This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi there, This is a terrific site, but it doesn’t save me from being a newbe, DXed in June 2002, with could be PPMS, and or Devic’s, and sent home to rot, since I live in Canada, I am very limited as to what I can do, but I know I will have to take my care into my own hands.

I apologize if this is posted in other areas; I searched and did not find it. I was told by my Nuro’s that my type of MS has a small percentage of the MS population, and thus there is no interest (or potential profit) in the Pharma, or Nuro industry to do anything to in the future for us, as none of the current MS drugs have any affect, I have always wondered if I was mis-diagnosed, as my Nuro in Toronto at a Leading MS hospital told me that I would be in a wheelchair within 5 years, and I am still on my feet.

I was also diagnosed in Barrie Ontario with CCSVI in Jan of 2011, and I am trying to make the choice of my life, financially, I have one kick at the can, but where do I go? I hear most of the clinics in the US use angioplasty but only open up the veins 10 to 20 percent larger, where other places like Mexico use oversized balloons and rupture the valves hoping to keep them from re-stenosis, do we have a consensus on which one is a better option?

And once I come back to Canada, my follow up, and physiotherapy will be pretty much up to me, so what is the best medication? Prescription or otherwise?

I have changed my diet and lifestyle to make the most of the CCSVI direction, but we are in limbo in Canada, and I do not want to keep deteriorating while my current health care system tries to desperately find a way to keep the status quo until they can find a way to fully exploit CCSVI for their own financial gain.

So my questions are, what angioplasty theory is looking like the better option? And what is the best medication, diet, and exercise I can do for myself when I come back to medieval Canada?

I understand we are still just learning, and It really hit home when I saw the last video interview with Dr. Gary Siskin, in Albany on just how early we are into this and how many unanswerd questions we have, so now, I am just looking at the best bet for now.

Thank you

welcome to the site! We were all newbies not so long ago.

Right now we've been cautioned by both Dr. Sclafani and Dr. Cumming (they're around here on TIMS, both are IRs currently treating CCSVI) against the oversized balloons. With an oversized balloon, there seems to be a greater risk of thrombosis or jugular collapse and scarring down.

With PPMS you want a doctor who can thoroughly check the azygous. also the iliac and lumbar veins as they can drain into the azygous if they are stenosed. In Dr. Sclafani's thread, he's posted lately about IVUS finding stenoses that were not found on regular venogram. Dr. Reid in EHC had a case like this recently too, as posted in another thread. Based on all that, I think it is important to go to a doctor who uses IVUS in the azygous vein. (Intravascular ultrasound or images taken from the inside of the vein.)

Dr. Sclafani is very skilled in IVUS. Dr. Cumming is now using it in all patients. Dr. Reid of EHC (is it Scotland? England? UK....) uses it on cases where it seems necessary. Arizona Heart Institute uses it but I don't know much about them.

So that's my advice, for what it's worth! Steer away from oversized balloons and toward IVUS.

I am Canadian as well. Cece is right when she talks about the large balloons and make sure your GP at home is aware of what you are doing. They can be a great resource, my GP talked to my IR and was comfortable with the procedure and providing any prescriptions needed.

Have you started the endothelial health program? There are some supplements listed in the diet/herbal regimes. I started taking them after but feel it might have been more helpful to start them in the months prior.

Knowing all of the costs involved (treatment, follow-up, medications, hotels, and length of stay required) and the difficulty getting to the place you might be treated is important. As a potential one shot treatment you actually want to be cautious on being over-treated. More chance of negative outcomes. One important factor is follow-up, to ensure that things are still alright and for your own peace of mind. It is amazing the knowledge that the Dr's gain from seeing the effects of their procedures. Different Dr's prescribe different drugs and they have different protocols for treatment.

Have you been reading Dr. Sclafani thread or Dr. Cummings comments? Both Dr's are very helpful, they are very open about what they are learning and what their experiences have been. Dr. Cumming is in Minneapolis and Dr. Sclafani is in New York.

