[Ronhutton]

DBS is best but risks from surgery are much higher
Ron

DBS vs. Best Medical Therapy for PD (MDS 2008)

07/07/2008

E-MOVE reports from the 12th International Congress of Parkinson's Disease and Movement Disorders, sponsored by the Movement Disorders Society and held in Chicago June 22-26, 2008. Abstract numbers and pages refer to abstracts published in Movement Disorders 2008;23(suppl 1).

Deep brain stimulation is superior to best medical therapy for Parkinson's disease for at least 6 months, although the risk of adverse events from surgery is much higher, according to this randomized trial.



Two hundred fifty-five patients were randomized to best medical therapy (BMT) or DBS of the STN or GPi (also chosen randomly). Patients had a mean age of 63, were a mean of 12 years post-diagnosis, and were 80% male. Assessments included patient diaries, blinded UPDRS motor ratings, and quality of life with the PDQ-39.



At six months, patients receiving DBS had 5.1 hours increased on time, versus no change with BMT. Off-medication motor function was 36% improved with DBS, versus 4% with BMT. DBS patients had significantly better quality of life compared to BMT for all aspects of the PDQ-39 except social support. Serious adverse events occurred in 49 DBS patients, and 15 BMT patients, making the incidence risk ratio 3.8 for DBS vs. BMT.



Funding was provided by US government agencies and by Medtronic.



Best medical therapy vs. deep brain stimulation for PD: Six month result from a multi-site randomized trial

FM Weaver, VA CSP #468/NINDS Study Group

597;S197




Avigen, Inc.

Merz Pharmaceuticals, GmbH

Novartis

Valeant Pharmaceuticals International

[chasmo]

they could have raised those numbers quite a bit if they had stuck with the STN (sub-thalmic nucleous) as opposed to the GPi (globus pallidus pars interna) The STN is the preferred target for PD the GPi is the preferred target for Essential Tremor.
unfortunately they do not give the specifications of the adverse events.
Was trial done at one hospital or multiple ones??? Good programs have a 2% complication rate. This is usually post-op infection. SOME complications have nothing to do with PD or the surgery itsself. DVT's being a good example. they could occur with ANY procedure.
To me, this study raises more questions than it answers.

Charlie
http://health.groups.yahoo.com/group/DBSsurgery/

[aftermathman]

apparently recent tests in the UK aimed at getting DBS moved from "under the counter funded "research"" to bona fide treatment, tests showed an improvement over medication for one year only.

General amazement all round, Neuro is as amazed as me, his comment, "we may have shot ourselves in the foot".

No more detail at present but yet another example of difficulty measuring PD progress ? I'm beginning to wonder if we can get anything through trials.

Neuro also told me of placebo / sham surgery in clinical trials affecting and improving PET scans, how on earth can that happen ?

Come on Neil, lie back, deep breaths ....

Neil.

[reverett123]

There is a fact in the quantum world that you can never know reality directly because the act of looking at it changes it. I sometimes think PD is like that, at least to the extent that there is a disconnect between the lab and life. We know how individualized it is, yet research is looking for the common approach. The assumption is that if it cures me, then it will cure you. You have to keep a keen eye on your assumptions - they will ruin you faster than anything. If the cause is individualized and the manifestation as well, why do we assume the cure to be universal? It may be a way of keeping the problem manageable, but that carries no weight in the world.

Originally Posted by aftermathman

apparently recent tests in the UK aimed at getting DBS moved from "under the counter funded "research"" to bona fide treatment, tests showed an improvement over medication for one year only.

General amazement all round, Neuro is as amazed as me, his comment, "we may have shot ourselves in the foot".

No more detail at present but yet another example of difficulty measuring PD progress ? I'm beginning to wonder if we can get anything through trials.

Neuro also told me of placebo / sham surgery in clinical trials affecting and improving PET scans, how on earth can that happen ?

Come on Neil, lie back, deep breaths ....

Neil.

[made it up]

Thanks for starting this post Ron.
All I can add is that my quality of life was appalling when I had DBS 4 1/2 yrs ago.
I was desperate and quite willing to try anything and did.
It's not something we'd do without much thought but it was for me and many other PWP I know or know of the most miraculous of life changing events we'll probably ever experience health wise.
I'm starting to sound all American now so I'd better leave it at that!

[gaykir]

I swore I wouldn't do this but.....

"Funding was provided by US government agencies and by Medtronic" and then there are those (chasmo) who, I sometimes wonder if they are getting a kickback because they are so Pollyanna and will not allow anyone to challenge the benefits of DBS.

Folks it ain't all it's cracked up to be for everyone. And Charlie, I have no doubt it helped you and I have no doubt you had the best doctor in the world and I have no doubt that you know 20 million DBS patients for whom it was positive and I have no doubt that we are just stupid............ect etc etc....there should be a place for dissenting views.

