Thanks, Keri. I went over there and read about 10+ patient reports of their before and after results of the procedure and most of them have only had subtle improvements, but in some cases, it is too early to tell??

They did report some neck and shoulder pain due to the procedure, lasting about 2+ months.

There was one 100% positive report of, "my MS is gone".. She had the procedure about a year ago..(the longest)

It didn't look quite as positive as I expected, but time may change my mind.:confused:

Here is the link to the reports...
http://www.thisisms.com/ftopict-8346.html

Great
 

This would be awesome but no more false promisses.After all the disappoitment of MBP8298....another miracle crash and burn.The last letter from that study is that my drivers licence could be taken.Watch for studys its a very lonely thankless job! Jim:(

CCSVI in Multiple Sclerosis
 

Just joined Neuro Talk. I find this CCSVI discovery amazing. Is there suggested methods towards fast tracking this procedure? :cool:

If you find them, let me know! :) I called my GP today and made an appointment, but the secretary said that to see a vascular doc will require referral. I'm not sure the waiting list here for vascular specialists.

Won't see my GP till Dec. 18 as it is.. I may call offices of vascular doctors regardless of GP and run it by several secretaries.

I'm skipping my neuro on this and letting HIM call me if he catches on, since my last words in his office were "contact me if there's a big breakthrough or orals become available". We'll give him time though :p

Welcome to Neurotalk Kazzman, nice to meet you :hug:

Welcome to NT Kazzman!

Not sure about the fast tracking. I would think the pharmaceutical companies would put up a pretty good fight against that since they may lose lots of $$$$'s. Sadly, it's not about the patient.

Sally, I think some people aren't necessarily viewing CCSVI as the "cure" in terms of eliminating all symptoms but as a way to stop MS progression. In other words, for some people they just want to remain stable where they are and not get worse. Whether or not the brain can repair itself after the damage is already done and the veins are opened up after the procedure is another story. I've been reading a lot on thisisms.com about CCSVI for the past few months. You are right that nothing really "miraculous" is jumping out but people are reporting improvements in fatigue (no more napping), cognition, reduced spasticity, ability to walk longer without resting. The doctor at Stanford has only been doing this since May. I guess time will tell! :)

I forgot to add that the MS Society of Canada just announced today they will give out research grants to study CCSVI. That is really significant stuff!!

http://www.mssociety.ca/en/releases/nr_20091123.htm

Also check out: http://www.mssociety.ca/en/research/...091021_faq.htm

This is also completely awesome. Go MS Society!

Like you mention, I've accepted I'll likely live in pain I already developed for many years to come, but I want to prevent further damage.

Hey... think maybe the MS Hug is actually this restriction of flow in the neck veins? I thought of the Hug right away. .. ... :eek:

Thanks, Natalie.:)

We are not all of one type of MS, so, Maybe this is the one to stop progression in the people who have this restriction and for the rest of us, it's LDN, :)

They did say that one of the first signs of having this CCSVI is, Vericose veins in the legs. I don't have that.

When I told my DH about CCSVI, he asked, "Then why does MS affect people mostly in areas far from the equator?"
Hmmm...maybe more than one thing can hit the body...
anyway, I'm definitely going to bring this up at the next neuro visit.

Welcome to NT, Kazman!:D

FWIW I don't think MS mostly affects people in areas far from the equator although I guess a majority of the world itself is far from the equator. :D

As I understand it, vitamin D forms part of the blood brain barrier and if vit D is deficient in a blood brain barrier already at risk by increased venous pressure...?

I'm only an AHT but I smell good science in Dr. Zamboni's work :D.

Deb
(Crawling back under my rock.)

Hey now! :p

C'mon back over 'ere! :hug:

Nice to meet you! :)

Information from a lot of sources on the prevalence of MS and equatorial distance:
http://www.msrc.co.uk/index.cfm?fuse...ow&pageid=2325

This was one of the first things I thought of when my skepticism gene kicked in when I first started reading about CCSVI. Like I said, there's so much we don't know about the body and the brain...It could be genetics, it could be environmental, it could be diet, it could be we just got the luck of the draw! :confused:
I think at this point every theory is worth investigation, and promising theories need more followup.

One question for everyone. My brain doesn't want to answer me right now: Does MS have any association similar to the MJ Fox Foundation, where money is being funneled into the most promising scientific studies? It seems to me that there is one but I cannot recall the name and I would like to see if they are doing any funding of this theory and the studies related to it. TIA! :)

One possibility is to go back through the interview and find out who the people in the US are that are researching this procedure. Then give money directly to them since it will have more chance of being used for research than paying salaries at other fund raising orgs.

GMI

Here is a decent overview on different possibilities also but personally I still favor the genetic link.

