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Dear Dr. Sclafani,
I just need to tell you I think I did a really stupid thing. I had a venogram done by an FSIR in Phoenix on Wednesday. He did not do a doppler. The MRv I had done on 4-15-10 shows stenosis on my right jugular according to 3 different docs but the IR who did the venogram said he saw absolutely nothing wrong anywhere. I've had MS for 23 years and my mobility continues to worsen so I panicked and went to the first IR who gave me an immediate treatment date. I just couldn't wait and it was too tempting because he took my insurance. Do you have any recommendations for me at this point. I'm on waiting lists from coast to coast including yours.
Best regards,
xcargrl

RedfernTO wrote:HockeyDad

I heard a rumour there will be a treatment trial in Barrie sometime soon. Who knows if it is true. Since there are hundreds of people ahead of me in ne I am not holding my breath...

HockeyDad: Yes, Dr. Sandy McDonald is attempting to secure approval for a study in Barrie Ontario. He does not have a date yet, but is hoping it may be this fall. See www.barrieexaminer.com for more details about Dr. McDonald. He has also been quoted in McLean's, Toronto Star, CTV, etc.

Dr. McDonald is currently testing at Barrie Vascular Imaging. A referral from a physician is required.

Dr. S, could you weigh in on this? My laypersons eyes say this is clearly known and could have a connection to CCSVI. Direct from the NIH's National Institutes Neurological Disorders and Strokes.: NeuroArteriovenous Malformations and Other Vascular Lesions of the Central Nervous System Fact SheetSkip secondary menu. Although AVMs can develop in many different sites, those located in the brain or spinal cord—the two parts of the central nervous system—can have especially widespread effects on the body.
AVMs of the brain or spinal cord (neurological AVMs) are believed to affect approximately 300,000 Americans
AVMs also can cause a wide range of more specific neurological symptoms that vary from person to person, depending primarily upon the location of the AVM. Such symptoms may include muscle weakness or paralysis in one part of the body; a loss of coordination (ataxia) that can lead to such problems as gait disturbances; apraxia, or difficulties carrying out tasks that require planning; dizziness; visual disturbances such as a loss of part of the visual field; an inability to control eye movement; papilledema (swelling of a part of the optic nerve known as the optic disk); various problems using or understanding language (aphasia); abnormal sensations such as numbness, tingling, or spontaneous pain (paresthesia or dysesthesia); memory deficits; and mental confusion, hallucinations, or dementia. Researchers have recently uncovered evidence that AVMs may also cause subtle learning or behavioral disorders in some people during their childhood or adolescence, long before more obvious symptoms become evident.
One of the more distinctive signs indicating the presence of an AVM is an auditory phenomenon called a bruit, coined from the French word meaning noise. (A sign is a physical effect observable by a physician, but not by a patient.) Doctors use this term to describe the rhythmic, whooshing sound caused by excessively rapid blood flow through the arteries and veins of an AVM. The sound is similar to that made by a torrent of water rushing through a narrow pipe. A bruit can sometimes become a symptom when it is especially severe. When audible to individuals, the bruit may compromise hearing, disturb sleep, or cause significant psychological distress.
Symptoms caused by AVMs can appear at any age, but because these abnormalities tend to result from a slow buildup of neurological damage over time they are most often noticed when people are in their twenties, thirties, or forties. If AVMs do not become symptomatic by the time people reach their late forties or early fifties, they tend to remain stable and rarely produce symptoms. In women, pregnancy sometimes causes a sudden onset or worsening of symptoms, due to accompanying cardiovascular changes, especially increases in blood volume and blood pressure.

One one the things that is notably different with MS (as opposed to AVMs) is that many, many women report that they felt better during their pregnancies. In my case, I had my first MS symptoms before I was pregnant and was diagnosed after. I have rarely felt better than when I was pregnant.

I never heard of AVMs before but the similarity to MS is uncanny. Of course, they are both neurological so that would explain. I wonder if an angioplasty could resolve the situation. I'm curious to hear what Dr. Sclafani will say.

Yes that's true about pregnancy, but the same reasoning may apply. Either outcome is due to "increases in blood volume and blood pressure." which, in the case of an arterial malformation, may worsen the problem, where in the case of a vein malformation, they may improve it. Or the situation may be more complex than that. Malformations are not generally text-book predictable, though in CCSVI some seem more common than others. But the two diseases do sound similar (AVM and CCSVI). The malformations (also described by Zamboni) cause insufficiency (slow transit, hypoperfusion, hypoxia, autoimmunity, etc.).

What treatment does NIH recommend?

