HOW did you get CCSVI done

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

HOW did you get CCSVI done

Postby mshusband » Wed Jan 27, 2010 11:35 am

OK, I know a lot of you are much more experienced with MS than I am - again I'm completely new to it - my wife hasn't even started her interferon drugs yet.

But HOW do I get to one of these CCSVI guys? I'm willing to travel and pay for it if I have to ... I just want so badly for us to explore every treatment possible, because much like you, I don't believe the MS Societies, drug companies, and most Neurologists want to believe this could be fixed by someone outside their little circle.

Like I said, my wife is just barely even diagnosed, but why wait? Let's fight back now ... so who do I contact, how do I contact them, where do I need to go.

It seems like this has really (CCSVI) only blown up since October/November ... so how is it so many people on here have had it done or have appointments already? Would you all do it again (for those who have)? Did you pay out of pocket, or insurance or what? I've already contacted our local hospital interventional radiology department to find out if this is even possible here (Pittsburgh, PA USA).

Let me know please. I feel so helpless ...
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Postby ozarkcanoer » Wed Jan 27, 2010 12:25 pm

mshusband,

Here is a list of all known treatments and diagnosis for CCSVI :

http://csvi-ms.net/en/content/ccsvi-treatments

Many people are pioneering by contacting interventional radiologists close to them. That is what Joan did. That is what I am doing.

Good luck,

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Re: HOW did you get CCSVI done

Postby jr5646 » Thu Jan 28, 2010 6:18 am

mshusband wrote:OK, I know a lot of you are much more experienced with MS than I am - again I'm completely new to it - my wife hasn't even started her interferon drugs yet.

But HOW do I get to one of these CCSVI guys? I'm willing to travel and pay for it if I have to ... I just want so badly for us to explore every treatment possible, because much like you, I don't believe the MS Societies, drug companies, and most Neurologists want to believe this could be fixed by someone outside their little circle.

Like I said, my wife is just barely even diagnosed, but why wait? Let's fight back now ... so who do I contact, how do I contact them, where do I need to go.

It seems like this has really (CCSVI) only blown up since October/November ... so how is it so many people on here have had it done or have appointments already? Would you all do it again (for those who have)? Did you pay out of pocket, or insurance or what? I've already contacted our local hospital interventional radiology department to find out if this is even possible here (Pittsburgh, PA USA).

Let me know please. I feel so helpless ...


I'm near Pitt too... Don't feel helpless, man. I've been dealing with this for almost ten years and if ever a time for HOPE / help it is now. We're not talking just "slowing" the progression either. Just hang in there and keep doing what you are doing. No need to "wait".. if you don't want to. I am not going to wait, that's for sure. The fact that you are researching and trying to "help" is wonderful. Your GP (Family Physician) may be a great place to start, esp. for refferals to Vasc. Dr's. Your neuro. also, but in my own personal experience my neuro. quickly dismissed ccsvi and would not even really discuss it with me, so tread lightly if you bring it up to your wife's neuro. No harm in asking tho..

From everything I'm seeing regarding CCSVI, your wife could benefit greatly from treatment being that she is newly DX and likely doesn't have any perm. damage. As I'm sure you have already been advised to treat early.. Anyway, you are on the right track contacting IR's... just be prepared for some skeptism as that is what I'm seeing. I'm heading to my third Vascular Specialist (IR) next week in Shadyside. If I make any positive progress I'll let you know. UPMC will probably be our best shot in SW. PA. The latest research as well as the fact that venous malformations are now classified as congenital will greatly help our case for treatment. Keep in mind too that even "if" we get tested, its likely that the scans may not be read properly.... so I'll be taking the protocals with me.

The jury is still out if Health Insurance will pay for treatment, but it's looking better everyday. Information is coming out fast and clinical trials are just around the corner.. It was reported that Georgetown Univ may start testing/treating soon (not sure if its a clinical trial or not?) but we can easily drive there.. Cheerleader has a Facebook Page (CCSVI in Multiple Sclerosis) with everything you need in one place. Sifting thru all the posts here can get frustrating as it is quite busy, but extremely invaluable information, help and support here..

