the overlooked penduncle

lurkingforacure · 09-19-2011, 10:52 PM

Quote:

Originally Posted by Conductor71

I think that the big key word we seem to have overlooked is this from the article abstract:

Microvascular decompression of that artery away from the peduncle may be considered for treatment for Parkinson's Disease for some patients.

Paula makes a provocative statement about this theory being around and now finally making its way into media. Yet Paula it isn't really...and this is the telling part. There is absolutely no mention of Dr. Jancetta or the peduncle at either PD Online Research or MJF site!! If this was a major anything, wouldn't researchers be all abuzz at their "think tank" PD Online Research and MJF at least mention it anywhere? Neither site references it anywhere. The silence is deafening.

I think that it is not going to make a splash because they have us all believing that Parkinsonism is a sporadic disease in the vast majority of us. This doctor from Pittsburgh has just uncovered something for "Vascular Parkinsonism" not us in the idiopathic dumping ground. My question is how do they know that this does not have wider implication for any of us. The statistics Jancetta quoted were also telling. How do they know that the vast majority of us do not have this going on?

They test us for absolutely nothing. If we are lucky we get an MRI...yet there are causes of Parkinsonism that are undetectable because the imaging is so inadequate with MRI. I ran across a PD fact sheet somewhere that listed over 50 causes of Parkinsonism. I run across more monthly. Call me crazy and it sounds out there, but I believe more and more that we do not have a disease! This is our brain's reaction to trauma that hits the substantia nigra. This is why we have cardinal symptoms but the similarities stop right there. Where are difference lie lead us back to one of those 50 or so things that cause Parkinsonsim. Read Harley's post. She is not producing dopamine like she should but she is not losing neurons. To these 50 + causes we can add the peduncle constricture and two more I found this past week both of which I think also may be much more prevalent.

One article but if you read any more on "chronic diffuse axonal injury" you'll see Parkinsonism symptoms appear quite frequently.

Blink reflex changes in parkinsonism following severe traumatic brain injury correlates with diffuse axonal injury.

This finding on subdural hematoma merits just as much head scratching...there are numerous case studies and the syndrome is reversible; patients respond to levodopa.
Parkinsonian syndrome associated with subacute subdural haematoma and its effective surgical treatment: a case report.

How many of us have ever fallen and clunked our heads? You need not have a concussion to end up with a subdural hematoma.

So my crazy theory is that 70% of us diagnosed with "Idiopathic PD"...if we were given even a battery of tests to rule out genetic PD, vascular, or viral PD, that a good chunk of that idiopathic would fall into one of these categories. Nope, instead when Young Onset, maybe they test you for Wilson's Disease, proclaim your MRI normal, and slap you with the the PD label and set you off on a conveyor belt that profoundly alters the course of your life. I understand they cannot test us for 50+ things, but I think we can see here that we should be offered way more in diagnosis and treatment than the crap we have that passes for medicine. This also tells me it is a colossal waste of talent, time, and money looking for a cause when far better for all of us would be for them to figure out why the heck the Substantia Nigra is so vulnerable in the first place.

Yes, but 78% similarity is waaaaay more than anything I've ever seen before, even the farming stats (correct me if I'm wrong). I agree, the sentence you quoted states that decompression may alleviate symptoms for "SOME" PD patients, but hey, what if those "some" were 78% of PWP out there right now? And in my book, 78% is not "some", it's "most".

To put it another way, if you had an MRI that showed penduncle compression, would you have decompression surgery?

If you read the article linked above in one of the posts on this thread, it asks an interesting question: under current theory, why does the substantia nigra just suddenly quit working as it should when all the other parts of the brain, as far as we know, are functioning normally? It's a good article.

Conductor71 · 09-20-2011, 12:44 AM

In my long hypomanic rambling way. I quote myself - ha:

The statistics Jannetta quoted were also telling. How do they know that the vast majority of us do not have this going on?

I am hoping there is something to his numbers. I have a concern that he did not cover the medication these patients were on? Were they all poor responders to levodopa? The woman in the article found it intolerable after two years but what does that mean?

Also, totally agreed with you on the substantia nigra; we need to focus research on why it is so vulnerable.

The other research I have been doing further supports vascular issues like the subdural hematomas undetectable by MRI causing levodopa responsive Parkinsonism in younger patients.

Interesting that I just read that vascular and drug induced Parkinsonism account for most common cause of the symptoms, yet why we not tested or screened for either one before being diagnosed as Idiopathic.

None of this makes any logical sense.

Laura

johnt · 09-20-2011, 12:47 AM

Conductor71's post makes some important points that I think need more discussion.

1. The treatment will only apply to some PwP. This is true, but the figures look good.

"Parkinson's disease: an inquiry into the etiology and treatment"
Jannetta P. J., et al
Neurology International, Vol 3, No 2 (2011)

"MRI scans in 20 Parkinson's patients and 20 age and sex
matched controls were evaluated in blinded fashion
... showed that 73.7 percent of
Parkinson's Disease patients had visible arterial
compression of the cerebral peduncle. This was
seen in only 10 percent of control patients (two
patients, one of whom subsequently developed
Parkinson’s Disease)".

Now not all those showing signs of compression will be treatable, but nevertheless many might be.

2. "The silence is deafening"
You are right to raise this. Ideally science should stand on its own, but in reality we often have neither the time nor the experience to assess it directly; we use "meta-analysis" to form an opinion. For instance, we ask what do other people say about the work. It concerns me that this paper is is not more widely referenced. However, scientific research exists in a culture which is not immune from fashion. This work is far from the expertise of most PD workers, so few could comment on it knowledgeably.

3. 50+ causes of Parkinsonism
This seems reasonable to me. BUT I draw a different conclusion: we've had long enough now since the introduction of levodopa to find a substantially improved one size fits all treatment and failed, so I see merit in looking at the sub-cases.

4. A battery of tests
An excellent idea. It's always seemed odd to me that the NHS (England) is prepared to pay thousands of pounds per year on drugs for me, but very little on tests in the hope of finding something treatable.

John

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