Loobie Doobie - Round 3!

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

Postby prairiegirl » Thu Mar 03, 2011 9:57 am

Hoping for the very best of outcomes for you!
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Postby lucky125 » Thu Mar 03, 2011 1:05 pm

Lew,

I am wondering if Dr. Dake just looked at your azygos, or tried ballooning it. At the Symposium in Brooklyn in July, Dr. Sinan told us that he uses the balloon as a diagnostic tool to find problems that simple IVUS and fluoroscopy can't see.

I was treated by Dr. Haskal 4 days later. He was at the symposium, and I wondered if he was influenced by Sinan. I asked him and he demurred. A friend was treated by him the week before the meeting, and he did NOT balloon her azygos because he didn't see any problem. She was just retreated by him last week, and sure enough he ballooned that azygos and found all kinds of twisting!

For me he inflated the balloon all through the arch. I did not have any smoking gun in there like I had thought, but it was great that we answered the question unequivocally.

I hope that whoever is treating you next will balloon the azygos even if it looks o.k!

Can't wait to hear how it goes. Fingers crossed!
Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby Loobie » Thu Mar 03, 2011 1:46 pm

Rokkit wrote:This describes me exactly. My sudden onset fatigue spells ceased the day of my treatment and I haven't had one since. I haven't gone a week without a BM since my treatment, not even 3 days. And it's been 17 months now. I can't rule out placebo, but I think it's unlikely. OTOH, my legs fatigue easier, I have pins and needles in both feet now instead of one and I have some ED creeping in, oh joy. I'm sure I'm one of the lucky 6 mentioned by Dr. Dake.

There are a few Stanford people who now have or will soon have additional treatment. It will be interesting to see if it helps. I'm pretty sure I'm going to try it again. The way it looks right now, having talked to a few doctors, I'm leaning towards either Dr. Arata at PI or waiting several months for Dr. Sclafani to get a lot of experience.


I feel a very kindred 'case of MS' with you right now. The leg stuff and the tingling feet? I could've written that. The fatigue coming easier is what I'm dealing with now. I can still do, in a single event, about a 1/4 mile walk before I get a limp going, but my legs are toast at that point and a strong wind could blow me over. I also have some ED as well (we're both lucky there) but I just pray to the good Lord that those, below the waist things, will be cleared up by roto rootering the azygous.
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Postby Loobie » Thu Mar 03, 2011 1:46 pm

I forgot to add that my legs are literally buzzing at this point they're tingling so bad.
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Postby eric593 » Thu Mar 03, 2011 2:18 pm

I also have leg tingling and can't walk more than a 1/4 mile. The bottom of my feet have altered sensation too.

My azygous was ballooned 3x but it had no effect on lower limb problems unfortunately.

I hope your procedure is more successful than mine, I look forward to reading the results!
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Postby Loobie » Thu Mar 03, 2011 2:55 pm

lucky125 wrote:I hope that whoever is treating you next will balloon the azygos even if it looks o.k!


Me too Nicole!
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Postby CRHInv » Thu Mar 03, 2011 8:20 pm

Fantastic! I am so excited for you. I really think they are going to find something. Know that me and my family are thinking of you and we can't wait to hear more.
Take good care!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Drury » Sat Mar 05, 2011 8:37 pm

Hope you get great results Loobie!
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Postby Rose2 » Sun Mar 06, 2011 5:30 pm

Lew,
Good Hunting! Hope you bag something!
As one of the original Stanford 2009 group, Dake did place a stent in my bent Azygos. I will always believe that is what removed large motor problems and massive body pain.
I am still running at 100%.
Now comes the Subaru comparison. If that little spider can build its web in the hose part of the ignition controller, it surely compares to webby stuff in the Azygous I would think.
Subaru sent each Service Dealership a long bottle brush type thing to clean the webs out. mmmm.....maybe take one with you?
We could invent a balloon with a brush exterior? or maybe they did that.
Anyways, best of luck.
Rose2
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Postby Needled » Sun Mar 06, 2011 7:59 pm

Lew,
Best wishes for a super successful procedure. You know I'm pulling for you, always!!
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Postby Loobie » Mon Mar 07, 2011 6:07 am

Rose2 wrote:Lew,
Good Hunting! Hope you bag something!
As one of the original Stanford 2009 group, Dake did place a stent in my bent Azygos. I will always believe that is what removed large motor problems and massive body pain.
I am still running at 100%.
Now comes the Subaru comparison. If that little spider can build its web in the hose part of the ignition controller, it surely compares to webby stuff in the Azygous I would think.
Subaru sent each Service Dealership a long bottle brush type thing to clean the webs out. mmmm.....maybe take one with you?
We could invent a balloon with a brush exterior? or maybe they did that.
Anyways, best of luck.
Rose2


The doctor in Egypt uses a 'cutting catheter' for this occurence but others are using other things to deal with this. I can't wait, but believe me, my expectations are totally realistic. I'm actually kind of pessimistic about any results since I was just so certain that we would find something at Stanford. Oh well, that way anything good will be like winning the lottery.
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Postby BadCopy » Wed Mar 16, 2011 7:52 pm

When are you going in for round three? I think I read that you have retained most of your benefits from the first two, is that correct? In any case let us know how it goes and good luck.
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Postby Loobie » Thu Mar 17, 2011 8:25 am

I have retained most of them in that basically all of my symptoms remain unchanged or a bit better. However, my left leg is getting weaker and that is what is really prompting this round 3. I'll tell you though, it's really nice to not have every damn thing get worse like it used to. It was becoming overwhelming before the procedure. I'd get so much cog fog I'd literally want to just sit there with my mouth open and just not move since I'd just swoon in my brain and vision.
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Postby pklittle » Thu Mar 17, 2011 9:46 am

Loobie, I don't know much of your story (I need to follow your link and do so), but I've never been a fan of ballooning for the sake of ballooning "just in case" it might show something. It could possibly result in damage to the vein causing less flow than you have now. A clot or narrowing could result due to unnecessary ballooning. It is bad enough when that occurs when there IS stenosis (raising my hand here).
Just be cautious.
I don't know if you use facebook, but Kathleen Lynch has a lot of knowledge about Dr. Sinan's techniques. It might be worth it to have a conversation with her.
Good luck to you.
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Postby Loobie » Thu Mar 17, 2011 3:03 pm

Kathleen is the one who told me about the cutting catheter.
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