Neuropathy pain and hoping for a spinal cord simulator

[midashomes64]

Hi there good evening to everyone, can anyone advise me on how and where I can find a hospital in the UK which would hopefully give me a trial for a spinal cord stimulator on the nhs, in so much pain for over a year now, has totally affected my life in every way possible, I was so independent, now I have to rely on benefits and family for so much support

[Bananas5]

Referral address

Pain Management Centre,

Ground floor, Gassiot House,

St Thomas’ Hospital,

Westminster Bridge Road,

London SE1 7EH

Email: [e-mail]

Referral process

All referrals must be made by a healthcare professional by post or email using the details provided above.

All referrals are screened by a consultant doctor to determine suitability. Your referring clinician will be informed if your referral is rejected for any reason.

Once accepted, all referrals will be added to a waiting list and you will be contacted when there is an available appointment.

[midashomes64 in reply to Bananas5]

Thanks so much for such a quick reply, can i ask have you had the operation done and how did you find it, I live in the Grimsby area, would they consider me, with me being not in the London area

[Bananas5 in reply to midashomes64]

No I haven't had the procedure but many members have including a close friend of mine. Mixed results..

St Tommy's takes people from all over the country. It has an excellent pain management clinic too.

Have you had any referral to a pain clinic?

Either speak with your GP or contact hospital direct. They will tell you what you need to do.

x

[midashomes64 in reply to Bananas5]

Thanks again, do they do it on the nhs on a regular basis,

[Bananas5 in reply to midashomes64]

Oh yes...all NHS!!

And yes done regularly although how often that would depend on waiting list

x

[midashomes64 in reply to Bananas5]

Thanks again, I'm just so desperate to get sorted out and have my life back again, no one realise how bad this pain is, I don't want another 20 years of this anymore

[midashomes64 in reply to midashomes64]

I suppose at the end of the day it's all about finding the right doctors and hospital to help me with the pain

[Bananas5 in reply to midashomes64]

Have you ever been to a pain management clinic?

x

[midashomes64 in reply to Bananas5]

Not as yet, I'm not sure what they can do, as far as I can see all they will do for me is tell me I've got pain, tough luck and just get on with your life, I'm not one for the so called talking therapy which is what I've been told

[midashomes64 in reply to midashomes64]

Is there any way I can private message you by any chance

[Bananas5 in reply to midashomes64]

Yes. Just click on my name and it will take you to my page.

Top right I think is a box saying message. ...click on that and off you go!!!

x

[Hidden]

Hi

I'm so sorry you are in so much pain. I have pain 24/7 due to many conditions, had to take ill health retirement June 2018. I'm sorry I don't know of a hospital who does this on the NHS but I'm sure there will be someone along to help you. Take care Lynne

[Sgoodwin70]

Hi there I am so sorry..what causes your pain ? X

[midashomes64 in reply to Sgoodwin70]

Neuropathy in my feet and now going up my legs into my knees

[BadHare]

Sorry I cannot help with that though you might have success reducing your pain with B12 (try sublingual or better still injections)& increasing your folate & B vitamins in general. Vitamin D3 may also help.

Avoid eating all processed & inflammatory foods.

[Sgoodwin70]

This is not available on NHS but scrambler therapy could help you..there is a doctor in Ireland that does it and in Italy and in Florida x

[eeeee]

Northern General hospital at Sheffield have a great pain management centre.

I had a drg stimulator fitted 3years ago. Unfortunately didn't help.

I have a damaged/trapped genitofemoral nerve. Good luck.x

[midashomes64 in reply to eeeee]

So sorry to hear that, do they do the scs operation there by any chance

[eeeee in reply to midashomes64]

I think they do. Your GP should be able to find out. Good luck.x

[midashomes64 in reply to eeeee]

Thanks, I'm finding this quest a mine field to get through, there seems to be a lot of hospital do it, just hard to find the right one, I want it done on the NHS if I can find the right surgeon etc

[lupus_01]

My friend travelled from london to middlesboro a few years back as they were trialling the internal stimulator. Not sure if they are still doing trial

[midashomes64 in reply to lupus_01]

Thanks for your reply, did your friend have the operation and if so how successful was it please

[lupus_01 in reply to midashomes64]

Unfortunately it helped for a while but she finds it doesnt help as much now. She has spinal stenosis so maybe the stenosis has got worse rather than the stimulator not working as well.

[Albiebear]

I'm from Lincoln and I was referred to the Pain Management Clinic at Leeds NHS Trust who do use the Nevro HF 10 SCS. Unfortunately the trial did not work for me and I did not wish to proceed with a trial of a different SCS. Good luck with whatever you decide.

[midashomes64 in reply to Albiebear]

Thanks for that, how long did it take to get a referral to go to Leeds, sorry but I'm so desperate to get rid of the pain

[VELoce21 in reply to midashomes64]

I waited about 3 months I think.

[Albiebear in reply to midashomes64]

About 3 months as well.

[Sgoodwin70]

Another thing you could try ate supplements made in US called nerve renew which have helped people with neuropathic pain or another one that is sold in the UK but made in the US called Neuropaway which has helped people

[VELoce21]

Hi I had mine fitted in May 2019 at LGI (Leeds General Infirmary. ) I am very pleased with the results so far! Good luck

[Albiebear in reply to VELoce21]

How do you cope with the recharging every day? I would rather have trialled a device that didn’t need recharging everyday as my lifestyle couldn’t deal with that as I’m away from home often.

[Uniquenetcie in reply to Albiebear]

The ones that recharge everyday have a higher stimulation output. I thought the same thing but I care more about decreasing my pain.

[midashomes64 in reply to VELoce21]

That's good to know, thank you, I'm just hoping I might be considered for the operation, how did you go about getting the treatment, the more info I can get the better for me hopefully

[VELoce21 in reply to midashomes64]

Hi I have had a pain specialist for over 10years and he persuaded me to go for it. I had it done as a day case. I would say that I am getting used to it still. I had one that you can still have an MRI. I carry a card to say it is MRI compatible. It is a Boston Scientific one. Any questions do ask me and if I know the answer I will share it with you. I have been able to cut down on my medication. I don’t have to rely on morphine as often now. I change the programme etc.

[midashomes64 in reply to VELoce21]

Thanks, i just seem to be getting no where fast, being pushed from pillar to post and not getting anywhere at all, sorry but I'm just so desperate to get rid of all this pain, it has totally affected me in every way possible,

[midashomes64 in reply to VELoce21]

People don't understand how bad this pain can get, my feet are always so called and so numb virtually all the time now, does the scs help with this sort of pain

[midashomes64 in reply to VELoce21]

How did you get the operation sorted, I'm struggling to find my way around the nhs system and finding the right hospital etc

[midashomes64 in reply to VELoce21]

Tell me more please

[midashomes64 in reply to VELoce21]

Hi there again, sorry to bother you, how are you doing with your stimulator, I might be on the list for one hopefully some time soon

[Uniquenetcie]

Hey I'm about to schedule my scs trial. Honestly, I have no idea which device to use. Most insurance s need you to have two injections and nerve ablations on both sides of your lower back. If you really want the trial you have to say after each procedure that you had significant relief. I did but not for long. Medicare is my primary, usually it's six weeks between each procedure. Then you see a psychiatrist to make sure you understand the risks and your not mentally ill, so even if your really depressed put on a mask. Then tell them you understand the risks such as infe tion and scs not even working. Good luck

[midashomes64 in reply to Uniquenetcie]

Thanks for your reply, im just struggling with all the pain and the anguish, I so want to have this operation no matter what hoops I have to jump through, my worst problem is the cold and numbness all day long now,