Loobie Doobie - Round 3!

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

Loobie Doobie - Round 3!

Postby Loobie » Wed Mar 02, 2011 1:03 pm

Well I have updated my blog about going under the venogram again. As those of you who know me know, it has just never been kosher with me that we never found anything wrong with my azygous vein. I had basically thought that would be the main one we'd have issues with. Dr. Dake just simply did not find a very high percentage of his patient's with azygous issues. That flies in the face of what all the others are finding, so I'm going in again! That is not a disparaging remark about Dr. Dake. The man's a saint as far as I'm concerned. To start this ball rolling after listening to Joan (I mean she IS very persuasive 8O ) takes a man of courage if you ask me. I have nothing but the utmost respect for him.

So I'm scheduled for 4/11 to get this all looked at. Keep your fingers crossed that this guys says "Eureka" when he looks at my azygous and fixes it up. If not, I fear I'm done going down this road. But hey, we may find that my McDonald's straw jugulars have become plugged up. They weren't at a year, but that was six months ago!
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Postby Rokkit » Wed Mar 02, 2011 1:10 pm

This is the best news I've heard in a while. I'm thinking about doing the same thing. It was really my plan from the beginning. When the opportunity at Stanford was there, I thought let's get these veins open the best we know how right now and then see where this all is at a year or two down the road. I'm pulling for you, bro.
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Postby Loobie » Wed Mar 02, 2011 1:39 pm

Thanks dude
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Postby Daisy3 » Wed Mar 02, 2011 1:41 pm

Loobie.

I wish you the absolute best. I don't always post but I do follow and read to see how the regulars on this site are doing. I sincerely hope that a third is a charm for you.
You will be in my thoughts and prayers tonight:-)
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Postby bluesky63 » Wed Mar 02, 2011 1:48 pm

I'm so glad to see your post! I remember your update from a while ago. I had intended to tell you how much I admired the Stanford originals and their pioneering, and then I forgot, as I often do. Another chance to wish you the very best, and another chance for you. :-)
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Postby IHateMS » Wed Mar 02, 2011 1:52 pm

wish u the best
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Postby soapdiva884 » Wed Mar 02, 2011 2:09 pm

Positive mojo heading your way Lew!
Last edited by soapdiva884 on Thu Mar 03, 2011 8:27 am, edited 1 time in total.
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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ccsvi

Postby blossom » Wed Mar 02, 2011 3:25 pm

the best to you.
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Postby Sport » Wed Mar 02, 2011 3:32 pm

Good luck, Lew. It will be interesting to see if he thinks he can improve upon this. I know he looked at mine when he was in there, but like with you, he didn't seem to find anything wrong with the azygous.
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Postby Cece » Wed Mar 02, 2011 4:18 pm

All the best to you, Loobie, and there has been progress on how to image and find the issues in the azygous, hopefully there is something there to find!!
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Postby Loobie » Thu Mar 03, 2011 6:34 am

I hope so. I mean me hoping that there's something there in the azygous is just hoping since Dake looked at it both times and said it looked fine. I think there's more to the azygous though with the membranous 'stuff' that can be in there like I've read about. Just keeping my hopes up. I mean if we go in and the jugs are still wide open and the azygous is 'fine' then I really don't know what my next step is. It's not going to be Tysabri that's for sure! I will post about all of it on here and on my blog. I think my case is somewhat rare in that we successfully opened up my jugulars and I had a bounce of improvements. Those are pretty much still with me, so I think the pyramidal things (that CAN'T be right :) ) are really aided with better brain flow. This cash layout this time is to hope that the functional stuff is helped with better spinal drainage!
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Postby Rokkit » Thu Mar 03, 2011 7:52 am

Loobie wrote:I think my case is somewhat rare in that we successfully opened up my jugulars and I had a bounce of improvements. Those are pretty much still with me, so I think the pyramidal things (that CAN'T be right :) ) are really aided with better brain flow.

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.
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Postby gibbledygook » Thu Mar 03, 2011 8:13 am

Good luck Loo! I'm also having a follow-up but in Edinburgh. They found faulty valves in both jugs which Prof Dake hadn't and I'm hoping they find stuff in my azygous as they seem to find it in 95% of cases at their clinic. I sent him the doppler scans from Scotland and Dake was impressed by the quality of the scans so hopefully these will help him on radiological technique.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby ErikaSlovakia » Thu Mar 03, 2011 9:04 am

Good luck Loo!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby 1eye » Thu Mar 03, 2011 9:25 am

Good hunting. Prayers going up now.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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