Logan, I strongly advise you to wait. I jumped on the liberation bandwagon and had my first procedure done last June. Got great immediate improvements but they only lasted a week. Second procedure done 3 weeks later. I never recaptured my improvements that I got with the first. Others report the same. Not getting the same results as with the first time. Tried a third time in October with Dr Siskin. My veins were 100% occluded. He could do nothing. Tried a fourth and fifth time with Dr Arata in January. He could not help me. Said my veins are now blocked with scarring.
You can do everything right. Take every precaution and still have a negative outcome. You do not want to end up like many of us whose veins now are more closed than originally. And we are now more disabled. So wait a little longer untill there is more info.

Logan,

If you are degrading rapidly or for any other of your personnal reasons you choose to have the procedure, i can understand it. BUT be aware that this is MOST probably not a one shot deal. Worst, you may need multiple procedures to correct some problems! Be sure you are FINANCIALLY, emotionnally and physically ready for repeats. If it is a thrombosis, vein collapse, etc I am not talking about re-stenosis. You may NOT have the choice but to have more procedures unless you are willing to get it permanently occluded = more disable.

I do believe in the CCSVI procedure - I did have some improvements before the shit hit the fan. But being from Canada it is not covered by insurance it is not the same dilemma...

I have had many many many procedures not all by choice!!!

It scares me when I see some treads of people looking for the cheapest location. It means can berely afford ONE procedure, what will happen to them when they have to get another.

As you can see, you have differing advice even here. There are people who have been around a long time and still OK, people who have been treated and are still ok but it hasn't been that long (I've only been 8 months or so, Cece since January or so, etc.), and others who have been treated and had thromboses from stents or multiple procedures, from last year to this. The problems, I think, are becoming rarer, but restenosis is still a fairly good bet. Some people don't get it, but nobody can completely control or predict it. Same with thrombosis, only, I think it is less frequent. The science of CCSVI is still new, climbing a learning curve, however you want to put it.

At some point someone, no doubt, will try to describe and quantify the adverse processes with a view not of providing an actuarial risk assessment but guidance for decisions based on individual peculiarities. Even without that, there are decisions to be made by competent doctors as situations arise.

In Canada, it may be hard to get follow-up treatment. I always say don't leave home without a follow-up appointment and a way to get to it. I think the usual thing is 1, 3, 6, 12, 18 months, but ask your doctor! I ain't no doctor. The ones you see on here, calling themselves Dr. are, some but not all, MDs. Find out! It's your life, your body, your risk. Remember, we are nothing but a bunch of ones and zeros.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Dania, you might feel differently, but I think you are scaring people too much, when you say "this could happen to anyone" without disclosing that in your case (as I understand it) you had aggressive ballooning in Bulgaria, you had a hypercoaguability disorder that increased risks of clotting, and you had prior radiation done to the neck that would have damaged the veins.

I know of an IR, out of 40 patients treated, he had 2 occlusions occur. That's 5%.

Dr. Sclafani, out of 100 patients treated, has had 6 occlusions, all back when he was using aggressive techniques and none since then. So that's a 6% rate with aggressive techniques and a 0% rate, as known so far, with his new techniques.

Cece.
You are right. I do feel differently.
I believe knowledge is power.
I DID NOT have aggressive balloning in Bulgaria.
Others developed clots without hypercoagubility.
Dr Siskin told me that doing a venogram does a little damage to the vein's wall.
I have received many private messages from people who improved and then restenosed and are now worse.
My OPINION is that people should be aware of both sides.
When I went the first time, the only info was that this procedure would not make things worse.
MANY are afraid of being attacked if they post any negative outcome.

I understand the need to make people aware of the potential bad outcome, we need to know of the good and the bad. My story is not very fun but it is a risk a was willing to take a year ago.

My problem is that people without insurances don't realise that more procedures may be needed and it won't be a choice. Make sure you can afford dealing with complications!!!!!

I was treated in the US by a very good IR and I don't think he used the large balloons (16mm & 18mm, it's kind of funny(in an ironically sick kind of way) but the IJV that is occluded is the one that had the smaller balloon), but at this point I have one occluded IJV and I'm not sure what the other one is doing and I am slightly worse off than before after having very noticeable improvements. My treatment was in March 2011.

I didn't have cancer treatments or any other issues that I know of. It is important for people to be aware that there is a real chance that you could get worse. I made sure I went to an IR that didn't believe in stents as I wanted my treatment to be on the conservative side. My feeling was that if I had to have the procedure again due to under treatment then that was my choice. My main concern was to keep my veins as intact as possible. At this point I'm not sure I really have any choice and that is a very scary place to be.

