This Is MS Multiple Sclerosis Community: Knowledge & Support

I decided to contact every interventional radiologist in the state to see if they would do CCSVI. Only one responded. Here is the conversation:

ME: I had a severe neck trauma in 1988 and have since been diagnosed with MS. Could it be CCSVI (Chronic cerebral-spinal venous insufficiency)? Can you help?

HIM: Hi, and thanks for the inquiry. We are not currently offering
treatment for CCSVI at this time. If good randomized research trials
support the procedure, we may offer treatment in the future.
Personally, I hope it pans out, but I'm sceptical.

ME: Thank you for your reply. There are many people hoping it pans
out. For the sake of argument, if I had not been diagnosed with MS (leaving the terms MS and CCSVI, CTOS and CTNVS out of the discussion) and presented to you with MRV and/or Doppler imaging showing significant blockage in either jugulars or azygous veins, would you be willing to correct those blockages?

HIM: Not likely, we see jugular vein occlusion and stenosis commonly in
asymptomatic patients. There is so much collateral venous drainage
from the head that it is rarely consequential. That's why most of us
are very skeptical of venous stenting or PTA of having much effect on
venous flow dynamics in the brain.

ME: Once again thank you for your response. There are literally millions of us out there that hope you're wrong. Time will tell, but I really appreciate your sharing of your expertise.

Any thoughts?

check out www.uprightdoc.com
and his recent blog: http://uprightdoctor.wordpress.com/

Michael Flanangan, DC The Downside of Upright Posture

relatively recent Chiropractic manipulations of Atlas and C1 were the defining point in my turn for the better --doing lots else, but the chiro work was MAJOR in its impact, allowing then for the nutrients, etc to work-

I also had some severe neck and head injuries ages ago--was never able to get beyond the pain and restrictions--until the chiro work

Different IRs have different opinions. There were a number of IRs at a symposium in Brooklyn recently who felt differently! But the research will be done and we should eventually know one way or the other. Meanwhile since it's a minimally invasive outpatient procedure that has anecdotally helped thousands and that intellectually makes a heckuva lot of sense, I'm willing to discard the opinion of that IR and of my neurologist and go with the opinion of the doctors who are treating this.

I would be interested if elsewhere in the body the IR would consider the collaterals harmless or if they'd be a sign that the main vein was not properly functioning. My understanding even from reading last summer's summaries of people with Dr. Dake was that he saw the collaterals as evidence that the main vein as unhealthy.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

The IR has just written to me again:

Just to clarify. I'm not saying the treatment is wrong, just that we
need to do more research to find out if it is right or wrong before I
would feel comfortable offering it as a treatment. Central venous
stents do not last a lifetime. They develop intimal hyperplasia that
narrows the stent lumen over time and most eventually occlude. There
is a big potential downside to the procedure. We could turn alot of
asymptomatic venous narrowing into occluded neck veins harboring
nickel-titanium alloy foreign bodies.

CeCe-I will send your thoughts to him. Of course, I agree with you. I am scheduled in Atlanta for ultrasound week after next and am awaiting my date for Hubbard.

shye- Thank you for the URLs. Very Interesting.

.

Well, I like him more now, this is a valid concern. I thought we could duck the risk by opting out of stents, but Dr. Sclafani recently brought up the idea that after an unknown number of venoplasties, the vein wall could become made up of too much scar or scab tissue to reballoon.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I think the IR's thoughts are completely reasonable and are echoed by numerous other IR's which is why they aren't rushing to the front of the line to help out.

I think IR's have been taught and assumed that collaterals are sufficient for venous drainage when a main vein is blocked. Because there has not been any direct cause/effect noted, they have assumed that the collateral system was adequate. Many seem to think that your face has to be red and swollen if major vein blockages are significant. If not, you must be fine.

I think what CCSVI questions is whether symptoms take years to develop. This is a new hypothesis that has not been tested. Whether it can be replicated quickly in an animal model outside of waiting 20 years to see if symptoms develop, I don't know. We may be left with treating us and seeing if we have objective measures of the alleviation of symptoms to then be able to attribute those symptoms to the venous blockages. That's what I am hearing the treating IR's saying, they are seeing patterns of symptom alleviation. That's why they are no longer talking about PTA helping MS, they are appreciating that the symptoms that get better are due to vein blockages and PTA improves them, it has nothing to do with MS. MS may be comorbid to CCSVI or not, but we can take CCSVI and treat it and alleviate its own symptoms without any contemplation of MS... it's just that some symptoms that were earlier attributed to MS may actually be a result of venous abnormalities.

So I think this IR makes every valid point that many other doctors are also making. The concerns about stenting is clearly valid too. I think it is either in practicing PTA on the vein blockages and physically seeing the results or having results from blinded trials that will give most doctors what they need to want to get involved. The questions and concerns are good ones.

I understand why many doctors don't want to go out on a limb. It makes us admire those that have all the more. As Dr. Sclafani and others have said, these are NOT typical vein malformations, we're in a whole new ballgame now, they are learning as they go and are making up the treatment as they go along. Some doctors don't want to play until they can observe from the sidelines for a little while longer. I get it. Doctors already went to school for a long time and some just don't want to learn something new, not when they are comfortable with their practice, the degree of risk involved and their existing skill level. Not in this litigous society. Many don't want to be heroes. They just want to earn a decent living helping people out within their existing skill set.

Capt Boo & others,

You may want to check out this article - some of it goes above my head, but basically it theorizes there's a genetic link in people whose bodies are not able to compensate for inadequate blood flow with collateral bypass systems. I think that population may well include MS patients if CCSVI is a precursor.

Though the article talks about arteries, why wouldn't this also apply to veins?

Anyway, I thought it might pertain to some of your IRs concerns about the theory in general.

http://www.eurekalert.org/pub_releases/2010-05/uonc-spn052510.php


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Captboo - by chance are you in NC? This is EXACTLY the conversation I had with my local IR at CMC in Charlotte earlier this week!

Captboo - by chance are you in NC? This is EXACTLY the conversation I had with my local IR at CMC in Charlotte earlier this week!

No, I'm a thousand miles from there, but I'll keep exact location quiet for a while. It's a small state and I don't have IR's permission to reveal his name. I just thought his perspective would add to the conversation.

In my opinion, the main indicator of the issue is presence of reflux. Stenosis might not be anything by itself, collaterals might be important but reflux cannot be wrong. Dr. Sclafani said - Dr. Z is always correct. Even though that is such an absolute statement, I have started to believe this. Maybe thats the reason why Dr. Z used reflux as one the parameter.

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A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck

Cece wrote:

I get Chelation IV drips, and in the drs office have met several people who have had numerous venous drips of ozone, and the technician now can not easily find any veins in these persons to take blood from--I have been witness to this vein search--one woman said she used to have the protruding veins on her hands that older persons often have, yet you can see absolutely no veins on her (she is about 45 yrs old)--They think it is that the ozone is so caustic, it scleroses the veins--but one attendant said it is also the fact they underwent so many venous punctures. So far, no problems with my veins, but is definitely giving me second thoughts on the IV drips...

That is a find! Great counter-response to the objection that none of this is a problem because the body just build collaterals.

I agree. I'm going to print out the article for my doctors who are skeptical. It makes so much sense why a certain population would not be able to compensate for inadequate blood flow with a collateral vein system while other populations can.