Low blood flow to brain in CFS patients? Possible surgical treatment..

[Frank]

http://liberation-treatment.com/

The Liberation Treatment is a potentially ground breaking discovering for the treatment of Multiple Sclerosis. It is thanks to the research of Dr Paolo Zamboni and his team that we now know about this treatment.

Dr Zamboni began his research into MS with the desire to cure his wife. Unhappy with the answers that he could find he decided to research what actually cause MS himself.

His initial research related to why the location of lesion in the brains of MS patients were all venocentric. He rationed that there must be a link between the veins and the occurrence of these lesions. And with further study he found that the brain damage was all counter to the flow of blood, meaning that it likely had something to do with the drainage of blood back to the heart.

Next he started to study both MS and normal patients to determine what differences he could find between them, hoping for an explanation. What he found was that in MS patients he could show that 100% of the cases he tested had abnormal veins, he called this condition CCSVI. Specifically that there were certain points where the veins coming from the brain along the next and upper chest were either restricting or blocking the flow of blood. His research proved that in all cases he found at least two abnormalities in the veins.

The next step he took was to attempt to treat these abnormalities, hoping that by doing so he would be able to cure the disease. By all current accounts of this still on going study the results have been very positive.

Although the number of people who have received the treatment are still few, those that have are living with reduced fatigue, fewer or no relapses and their MS symptoms are slowing being alleviated.

Since there has not been enough studies to prove it, we cannot say that this is a cure, but we sure hope it is.

What is CCSVI?

Chronic Cerebrospinal Venous Insufficiency (CCSVI) is a condition discovered by Dr Paolo Zamboni from the University of Ferrera in Italy. It refers to a reduction of flow of blood from the brain to the heart due to the narrowing of various veins along the spinal chord from the head down to the upper chest.

It is believed that this condition is what causes build-ups of iron to form in the brain. Eventually, these would then cause the development of the lesions and MS symptoms.

http://www.youtube.com/watch?v=l9syfTlcTrs
http://www.youtube.com/watch?v=HOkjj59qsd8
http://www.youtube.com/watch?v=8vJrLwD5bnA

 

[Merry]

Thanks, Frank.

I had not heard of this before. I have two first cousins - the two are siblings - who have MS.

I will be interested to see if anyone uses this research to test and treat ME/CFS patients.

Merr

 

[guest]

How does he treat it?

EDIT: I see, surgery.

 

[sensing progress]

There was a long story about this in the NY Times about a month ago - http://www.nytimes.com/2010/06/29/health/29vein.html

 

[Rockt]

He treats it using a (somewhat?) minor surgery similar to angioplasty. I know they are trying it at a couple of hospitals in Canada.

As soon as I heard about it, I thought about CFS, since I'm darn sure my brain ain't getting enough blood.

 

[Levi]

CFS/ME can be confused with atypical MS

Has anyone here done a venogram of the relevant arteries to check this out?

 

[garcia]

Has anyone here done a venogram of the relevant arteries to check this out?

No but I believe I have impaired blood-flow to the brain. I say this because when I sleep at night with a big pillow (memory foam) it seems to improve my brain, e.g. I dream more, and head feels clearer. I believe it is to do with the angle of the neck, and the resulting blood-flow to the brain. For some reason a steeper angle seems to give more blood flow, at least to me.

 

[Peggy]

I immediately thought of ME/CFS when I read about Dr. Zamboni's MS research too, but I didn't realize this surgery was now being performed in the US and many other countries.

I wonder if any ME/CFS patients have gone through the testing process to see if we have this condition too? It sounds as if one has to have Chronic Cerebrospinal Venous Insufficiency (CCSVI), not necessarily MS, to be treated?

I wonder if ME/CFS patients could participate in this clinical trial in Albany, NY (thought it looks like it already started)?

