Too Early to Promote CCSVI

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

Postby jay123 » Fri Dec 04, 2009 2:29 pm

jamit wrote:I just want to say that Stanford is not open for business anymore. I have been waiting for the phone call from Dake for a couple of months and also got the email that they will not take more patients for now and that I can enroll in the clinical trial.

The stent dislodging and racing to the heart causing open heart surgery and the other problems with stenting certainly made me hesitant and I welcome the clinical trial. I suspect that is probably part of the reason Stanford is not taking more patients. Standford was out of control anyhow, I mean not answering emails and returning calls only if one bombards them really does not work for me anyhow.

Having no progression in 18 months by the way does not show anything unless in a clinical trial setting, I have had zero progression on many occasions much longer than that without being on any drugs during my tons of years with MS.

I will certainly participate in the clinical trial if I qualify and hopefully they will come up with better stents, protocols and procedures.


C'mon, this is not true. Stanford is definitely open for business, they just have too many customers! It's like the Yogi Berra saying that it's so crowded nobody goes there anymore! Alex was very busy, it took three months for my appt to get scheduled for Feb. I could have gone in Jan but it worked better for my wifes schedule in Feb. I did not bombard them with calls I was actually thanked for being patient.
It sounds like from another post I read they are doing a clinical trial for a few months but progress is still being made.
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Postby TFau » Fri Dec 04, 2009 2:41 pm

Lyon wrote:[
Chris...hint.....before you go on the attack next time, you'll cause a LOT less snickering if you have someone proof read and run the spell check before sending.


Chris counts on substance over form - which is much more admirable!
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Postby Lyon » Fri Dec 04, 2009 2:47 pm

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Postby TFau » Fri Dec 04, 2009 2:58 pm

I stand by what I said.
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Postby TFau » Fri Dec 04, 2009 2:59 pm

I stand by what I said.
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Postby Lyon » Fri Dec 04, 2009 3:05 pm

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Postby yonderboy » Fri Dec 04, 2009 3:05 pm

jr5646


Thanks for your posts - both here and on the Tysabri forum - you've certainly voiced the hopes about CCVSI and concerns about waiting that many of us feel. I'm in the same boat as you as far as using Tysabri as a stop-gap measure, and wondering what to do next: I'm off Tysabri after 27 infusions, sort of an informal 'drug holiday'. In your last post you seem to be saying that you've run out of options. I'm curious about your opinion on shutting down the Tysabri, and trying to get Campath (after a drying out period). Has your neurologist discussed this with you? Any perspective would be helpful.

Thanks.
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Postby TFau » Fri Dec 04, 2009 3:11 pm

Lyon wrote:I believe you. I believe you.


Haha, very funny...
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Postby prof8 » Fri Dec 04, 2009 3:33 pm

jr5646 wrote:.

Lighten up man... It was only a joke (hence the :D ) Maybe the emotional liability is getting the best of you?? Come on... Really.... Seriously, what good is it to know if you have stenosis if you're not going to repair it though??? Nor do I quite understand what benefit it would be waiting for the Buffalo study to conclude. I have to say though, that I commend the folks that join any study... they help us all in the long run.

Me personally though, I can't afford to loose any more function.. it trumps any side effect and or risks of any procedure PERIOD. I'll mortgage my house to pay for this, or any other promising treatment if I have to. I don't want to wait, because of the high probablity of permanent damage occurring - without the ability for repair. The way I see it, is it's taken 10, 20, some even 30 years worth of CNS damage and to entertain the thought that ccsvi will repair this over night is foolish. I've always said from the beginning, that if I could just stop progressing, I'd gladly take it... Zamboni's research suggests just this...

I've been on Tysabri since 10-2007, and knew the risks going in.. I always told myself that it was a stop gap measure until something better came along.. to me ccsvi is it... and trust me, I've looked hard at most if not kept my eye on all of them.. almost went to Johns Hopkins with Chris, right before that I submitted my info. for the tovaxin studybut opted for tysabri instead, tried LDN, messed with supplements, diet, numerous med.s for sysptom control... blah, blah, blah..

Hey, even if things don't work out with ccsvi, at the end of the day, I can at least say that I've done everything humanly possible to try... I owe it to my wife and children, to say the least. I guess maybe I lost hope recently, and ccsvi has brought it back... and oh what a wonderful thing thing it is... we need to especially thank Joan/Cheerleader and Jeff for that.. as well as Zamboni and team and of course all of you who have contributed your experiences... truly a beautiful thing in and of itself. (maybe the emotional liability is getting the best of me too)

I'm sorry if I offended you in anyway, that was not my intention at all... I can only wish you the best, and hope you find relief. I "am" truly happy for you !!!