[chasmo]

Originally Posted by gaykir

I swore I wouldn't do this but.....

"Funding was provided by US government agencies and by Medtronic" and then there are those (chasmo) who, I sometimes wonder if they are getting a kickback because they are so Pollyanna and will not allow anyone to challenge the benefits of DBS.

Folks it ain't all it's cracked up to be for everyone. And Charlie, I have no doubt it helped you and I have no doubt you had the best doctor in the world and I have no doubt that you know 20 million DBS patients for whom it was positive and I have no doubt that we are just stupid............ect etc etc....there should be a place for dissenting views.

Well Gail it takes a lot for me to be offended, but you have done it. I take NOTHING from anyone! I am not a Medtronic ambassador because I do not want to give the appearance that I am in ANYONE's pocket/ I am NOT.

For the great majority DBS IS a good thing. I always tell people that they have a 2% chance of post-op complications and about a 10% chance of getting no benefit from it.

Personally I think your anger is warranted, but not at me!! I am sorry that Kevin did not get morer of a benefit from his DBS. But its NOT my fault!!

I give the facts as I see them. Sure I am happy with my DBS, I'd be nuts not to be. DBS is the only effective treatment for someone with advanced PD.
WHen your meds quit working, its time to consider a DBS. For the great majority, it will turn the clock back on your PD at least 10 years.

Your story is important. people need to hear your story, but they also need to know that it is the exception, NOT the rule! HOWEVER, I will ALWAYS question and present alternative views if needed..

Sseeing as how only about 40,000 DBS's have been done, I do not know 20 million DBS'ers.

To those that think their DBS doesn't work, turn it off forr 24 hours and then ask yourself about the benefit from it.

Charlie

[pegleg]

OK, let's take off the boxing gloves and throw in our towels. It doesn't solve anything and might even run needy readers elsewhere.

Gayle, I have to defend Charlie a bit (if I may). You should have known him BDBS (Before DBS). He was pitiful - freezing quite often, couldn't take care of even simple hygenic needs without help - just a mess! DBS for him was a Godsend.

But Charlie, in Gayle's defense - you do sometimes overkill on trying to sell people on DBS (and no - he doesn't get a kickback). I completely understand why. However, we need to cut the fluff here and tell people what the down and dirty might be: I have known several who went thru hell (excuse moi) with infection or wires messed up with DBS, and voices are often affected. I chose to take cell transplantation because I just didn't want hardware in my head.

Everybody has the right to say what they want here (with a litte moderating by John (I think that's his name), but for God's sake - don't fight about it! Charlie, I appreciate all the people you have helped direct to a choice of treatment that did well for you. And Gayle, I understand your remarks.

And none of this was any of my business, but it's the "teacher/principal" iin me to intervene and try to make everything flow smoothly.

Hugs to both of you. Heck, let's all hug! lol



Peggy

[chasmo]

Originally Posted by pegleg

OK, let's take off the boxing gloves and throw in our towels. It doesn't solve anything and might even run needy readers elsewhere.

Gayle, I have to defend Charlie a bit (if I may). You should have known him BDBS (Before DBS). He was pitiful - freezing quite often, couldn't take care of even simple hygenic needs without help - just a mess! DBS for him was a Godsend.

But Charlie, in Gayle's defense - you do sometimes overkill on trying to sell people on DBS (and no - he doesn't get a kickback). I completely understand why. However, we need to cut the fluff here and tell people what the down and dirty might be: I have known several who went thru hell (excuse moi) with infection or wires messed up with DBS, and voices are often affected. I chose to take cell transplantation because I just didn't want hardware in my head.

Everybody has the right to say what they want here (with a litte moderating by John (I think that's his name), but for God's sake - don't fight about it! Charlie, I appreciate all the people you have helped direct to a choice of treatment that did well for you. And Gayle, I understand your remarks.

And none of this was any of my business, but it's the "teacher/principal" iin me to intervene and try to make everything flow smoothly.

Hugs to both of you. Heck, let's all hug! lol



Peggy

yup I was a mess.
I was one of those 2%ers at first.
I had to have it pulled due to infection.

Would I go thru all the surgeries, PIC lines, home IV Antibiotiics again????

IN A HEARTBEAT!

I try to relate my experiences with the caveat that " your mileage most likely will vary". My DBS was as difficult as most I have ever heard of.

7 surgeries
31 days in the hospital in total

I think i give a pretty balanced picture of the DBS experience.

You are a DEAR friend Peggy and I still think a lot of Gayle too. SHe is a great caregiver and a nice lady and a great artist!
She is just frustrated over Kevins lack of progress.
I hope they don't giive up on his DBS.

Charlie

[gaykir]

The whole point I was trying to make was this - in any study, when looking at the results, one must always keep in mind the source of the funding.

(Charlie - It was fun to see you riled up a bit )