[Muireann]

http://neuro.dgimeetings.com/Home.aspx

[pegleg]

Originally Posted by Muireann

http://neuro.dgimeetings.com/Home.aspx

Interesting sounding conference. Some of the DBS guru's are invited as speakers.

I want to know more (MUCH more) about DBS. Why? Because I have had five doctors (all neurosurgeons or MDS) to tell me that it is my only option. I just don't believe that!

I have advanced PD (dx in 1994, but had symptoms at least 5-6 years before that). Now I suffer from pretty bad dyskinesias, and horrible, horrible dystonia. I have such pain that I can actually see the muscle spasms in my neck writhing and twisting. I haved tried muscle relaxers, pain killers, pain patches, and injections and/or epidurals injected at the sites of the pain. They work for a few days, but that's about it.

But am I homebound and nevevr get out? No! I still drive (but need to do so sparingly) and attend all types of functions. But I must rely on someone to travel with me or can never make a full commitment knowing it might "be a bad day."

What bugs me is all of those suggesting DBS don't seem to be evaluating my situation. There is nothing I have read in the literature that says DBS will help with pain. I am not tremor-dominant - never have been a "shaker." I had experimental surgery 11 years ago of retinal cell (dopamine-producing cells) transplants. The trial was halted about 2 years ago because it did not meet its endpoints (i.e., did not show efficacy over the placebo group). I was in phase I and knew I was getting the cells. It definitely slowed my progression.

These are facts that the pharmaceutial companies will tell you and that I have observed first-hand:
1) If you have balance issuses, DBS can make it worse.
2) It can greatly affect your voice (I have a good strong voice now - when I am in a bad off, my volume is reduced and I sometimes slur words, but basically have a good voice.)
3) I have known 10-12 people personally who had infections and had to have some of the hardware replaced or removed.

I could say much more, but will stop for comments. I just do not believe the benefits outweigh the risks in my case. Anybody want to try to convince me otherwise?

And I might add that this conference is being hosted by NIMHS
(National Institute of Mental Health)
and this is how it is advertised:

Deep Brain Stimulation is a treatment which has been initiated in over a dozen neurological and neuropsychiatric conditions and disorders, yet the mechanism(s) underlying its efficacy are largely unknown and subject to much speculation. The procedure has also been reported to produce numerous instances of adverse effects, ranging from bleeding within the brain and infection to cognitive dysfunction, hallucinations, compulsivity and even depression. This symposium will address the current range of applications, efficacies, case studies, and the theory and modeling that attempt to uncover the biological underpinnings of its beneficial effects. The ultimate goal is to bring about a greater understanding of the means by which the beneficial effects are produced, at the molecular, cellular & network levels.

[paula_w]

i have terrible balance problems and speech dysfuntion, the latter coming from meds. how my body behaves is completely determined by the med cycle. it's not "is it time for meds by looking at the clock?" it's time for meds when your body tells you it is.

DBS might relieve my side effects but balance, speech are not repairable by DBS. i don't have a tremor, i agree with peggy, the doctors have to apply themselves by learning about med combinations. not stalevo kind - i don't mean one pill two meds. ...

i mean how does mary react to paxil, amanatadine and sinemet cr , etc. i ask if i can take this, this and this and how much, then i go out and try it, dbs is not the only choice we have - it's the only choice they have.

our answer to why we don't have dbs is because it is definitely too risky for those off balance. it's not safe, we want placebo free gdnf trials - what's the hold up? it's been 2 years since they announced its' comeback.

[Jaye]

I have a horror of having things implanted in my body and of wt hat happens if the battery fails suddenly and I'm on a cruise. At least for now.


Intraoperative neurophysiology in DBS for dystonia.
Vitek JL, Delong MR, Starr PA, Hariz MI, Metman LV.
Mov Disord. 2011 Jun;26 Suppl 1:S31-6. doi: 10.1002/mds.23619.
PMID: 21692110 [PubMed - in process]


Acta Neurochir (Wien). 2009 Jul;151(7):751-8. Epub 2009 May 26.
Deep brain stimulation of the internal globus pallidus in dystonia: target localisation under general anaesthesia.
Pinsker MO, Volkmann J, Falk D, Herzog J, Steigerwald F, Deuschl G, Mehdorn HM.
Source
Department of Neurosurgery, University Hospital of Schleswig-Holstein, Campus Kiel, Kiel, Germany. marcus.pinsker@uniklinik-freiburg.de


I had a horror of having an artificial hip, too, but the dang thing works a whole lot better than the old one.

[stevem53]

I dont think I would be a good candidate either..I cant even put some of my symptoms into words

[Conductor71]

Peg,


I am highly dubious of DBS due exactly to side effects you list. I don't yet have any balance problems but do have freezing of gait, and I hear it does not always help that. Plus I know someone personally who has had surgery twice; the first time he noticed improvement early on but got an infection, so out it came. Second surgery and it seems botched after a year they are still fine tuning and he is still on a bunch of levodopa. Whenever we chat online he seems more off than I get at this point. I'd rather dose meds closely and deal with a little discomfort than to risk all that is at stake.

Have you considered entering the Phase III open label Duodopa trial? Numerous sites all over the US are involved. I am already fed up with the meds and want my life back. It is precisely for advanced patients and those who do not qualify for DBS. The only down side to it is the darn med cartridge has to be lugged on your person, but if you sew or knit can turn it into a fashion statement. ha. I figure it is less invasive and can keep an eye out for GDNF in near future if need be.

As an aside, my doctor mentioned to me that one reason they are promoting DBS earlier on is because they were finding that it kinda suspend ed you at that point in the disease. In other words it may (temporarily) slow or stop or somehow alter degeneration so it sounds promising in that regard.

Laura

[pegleg]

Laura - you asked, "Have you considered entering the Phase III open label Duodopa trial?" I am excluded from any clinical trial because I participated in a surgical trial 11 years ago. However, my radar has been on Duodopa for some time now. It may not be quite as simple as I make it sound, but I understand that it works like an insulin pump fo r diabetics. In lieu of insulin, Duodopa is an intestinal gel that is continuousl y pumped via a peg tube (a tiny "port " in the gut.) I would MUCH rather try that before I resorted to drilling into my brain again.

I do feel that DBS is overrated, and I do not understand why. Yes, it has changed the quality of life for many, but the QOL has also been changed in the direction of worse more times than not (at least that is what I have observed). We're talking brain surgery!

I also have heard that Europe has been using Duodopa for several years, and the trial at UAB (Birmingham, AL) has nothing but good to say about it. I am making an appointment in Alabama ASAP. They may try to make me have DBS, but I will have to be dragged to the operating room!
Peg

[Muireann]

I recently had a hormonal implant dug out of my arm because it had 'migrated'. It took three surgeries to get it out. The doctor who performed the second surgery sliced into a vein, mangled the implant still left in my arm and I developed a solid blood clot the size of a golfball. The clot and mangled implant remained in my arm for three more months until I could get a highly competent plastic surgeon to clean up the whole sorry mess, at considerable expense.

If a simple hormonal implant that is meant to be placed sub-cutaneously can cause that much trouble, no-one is going to sell me a DBS, ever. It's about as sophisticated a piece of medical treatment as a lobotomy or stone age trepination. Sometimes they work too, but at what price?