Geographic Distribution
There is a very specific geographic distribution of this disease around the world. A significantly higher incidence of the disease is found in the northernmost latitudes of the northern and the southern hemispheres compared to southernmost latitudes. This observation is based on the incidence of the disease in Scandinavia, northern United States and Canada, as well as Australia and New Zealand. The data from migration studies shows that if the exposure to a higher risk environment occurs during adolescence (before 15 years of age,) the migrant assumes the higher risk of the environment. This concept is nicely illustrated in studies of native-born South African white population with low incidence of the disease versus high incidence of MS among white immigrants from Great Britain, where the disease is much more prevalent (Saud A. Sadiq,James R. Miller et al.) "Epidemics" of MS have been reported and these provide further evidence of importance of environmental factors in MS. The most notable "epidemic" was described on the Faroe Islands after they were occupied by British troops in W.W.II. Similar increases in incidence of the disease were seen on Shetland and Orkney Islands, in Iceland, and in Sardinia. A specific "point agent" for these "epidemics" never was identified.

Population Studies
There are also population studies that show difference in susceptibility to MS between different populations. Lapps in Scandinavia appear to be resistant to the disease, contrary to the expectations based on their geographic distribution. Native Americans and Hutterites very infrequently suffer from MS, as opposed to other residents of the North America. MS is uncommon in Japan, China and South America. It is practically unknown among the indigenous people of equatorial Africa and among native Inuit in Alaska. When the racial differences are correlated, White populations are at greater risk than Asian or African populations. We can not yet explain these obvious inconsistencies in disease distribution, but the knowledge of them may be helpful in assessing specific patients.

Genetic Factors
The incidence of MS in first degree relatives is 20 times higher than in general population, suggesting the influence of genetic factors on the disease. Monozygotic twin studies show the concordance rate of 30%. Dizygotic twins show concordance rate of less than 5%. These results suggest that both the genetic factors and environmental exposure are important in disease expression.

http://library.med.utah.edu/kw/ms/ep...tml#population

Not all of us with spinal lesions have a severe form, are primary progressive or rapidly deteriorating. This just sounds like more of the standard beliefs and impressions that, for some, are not true.

Too many years with this disease and a major skeptic :rolleyes:

I am also not a believer in the Vitamin D theroy :rolleyes:

I spent most of my childhood in the sun, I have had skin cancer to prove it. I also drank tons of milk. I had MS symptoms starting in childhood.

Welcome to NeuroTalk, Deb :)

I agree with Snoopers..HI!:)

There is no and won't ever be, one universal cure for MS.....Too many kinds, too many causes and too many treatments.

However, this one may help some people, so it should not be dismissed....nor should any other legitimate treatment.

And don't forget, Big Pharma doesn't want something cheap and simple, for MS, to come to market!!

:grouphug:

Yup, which is why this type of approach is going to probably in a lot of cases fall on us to be proactive about.

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)

my medical center said they are taking a "watchful prayerful stance" but have seen many cures come, and many cures go. They are not reccomending any part of this till much more is known.

My Neuro nurse asked why those who live above the mason dixon line have MS more frequently if its just a plumbing problem....makes ya wonder.

I dunno...I think I want to see more advancements on this, but I am not willing to be first in line...ima chicken. :o

Omaha mission
 

Omaha, NE. After hearing about the news letter from **(Buffalo Research) I first contacted my insurance company (UHC). The Claims dep. advised me that they will cover the MRV and Doppler tesing, just need a refereral from my Nuero or Physician.
Since the new letter from Buffalo states that we will now be able to get references from our ... See MoreNueros I decided to start searching for facilities in Omaha that can do this test. I have been in contact with Northwest Radiology consultants which has several 4T MRI machines, The procedure administrator will be calling me back on Monday to discuss. I will be providing them with Dr Hacks instructions along with the letter posted from Buffalo. We shall see what happend.
Worst case I will be callling Creighton University, they show right on thier website that they do MRV testing as a normal procedure. Email is ---***

msuser.... I'm in Omaha too!

Northwest Radiology has 4T MRI machines? I didnt know that. I dont live all that far away from them either. Maybe next time I need an MRI...?

Creighton isnt that bad a place. (I have relatives that work for the hospital. I feel I have to defend them a little)

If you get the testing, keep us updated in here. I'd be interested to know how it goes and who to talk to in Omaha.

A Great CVSVI Site!! All your Answers!!

ADD...Be sure to click the pictures for all the cases....


http://www.ms-mri.com/index.php

I actually received a bunch of information emailed to me after the findings were released recently, but I have not the time nor money to fund it ($4.5 to $6k USD, yeouch!). I'll wait patiently for testing to come to my region.