This Is MS Multiple Sclerosis Community: Knowledge & Support

My apologies if this question has already been asked.

My understanding is that balloon angioplasty is a technique that has been used for decades to expand arteries and veins in many other areas of the body.

In the past, as each new location within the body for using balloon angioplasty to treat a condition was begun, were clinical trials required? Was IRB approval required? Were doctors initially prevented from doing the procedure at a new anatomical location?

Or is this a unique process that is happening with CCSVI and MS?

I had an mrv w/ contrast on friday of my head, neck, and upper chest. had gone to see an intervemtional radiologist at a large teaching hospital. i had already had an mrv w/o contrast when i went to see him and he said my jugulars looked a bit small to him. enough to make him want to see more and with contrast. His nurse gave me the results today. She said he did not see any narrowing. I broke down after her call. I am very disappointed. Is there any point in having a doppler?

I also had an MRI of my heart about a wk ago just to see what it would show. I work in radiology so i got to have it as a test pt. The radiologist i work with saw an area in my heart that was dark. He said this means there is turbulance there and that usually means there is a narrowing. Could this in someway be related to ccsvi?

Would love some advice. Thank you.

I have been asking this same question, and have not gotten a good response yet. I supose the hospital administrator or whoever gives permission to do a particular procedure (Not all hospitals allow their doctors to do all procedures depending on abilities and equipment and the like). If the procedure had no known benefit, I supose the adminstrator could forbid doctors at that hospital from doing that procedure (I suspect this is what hapended at Stanford). Totally new procedures or experimantal procedures go through the IRB I think.

Angioplasty is a very safe procedure. New uses for an accepted and safe procedure should not be a big problem. Inadequate circulation in the brain is something that it seems to me should be releived if we know how.

Somehow because it has become associated with treating MS we are angsting over it.

We need to do studies to get information, but we should also offer the angioplasty to people with CCSVI if they are not participating in a study.

Couldn't agree more. "But oh there was a death"...which is beyond tragic, if you read back in the history of the forum you can get a sense of what kind of person Holly was...it just seems like the current excess of caution is blowback from that early riskiness and resultant tragedies.

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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

Stents and angioplasty are dramatically different, and I think that the only two adverse events were with stents but I am not sure. The death was because of the warfarin anti-clotting drug, and I am not sure that the regime is the same for angioplasty and for stents, but I don't think so. I also am pretty sure that the person who died was pursuant to a stent treatment.

I think no adverse events resulting from angioplasty.

Correct me if I am wrong.

you are preaching to the choir ... the risks are being exaggerated in the media, hospital admins are as susceptible to fear and misdirection as anyone else, stents and angioplasty are conflated as if we are all flocking off to get this dangerous procedure...ugh.

On another note, when it comes to trials, isn't skill of the doctor another confounding factor? Even if just one doctor does all the procedures, as DrS is planning to do in his safety study, the results will be better or worse depending on that particular doc's skill. So when you try to reproduce the results, the next doctor may be more or less skilled, and you get different results...as contrasted with a drug trial, where the drug at least stays the same from one trial to the next.

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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

Just to update on the fantastic work by Squeakycat. The questionnaires are being formatted so that they can be done on line. This is coming along well. I think it will be important for as many of us as possible to give feed back on this questionnaire. Could you also look at two others and give some feedback.

http://www.medhelp.org/user_trackers/ne ... osis&user_

http://www.patientslikeme.com/home

My early thoughts are that we would benefit by using all three as the broader the coverage the more subtly will reflect in the total outcome. To cover all the bases of our disease the use of all three would give a wider insight to the status at any given point. The self assessment in my view is a good tool as there is no other that can cover such a spectrum of symptoms at near zero cost. Yes there will be people who will challenge the self assessment and I believe that if the questionnaires are repeated regularly, maybe weekly, that the stats will be reliable.
************BIG thanks to Sqeakycat*******************

Patientslikeme is a for-profit venture. They sell your info to pharmaceutical companies. I don't want them profitting from my information.

Fair comment, maybe you missed my point.
We need tools to measure with and the concept is the important part. I am of the view that what ever is used to assess the progress of treated patients will be property of the patient and provider rather than for the benefit of any other leech.

Angioplasty does have risk. It is possible for the vein to burst. I have heard of this happening during heart artery angioplasty.

Another risk is that the vein in the groin that that catheter goes into could collapse or burst. (Don't know if I'm using the correct terms). My own mother had this happen during a heart cath. She lost massive amounts of blood and had to be hospitalized for a week to recover.

No procedure that is invasive should be taken lightly, or minimized.

Another thought bestadmom,
You could sell the information to offset expenses somewhere along the way, confidentiality protected of course? or for personal profit! if that works for you.

NZer1,

Boy do I wish I could profit from this stuff, but it's not my style. I'm the one who will pay thru the nose time and again, while I sit on the sidelines watching the other guys make a killing.

When I first saw patientrslikeme, I couldn't figure out how that could build such strong communities and not monetize their investment. I did some digging on the corporate part of the site and the answer was there.

I agree that we need as much info as we can collect, but let's hand it to the good Dr. S on a silver platter. He's not getting rich on us, and he's giving us 20+ hours a day of his time. We are very lucky to have him on our side.

Absolutely some risks. Relatively low risk, though. Burst veins are far less of a problem than burst arteries, though. However, I am not sure, but I would suspect that veins have weaker walls so may be more likely to burst. The walls are move flacid, though, so may be less likely. Not sure. Still is relatively low risk.

For me the procedure risk was less than the suicide risk...

I would have done it even if the risk was very high.

That is just me, I prefer to take the chance to have a life than living with no life!!!!

My neuro does not understand that ... you know when you have a relapse and try to get a hold of your doc how hard that is, well HE CALLED me when he heard I was going to Poland to tell me NOT to go!

I wish all doctors had as much empathy as you Dr S

Question: In Poland they could not get into my azygos. They tried with 3 differents catheter sizes. 90 minutes later, their conclusion: the valve is working properly which means the valve is probably OK.

What do you think of that? Should I pursue having this check again?

I have a stent in the left jugular - malfunctionning valve.
I feel better but I am still tired and in pain 24/7 (legs and feet) but no more stiffness or crocky walking.
Thank you