[CarolynS]

Use Of Deep Brain Stimulation To Treat Parkinson's: Researchers Reach Consensus

http://www.medicalnewstoday.com/articles/204572.php

Yet despite its effectiveness, there has been no consensus on several aspects of the use DBS, including which patients make the best candidates, where the optimal location for the placement of electrodes is, and the role that still exists for surgical removal of the damaged areas of the brain.

To address these concerns, a more than 50 DBS experts - including world-renowned neurologists, clinicians and surgeons - pooled their experience with the procedure and reached a consensus. The goal of this "meeting of the minds" was to better inform Parkinson's patients and their families about the potential of DBS treatment and to better inform the medical community in suggesting the procedure.

[lindylanka]

Am I being too hasty in seeing problems with this article, and wondering about it. I do not have a DBS myself, and do not wish to have one, but have been following information about it for a while.

There were two things that caught my attention in this article.

This:

The procedure is used only for patients whose symptoms cannot be adequately controlled with medications.

and this:

Surgical removal of the area of the brain causing Parkinson's disease is still an effective alternative and should be considered in patients.


The emboldened text is mine.

I am quite open to being challenged on this, perhaps I am wrong in being concerned. And I am aware that this is not a study, it is just an article, but these things help influence peoples decision making, and by that I mean not only patients.

I would not pretend to be any kind of expert on DBS, but that is my point really, this article does not give clarity, it just rang alarm bells....... firstly because of things related to the confusion between side-effects, tolerance of medication and symptoms, the second because nowhere have I seen 'surgical removal of the area of the brain CAUSING PD' described in that way before. In addition 'motor fluctuations' is used alongside 'tremor'. The first is a side effect and the second a primary symptom of PD.

Please forgive me if I am being too pedantic about this.

Lindy

[LindaH]

Originally Posted by lindylanka

Am I being too hasty in seeing problems with this article, and wondering about it. I do not have a DBS myself, and do not wish to have one, but have been following information about it for a while.

There were two things that caught my attention in this article.

This:

The procedure is used only for patients whose symptoms cannot be adequately controlled with medications.

and this:

Surgical removal of the area of the brain causing Parkinson's disease is still an effective alternative and should be considered in patients.


The emboldened text is mine.

I am quite open to being challenged on this, perhaps I am wrong in being concerned. And I am aware that this is not a study, it is just an article, but these things help influence peoples decision making, and by that I mean not only patients.

I would not pretend to be any kind of expert on DBS, but that is my point really, this article does not give clarity, it just rang alarm bells....... firstly because of things related to the confusion between side-effects, tolerance of medication and symptoms, the second because nowhere have I seen 'surgical removal of the area of the brain CAUSING PD' described in that way before. In addition 'motor fluctuations' is used alongside 'tremor'. The first is a side effect and the second a primary symptom of PD.

Please forgive me if I am being too pedantic about this.

Lindy

Am I being too hasty in seeing problems with this article, and wondering about it. I do not have a DBS myself, and do not wish to have one, but have been following information about it for a while.

Lindy,
Not at all. We need to challenge the information we’re provided with, especially when there seem to be discrepancies. I had the opportunity to read the original journal article, and thought that important details were left out of many of the news stories. And while there was some consensus noted, there were also areas where they coul not come to agreement on the best DBS candidates, surgical techniques and results. (after some 70,000 patients have had the surgery). The article does not seem to be freely available online yet.

If anyone would like a copy of the journal article, in Archives of Neurology) you can contact me offline


From: “Deep Brain Stimulation for Parkinson Disease
An Expert Consensus and Review of Key Issues”
in Archives of Neurology, online, Oct 11, 2010


The discussion Panel consisted of :" 33 neurologists, 13 neurosurgeons, a psychiatrist, a speech researcher, 2 neuropsychologists, a rehabilitation specialist, and a research scientist). Not one patient!

Who funded the study?
Funding/Support: by The Parkinson Alliance but also received funding from the Davis Phinney Foundation, National Parkinson’s Disease Foundation, the Lee Silverman Voice Treatment Foundation; and the National Institutes of Health .
Outcomes –There was little consensus on targeted area, surgical techniques, effects and measuring of cognitive problems, etc. The experience and skill of the surgeon and programmer was the best predictor of the outcome.
Although it seemed in recent years that many earlier stage patients were being encouraged to have dbs “sooner, not later, This study did not report any evidence for early dbs. “It is appropriate for advanced pD.”

