Truncular Venous Malformation Facts- PAPER ONLINE NOW!!!!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Truncular Venous Malformation Facts- PAPER ONLINE NOW!!!!

Postby cheerleader » Wed Jun 09, 2010 10:54 am

Dr. Zamboni and a panel of 47 international vascular doctors have classified the lesions found in CCSVI as truncular venous malformations. Here are some medical facts about these lesions:

1. Venous malformations are present at birth, and grow with the child.
2. At times, malformations will remain dormant and then experience a sudden increase in size during puberty.
3. Isolated malformations tend to be localized to a defined anatomic area, and are not associated with other anomalies.
4. Symptomatically, it is the location of the venous malformation that determines the nature of the patient's complaints, and the size or extent that determines the severity.
5. Typically, venous malformations present early in life. However, it is not uncommon for venous malformations to present for the first time in the
adult patient. There are many case reports that have documented the sudden appearance of a previously unrecognized venous malformation.
This behaviour has been attributed to mechanical or hormonal factors. pressure or flow changes related to mechanical forces, such as trauma, could reactivate dormant angiopoietic cells and stimulate endothe-
lial cell growth.
6. The concept that female hormones can modulate endothelial growth in venous malformations is supported by the higher incidence of venous malformations in female patients and their rapid growth at the onset of puberty and during pregnancy.13

http://phleb.rsmjournals.com/cgi/reprint/22/6/264.pdf
Last edited by cheerleader on Thu Jun 10, 2010 10:12 am, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby thisisalex » Wed Jun 09, 2010 1:35 pm

amazing facts again, Cheer!
especially the female hormones stuff...
another piece in the puzzle
thank you!
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Postby zinamaria » Wed Jun 09, 2010 2:11 pm

cheer, this is invaluable information from you, as always. Do you know anything of the pregnancy hormone (don't know the name) that supposedly is being administered as an MS therapy and is effective with halting symptoms?
Thanks again,
Zina
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Postby Daisy3 » Wed Jun 09, 2010 2:22 pm

Prolactin according to a quick search on google.
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Postby garyak » Wed Jun 09, 2010 3:12 pm

This is great info Cheer, scientifically categorizing these malformations is another strong spoke being added to this fast spinning wheel.
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Postby cheerleader » Thu Jun 10, 2010 10:14 am

HERE'S THE PAPER---

From the Vascular Experts--
WITH PICTURES

http://www.fondazionehilarescere.org/pd ... 8-ANGY.pdf
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby shye » Thu Jun 10, 2010 5:09 pm

Abstract
The truncular venous malformation (VM) represents an embryologically defective vein where developmental arrest has occurred during the vascular trunk formation period in the 'later stage' of the embryonic development. A relatively simple truncular VM lesion such as a venous web at the hepatic venous outlet causes portal hypertension giving a profound damage/impact to the liver. A similar condition involving the head and neck venous system may cause chronic cerebro-spinal venous insufficiency (CCSVI) and may be involved in the development or exacerbation of multiple sclerosis.

Budd Chiara has been around a long time--hence the research. But note that this article is just postulating that a similar condition MAY be implicated in CCSVI--we have a long way to go still...
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Postby judipom » Thu Jun 10, 2010 5:17 pm

:D Thanks for posting Cheer. Judi
RRMS Diagnosed 1997
My house burned down, now I can see the moon.
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to cheerleader

Postby hwebb » Sat Jun 12, 2010 4:52 pm

Cheer,

this embryological paper has done so much to help me understand my most troubling symptom, recurring temporary amnesia (page 4 of paper).

Every month or two I lose my short-term memory for about 3 days. In the days preceeding these episodes, I actually feel increasing pressure at the place in my head where I received my first balloon angioplasty procedure (junction of my left internal jugular, and transverse sinus). So likely I have an incompetent valve issue. I'll have another balloon angioplasty at the end of the month.

I was concerned that these amnesia events may be related to demyelination - though they have increased since I commenced my anti-demyelination drug. And none of my "demyelination symptoms" (such as sensory changes, numb fingers etc) increase during these amnesia attacks.

My neuro is keen for me to use stronger immune-system control because of these regular episodes of cognitive impairment.
Hell no!
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Postby HappyPoet » Sun Jun 13, 2010 3:56 am

Hi hwebb,

hwebb wrote:Every month or two I lose my short-term memory for about 3 days.
I'm so sorry to learn that your "most troubling" symptom is recurring temporary amnesia -- I hope you're finding ways to cope and handle the situation. I think I'm heading in that direction (right now it's hours lost rather than whole days lost) and was shocked to read your post, to learn that someone else with MS and CCSVI has this particular symptom, too.