--
Clinical Trial to be Started in Albany NY

Dr Mehta of the Vascular Group will be starting a new clinical trial for CCSVI in the next few months. Currently he is hard at work writing the protocol that he will follow for the trial. The planning and preparations for the trial is expected to take at least a month or two at this point so nothing is to be expected before the start of March. The testing and treatment is expected to follow closely with Dr Zambonis procedure.

Although, undecided at the moment they may be offering the procedure to those that cannot participate in the trial. The cost for the treatment has not yet been established.

With planning still under way and no information has been established regarding the full treatment plan they are currently making a potential patient list. Those selected will most likely be contacted sometime in March 2010.

Required information:

* Name
* Date of Birth
* Address
* phone number
* Email
* A brief history of any CCSVI Diagnostics or testing already done (if any)

Note: Lack of testing does not exclude someone from evaluation.

To be considered for this trial you can email: wilcoxm@albanyvascular.com

You can also choose to use the form I have provided by click on:
Sign up form

The Vascular Group website:
http://www.albanyvascular.com --

 

[lerae]

i hope this isnt too old to post on this thread.
I was told, after my MRI was examined, that I need CCSVI treatment. however, my lyme doctor said i have a huge viral component and that i should
work on getting that treated first. the CCSVI neurologist said that he feels i shld get the procedure done asap.
i can see both sides. often times you re-stenose because the virus/bacteria is the problem behind it. but, they also say that the hypoperfusion (loss of blood flow) in
my brain is not allowing my body to heal itself.

any suggestions? it is covered by insurance... all so interesting!

 

[baccarat]

I can't see the point of taking antivirals if these can get where they need to go because of restricted blood flow. Also this should enable white cells to better go after your virus. If blood flow is the problem then it should be addressed first. I don't think they're going to re-stenose immediately, you should have ample time to address the viruses or else before that reoccurs. Just my thinking anyhow.

 

[heapsreal]

I can't see the point of taking antivirals if these can get where they need to go because of restricted blood flow. Also this should enable white cells to better go after your virus. If blood flow is the problem then it should be addressed first. I don't think they're going to re-stenose immediately, you should have ample time to address the viruses or else before that reoccurs. Just my thinking anyhow.

Viruses can reactivate anywhere in the body, so using av's can still help lower viral load even if not fully getting into the brain, i guess. Plus herpes viruses also like to sit in nerves as well. I suppose the secret would be getting it into the nervous system not just the brain, plus av's only stop viruses replicating, we need something to kill the buggers, maybe this is where rituximab might play a role as it can kill? the viruses in b-cells.

 

[john66]

Isnt this the same theory behind using Nimodipine? To increase blood flow to the brain. I just read the book Beating Chronic Fatigue by Dr. Kristina Downing Orr, published in the UK, talks about using small doses of Nimodipine to "reboot" the brain. Jay Goldstein talks about it as well. Nimodipine is a calcium channel blocker that was developed for blood pressure, but is now used mostly for post stroke patients.

 

[ramakentesh]

It would be interesting to get his take on the condition although cerebral and carotid blood vessels appear normal supine in most POTS at least.

 

[Vegas]

No but I believe I have impaired blood-flow to the brain. I say this because when I sleep at night with a big pillow (memory foam) it seems to improve my brain, e.g. I dream more, and head feels clearer. I believe it is to do with the angle of the neck, and the resulting blood-flow to the brain. For some reason a steeper angle seems to give more blood flow, at least to me.

Or the position of your head and neck opens up your sinus passages somewhat and anatomically corrects an obstruction of the airway caused by adipose tissue in the throat. With CFS you could have some centrally mediated sleep apnea, and this can be superimposed on an obstructive component, especially if you have nasal allergies. What you are describing certainly sounds like a complication of interrupted sleep, so you could be suffering from multiple hypoxic episodes where your o2 sats drop.

 

[lerae]

It would be interesting to get his take on the condition although cerebral and carotid blood vessels appear normal supine in most POTS at least.