And stated, "There is currently no evidence of a neuroprotective effect of DBS to provide a clear rationale for earlier DBS surgery."
Also:” PD continues to progress after DBS, and there is little evidence that DBS alters disease progression. Over time, patients who have DBS often develop LD-resistant symptoms including freezing of gait, postural instability, and cognitive decline."

On Surgical technique: " surgical techniques for implanting DBS devices are constantly evolving, and surgeons select their preferred technique based on training, experience, and the capabilities of their institution. There are few studies that have directly compared the safety or effectiveness of various surgical techniques. Thus, the best technique for performing DBS surgery remains a source of debate"

Complications:
" The rates of surgical complications are quite variable in the literature and include intracranial hemorrhage (0%-10%), stroke (0%-2%), infection (0%-15%), lead erosion without infection (1%-2.5%), lead fracture (0%-15%), lead migration (0%-19%), and death (0%-4.4%)"

"there is a critical need for prospective standardized reporting of complications."

This report is a beginning in providing evidence based information about DBS, but it I s not the final word.
They also reported, contrary to what many of us were told in the past that MRIs should be ok following DBS.

"The group recommended additional studies and discussions with the Food and Drug Administration and Medtronic to potentially modify the restrictive recommendations and allow for more flexibility in MR scanning. There were no issues of concern with respect to current induction, device functionality, and magnetic field interactions with DBS systems.


Finally, it was reported that “Ablative therapy (e.g. pallidotomy) is still an effective alternative and should be re-considered in a select group of appropriate patients." These types of surgical treatment in which brain tissue in the globus pallidus was destroyed by heat, were used before DBS was available. Unlike DBS, this was a permanent change, and are rarely performed now. The report however states they might be reconsidered…

"Although thalamotomy and pallidotomy have been largely abandoned and replaced by DBS, ablative therapies may yet have a role in certain patients such as those with an increased risk of infection or a history of recurrent infection of their DBS systems; with limited access to centers specializing in DBS surgery; and not desiring implanted hardware, as well as being unwilling to commit to long-term programming. Potential disadvantages of ablative surgery include mistargeted lesions with permanent neurological deficit(s), suboptimal benefits requiring repeat procedures, and risk of bilateral lesions.”

Hoping the near future brings better options....

[Conductor71]

There is always hope...

Researchers have joined through The Mayo Clinic to develop a "smart DBS" that measures neurotransmitter levels and responds accordingly. This would be a huge advance....

http://discoverysedge.mayo.edu/deep-...on-parkinsons/

The only other treatment that might be available to work on par but be much less invasive is the GAD therapy being pursued by Neurologix.


Thanks for this as my doctor seems to think that I am pretty close to being DBS material. Ugh.

Laura

[pegleg]

I am at the NPF/APDA Young Onset conference (which has been combined with the Southeastern Georgia PD Conference - thank you, James!). I was talking about this very topic yesterday with two people I feel are experts - Michael and Gretchen Church. They are a husband and wife team from Florida who have had PD for some time, and BOTH have had DBS..

Michael and Gretchen are on a crusade to develop protocol (honest protocol from a patient's perspective) on making a decision regarding DBS, to include how to choose a doctor and a facility that is right for you. Sated at the table with them was Jackie Hunt Christensen who was offering her second book, Life With a Battery-Operated Brain.

I only glanced at the contents of Jackie's book, but it appeared to be quite inclusive. I plan on purchasing a copy today, but you can obtain one through amazon.com
http://www.amazon.com/Life-Battery-O...7226194&sr=1-2

Keep your eye on the work these three will be doing toward refining DBS

Peg

[girija]

I met Jackie at the WPC and she gave me a copy of her book. It is an excellent resource for those considering DBS. She covered pretty much every thing you need to know about DBS. Thank you Jackie!

Girija



UOTE=pegleg;705356]I am at the NPF/APDA Young Onset conference (which has been combined with the Southeastern Georgia PD Conference - thank you, James!). I was talking about this very topic yesterday with two people I feel are experts - Michael and Gretchen Church. They are a husband and wife team from Florida who have had PD for some time, and BOTH have had DBS..

