Hey guys (and gals)

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.


so, any advice? any thoughts welcomed! this week has been so shattering I can't think clearly anymore (grandmother has terminal cancer with spinal secondaries so is gradually getting more and more paralysed - went home to give mum and her some social support wednesday and in 2 days she went from a para to a low quad)...then thurs had wheelchair fiasco.. then this fri!! AGH!!!!!!!!!

love (and thanks!)

Rxxxxxxxxxxxxxxxxxxxxxxxxx

Hi Frogga,
I personally have never heard of it. But that doesn't mean anything. I would get another opinion as well.

You have some very bright questions lined up. For beening so young you are so sharp for your years.

I would ask the surgeon how long has he been doing the procedure?

How many procedures like this has he done?

What are his stats? Percentage rates. Like prior outcomes from other patients? Some surgeons will even have other patients call you with their outcomes.

I am sure other people will come along with some other help for you. Is this kind of like a electric shock type thing?

Big Huge Hugs, Roz

Hi Rosie,

Wow! You're going to be the real Bionic Woman! I recently came across a reference to this, because I have 2 friends with Parkinson's, and they were discussing this procedure which, it seems, is usually done for that and other ailments involving major dystonia. This site is quite good:
http://www.parkinsonsappeal.com/index.html
and I would also put it into Google Images search - often you get more info from seeing the pix (I've already done this, there's scores of stuff to look at) .

Also, post on the Parkinson's forums - the one here is very good, I'm sure they'll direct you to more info anyway.

It sounds very radical - hey, anything involving opening the skull must be, but it looks similar *in mechanics* to a spinal cord stimulation procedure...but I need to read up on it more, you know, websites with personal stories, to see how people actually cope with it in the real world.

I suppose you have to weigh the problems you have now (now being the status quo) with the benefits to be gained and the risk factor - only you can decide that...but you sound very upbeat about it.

And yes, very scary idea, but I must say that the websites I've looked at are very positive.

You are so gutsy, I know you'll make the right choice for yourself
Take care, good to see you back online,
all the best!

I am sure you will probably come up with even more questions. You have an excellent start.

I agree with artist here in saying you are very astute for your age. And doing research on it will help alleviate alot of your fears, answer some of your questions & quite possibly bring more questions to you to ask your physicians.

You would also for yourself have to determine what percentage of improvement you are willing to settle for. I had surgery once to try to alleviate headache pain by having having an artery to my brain removed. It runs along the occiptal nerve & they pretty much dance around each other. The artery pulsed constantaly on the nerve. Well I have to admit that I agreed if it only gave me 10% pain reduction. Which is about all it did give to me. It was a new surgery being preformed & the neuro surgeon who did it is the one who came up with the surgery. (it was video taped for teaching purposes even) Anyway my head hurt so badly after a whiplash injury that any reductions in pain would be most welcome. They would send me home from ER loaded with shots for the pain & they didn't do anything. So even 10% was worth it to me. Weigh your pros & cons...........that always helps me when making decisons.

DebbyV

A very close friend has two brain stim implants... he has parkinson's. Answer to one of your questions... they shaved a small portion of his hair but it grew back in no time.

I don't know how it will affect the RSD.

My friend could barely walk, shook all the time, had trouble eating, talking, and many other problems... HE IS NOW SUPERMAN!!! He's doing GREAT with little to no side effects. Many of his symptoms from parkinson's are now minimal.


Best of luck to you. I hope you find the answers to all of your questions.

Dear Rrrrrr/Frogga -

Although I can't respond to even half of the questions you raise, I did want to write, where there is just so much expressive clarity I’m your writing and we share the affliction of debilitating cramping.

I really just have two suggestions for things to be raised with your doctor before going under the knife. First of all, you have seen Debbie's thread - among others on Pycnogenol, the antioxidant made from French maritime pine bark. It's been pointed out to me that the active ingredient is the same thing as grape seed oil, which is available at a fraction of the cost. Please check out the first of seven pages from PubMed on the stuff. It's pretty amazing: http://www.ncbi.nlm.nih.gov/entrez/q...arch&DB=pubmed

In that regard, please look particularly at "Glutathione: Systemic Protectant Against Oxidative and Free Radical Damage" Alt Med Rev 1997; 2(3): 155-176 [sorry, for some reason I can't upload this as an .html file, and it's too large by almost a factor of 10 to attach as a Word file; if anyone wants it, just send me a p.m. with your email address and I'll try to get it out that way] and then this abstract:

"Diabetic ulcers: microcirculatory improvement and faster healing with pycnogenol," Belcaro G, Cesarone MR, Errichi BM, Ledda A, Di Renzo A, Stuard S, Dugall M, Pellegrini L, Gizzi G, Rohdewald P, Ippolito E, Ricci A, Cacchio M, Cipollone G, Ruffini I, Fano F, Hosoi M.; Clin Appl Thromb Hemost. 2006 Jul;12(3):318-23.