Thanks jr5646. I did go back and read what I wrote and I probably overreacted. I understand that if someone is progressing you want to do whatever you can to stop this monster and CCSVI is hopeful--it makes more sense than any of these drugs and the fact that is a structural problem that can be fixed is remarkable!! I'm sorry you lost hope recently but glad you've found it again in CCSVI.

I couldn't tolerate Copaxone or the inteferons. I went on Tysabri even though I didn't have a lot of clinical symptoms because I was told my brain was full of black holes and according to the doctor "that clearly showed my brain wasn't healing and therefore I should go on something strong." Like you I also saw it as a stop gap measure until something better came along. My mother got diagnosed with MS a month before I did. She has PP. So like you I have looked into everything and anything and want to be aggressive with my treatment because I don't want this thing progressing. I guess you can only weigh the benefits and the risks of each treatment and your personal context to decide what is right for you. The Tysabri is holding things at bay but I'm getting closer to the #24 mark and worried about PML. So I got on top of the CCSVI quickly. I can't make a decision about surgery until I see Dr. Dake but I'm trying to keep an open mind between two options -- yes for surgery or a DELAY for surgery. I will say that the migrating stent incident in one of our great pioneers gave me reason to pause.

This is just a wretched disease and all of us get emotional sometimes. I do believe hope is WAY important--it just needs to be tempered with a little objectivity. The problem is sometimes our emotions get the best of us. Hope there are no hard feelings.
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Postby jamit » Fri Dec 04, 2009 3:55 pm

I guess Jay open for business means something different to you, to me it means I can schedule an appointment for MRV and surgery if stenosis were found. I and the rest that sent our documentation several months ago but has not gotten an appointment yet cannot do that so that was what I meant by not open for business, thought that was pretty obvious from my post.

I never said they are not making progress, of course they are, they learn something every day from the "old" stenters and from the ones that are still scheduled in addition to what goes on here and in other countries. In fact I am sure we will see lots of improvements both to the procedure and the various theories out there regarding the connection between MS and CCSVI.

As I said I welcome the clinical trial and look forward to hopefully be in it.
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Postby mrhodes40 » Fri Dec 04, 2009 4:17 pm

my mother was diagnosed with PP a month before I was


Oh my I am sorry, but since you have an appointment at Stanford you MIGHT ask about her being seen; in the past Dr Dake was VERY interested in the family evaluations.......
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby prof8 » Fri Dec 04, 2009 4:39 pm

mrhodes40 wrote:
my mother was diagnosed with PP a month before I was


Oh my I am sorry, but since you have an appointment at Stanford you MIGHT ask about her being seen; in the past Dr Dake was VERY interested in the family evaluations.......


Thanks for the very interesting suggestion! My mother has been asking me to ask Dr. Dake all sorts of questions including whether someone on the east coast is doing this!! She thought about going to Buffalo to help the study but decided not to. All kinds of vascular problems run in my family such as varicose veins, clogged arteries and veins, strokes, heart attacks. I've had varicose veins removed and I also have a venous angioma in my brain -- which is basically a congenital defect that doesn't do anything but look really messed up on the MRI--the veins are are all twisted and snaking out. They say the veins look like Medusa's Head. So if some of the veins are already twisted up in my brain I wonder what the ones in my neck look like!!! And it would be interesting to see if there is a similarity between my pattern and my mother's pattern.
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Postby mrhodes40 » Fri Dec 04, 2009 4:45 pm

Oh my isn't that interesting all those vein-y things going on in your genetics there. I don't know if Dr Dake is still so on fire to see families but if he is, wouldn't it be fun for you guys to do as a team? I mean even if you guys decided to wait a bit, you'd both know what was what.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby mrsilkykat » Fri Dec 04, 2009 4:53 pm

If you participate in the UB study it is quite clear that "no Doppler or MRV reports will be given to participants or their physicians. Research MRI reports of the brain can be made available upon request." This means we will not know if or where stenosis shows up on our individual Doppler.

Don't think I'll travel 3,000 miles for that. Hopefully, they'll get enough eastcoasters for the study.
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Postby chrishasms » Fri Dec 04, 2009 5:12 pm

123
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