From an article in 2007, where it states that Dr. Jannetta first proposed vascular decompression in the brain for trigeminal neuralgia twenty years before it was finally accepted. Twenty years. Better late than never, I guess, and perhaps in our advanced technological age it won't be so long for us to determine whether vascular decompression is helpful for PD. Here's the link:

http://www.pittsburghlive.com/x/lead.../s_532004.html

For those not following Dr. Jannetta, he proposes that vascular compression upon the penducle may be a cause of PD and that decompressing that artery alleviates the PD. There are posts here on the forum about this if you care to learn more.

Here is a response from a neurologist that may explain the skepticism:

http://forum.parkinson.org/index.php...ecent-pd-news/

It makes me wonder how they responded to the initial trigeminal neuralgia results.

If you read the article I posted, it says that Jannetta's peers had some pretty hotly contested debates (I can only imagine!) about the merits of the procedure for trigeminal neuralgia way back when. And yet today, vascular decompression is, from what I understand, the most likely treatment to permanently and completely resolve that condition. They offer botox, drugs, radiation/gamma knife, but the vascular decompression has to date had the highest and most complete success ratefor TGN.

It IS very dangerous surgery. Our neuro told us the risk of stroke was higher than normal and death risk higher as well, as high as 5%. But all brain surgery is risky, we know this, and people have DBS every day, brain surgery for tumors, etc. A skilled neurosurgeon trained in this procedure knows what he's doing and one would just have to decide whether the risk was acceptable.

As for the skeptical comments shared, I've read this doctor's comments before and while I understand what he is saying, I don't buy all of it. I have seen our MRI from several years ago and the compression is indicated by the arterial line not being even in width, like it's being squeezed in a weird kind of way, you can actually see it. Dr. Okun makes good points and if I had access to all the debates from 20 years ago, I can't help but wonder if many of those same arguments he makes now were made back then and proven incorrect, at least for a large number of people. Our own neuro made many of these same points at our appt. to discusse this, so I do think they are legit...but at the same time he admitted if decompression alleviated at least physical symptoms, he would be on board to recommend it being done. We all know DBS does not alleviate all PD symptoms and yet thousands upon thousands of people have had that surgery, so I don't view this as any different other than the fact that it may be much more dangerous surgery and of course, needs to be established that it can provide benefit.

That PD could be permanently alleviated, either in whole or part, by a surgery, AND that it could be caused in whole or part by a physical problem, is such a radical shift in thinking that I can see why it rocks the medical and research establishment.

I could be totally wrong in all of this, I just believe it deserves further investigation before it is poo-pooed. Dr. Jannetta has a pretty incredible list of accomplishments, and seems quite sincere in his desire and drive to truly get to the root of the problem. We'll see. Thanks for posting the link to Okum's comments, it's good to have everything out there.

Oh, for those interested, I think you can find Jannetta on youtube....but I think parts of the interview show brain surgery itself and if you are squeemish, might want to skip it, it's pretty horrific, even though it's just a very short clip. Way too much visual for me on that one, just be warned.

I just have a few things to add:

1) Let's look at the skeptics and then Jannetta. Who has more to lose at this point? Dr. Jannetta is 77 years old and nearing the end of his career and has made quite a name for himself. He doesn't care about that "name" or reputation but in doing the right thing by making it very public that secondary reversible Parkinsonsism due to vascular compression may be a grossly underdiagnosed condition. The skeptics tend to be in the mid or height of their careers and stand to lose much more at this point.

2) Hotly debated? If anyone has read much on bullying in the workplace will know that bullying takes on a whole new level of mean in the medical profession. It centers on peer reviewed publishing and professional ridicule. Doctors who choose to do what is right and nonconform can even find themselves losing their medical licenses. I highly recommend everyone see what happens to the handful of doctors who go against the grain and acknowledge that Chronic Lyme Disease does exist. Some of these doctors are older and at end of careers but are putting reputation, everything on the line to save lives. See the documentary "Under Our Skin".

I think many more doctors may support Jannetta but cannot do so without severe repercussions.

3) What else do skeptics have to offer us beside defensive expert opinion? How do they NOT know that many more people do not have vascular parkinsonism that is reversible or treatable? Did you have your MRI checked for evidence of vascular compression upon diagnosis? PD is supposed to be a diagnosis by exclusion. I have to date been excluded for nothing. Doesn't that imply a panel of tests are run? Apparently, exclusion means you show two cardinal symptoms based on a 30 minute exam/interview with a doctor. Oh and an MRI to rule out MS. Who decided this was adequate enough to profoundly alter a person's (and their families) life course? The AAN. If they want to so readily mark us down as Idiopathic PD so they can get that billing started and plan their next continuing ed requirement in Aspen at a ski lodge with some one else paying for it, so be it. The skeptics can kick up as much dust as they want, but it does not obscure the fact they cannot for sure say that anyone of us does not have a vascular etiology because they do not screen for it; therefore what they are saying is nothing more than arrogant posturing, or a defense response designed to divert our attention from the truth that some do not respond to Sinemet simply because they do not need it, and that the whole big house of cards begins to sway. In order to keep the cards in place they must routinely tell us what we do not have as well; apparently this too can be done without any actual tests...

