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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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newlywed4ever
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PostPosted: Sat Apr 09, 2011 6:22 pm 
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[/quote]

get a simple compression ultrasound to look for blood clot now.[/quote]

Update: got the simple compression ultrasound (although it was not "simple" to do so in Michigan's U.P.) and no blood clot was found - hurray! I am told it looks like a swollen lymph gland. Thanks Dr S and everyone else![/quote]

called today. spoke to a non-physician. they never called me back

so relieved that this was a swollen gland..do you have a sore throat?

glad it wasnt a thrombus. so far no thrombi with new protocol of sizing balloons....a sigh of hopeful relief[/quote]

No thrombus in anyone so far - wonderful news!! Re: sore throat...I always have a semi-sore throat...I just chalk it up to wood heat :?

My GP said she called you but didn't leave a message because you don't identify yourself on voice mail :roll: 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, what are your credentials, was there oxygen in the operating room, etc. 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!!
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Rokkit
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PostPosted: Sat Apr 09, 2011 6:40 pm 
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drsclafani wrote:
time is brain.....time is knowledge

I don't believe the conundrum can be put any more succinctly than that. :D
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Cece
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PostPosted: Sat Apr 09, 2011 8:38 pm 
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drsclafani wrote:
Johnson wrote:
Having had PTA a couple of times (and soon, for a 3d time with our good Dr, Sclafani),


more pressure . :cry:

Wheelchair Kamikaze too.... ;)
But you are good under pressure, as I recall.
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NZer1
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PostPosted: Sat Apr 09, 2011 10:12 pm 
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Hi Dr.S,

I have just been catching up on the posts over the last 10 or so pages and notice that the vein wall damage is a problem that is being well thought through and the use of IVUS for people with the skill to read it will be priceless.
Is it possible that the vein (wall) size where it looks 'stretched' above a valve problem could be or end up like vasculitis, or become an area of 'diseased wall' that could have an effect on the BBB because of the weakened wall?
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NZer1
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PostPosted: Sat Apr 09, 2011 10:18 pm 
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Thought no 2.
If the vein walls have stretched/weakened in the jugulars and azygos then what is happening in the vein walls within the brain. Is it likely that the BBB leakage is happening within the brain because of the stricture within the vein/brain?
No room to expand within the skull structure other than fluid space in the CSF possibly weakening the vein walls because of back jets, reflux, hydrocephalus?
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NZer1
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PostPosted: Sat Apr 09, 2011 10:21 pm 
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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?
The mixed results from treatments could be an indication of a problem that is within the skull *and also external of the skull (two parts to the same problem)?
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NZer1
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PostPosted: Sat Apr 09, 2011 10:33 pm 
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Thought no 4,
The diet change for most but not all have shown benefit, could it be when there is disease of the vein wall progressing to restrict the blood flow as well as valve issues and internal brain wall issues restricting flow and weakening of the BBB. Diet change sort of gives reason to the improvement of diseased or injured vein walls?
The vitamin D level improvements by supplementing could also be reason for improved vein wall barrier quality when the wall has been stretched.
Trauma is another good way to stretch veins in MS patients, whip lash and in my case sport and work injuries to the neck, all the conditions for damage and forming strictures through a healing process, like the scars forming from large ballooning.
Multi faceted causes to the same outcome, progressive de-generative disease.
Thoughts?
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NZer1
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PostPosted: Sat Apr 09, 2011 10:34 pm 
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Thought no 5,
What do you think of Dr Zamboni's collar?
Is it going to be useful other than as a dx tool to use on naysayers?
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NZer1
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PostPosted: Sat Apr 09, 2011 10:36 pm 
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Last question, for now :D
We have recently been made aware that we have a Phlebologist, Vascular Surgeon, Dunedin, New Zealand
André M van Rij is Professor of Surgery at the Dunedin School of Medicine University of Otago where he directs the Vascular Research Unit. His research has focused on venous disease and the biology of varicose vein recurrence and venous thrombosis. His translational research bridges new basic research into the venous clinic. Professor van Rij is a vascular surgeon and President of the NZ Association of General Surgeons. Professor van Rij is the Deputy Chancellor of the Australasian College of Phlebology.
The Professor has just attended the Melbourne Australia conference where Paulo was speaking!

*****Have you heard of Prof. van Rij?


Regards Nigel.
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NHE
PostPosted: Sat Apr 09, 2011 11:05 pm 
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drsclafani wrote:
NHE wrote:
Cece wrote:
tzootsi, that caught my attention! If you follow tzootsi's link, quick summary is that Vitamin D3 is bad after an endovascular procedure (if you are a rat) because it increases the amount of intimal hyperplasia. Eeep.


