Hang in there Nathan. I Really do understand what you are going through. Some people have good results from nerve blocks-is that on offer? Others on the forum may have had other procedures and will post either here or on a PM.
Come back on the foum tomorrow andLet us know how you get on with your neuro.
I had an occipital nerve stimulator implant [ONSI] done in 2008. This is where a battery pack is implanted in the abdomen, wires are tunnelled up through the body under the collarbone and up the back of the neck to the occipiatl nerves which are external to the skull, but under the skin at the back of the head. Contacts are placed on various points on these nerves and the battery pack emits a pulse which helps to bring down the pain and to reduce the number of attacks. At the time I had it done I was getting 1 to 5 attacks a day. I am now on daily attacks with an occasional few days every so often where I am p ainfree. A vast improvement on pre-op! I still use oxygen and Imigran injections.
There is a device which is being trialled at St Thomas hospital, an SPG implant which is tiny and is implanted in the cheek and does the same thing as the ONS but seemingly so far with much better results. There is also a handheld device called Gammacore which is available on the NHS. All these treatments though are usually only reached after you have worked your way through the usual preventives and either you get no relief or you have horrendous side effects which mean you cannot take them. Talk to you neuro next time you see him/her.
thanks for this. I met with Prof goasby yesterday after requesting to be refered to him from my Nuro in newcastle, he has agreed to put steps in place for me to get the SPG done, I tried the gamma core last year with no affect so hopefully this will be more successful. I've lost count of the number of different medications I've tried like yourself by the sounds of it. Currently I'm having 5+ attacks a day which is really getting me down as I literally can't do anything.
Hearing that the similar surgery has reduced your attacks gives me a light at the end of the tunnel, I just hope I don't have to wait too long.
Just to be clear the device I had implanted was nothing to do with Gammacore. ONSI is a completely different device. Good news that Professor Goadsby is getting you sorted out to have the SPG. Does a similar thing to my ONS, but much smaller and less invasive.
Hang in there Nathan. I Really do understand what you are going through. Some people have good results from nerve blocks-is that on offer? Others on the forum may have had other procedures and will post either here or on a PM.
Come back on the foum tomorrow andLet us know how you get on with your neuro.
MissKittyB.
Hi Nathan
I had an occipital nerve stimulator implant [ONSI] done in 2008. This is where a battery pack is implanted in the abdomen, wires are tunnelled up through the body under the collarbone and up the back of the neck to the occipiatl nerves which are external to the skull, but under the skin at the back of the head. Contacts are placed on various points on these nerves and the battery pack emits a pulse which helps to bring down the pain and to reduce the number of attacks. At the time I had it done I was getting 1 to 5 attacks a day. I am now on daily attacks with an occasional few days every so often where I am p ainfree. A vast improvement on pre-op! I still use oxygen and Imigran injections.
There is a device which is being trialled at St Thomas hospital, an SPG implant which is tiny and is implanted in the cheek and does the same thing as the ONS but seemingly so far with much better results. There is also a handheld device called Gammacore which is available on the NHS. All these treatments though are usually only reached after you have worked your way through the usual preventives and either you get no relief or you have horrendous side effects which mean you cannot take them. Talk to you neuro next time you see him/her.
Val
Hi Val
thanks for this. I met with Prof goasby yesterday after requesting to be refered to him from my Nuro in newcastle, he has agreed to put steps in place for me to get the SPG done, I tried the gamma core last year with no affect so hopefully this will be more successful. I've lost count of the number of different medications I've tried like yourself by the sounds of it. Currently I'm having 5+ attacks a day which is really getting me down as I literally can't do anything.
Hearing that the similar surgery has reduced your attacks gives me a light at the end of the tunnel, I just hope I don't have to wait too long.
thanks
nathan
Nathan,
Just to be clear the device I had implanted was nothing to do with Gammacore. ONSI is a completely different device. Good news that Professor Goadsby is getting you sorted out to have the SPG. Does a similar thing to my ONS, but much smaller and less invasive.
Good luck!
Val.