I'd welcome you to TiMS but I guess I'm considered a newbie too.. Glad to see another steeler fan here (i'm guessing), but if your from Pitt 99.9% chance of being a fan.
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Postby mshusband » Thu Jan 28, 2010 6:44 am

JR. I don't know much about this site to PM or anything like that, but it's good to hear from someone near Pittsburgh.

Who is your Neuro?

Who are you trying to get ahold of in regards to IRs in Pittsburgh?

I saw about the Georgetown study, and I want to get ahold of that Dr. ASAP.

My experience so far, in talking to the few people I know with MS around Pittsburgh is they are happy taking their interferons and listening to their Neuros. I am not that way ... nor is my wife.

In fact, we asked our Neuro about Dr. Burt's stem-cell study at Northwestern and he hadn't even heard about it ... that surprised me. Nor had any of the MSers in Pittsburgh I've asked. I don't get that, if that has helped others why isn't that out there? And now with CCSVI - I've asked a few and they've responded like I have 3 heads or something ...

Please keep me up to date on anything you find ... just hearing from you and that you're already on this in Pittsburgh has eased my mind a bit today.
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Postby bestadmom » Thu Jan 28, 2010 6:56 am

mshusband,

Go to society of interventional radiologists website. There is a doctor finder by state. Search on it and contact them all. You are bound to hit on someone who will know about CCSVI and want to help you and your wife.
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Postby patientx » Thu Jan 28, 2010 7:09 am

mshusband wrote:In fact, we asked our Neuro about Dr. Burt's stem-cell study at Northwestern and he hadn't even heard about it ... that surprised me. Nor had any of the MSers in Pittsburgh I've asked. I don't get that, if that has helped others why isn't that out there?


Because Burt's stem cell therapy has only gone through one small pahse II trial. And death is considered one of the potential side effects.

And now with CCSVI - I've asked a few and they've responded like I have 3 heads or something ...


One thing to keep in mind, though it might seem like CCSVI is common knowledge by now, knowledge of it is mainly an internet phenomenon right now. (That, and one very non-scientific Canadian TV show.) The world is much larger than a few internet boards. And the publications about CCSVI have been by one man, mostly in vascular journals. So it's not that surprising your neurologist hasn't heard of it.
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Postby mshusband » Thu Jan 28, 2010 7:47 am

I'm trying to learn here, so please pardon my ignorance.

Yes, one of Dr. Burt's study risks is death ... BUT that's a risk with all chemo. From what I've read the risk (of death) is less than 1%.

To compare, if you told me I had a 99% chance of winning the lottery - but required that I put $1,000,000 down first and said I could win 100 times that much 99% of the time, and the risk is to lose that much 1% of the time ... you'd have a million dollars in front of you before you were done talking. Odds are odds, and 99+% is pretty good, and in my mind worth the risk.

Now as far as your statement about it only being a phase II trial ... CCSVI hasn't even had a trial yet. It's sort of a frenzy. Does it show hope? ABSOLUTELY! I think it's great that it's a different way to view MS, what causes it, and how to treat it! I think (if you asked me honestly) it's a great new approach, and completely makes sense to me that this could be what causes MS - and if you can treat it before the disease progresses, you could technically stop MS. Then maybe stem cells (or this Biogen drug) could be used to reverse the damage.

I guess that's just thoughts I've had reading these forums the past few weeks before I started posting.
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Postby Cece » Thu Jan 28, 2010 9:08 am

mshusband wrote:CCSVI hasn't even had a trial yet. It's sort of a frenzy.


It has had a treatment trial, done by Zamboni, using angioplasty. It's in the research sticky.

Replication is needed and is (hopefully) coming...slowly...in the form of the Stanford treatment (stenting vs angio) and recently announced Georgetown treatment trial.

I think you're absolutely right re. CCSVI to stop the damage and stem-cell repair or other neuro regenerative treatments to recover what can be recovered.
"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
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Postby patientx » Thu Jan 28, 2010 10:11 am

mshusband wrote:Yes, one of Dr. Burt's study risks is death ... BUT that's a risk with all chemo. From what I've read the risk (of death) is less than 1%.

