Originally Posted by frogga

Heya

I'm Rosie, 21 and from the UK - normally hang out on the movement disorders/ RSD forums.

Anyway.... do any of you have info on DBS? this is the email I posted on the other forums before everyone suggested this one:

Well. I saw my neurologist in London today. He is a great guy and did my botox injections (neck, shoulder, hands) and he has suggested that I have deep brain stimulation performed. This basically (as explained to me) means placing electrodes inside my scalp attached to the brain, then the wires tracking over the top of my head and coming down the sides of my neck and culminating with the control system just by my collar bone. Apparently to have it done would mean 1/100 chance of death or stroke, but there is a 65% chance that it might make a difference to my spasms/ deformities. The doctors don’t know the level of spasm reduction I would get, but they feel it is worth the risk. However, these are my questions on it:
1) Would I lose my hair? Will it have to be shaved off?
2) With RSD will the incision site close?? – I have heard horror stories of non closing wounds which won’t shut because of the RSD. Especially as I have had several ulcers from RSD issues and nearly lost a leg and an arm due to the poor vascular supply.
3) How long is rehab from this? Firstly general rehab and secondarily the rehab needed to teach me to use my limbs again as currently I have almost no control of them.
4) Operations are supposedly risky with RSD – is it possible to get RSD of the brain? Will I be at a higher risk of encephalitis? (Due to the RSD).
5) What are the risks of putting the wires across my scalp down my neck into my collarbone? With RSD? Do I really want horrific RSD there? Will they block before they operate? Even if I have centrally maintained pain? (So do blocks help?)
To be honest it is pretty scary. I am very up for it – it would be great to feed myself, stand up, walk and do things that other people do. But I know I will still have the RSD. So if I can’t walk from pain, not from spasm then it won’t do anything much.
I know I should jump at any suggestion a doctor gives me to get better and improve my physical functioning but….. it’s a hard one. The what if’s are the worst. What if I get brain damaged? 1/100 sounds unlikely but still…! However the doctors don’t think I will ever be “normal” (no comments please….) or be able to walk properly or something – but the optimum aim would be for me to be able to stand/ walk short distances with aids, feed myself and use my hand better. I have been reassured that nobody has got worse from the treatment but some have had an exceptional response to treatment whilst others have had milder responses.

Does anyone know anything about deep brain stimulation/ surgery? Any thoughts would be very appreciated! I just don’t know what the best thing to do is… it is so complicated!!! I never imagined I would be able to have the surgery due to the complications from the RSD.


Thanks!!!!!!!!!!!!!

Rosie