Diabetic microangiopathy leads to lower limb ulcers that are very slow to heal. Pycnogenol was evaluated on diabetic ulcers in a controlled trial. Ulcer medications were used in 4 groups (30 patients): (1) systemic Pycnogenol and local application; (2) local Pycnogenol only; (3) oral Pycnogenol; and (4) medications only (control group). Ulcerated areas and symptom scores were more reduced with the combined oral and local treatment (P < .05). Oral and local treatment were less effective, but still improved compared with the controls. Combined treatment produced 89% complete healing at 6 weeks versus 84% with local treatment and 85% with oral treatment; healing in controls was 61%. The combined treatment group and oral only group had better microcirculation after the combined treatment. Combined local and systemic application of Pycnogenol may offer a new treatment of diabetic ulcers. Local treatment also speeds ulcer healing.

and then this one:

"Cramps and muscular pain: prevention with pycnogenol in normal subjects, venous patients, athletes, claudicants and in diabetic microangiopathy," Vinciguerra G, Belcaro G, Cesarone MR, Rohdewald P, Stuard S, Ricci A, Di Renzo A, Hosoi M, Dugall M, Ledda A, Cacchio M, Acerbi G, Fano F.; Angiology. 2006 May-Jun;57(3):331-9.

The aim of this study was to assess the preventive action of Pycnogenol (Horphag Research Ltd, UK) on cramps and muscular pain in different groups of subjects and patients. The study included a 5-week observation period (4 weeks treatment and one follow-up week after the suspension of treatment) to evaluate the efficacy of Pycnogenol after its withdrawal. Four 50 mg capsules (total dose 200 mg/day) were prescribed with suggestion to drink at least 1.5 liters of water every day. In the first part of the study 66 healthy subjects completed a 5-week follow-up period. The difference between number of cramps attacks recorded within the 2 weeks before inclusion and the number of episodes during the fourth (p <0.05) and fifth (p <0.05) week were statistically significant. In normal subjects the average number of episodes was reduced from 4.8 (1.2) events per week to 1.3 (1.1) at 4 weeks (p <0.05). In venous patients the decrease in events was from 6.3 (1.1) to 2.6 (0.4) per week (p <0.05). In athletes the number of episodes decreased from 8.6 (2) to 2.4 (0.5) (p <0.05). The decrease was still present at 5 weeks in the 3 groups, to levels significantly lower than inclusion values (p <0.05). In the second part of the study, patients with intermittent claudication and diabetic microangiopathy were evaluated and treated (4 weeks). The groups treated with Pycnogenol and the control, placebo groups were comparable. There was a significant decrease in the number of cramps episodes (p <0.05) and in the score concerning muscular pain (p <0.05) in claudicants and diabetics. No significant effects were observed in the placebo groups. In conclusion, cramps and muscular pain, common in these 2 types of patients, were decreased by the use of Pycnogenol. Globally, these results suggest that the use of Pycnogenol prevents cramps, muscular pain at rest, and pain after/during exercise in normals, in athletes prone to cramps, in patients with venous disease, in claudicants, and in diabetics with microangiopathy. The difference is statistically significant considering objective observations (cramps episodes) and evaluating more subjective aspects (score). This indicates that Pycnogenol is effective in reducing pain and cramps during retraining and rehabilitation increasing its efficiency. In starting any physical rehabilitation program, particularly in vascular subjects, the limitation in mobility associated with muscular pain and with cramps tends to be relevant, and controlling these symptoms is useful to speed up the retraining process.

But for the fact that I am trying get some base-line Interleukin 6 testing done within the next few weeks - testing that I've spent over a year trying to get in place - I would be on the stuff already. Where you have significant issues with both cramping and ulceration, I would try and get on this with a rather aggressive dosage as soon as possible, certainly well before you have leads placed in your brain. (And in that regard, while I never received the apparently lower tech spinal cord stimulator, it's my understanding from reading the board over the years that a substantial majority of people become dissatisfied with their stimulators within 2-3 years: part of the reason why I never pursued the treatment myself. For more information - and if you haven't done so already - take a look at the articles under the section entitled "Treatment" on the RSDSA Medical Articles Archive page at http://www.rsds.org/2/library/articl...ive/index.html.) And speaking of IL6, it's also my understanding that emerging classes of anti-IL6 meds have as their principle side effect opportunistic infections, including but not limited to meningitis. I.E. these meds and direct brain stimulation definitely do not mix.

Secondly, there is I believe some work going on right now looking at the role of opioid analgesics in promoting an intestinal bloom in the small intestine. Now, people have known for years that opioids can cause all manner of GI problems, what's new here is that I am told that there is direct evidence linking the aforesaid bloom with the production of neurotoxins. What I know is that after gas spectronomy indicated an elevated level of hydrogen in my gut, I was given a fairly high end antibiotic over a ten day period, which put the cramping into complete remission for about a week. Unfortunately, subsequent applications have not been as successful as the initial results, the second was not as good as the first, and the third not as good as the second, etc. But that said, it's something that while firmly experimental, may be worth bringing up with your physicians. And no, I'm not aware of anything having been published on this one as of yet; from what I understand it's still in the grant writing stage. I guess what this means in practice is that if there's a way to avoid the use of narcotics for pain control, it is most certainly worth your serious attention. But then you knew that already.

That's about what I know. Best of luck in sorting this all out. It would be fabulous if you got the promised relief. Truly.

Mike

You have been given some good advice from the wonderful folks here, and I just want to add that whatever you decide to do, just know we will be here for your support. You will be in my thoughts and prayers, and I hope if you do have this surgery that you will indeed be able to feed yourself, stand, and etc.

Good luck sweetie, and you hang in there. You're family will also be in my prayers, as I know if is difficult seeing someone you love suffer from cancer.

Hugs,
Janet

Bumping re info on uploading of article and offer to pass on via email. Txs.