Spinal cord stimulation

[clairey1]

Hi, I need advice on who to contact in the nhs to be put forward for spinal cord stimulation.

I am not a confident person and am worried I would be turned down and not have the knowledge to back myself up with knowledge and facts to show I should be considered.

I don't know anyone who has had this done so don't know where to turn

Any help r advice would be really appreciated.

I am fed up living on pain patches, pain killers and sleeping tablets.

Thanks

[Hidden]

Hello

You will need too contact your GP, and if treatment i required an approach will be made to a specialist and it will be at that level a decision for treatment will be made

Are you a British Citizen, if not you may need private treatment, and you may need to arrange a private doctor appointment. The same process will be followed and possible costs may be asked for

BOB

[babeofnewcastle]

Hi

I was recommended for my spinal cord stimulator by my pain consultant, but I think it is a bit dependent on where you live. I was lucky as I live in the Midlands and my consultant Professor Raphael was involved in the initial development of the stimulators. He works out of Russell Hall hospital in Birmingham. I should warn you that there is no guarantee how well the stimulator will work, you can't wear it all the time as the sensation it develops ends up being as painful as the illness and you can't wear it when you are asleep or driving.

I've had my stimulator in almost 3 years now and it relieves about 40%ish of my pain, which is on the lower end of the spectrum, some people feel as much as 70% relief. I still think it was worth the wait, usually about 2 years and the week in hospital and the scars and everything else because having that little bit of relief has let me work for another 3 years and does make my life better. However I still live on pain patches and painkillers and sleeping tablets! I would suggest you look the Prof up and try and see him, which may mean a private appointment,but he is brilliant and if he can't fit you in he can direct you to the other Dr's in the country that do this operation. In all honesty I probably could have had my stimulator fitted quicker than I did, but the other Dr's do these as a sideline, they are pretty much the only thing Prof Raphael does and has done since the 1980's! The other place to look is Boston Scientific as they are the implants that most Dr's use and there website is pretty good, it even has a video of an operation to fit one of these taking place!

Anyway I hope this has helped a bit and given you a few ideas.

Love Loux

[Hidden]

They still do these here in Southampton, and the only way to get recommended for one , is through the Pain Clinic Consultant or privately,( but Lord alone knows what that would cost) my best friend has one and hers relieves about 40% of her pain, which makes it manageable SOME days, it is very hit and miss, every day can be different, but to have any relief is such a positive point to start a day, if she isn't good one day she always says " Tomorrow is a different day" So try not to expect miracles, if you get a referral and tell them you expect to have no pain after it is turned on, you will likely be refused. You must be realistic. I wish you luck in your quest.

[Susan1942]

I had a referral from the Pain Clinic I was referred to a Neuro Surgeon and had my implant in 1991 so 24 years I had a fixed electrode I have got about 50% pain relief but still require medication Contrary to what a former poster said I do sleep with my implant switched on Initially I was not able to use it at night as the stimulation is much stronger depending how close the the electrode is to the spinal cord ie lying on your back or turning over at night Now I don't have this problem and if I switched it off my pain control would be poorer I probably waited about 2-3 months to be assessed and a further best part of a year for the implant I have had several new batteries over the years lasting in varying times The longest was 8years and the shortest was not much over a year As time has gone on there are developed they tend to last a bit longer My current on I have had for about 4 years and it is tested annually and this one has only used abuot 25% depleted so I have high hopes for a longer period When mine was initially inserted it was not quite in the right place A week after this my Consultant moved it by 1mm and that just hit the spot I have no regrets in having it as I do have better pain control while not perfect it is better than previously

My answer to your question would probably get your GP to refer you to either a Pain Clinic and if they assess you for consideration for the implant I had mine done in Scotland The origional Neuro Surgeon a fantastic man has sadly died The Consultant who took over my care moved to Liverpool They do a lot of pain research and it in my opinion be one of the best places to be referred to The costing for mine came from the Health Board where I was living at the time They at that time applied for the funding but this was not a problem if the Consultant considers that you would benifit from it Good Luck Sue

[clairey1]

Many thanks for all your help, I live in Hampshire so the biggest hospital would probably be Southampton. I have also just applied to join a private health scheme through my employer so I will have more of a chance of being listened to.

[badbackjonny]

I had one put in at the Walton Centre at Aintree near Liverpool. They are the dogs danglies there. They have amazing staff and top notch equipment. It's the British centre of excellence for neurological implants. I recommend getting a referral for Dr Ganti there. He is the head pain specialist who decides if you get one. And he's a really funny/nice bloke.

[Susan1942]

I would agree that Liverpool is one of the best places to go They have been doing pain research for many many years and often they will recommend treatments that might be suitable for individuals good luck Sue