To Redfern...
Yes, I too did great when I was pregnant (3x). The pregnancy thing and the indication that AVM occurs equally in men and women...these are the only two items that differ from CCSVI/MS.
The rest of the similarities are blowing my mind. I feel like I struck gold when I found this!
The other item 'the rhythmic, whooshing sound caused by excessively rapid blood flow through the arteries and veins of an AVM. ' stopped me dead in my tracks. I have this pulsing sound in my left ear that I felt might be the CCSVI...and now I'm reading this about AVM.
I'm sure Dr. Scalfani is busy getting ready for his Symposium tomorrow but I hope he happens to pick up on this here....
I'm crying with joy.

Here is the NIH link for Arteriovenous Malformations and Other Vascular Lesions of the Central Nervous System Fact Sheet
(not sure if I copied correctly but you could just google to find NIH and AVM) It's a good read!
http://www.ninds.nih.gov/disorders/avms ... #140203052

We've discussed AVMs here a few times, maybe do a search for some of that? An AVM is a tangle of the incoming artery and outgoing vein, so it occurs in a high pressure zone. CCSVI is a condition in the draining veins alone, no artery involvement, in a low pressure zone. There are similarities and there are differences. Any disorder, from a stroke to an avm to ccsvi, that affects blood flow to or from the brain is serious.

I've been wondering the opposite about pregnancy, actually. I've heard that sometimes people with MS feel great while pregnant but I felt awful awful awful! My thought was if physical compression comes into play. As the uterus grows, is it pressing on the iliac veins? Is it pressing on the azygous?

I think the main difference is that in CCSVI there is a decrease blood flow in the brain and in AVM there is a leakage of arterial blood into the venous system with resulting increase in blood flow.
Sometime the problem is fixed by neuroIR by placing a coil where the leakage is which blocks the arterial-venous fistula.
So I do not see much of a similarity other that both affect the brain.

To CeCe
Thanks for pointing out the key difference.... I was fixated on the similarities!
The correlation of venous malformation to the outcome of neurologic symptoms nearly identical to MS speaks volumes. Diag. since 96 and never has a Neuro mentioned this possible connection...and I've seen many!

cmozena wrote:To CeCe
Thanks for pointing out the key difference.... I was fixated on the similarities!
The correlation of venous malformation to the outcome of neurologic symptoms nearly identical to MS speaks volumes. Diag. since 96 and never has a Neuro mentioned this possible connection...and I've seen many!

I think others are missing the point you may have been trying to make though, cmozena ... the point is that a vascular condition (AVMs) are producing the exact same symptoms as an " "autoimmune" disease of unknown origin" - errrrrrrr, or I mean another vascular condition (CCSVI).

Anyway, there's no way the symptoms of MS could be caused (or relieved by relieving venous malfunction) according to some on this board. (and some neurologists, the MS societies, and idiot bloggers as well).

Let's focus on the symptoms, and venous two diseases AVMs and CCSVI ...

CCSVIhusband wrote:

cmozena wrote:To CeCe
Thanks for pointing out the key difference.... I was fixated on the similarities!
The correlation of venous malformation to the outcome of neurologic symptoms nearly identical to MS speaks volumes. Diag. since 96 and never has a Neuro mentioned this possible connection...and I've seen many!

I think others are missing the point you may have been trying to make though, cmozena ... the point is that a vascular condition (AVMs) are producing the exact same symptoms as an " "autoimmune" disease of unknown origin" - errrrrrrr, or I mean another vascular condition (CCSVI).

Anyway, there's no way the symptoms of MS could be caused (or relieved by relieving venous malfunction) according to some on this board. (and some neurologists, the MS societies, and idiot bloggers as well).

Let's focus on the symptoms, and venous two diseases AVMs and CCSVI ...

Okay, I definitely fit many of the symptoms for AVM. Including the fact, my cognitive abilities have declined.

So, why is it my neuro never suggesting testing for AVM? This is an accepted condition correct?

Also, would people with AVMs still have O-bands? (I do)

Thnx.

http://emedicine.medscape.com/article/1160167-overview (re AVM)

selkie wrote:So, why is it my neuro never suggesting testing for AVM? This is an accepted condition correct?

I think it presents differently: hemorrhages and seizures.
As opposed to MS: sudden neurological deficits.

But it shares some of the lesser symptoms (cogfog etc?).

Once suspected I believe an AVM is easy to find, it can be imaged.

xcargrl wrote:Dear Dr. Sclafani,
I just need to tell you I think I did a really stupid thing. I had a venogram done by an FSIR in Phoenix on Wednesday.

It's only unfortunate because it turned out this way...it could've been brilliant, had the IR found a stenosis and fixed it. It might help to know if you are covered by insurance or if you paid oop? Will your insurance allow for a second opinion?