4) Even more evidence exists for vascular etiology that is reversible. Case studies show that chronic subdural hematomas cause Parkinsonism and can exacerbate established cases of PD. This can result from slight bump on the head so insignificant the person does not even recall it happening.

A few other rather opinionated thoughts...

Laura

Very well said, Laura, thank you for your comments. I would just add, reading your response, that when we were first dx'd I read about a condition that is caused by pressure inside the skull that mimics PD to a T, and is alleviated completely by putting in a shunt, I think it is, to relieve the pressure. I was hoping that was what we were dealing with but after our all-too-brief diagnositic exam we were told we had very early PD. So early, apparently, that the neuro (who I do feel is quite excellent but retired now, unfortunately) said we were in his office a good two years before most people would see a doc. I hoped that as the years went by, the early dx would prove incorrect but I think you are right, once that label is stuck on you, no doc is willing to consider that you anything but PD.

But that is yet another condition that is mistaken for PD and is treated completely differently. With full recovery, I might add.

I keep going back to Ron's "best working theory" that he used for years in his career, it obviously worked very well for him and no doubt countless other labs across the globe. This theory seems to answer more of the questions about PD than any other theory out there. At least so far. And because of that, it deserves further research to validate whether is can help us.

The MS folks are spending 4.5 million on their vascular theory, with no less than SEVEN concurrently running studies! PD is the second most common neurological disease in the U.S.! I have no idea why at least the NIH is not all over this to even just consider this theory. Maybe if Jannetta miraculously alleviates the PD of the 78% of his PD test subjects with vascular compression, the pendulum will start to swing away from dopamine. We watch, wait, and hope. And make a few phone calls here and there

Gee, I should wait a few days after flu recovery to reply to anything here; I was rather harsh. I learned on Saturday that certain intestine bugs can result in your meds not fully working; whatever it is blocks medicine absorption so you are in limbo all day long. Not fun.

I do think Doctors mean well in their skepticism, but one key benefit they fail to mention when looking at vascular treatment is that the surgery, though maybe much more risky than DBS, is likely permanent. We know that DBS is not. This again tells me we have different types of PD with different causes and different prognoses and treatments. Why doesn't anyone ever talk about these things that need to be acknowledged and perhaps changed? We have some pretty wealthy people with PD, looking at MS patient involvement is inspiring, why can't we get financial backing and someone to design an alternative think tank research and alternative treatment center(s)? Instead, we end up with celebrities opening up the same old same old ubiquitous foundation.

Laua

These "professionals" know nothing about the hell we live with. Thanks for the post about this physician. seems like he might actually care more about people than his reputation. The days I spend lately are of increasingly poor quality despite listening to the "all knowing" MD, & following ineffective advice, med protocals, DBS. I have heard celebrity talk about how "great" They are doing, & wonder what they do that escapes me. Where is the secret to living "well" with this. All the hoopla about the cure in 5 years, what a joke. I'm sorry to be such a downer but I am too tired to be positive. The hope is just not realistic anymore & I have had more than enough. To those drs who won't even consider something new I say, who are you to play god??? How dare you for being so rigid & so convinced you are right. you'd better hope like hell you don't get this, because if you do, you too will join us. you'll look around & listen to a bunch of nonsense being spewed as fact & be totally powerless over your own fate...

What I see in all of this is unwillingness from the medical docs and researchers and yes, even some PD foundations, to even consider this as a possibility.

Laura is right: who gets ANY tests done when they are dx'd with PD? And yet, incredibly, PD is a disease of exclusion where many other diseases are ruled out. There are, last I read, over 300 causes of tremor, yet other than perhaps an MRI, I don't know that most PWP get any tests done upon being dx'd. At least not unless they have a lot of money or go to a teaching facility where they are more likely to look at more than just arm swing and finger tremor. Maybe a blood workup, for what that might show. Certainly no one has ever had their MRI looked at for any kind of vascular or peduncle compression that I have heard about.

So this is all new for PD. Jannetta is pioneering this just as he pioneered decompression for TGM twenty years ago. It is new, untested, unchartered territory. Thus, how is it that those in power can definitively say that this won't help? Or worse, that it won't help with all PD symptoms. How do they know? They don't know, and they can't know, because this has never been done before. Not ever, anywhere, that I can find, other than the one lady Jannetta operated on. And the result for her? PD alleviation the day after surgery.

I don't know how you get folks behind such a radical new idea when the fear of peer ridicule or worse is so strong. The good thing is that history is on our side, and we can all point to TGN and how this was first proposed for that and ridiculed, and now it's the most likely treatment to help permanently and comprehensively. Cannot argue with success.