Hello everyone! I know I have not been on for some time but it’s a long story!
Today visiting my neuro he mentioned he thought I would benefit from this new procedure to help control my spasms and tremors. o Deep brain stimulation it works kind of like a pacemaker attached to an implant in your brain!! It seems to mostly have been used on people with Parkinson’s, but I have been googling the effects and as I am not responding well to drug treatment sort of like a last chance saloon!!
Has anyone heard anything about this before? I have searched the site but there only seems a vague reference to it. I googled the procedure and it is very invasive but as I am left exhausted from the constant tremors I am considering it!!
Help Please!!
Hi, good to see you back!
Mmm, I have seen things on the goggle box, about Parkinson`s sufferers undergoing the op. it looks marvelous. Their shakes are so well controlled by the procedure.
If it is geuinely offered, do lots more research and talking to your neuro, yeh?
luv Polllx
Yes, l saw a programme on TV about it - l think the hospital was in Bristol. They treated a man who had come over from lreland to have this done. The difference afterwards was amazing- He had very severe Parkinsons - He was so thrilled - his wife in tears and me also in tears. l think it was on BBC - you might be able to trace it. But to see him get up and walk ‘normally’ showed how clever this device is. l think once implanted they ‘tune it in’'.
l certainly hope if you have it done it will give you lots of improvements.
F.
Thanks Poll, I have done as much as I can so far and will probably have to go to Southampton for it to be done but… I am a little concerned but the tremors control my life!!
We will see how it goes x
Last year as part of a trial I had Spinal Cord Stimulation to help the neuropathic pain in my feet.The implant was performed twice, as first time there was a fault with the ‘wire’ and second time it had no beneficial effects.
DBS was on the table as the SCS had failed.The Neurosurgeon was willing to perform the op at Walton Neuro in Liverpool,but when the pros and cons were weighed up I declined. The ‘stuff’ that would have been implanted would preclude me from having the Liberation proceedure,and my neuro had said 8 months before that Walton would be looking into it.He lied and I’m in more pain than ever and need to get to Poland
The decision shouldn’t be taken lightly,but if there are no other options,
Good luck, Wb
Thanks everyone I know it is a huge decision which is why I am trying to get as much info as possible!
I don’t have any personal experience of DBS, but I have read a wee bit about it and I think your neuro should be giving you full info about the chances of it making a difference before you decide. The reason I say this is that research is pretty mixed on it. Some studies say that some MSers have great results, but others say that improvements are short-lived and/or that only the minority of MSers benefit. I have no idea if these studies refer to exactly the same procedure that you might have done, but I would urge you to ask some very direct questions of your neuro. What are the odds of it getting rid of your tremor? What reduction in tremor can you expect realistically? What are the potential downsides? How many times has the surgeon done this procedure and what has been the outcome in his cases?
Please don’t accept vague answers: get the numbers. Only then can you properly weigh up the pros and cons.
Karen x
Like Wb and Karen have said, think long and hard before you say yes. You must get good estimates of the probable improvements, and the possible adverse effects and then make your own mind up. I lifted the following quote from a paper in the journal Brain on DBS for Parkinsons.
“Adverse events (AEs) included cognitive decline, speech difficulty, instability, gait disorders and depression. These were more common in patients treated with DBS of the STN. No patient abandoned treatment as a result of these side effects.”
Now I do not know which is worse - the Parkinsons tremor, or the reported AEs. My interest is that my wife has Parkinsons, but has not yet got to the tremor stage. The good thing about the particular study, is that it was looking at the outcomes over several years.
You can find the abstract of the paper here:
and the full text is free.
Geoff
I have not agreed to anything yet!! It was only suggested yesterday as a possible course of action, I would NEVER agree to have such major surgery without having all the facts!!
I posted this yesterday as I had never heard of this being offered to an MS patient, and was interested to hear if others were being offered it. My tremors are severe and affect my quality of life, I have tried so many different drug treatments with no joy. Please do not think I have just said yes to it without going through a huge amount of research.
Also the doctors involved will have to go to the PCT exceptions comittee again! As it is not usually offered to us!!
J x
My only observation is that through my experience of people with tremors it is difficult for people who don’t suffer them to understand the exhaustive result of them.
I was always grateful that I had ms and not Parkinsons,alot of that being based on the daily endurance of tremors.I had no idea it was a possibility to that extent on ms.
I hope you can find out all you need to make that decision and that if you do have it done I wish you all the luck in the world.
Pip
Sorry if I gave you the wrong impression. I was trying to say that the neuro may not be totally forthcoming with the facts and that you might have to push hard to get the actual figures. Also, I think that the surgery has a better effect in Parkinson’s than in MS so don’t let them quote you Parkinson’s data.
(I looked into this a while ago because my dad has Parkinson’s. I veered into the MS literature for obvious reasons.)
I really hope that your local hospital gets great results - so you can get them too!
Karen x
I am exhausted by all the constant motion even while resting! I am in need of something to help so I am not constantly drugged up!!
I think I will have to go to Southampton as it is NICE!! My bottom!! Wish it could be done in Salisbury I won’t have any visitors in Southampton!!
Any ways early days yet but thanks everyone!