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Nola wrote:Hi Dr. Sclafani. Thank you so much for offering yourself in this way. I had a venous angioplasty procedure last summer and among other benefits I had relief from seizures for two months. It could have been a coincidence but that was the longest period I have been seizure-free for years. I am curious about whether you have any experience with the relationship of seizure disorders to venous malformations and if anyone has captured data on seizures and CCSVI procedures. Or maybe other professionals you know have some info on this? Have you seen many people with seizures in your experience, whether or not they have CCSVI? Is this something vascular surgeons deal with anyway? My neuro is thinking lately we should be looking at mito disease or leukodystrophies instead of the MS dx, but I wonder if CCSVI would still help since I still showed abnormalities on venogram. Thanks for any info.

nola
i have seen few patients with MS and seizure disorder so far in my short time treating ccsvi. a few patients have described a history of seizures as children but none had seizures as adults

NHE wrote:

NZer1 wrote:Thought no 3,
The talk about hydrocephalus is very compelling and something I believe has been mentioned by another Dr. on TiMS' some time ago.
If the blood cannot 'leave' the skull naturally, there will be signs of pressure build ups in the skull itself?
It seems that the backup of blood is occurring prior to the jugulars?

This is not intended to be a complete answer to your question, but simply a sharing of my limited understanding of the system under discussion. I leave it to Dr. Sclafani to provide a more detailed answer. Blood flow to the brain from the heart is not through a single direct artery, but through a system with many branches. If we use a simplified plumbing analogy, it is like having a pipe with a Y adapter. Suppose one branch of the Y has reduced outflow due to a restriction, the branch without the restriction will have the greater flow due to the fluid traveling the path of lower resistance. In addition, I recall that there were measurements of pressure gradients reported across stenoses. These may have been done during Dr. Dake's early work. The pressure gradients, although present, were not terribly large. I suspect that the explanation for that observation is due to a flow description like the one above.

NHE

I remember Dr. S using this analogy early on in time and I have aways thought that we forget how the brain is series of passages rather then a tank.
This to me means the the flow around the brain passages is dependent on the available exit flow.
Some passages will regularly flush and others will be stagnant in effect.
So in my thinking the flow concept is lost within the brain.
Slow flow and wall disease would surely go hand in hand.
Some where I think Dr. Zamboni showed photos of the vein walls at the stricture sites, I would like to see if the vein walls at lesion sites within the brain give indication of what is happening.
I think also from memory this is where Dr. Shelling has done some amazing discovering that was overlooked by main stream medicine back in the 80's.
The flow speed around the brain passages, health of the walls and the position of lesions forming does appear to co-inside, from my fading memory.
Hopefully some more inquiring minds can give support to the past findings.

Thanks Dr. S for your answers above as well
Regards Nigel

i have seen this with one well known MSer. I brought it to dr zamboni and we both thought, ultimately, that it was just a prominent muscle bundle, nothing more.

the report you describe is not a ultrasound report of someone being studied for ccsvi. you should get an appropriately performed exam by someone who knows how to do and interpret it.Where do you live?

They used the ultrasound protocol described here http://csvi-ms.net/files/multiple%20sclerosis-USG.pdf. I live 40 miles north of Sacramento, ca. In the small town I live in, this was unheard of until I started looking for someplace to perform the test. The radiologist and the ultrasound technician researched some prior to my arriving but I was the first they had seen or heard of as far as CCSVI is concerned.

so far no thrombi with new protocol of sizing balloons....a sigh of hopeful relief

Euhh I hope I won't break your good cycle. you treated me on feb 14, normally I don't feel my stents within my stents but it has been bothering me for more than a week now. I also feel a swallowing at the bottom end.

I know US is an easy test but I can't even get a request from my GP, he doesn't order tests that he can't interpret or kow what to do when he gets the results!!!

I may have to go all the way down to NY for a 10min test

drsclafani wrote:

soapdiva884 wrote:Just wanted to pop in and say Hi to Dr. Sclafani!!! Hi!!!!

which one is john?

Hehehehe, he is the bunny of course ;)

drsclafani wrote:

newlywed4ever wrote:
My GP said she called you but didn't leave a message because you don't identify yourself on voice mail So, instead, she called a vascular surgeon, a neuroradiologist, & a neurologist - all 3 had never heard of CCSVI ...which then led to ??s like

was my procedure done in a real medical facility,

Satriale's pork store: ask for Tony

what are your credentials

half italian, half sicilian

was there oxygen in the operating room, etc

nah, but we use the air tank from the auto body shop and spare parts store next door if we need some

THEN she took my blood pressure which was 132/88 - my usual is 100/60. On the outside, I displayed cool-headedness dignity - on the inside, I was boiling!!

dont for get the uppers we sold you on the way out the door

Dr. Sclafani, what a wonderful sense of humor you have!