That study looked at arteries. A good question would be does vitamin D3 cause the same problem in veins?


NHE


yes, if i were in the university i might take some energetic student to work on this

i suspect that intima would react similarly


I retract my question. Jimmylegs has recently made it clear that rats are a poor model for studying vitamin D3.

http://www.thisisms.com/ftopicp-160132.html#160132


NHE


Last edited by NHE on Sun Apr 10, 2011 4:11 am, edited 1 time in total.

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10yearsandstillkicken
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PostPosted: Sat Apr 09, 2011 11:10 pm 
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Hi Dr. Sclafani,
I had a Doppler ultrasound about a year ago that showed my right IJV was narrowed. The report:
Quote:
Jugular Vein Supine Position:
Proximal. Right Diameter (cm) 1.1 Left Diameter (cm) 0.87
Mid. Right Diameter (cm) 0.99 Left Diameter (cm) 0.71
Distal. Right Diameter (cm) 0.96 Left Diameter (cm) 0.76
Upright position:
Proximal. Right Diameter (cm) 0.29 Left Diameter (cm) 0.39
Mid. Right Diameter (cm) 0.32 Left Diameter (cm) 0.24
Distal Right Diameter (cm) 0.30 Left Diameter (cm) 0.23

Right: There is abnormal turbulent flow with high amplitude, bizarre Doppler wave flow pattern throughout the right jugular and vertebral veins. Mid right jugular vein shows narrowing on some of the sagittal images, not seen on transverse. However, there appears to be a prominent layer of muscle fibers along the mid portion of the right jugular vein on all images. Veins collapses on upright position.
Left: Jugular veins shows normal phasic Doppler signal. No reversal of flow. The valves are patent and there is good compression throughout. The vertebral veins is normal. Veins collapses on upright position.

IMPRESSION:
1. Abnormal flow in the right jugular vein suggests some reversal of flow. A prominent layer of muscles along the mid portion of the right jugular veins. The right vertebral veins show abnormal Doppler flow as well. Correlation with MRV may be beneficial.
2. The left jugular and vertebral veins show normal phasic Doppler low.

The technician asked me to take a deep breath while scanning my right jugular. The vein opened some while taking a deep breath while remaining narrowed while breathing normally. In your opinion, would this indicate the layer of muscles is the cause of the narrowing and that ballooning not a solution in my case? I have a couple images https://picasaweb.google.com/105246064577496874688/Question?authkey=Gv1sRgCJiV-6Oazb7CTQ#. Should I get another test, other test to confirm before ballooning?

_________________
Chuck
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NHE
 Post subject: Re: blood flow
PostPosted: Sun Apr 10, 2011 1:46 am 
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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
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Liberation
PostPosted: Sun Apr 10, 2011 3:49 am 
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NHE wrote:
drsclafani wrote:
NHE wrote:
Cece wrote:
tzootsi, that caught my attention! If you follow tzootsi's link, quick summary is that Vitamin D3 is bad after an endovascular procedure (if you are a rat) because it increases the amount of intimal hyperplasia. Eeep.


That study looked at arteries. A good question would be does vitamin D3 cause the same problem in veins?


NHE


yes, if i were in the university i might take some energetic student to work on this

i suspect that intima would react similarly


I retract my question. Jimmylegs has recently made it clear that rats are a poor model for studying vitamin D3.

http://www.thisisms.com/ftopicp-160132.html#160132


NHE


Researchers do use mice and rats when they are examining relations between MS and D3 defficiency. So, I think it should be more carefully examined in this case as most of us are taking D3 suppliments. There are also too many scarring issues that we hear about.
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munchkin
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PostPosted: Sun Apr 10, 2011 7:28 am 
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Hi Dr.Sclafani

Is there anything that can be done for those of us who have had our veins narrow due to the actual procedure?
Is a repeat venoplasty a realistic option based on the results of the first procedure?
Thank you for any information,
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bestadmom
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PostPosted: Sun Apr 10, 2011 7:30 am 
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drsclafani wrote:
Cece wrote:

I am looking for bestadmom's countdown thread, I do not see one anywhere! I am counting down anyway. Full of hopes. :)


another round of pressure :cry:


Pressure for us both! Yours in terms of outcome, mine in terms of atms in my veins.
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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