Michael and Gretchen are on a crusade to develop protocol (honest protocol from a patient's perspective) on making a decision regarding DBS, to include how to choose a doctor and a facility that is right for you. Sated at the table with them was Jackie Hunt Christensen who was offering her second book, Life With a Battery-Operated Brain.

I only glanced at the contents of Jackie's book, but it appeared to be quite inclusive. I plan on purchasing a copy today, but you can obtain one through amazon.com
http://www.amazon.com/Life-Battery-O...7226194&sr=1-2

Keep your eye on the work these three will be doing toward refining DBS

Peg[/QUOTE]

[indigogo]

Linda - the omission of patients in this kind of review is especially egregious - who better to report? We must work diligently for future participation in all aspects of the research process. The work Michael, Gretchen, and Jackie are doing on our behalf regarding DBS - a procedure I would approach with extreme caution - is invaluable and necessary.

[aj04]

Thank you, Lindy, Linda, and Carey (and whoever else) pointed out the problem that out of 50 “experts” on the panel, not one was a patient (at least not mentioned). I am not as forgiving and hopeful as most of you sound. Why is it that every time I turn around, one of my friends/acquaintances with a DBS has an infection, a broken lead, needs “exploratory” surgery—exploratory brain surgery—or is in a never-ending, unsatisfactory battle with the stimulator, the programming or the programmer? Or struggling to pay their part of costs of surgery and follow-up doctor’s appointments?

“Nowhere have I seen 'surgical removal of the area[s] of the brain CAUSING PD' described in that way before. In addition 'motor fluctuations' is used alongside 'tremor'. The first is a side effect [of medication] and the second a primary symptom of PD.”
--Lindy

Why spend the money convening all those experts if they can’t keep these rather important distinctions and definitions straight? Or report on them clearly? (I haven’t read the full article, so my issues might be more with the author of this clipping. The lead author of the whole article, Jeff Bronstein, is someone from whom I would expect careful and sensitive work.)

I find the phrase “the area of the brain causing PD” especially horrifying—especially in the context of removing it. We don’t, they don’t, know what part of the brain that might be or whether PD is “caused by” a certain area or areas at all. Current thinking points to PD being more systemic than simply located in the motor segments and pathways of the brain. (Reference Braak’s staging hypothesis) The disease may be most obvious clinically once it has reached the motor center of the brain, but that may be all it is—the most obvious clinical evidence (and I use the term loosely). I notice, however, that this panel met in April 2009 and it is reported in the current issue of Archives of Neurology a year and a half later. Sometimes a lot can happen in 18 months. Whole theories on what PD is can be revolutionized.

I applaud all those who have undergone DBS—especially those of you such as Gretchen, Michael, and Jackie who have used their experiences to benefit others seeking reliable, valid information and perceptions from an expert’s point of view, a patient’s point of view; and those of you who felt you had no alternative given your own situation. But, I have never liked the near cavalier attitude I have seen in some Medtronic reps, neurologists, and patients who have undergone DBS toward those (of us) who decide not to undergo this treatment now or, perhaps, never. Sometimes it feels like they are new converts with a need to convert those around them—whether they like it or not.

I have known many people who swear by their DBSs, rather than at them, at least after the criss-crossed or broken leads are fixed and the infections cleared up, but just as with medications we are still talking about imperfectly covering some symptoms, some side effects, while sometimes creating others. It just doesn’t seem like enough to me.

[pegleg]

I went to Emory for my annual movement disorder specialist - MDS check-up. I had dyskinesia and some balance issues, but my greatest problem at present is PAIN. I am guessing, but it could be due to 16 years of L-dopa therapy, the dyskinesiia, gait, several nasty falls and dystonia. My local neurologist asked me if I was ready for DBS a year or so ago.

Then at Emory, the MDS said if I had DBS it would "probably" take care of my ain. Monday I saw a neurosurgeon who said I have hip atrophy on one side and chorea (another label for dyskinesia). This doctor was to discuss spinal stimulation implants, but he also adds, "You should get a DBS - I bet it would take care of your pain." He is referring me to pain management disorder specialists after doing another MRI and some injections.

OK, that's the third professional to tell me to try DBS. But there are some ugly side effects I am not ready to share. I still have good "on" time and other than volume, I still have a good voice - something many have lost with DBS.

Sorry, but until DBS or ABC or whatever can say "we're going to restore your dead neurons" or "This is an attempt to stop your neurodegeneration," then I am NOT ready!

Peggy