This is interesting. I just had a 3 hour MRI regarding my veins. And I was supine. It showed that they were 50-75% stenosed (jugular that is). might explain why i cannot drive anymore, feel
detatched, etc. The neorologist who did it, in Las Vegas said I should have CCSVI done, as well as the neurosurgeon who does CCSVI.
However, my last doctor mentioned I should wait until i get my viral load down. I was diagnosed w/ lyme and babesia a few years back. Some lyme patients i know who have
had CCSVI have re-stenosed, one worse. So, I am in limbo.
Its the chicken vs egg to me. I would love to get blood up there in my hypoperfused in 4 lobe brain, but gosh, restenosing would not be good @ all.

has anyone received the CCSVI and done well? (another friend who has MS had the procedure, they placed a stent, and she is doing great).
btw: my tilt table test, well, they werent able to finish it because i almost crashed. that was before some babesia treatment tho.

 

[ramakentesh]

Your dealing with speculative science on both of those really.
I personally think the viral loads things is a secondary issue that most patients have because their innate and cytokine branch of the immune system is chronically activated and their is an immuno perturbance.
Secondly most of the cerebral blood flow abnormalities found in CFS/POTS/OI have been found to be related to abnormal cerebral autoregulation, meaning there is no buffer between blood pressure fluctuation and cerebral perfusion, resulting in bloof pressure and brain blood flow synchonicity.
Sympathetic excess may effect cerebral autoregulation, baroreflex sensitivity and perhaps venous return through vasomotor effects so; parasympathetic withdrawal may effect the vagus or lead to cerebral autoregulation issues as well.
Most of the peripheral blood flow abnormalities in CFS and POTS appear to relate to regional blood flow redistribution - too much blood flow in the stomach being the most common, leading to reduced stroke volume and thoratic hypovolumia, compensatory sympathetic excess or parasympathetic withdrawal and resultant changes in cerebral autoregulation.
It may help in general but CCSVI may not effect the actual problem.

 

[lerae]

Your dealing with speculative science on both of those really.
I personally think the viral loads things is a secondary issue that most patients have because their innate and cytokine branch of the immune system is chronically activated and their is an immuno perturbance.
Secondly most of the cerebral blood flow abnormalities found in CFS/POTS/OI have been found to be related to abnormal cerebral autoregulation, meaning there is no buffer between blood pressure fluctuation and cerebral perfusion, resulting in bloof pressure and brain blood flow synchonicity.
Sympathetic excess may effect cerebral autoregulation, baroreflex sensitivity and perhaps venous return through vasomotor effects so; parasympathetic withdrawal may effect the vagus or lead to cerebral autoregulation issues as well.
Most of the peripheral blood flow abnormalities in CFS and POTS appear to relate to regional blood flow redistribution - too much blood flow in the stomach being the most common, leading to reduced stroke volume and thoratic hypovolumia, compensatory sympathetic excess or parasympathetic withdrawal and resultant changes in cerebral autoregulation.
It may help in general but CCSVI may not effect the actual problem.

Good factual knowledge. We also have to wonder why this happened. I was getting ill until meningitis hit. This is when my autoregulation went wacko (excuse the non
scientific term). they have found that our blood (whether CNS or lyme w/ babs), is sludgy. they have us take blood thinners or nattokinase/lumbrokinase.
Something started our cytokines from overreacting. but, yes, there are several people who have been diagnosed, per se, w/ lyme, who are doing well.
I know when my immune system turned. began turning until Bam! Has any MD pinpointed how to turn the active cytokine level off?

SO, back to the drawing board... everyone is saying may or may not. I guess its a hit or miss. I do have friends that after treated for lyme, have gotten SPECT scans re-done
as well as MRI's. the hypoperfusion lessoned significantly and their lesions dissapeared.

i wonder if anyone has had CCSVI on here with good, lasting results. besides the one i knew w/ the stent.

thanks for the input!