Thanks for making me laugh this morning Dr.

I also feel a swallowing at the bottom end.

What does that mean, vivavie?
I am sorry to hear of trouble with the stents.

Dr. Sclafani, what a wonderful sense of humor you have!

Made me laugh too!

Sorry, not swallowing I meant swelling - I guess i was not fully awaked when i wrote that this morning

i have seen few patients with MS and seizure disorder so far in my short time treating ccsvi. a few patients have described a history of seizures as children but none had seizures as adults

My odd brother born in early 1960s into a family with what looks to me like all the genetics of CVMs, had hydrocphalus at birth. He was given one of the first venous shunts in one of his jugulars, and has lived with it since then.

BTW I have volunteered if anyone wants to do this, to have one put in mine, as I think they give patency with less chance of restenosis or thrombosis (except maybe at the ends?). Not sure if you get a valve with that.

In the last year, coincidentally, he has had adult seizure disorder. I do not guarantee anything but would love to know what his veins look like on xray. He has a definite lessened sufficiency as he is not using one of his jugs for blood at all

vivavie wrote:

so far no thrombi with new protocol of sizing balloons....a sigh of hopeful relief

Euhh I hope I won't break your good cycle. you treated me on feb 14, normally I don't feel my stents within my stents but it has been bothering me for more than a week now. I also feel a swallowing at the bottom end.

I know US is an easy test but I can't even get a request from my GP, he doesn't order tests that he can't interpret or kow what to do when he gets the results!!!

I may have to go all the way down to NY for a 10min test

Vivavie
you are a special case. I was speaking to patients without stents.

your problems stem from the damn stents.

being unable to manage your problems is great frustration to me too.

Ever think of living in NYC...lts a helluva town

Hi Johnson, Once again, I am with you. I have a problem taking zinc, it just makes me feel worse, but I dont think that is surprising as I seem to have a problem with iron, and zinc is a metal and they interreact.

I'll move this over to the "Iron gene Variants" thread as I don't want to bump up Dr.S's hits , but heres a link
to some interesting Australian research on brain iron, zinc and iron.

According to the new research, zinc—which accumulates in amyloid plaques—poisons APP ferroxidase activity. This latter is drastically reduced in cortical tissue samples taken from AD patients, suggesting that excess zinc poisons APP in AD tissue. The findings bring a lot of things together that people knew were implicated [in Alzheimer's] but didn't quite understand how they were associated. Now we can really see a big piece of the puzzle, Bush said in an interview with ARF. The researchers propose a model, based on results from in vitro, cell, animal, and human tissue studies, whereby zinc, leaching from extracellular amyloid plaques, cripples APP ferroxidase activity, causing a buildup of iron that can, in turn, lead to oxidative damage and neurodegeneration. George Perry and colleagues from Case Western Reserve University, Cleveland, Ohio, noted in an e-mail to ARF that the work suggests that APP represents a unique system, adapted to the brain, to cope with iron homeostasis, (see full comment below).

[/url]http://www.researchals.org/page/4746/5786/0/13/[url]

PS: The only tests for hemochromatosis are the std C282Y H63D and maybe the S65C if you are lucky. The dozens of other genes connected to iron metabolism are not tested routinely YET.

[/url]

Dr. Sclafani,
I believe stenosis is caused from something(bone or muscle) putting pressure on the vein. Have you seen stenosis at one section of the vein but when you went back in a 2nd time, seen stenosis at a different position of the same vein? why is it that almost every MR scan ive seen shows either a pinched vein or looks like the vein is getting pressured to close, from only 1 side of the vein?

Thanks

Cece wrote:

I also feel a swallowing at the bottom end.

What does that mean, vivavie?
I am sorry to hear of trouble with the stents.

Dr. Sclafani, what a wonderful sense of humor you have!

Made me laugh too!

You think he's funny? Funny how? Does he amuse you?

drsclafani wrote:

newlywed4ever wrote:
My GP said she called you but didn't leave a message because you don't identify yourself on voice mail So, instead, she called a vascular surgeon, a neuroradiologist, & a neurologist - all 3 had never heard of CCSVI ...which then led to ??s like

was my procedure done in a real medical facility,

Satriale's pork store: ask for Tony

what are your credentials

half italian, half sicilian

was there oxygen in the operating room, etc

nah, but we use the air tank from the auto body shop and spare parts store next door if we need some

THEN she took my blood pressure which was 132/88 - my usual is 100/60. On the outside, I displayed cool-headedness dignity - on the inside, I was boiling!!

dont for get the uppers we sold you on the way out the door

LOVE it! Wish I had been as witty - after all, I'm already labeled as "non-traditional" (which I choose to take as a compliment!)