Anyone considering this procedure needs to really understand all of the possibilities, good, bad, or neutral. I was prepared for neutral but really didn't feel there would be any bad based on the things I had read. I was staying close to Canada, I wasn't having aggressive treatment, I was prepared for follow-up and the only really bad reports appeared to be from people who seemed to have other issues, had very aggressive treatment or were on their third procedure. It cannot be understated that you might have a worse outcome even after being careful in your choices. This is an issue that must be part of your decision making process.

Cece, I am so very happy for you and the others that have had successful procedures and that some of the Dr's are changing technique to try and eliminate some of the issues that have happened.

I wish it didn't happen to anyone. If it's a 5% risk of occlusion (total loss) of one vein and if that risk is being lowered as the docs figure out up from down, I can see the argument for holding off.

Last summer and early fall, I started a lot of conversations about this, total occlusions, lost jugulars. We thought it was pure clotting then, now there is the concept of the vein giving out and scarring down and collapsing.

Munchkin, I didn't know you went into it having minimized as much risk as you could and wanting conservative treatment and ended up with an occluded vein. So this is still happening to people.

It contrasts with my experience, which is that a load of misery has been lifted out of my life and I am feeling better.

I hope people who have not been sharing their experiences, good or bad or in between, will share them.

Welcome Logan and I hope you're feeling well. Since March I haven't followed threads on TIMS much because my symptoms got so bad that I only have a few hours each day when my cog fog is low.

I'm posting today to simply speak from my experience. I did lots of research about different techniques of CCSVI docs, clinics, etc and tried to make a well informed decision about having a second angioplasty after a good yet short-lived improvement from the first angio.

With all the best intentions on my part and on the part of the doc mentioned above, I am one of the patients that have deteriorated from aggressive angioplasty and don't know if I'll regain abilities. I hope I'll improve and am working on finding ways to encourage healing.

Cece, you're a wealth of good info for folks here and I understand that what I posted may sound scarey, but I'm just describing my reality in case it helps someone. I hope you're doing well too.

Patrice

So there you have it. If this little thread is anything to go by, you will hear just as many or more anecdotal reports (remember they're only anecdotes, whatever that means) of negative results as positive. The real rate of positive results, according to what Cece says, is much higher. That doesn't help if you are in the low negative end.

A couple of anecdotes of my own: I have struggled with the issue of independence for a long time. In 2004, when I was in rehab, I took my walker on a city bus to a big mall to buy my wife a birthday present. I still had my driver's license then, but we only had the one car, and she had it. I was proud of myself but it did not seem like such a big deal.

Today is her birthday again. She is at work. I took a cab from home to a nearby mall where I walked across a big parking lot in the noon sun, first to a jewelry store, then across to the other side, to a grocery store. Then I took a cab home. I was worried because I had not left a note. Now I'm home, with present and cake and plenty of time to spare. No-one home yet. This time, though, it seems a bigger accomplishment. I was in a wheelchair in January and I could hardly push it, even though it's pretty light. Walking, walker or not, was off the table.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

1eye,

I know you didn't forget the balloons! Or did you end up going with the stents instead?
Hope your wife has a great birthday.

WeWillBeatMS

Welcome logan

Since you've always questioned your diagnosis, maybe you might think about going back to step one, the 'PPMS' diagnosis itself. Ask questions, lots and lots of questions, and if you haven't had a chance yet, be sure to request and read all copies of all test reports.

How were you tested for Devic's, aka NMO (neuromyelitis optica)? There is now an excellent blood test for NMO, and the treatment is plasmapharesis.

What is your symptom history? What symptoms have been progressive from the start? What is your lesion history? What other diseases and conditions were you tested for? What tests were done? Were you ever tested for Lyme? The treatment for Lyme is antibiotics.

Which criteria were you positive for regarding Dr. Zamboni's US criteria requirement for the CCSVI diagnosis? The original two out of five criteria was changed to two out of four criteria, with reflux into the deep cerebral veins removed; therefore, depending on which set of criteria were used by Barrie, it's possible you might only have one criteria which would mean you don't qualify for the CCSVI diagnosis -- well worth checking into.

Best of luck