Dr Zamboni said the total cost of the procedure, from start to finish could be 20 to 30 thousand dollars. Gee, that's the cost of a years worth or DMD's for one person.

I would think Medicare, Medicaid and private ins companies would save a bundle if they didn't have to pay 30 thousand dollars or more, every year for the next 30 to 40 years of a young person's treatment. Not counting the Chemo's, and Ty's cost.

We can't let this slip under the rug. We have to keep talking to the NMSS, or our doctors about it. Write to doctors doing this study in your area.

This is the first time in MS history that we have a test that showed 100 percent of PWMS have this blockage. It is our only common denominator. We are uniques in every other way but this one.

I am excited about it. What if it is a birth defect? Could it save babies from ever having this disease as they grow older?

As for climate. In warmer climates (the tropics) the blood in thinner and may not have that much of an occlusion in the veins, and blood can flow a little better. Or some may have a blockage that is not as bad as others. Like twins.
Just my thoughts and opinion FWIW.

Lady, I agree and I'm thinking as you are.

If there's blockage there, darn right I want it fixed! I'm fairly sure Canadians will have this covered under Medicare or our Provincial/Federal medical coverage. I don't believe we pay currently for an angioplasty, but I'd have to ask dear Dad about that one.

They have never had a dx tool that was foolproof, and it may be that we find some people don't even have "MS" ... should they determine this is 100% accurate for all definitive MS patients.

M is "Multiple/Many", S is "Sclerosis/scars/hardenings" ... so at it stands, the name of this disease is dependant on the evidence of these lesions. IF this procedure stops lesions from forming, but there is still a disease process going on, perhaps they will need to re-think the name of what to call it.

I believe that if the vein problem is the underlying CAUSE of MS and if they can find a permanent fix for the veins, then the disease as we know it ("multiple" "sclerosis") can be "cured". Once the damage is done already though, which for the majority of us has taken considerable TIME, we would be left with permanent disability (of some amount or another).

I envision, if this theory pans out, that they will first look for the vein problem when dxing "MS". If we have that, and they can fix it, why wouldn't MS be a thing of the past for future generations?

Cherie

Re-reading Zamboni's statement:

emphasis added. He's talking about blockages in the azygous vein, which drains from the spine, not talking about spinal lesions. Blockages in that vein happen to be associated with PPMS (not necessarily in ALL cases AFAIK), and PPMS in and of itself is not associated with spinal lesions.

Also, as we know, lesion load does not correlate with disability. However, emerging research has found that iron deposition does correlate with disability, and it is this deposition of iron that is believed to be associated with the drainage problems that CCSVI poses. Iron leaks into the brain, damages tissue, and it is that level of iron in the brain that is closely linked to how disabled a person with MS is.

I think it's important to read the studies itself, as I have noted errors in the news reporting and some of the articles commenting on the studies. It's amazing how they read one thing in a study and report something else. In one article, they mentioned Zamboni found 90% of people with MS had CCSVI. Nope. It was 100%. Every single person he has studied, even in the blinded studies, that had clinically definite MS also had CCSVI.

here's a re-link to the list of actual studies.

I'm waiting for Marc/ WC Kamikaze to have this treatment and how it helps him or one of you other trusted Friends, before saying yea or nay.

Ahh I wish I lived closer to the 'testing' locations. I didn't get an email back, probably since I live very far east in Canada, and they were swamped with people emailing them in Buffalo/Hamilton from what I understand.

One good thing about testing Dr Zamboni's theory is that the mice step will be skipped and only humans with the real disease will be targeted!! I bet we know something within the next year or so.

gmi

I really want to investigate this. I gave some info about it to my neuro when I saw him in October, but he just glanced at the info and tried to give it back to me. I was like "no. I want you to read this and investigate the information for me", and told him to keep it.

I doubt he'll do anything with the info tho.

I am going to call my regular doctor tomorrow and ask him to investigate it for me. I think I'll have more success with him researching it because his dad has MS and so did his grandmother. He might want to know about CCSVI (sp? Does anyone else think it looks like a Roman numeral?) for personal reasons, along with professional reasons.

I really want to look into any possible treatments I could get out of this. I'm not so thrilled with the possibility of taking blood thinners or having surgery, but it doesnt sound as depressing as stabbing myself with needles, or just sitting here feeling the MS take over. (having a bad week...I feel like I'm about to have a major exacerbation. Numbness in both shoulders, both arms, and my chest. It's scaring the crap out of me...stupid lesion at C4 is probably responsible, and it's ticking me off and freaking me out at the same time. I have a ton of anxiety from this.)

From what I saw during the show, those having the surgery were awake during it. It wouldn't be minor, no surgery is, but it put me at ease to see the patients awake for the procedure. I've been put 'under' for 2 other surgeries so far in my life, and I think that's scarier than the surgery itself (anesthesia).

My dad is a nurse anesthetist (the guy responsible for making sure you dont feel any pain and that you're breathing) I have anesthesia phobias because he's told me a couple of horror stories, but he's also told me about something called a BIS monitor. that can be used to monitor what level of wakefulness you have when under anesthesia.

I've already told him that if I ever need surgery for anything, and they want to put me out, that I want him to talk to the anesthetist putting me under and make sure they use a BIS monitor.

As for being awake during a surgery, I've done that once...till the anesthetist put me out because I was driving him nuts talking. (well, gee, shoot me up with a bit of Versed to relax me and what do you expect?) I was having carpal tunnel surgery, (I'd had a bier block because of my anesthesia phobia) and I was awake for a good part of it till I drove the anesthetist nuts (and probably the doctors too). At least they didnt have to put a mask over my face for it. That's part of my phobia. I'm claustrophobic and anything over my face freaks me out. He just pushed more Versed until I was asleep.

At least having an anesthetist parent has given me a bit of an idea of what to expect if I ever have a surgery, and that it's important to talk to the guy (or girl) giving the anesthesia to see if they can do anything to keep me from being scared of the anesthesia.

I just cant wait to talk to my regular doctor about the CCSVI and see what he thinks about it. I would love to at least be evaluated and maybe see if there's something they can do or give me and see if the MS improves or slows down.

I think if I call my doctor tomorrow morning, I'll just tell him that I read something about the CCSVI, and I was wondering if he could research it and tell me what he thinks about it. He wont give me LDN because he thinks it's a placebo and plus he cant get any neuros in Omaha to back him up on it. I just dont want him to have the same reaction that he had when I asked him for the LDN. (I think he thinks that I'm nuts or totally desperate. Probably true, but I dont want him to think that)