To compare, if you told me I had a 99% chance of winning the lottery - but required that I put $1,000,000 down first and said I could win 100 times that much 99% of the time, and the risk is to lose that much 1% of the time ... you'd have a million dollars in front of you before you were done talking. Odds are odds, and 99+% is pretty good, and in my mind worth the risk.


I was just trying to point out why it isn't mainstream treatment yet. That 1% is just the risk of death. It says nothing about the efficacy of the treatment, which is not 99% Also, those odds sound good until you are that 1%.

Now as far as your statement about it only being a phase II trial ... CCSVI hasn't even had a trial yet. It's sort of a frenzy. Does it show hope? ABSOLUTELY! I think it's great that it's a different way to view MS, what causes it, and how to treat it! I think (if you asked me honestly) it's a great new approach, and completely makes sense to me that this could be what causes MS - and if you can treat it before the disease progresses, you could technically stop MS.


Just because something seems to make sense, does not mean it is so. Scientists usually require a bit more evidence. You might as well look into the Carp virus.

Besides, the plum pudding model of the atom made sense at one point.
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Postby jr5646 » Thu Jan 28, 2010 10:21 am

mshusband wrote:JR. I don't know much about this site to PM or anything like that, but it's good to hear from someone near Pittsburgh..


Thanks, us Picks Burger's need to stick together..haha No problem... Under one of my posts or anybody's for that matter (at the bottom) just hit the PM button.

Who is your Neuro?.

UPMC in Oakland.. not sure if I want to post his name and be sued for slander lol... I don't have too many nice things to reoprt, unfortunately...

Who are you trying to get ahold of in regards to IRs in Pittsburgh?.

Quite a few at Shadyside and Oakland... I got a referral from a local vasc. surgeon. Dr. Wholey is who I'll be seeing. I guess he's an old-timer but very progressive?? At least they ordered doppler ultrasound, so we'll see.

I saw about the Georgetown study, and I want to get ahold of that Dr. ASAP..
Yeah, I think clinical trials are going to be our best bet.. clinicaltrials.gov is where I keep an eye out.. But I'm sure we'll hear something the minute it breaks. They'll get hammered with folks like us trying to get treatment..

My experience so far, in talking to the few people I know with MS around Pittsburgh is they are happy taking their interferons and listening to their Neuros. I am not that way ... nor is my wife..
I didn't fair very well with the interferons... quite frankly I hated them. I'm currently on Tysabri, and running out of alternative options at the moment. I'm quite sure my neuro. can't stand me as I have a mind of my own as well..

In fact, we asked our Neuro about Dr. Burt's stem-cell study at Northwestern and he hadn't even heard about it ... that surprised me. Nor had any of the MSers in Pittsburgh I've asked. I don't get that, if that has helped others why isn't that out there? And now with CCSVI - I've asked a few and they've responded like I have 3 heads or something ....


I went thru a period of neuro. bashing, but gave it up for lent.. lol.. I felt like you countless times while trying to discuss new things with my neuro. The routine now is to keep my mouth shut and get thru the measly 15 min. appt. I save the "real" questions for the MS nurses.

Oh yeah... I blather on about ccsvi to anyone who will listen and then some.. I don't even care anymore if they think I'm crazy.. haha... What the hell, its theraputic.

Please keep me up to date on anything you find ... just hearing from you and that you're already on this in Pittsburgh has eased my mind a bit today.


I'll be more than happy to share all that I find with you.. If it wasn't for Tims and the great members here, I don't know where I'd be. My only advice (what you are doing already) is read, read, read...

-John
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Postby Rieja » Wed Feb 03, 2010 9:20 am

Fellow 'burgher here. Let me know what you find!

Just like mshusbands wife, I have been recently diagnosed. New to MS but want to kick it in the face so I don't suffer more damage. CCSVI looks very promising.

Currently I am seeing a Neuro up in UPMC Passavant (North Hills / McCandless). I haven't discussed CCSVI with him yet but I did send over the initial findings from Dr. Zamboni.

I am in the "waiting" stage at this point but the more info I can gather the easier it will be when I want to act.
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