vivikin

I am so glad that you found a good medical specialist. You are right, I do not live in the UK. And the number of CRPS specialists here in the states are limited!

I am interested in your prognosis as your cause of CRPS Is similar to mine. My CRPS was caused by a spinal fusion of C4 5 6 following an injury to the spinal cord causing paralysis of arms. It appears the nerves were permanently damaged either by being crushed for months or by the surgery itself.

Interesting that you mentioned ketamine infusions, I have found a small amount of relief from a lotion with ketamine lidocaine and DMSO. It is a lot cheaper than the infusion shots, and can be used daily with minimal side effects. Every little bit helps.

With this era of video conferencing with doctors I wouldn’t mind knowing the contact information for your CRPS specialist. Maybe he can teach the doctors here a thing or two.

Stay strong over there! We’re all in this together ☺️

[vivikin in reply to Baseball1234]

Hi I hope you are well, my pain specialist is Dr Chris Seifert he works privately at The Hampshire Clinic his secretary's phone number is 01256 377741, look him up there is a bit about him on the internet he studied in Germany originally and the lucky for us he came to England i think he is amazing and kind with it. My Prognosis is poor it won't get any better than it is now and unfortunately as i have had explained by him in simple terms is your brain memorises pain and that is why i take the mix of pain relief that i do is to try to block the signals to my brain that tell me i'm in pain and in the main they work quite well for me but i have to pace myself with what i do and i have good days and bad but i am still quite a lot better than i was. Other than that unless something new comes along there is nothing else i can have done because it is nerve damage. I hope some of this helps please let me know if you do manage to speak to him and how you get on. And if there is anything else i can tell you i will, just as a matter of interest have they mentioned a Spinal cord stimulator to you at all?

Kind Regards

Vivikin

[vivikin in reply to vivikin]

Sorry i meant to add stay safe over your side of the ocean its a very strange world we find ourselves in at the moment, take care.