What really shocked me, though, was to learn that you had trouble involving your left transverse sinus -- segments of my left transverse sinus are absent... this intracranial malformation is not considered in my diagnosis of CCSVI because Dr. Zamboni defines CCSVI as being only extracranial venous issues. I'm very impressed that you found a doctor to perform any kind of procedure that close to the brain (if not partially in the brain?) May I ask what type of doctor performed your balloon angioplasty?

So likely I have an incompetent valve issue. I'll have another balloon angioplasty at the end of the month.
I'm also very sorry that you have to go back again for another attempt, but sometimes it does take more than one widening for a vein to withstand future recoil. Sounds like your doctor knows what's going on, so I will trust that you're in good hands... no, make that great hands! (I didn't even know there's a valve at that junction -- I never thought to ask.)

I was concerned that these amnesia events may be related to demyelination - though they have increased since I commenced my anti-demyelination drug. And none of my "demyelination symptoms" (such as sensory changes, numb fingers etc) increase during these amnesia attacks.
It's so hard to know what might cause MS- and/or CCSVI-related memory loss, of which amnesia is the most extreme example... BBB breach, iron deposition, inflammation, demyelination, lesion formation, axonal loss, atrophy? OR, could memory loss somehow be due to the disrupted blood flow in the dural sinuses?

So many questions... Are there any memory areas in the vicinity of the L-TS? Or, are there any memory areas along the veins that drain into the L-TS? Or, ... near the junction of the L-TS and the L-IJV? Or, or, or??? I think I'll try to read more of Dr. Schelling's work -- he discusses the impact venous troubles could have on different parts of the brain and spinal cord (e.g., central fever due to reflux actually splashing up against the hypothalamus).

I wish you the best of luck. Thank you for posting -- I hope you're on the Tracking thread sticky. I'd like to follow any/all updates you make.

Hoping you have a great day,
~HappyPoet
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Re: to cheerleader

Postby costumenastional » Sun Jun 13, 2010 7:48 am

hwebb wrote:My neuro is keen for me to use stronger immune-system control because of these regular episodes of cognitive impairment.
Hell no!


...you say...and i hear you :)

Thanks for the paper Cheer.
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Postby cheerleader » Sun Jun 13, 2010 9:29 am

HWebb-

Please speak to your doctor about Transient Global Amnesia (TGA) and all of the recent research showing a connection to jugular valve insufficiency. You should be able to find 20 or so papers on PubMed....there is a direct correlation being documented in the past 5 years. Hope that helps-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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:)

Postby hwebb » Sun Jun 13, 2010 2:55 pm

Happy Poet,

I was asked recently how I cope with the regular temporary amnesia. I told the person I cope because I've had to...because I've had no choice. I'm not like this all the time...just about 3 days per month (it's temporary amnesia). I make good use of my time on the days when I'm well.

The doctor who treats me is an interventional radiologist, and this is familiar terrain for him. When I told him I was worried about treatment as this area is so close to the brain, he said "I'm not going anywhere near the brain, I will stay inside the vein....at this is what I'll do....". Then he drew pictures and explained.

I usually post in the "Aussie Action" thread, but just search for postings under my name if you're interested in my experiences pre/post treatment. I'm getting my 2nd procedure on June 30.

One thing I can do to help myself...relax more. Accoridng to the papers on this, anxiety leads to hyperventilation, which leads to valsalver manouvre, which leads to reflux and vasocontriction, which leads to temporary amnesia if you have this jugular problem.

Cheer - I have told my neuro and IR about this troubling symptom. Neuro's response is to recommend immune-control drugs. IR's response is to work on my jugular :). I've given the papers over to the IR. I haven't given them to the neuro yet as his mind has closed. Maybe I shouldn't give up on him (ironic that a braindamaged person is able to think more laterally than a neuro).
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Postby Rose2 » Sun Jun 13, 2010 6:50 pm

Cheer, thank you again for the continuing education. This is a great article. Sincerely, Rose ;)
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May is crucial word

Postby MarkW » Mon Jun 14, 2010 3:23 am

Please, please, please read this paper carefully, it says:

"A similar condition involving the head and neck venous system may cause CCSVI and may be involved in the development or exacerbation of MS."

Shye wrote: we have a long way to go still... ,I agree.

If we hype these useful papers the neuros will use this hype to rubbish the CCSVI case. There is initial academic data to try venoplasty for CCSVI de-stenosis. Each of us has to make this choice based on initial data, not on proven scientific information. Absolute proof could take 10 years to produce.

Science should be logical not emotional. That is why the negative neuros can be beaten. Please do not use hype the same way they do.

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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