LoobieDoobie's CCSVI stuff

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

Postby Artifishual » Sun Jul 12, 2009 3:35 am

prayers sent bud
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Postby gibbledygook » Sun Jul 12, 2009 3:55 am

Good luck.
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 javaneen » Sun Jul 12, 2009 6:43 am

Good Luck Lew! I will be thinking about you!
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Postby skydog » Sun Jul 12, 2009 10:16 am

East is least, and West is Best !!! Welcome to the west coast Lew. Best wishes my friend. Mark
Plant a BIG Garden Live in the Moment
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Postby chrishasms » Sun Jul 12, 2009 3:56 pm

1`23
Last edited by chrishasms on Sun Dec 06, 2009 11:08 am, edited 1 time in total.
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Postby catfreak » Mon Jul 13, 2009 7:16 am

Did you get there safe and sound? Let us know.... We are all thinking about you!

I think I am gonna make the call too!!!

Cat 8O 8O
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby mrhodes40 » Mon Jul 13, 2009 7:29 am

Hi Lew thinking of you!
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 Jamie » Mon Jul 13, 2009 9:11 am

Is it today???

Good luck L!
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Postby coach » Mon Jul 13, 2009 11:45 am

Wishing you all the best Lew.
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Postby Loobie » Mon Jul 13, 2009 12:15 pm

Just got back from MRV and labs; waiting to go back for my ultrasound and Dake consult. We had some time to kill so I went up and met everyone after consuming about 8000 calories in about 10 minutes. Didn't eat for about 28 hours. And while we were talking to Alex and Angela (rrroowwwr; total hottie) Dr. Dake came up and we took a group picture which I will be posting. I can't wait for this afternoons' consult with Dr. Dake. Fingers crossed all around. That campus is beatiful and I will post pics of the house I'm staying in. Lord have mercy is it beautiful. More tonight after I talk to Dake and find out the news!
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Postby Sharon » Mon Jul 13, 2009 12:35 pm

And while we were talking to Alex and Angela (rrroowwwr; total hottie)


Hey, Lew get back on topic - we were wanting to hear about your tests!! :D :D
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Postby Jamie » Mon Jul 13, 2009 1:18 pm

Wow it was a week ago today.

It all goes so fast, not like a month in Baltimore.

Palo Alto is beautiful.

Lew may your veins be blocked, and your journey be swift!
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Postby Artifishual » Mon Jul 13, 2009 2:21 pm

can't wait Lew, try out some of that SoCal medicide yet? 8)
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Postby Loobie » Mon Jul 13, 2009 8:52 pm

I'm in San Fran dude, not LA! Well I have clogged up jugs. My right one is basically shut and my left one has narrowing. Nothing at all in my azygous. It was totally normal. I had imagined that because of all my early spinal involvement, that would be the biggie, but na baby na. I don't know if my thinking is right on that or not. My bladder is the biggest thing I want some relief in. It has really been bad since the last one. I'm not peeing the bed like when I was on the 'roids, but I'm voiding about 1/2 what I was a few weeks ago, but I think I got it out of whack by not drinking at all when i was travelling (about 8 hours). So my OAB was acting up with only a tiny bit of urine in the bladder and I was only voiding a little bit, but still had the urgency. I think that may have been it because at home right before I left I was still peeing my usual 200 ml per pee and this came on when the only change was that. I guess we'll see what we see now. So I go in for surgery tomorrow at noon. I had a good visit with Randi this evening! She is very cool, but we were having dinner and it was very "fragrant" and I felt kind of bad, but when you haven't eaten all damn day, it all smells good! We had this peanut/cilantro dipping sauce that I basically drank! It was awesome.

Good luck tomorrow girl, I hope I'm up for visiting around the hospital and I'll come see you.

Dr. Dake is very down to earth. He doesn't pretend like he knows what you should expect or anything and I think that's great. He's very engaging and is like talking to a buddy. He's obviously very, very intelligent, but he comes off very pragmatic and sensible with his feet planted where the rest of ours are (unlike many doctors I know). He will talk about the things people are seeing relief in straight away, but falls short telling you what you should expect. He says "I just don't know" and he's straight up about how we are simply in uncharted waters. The day went off like clockwork. I was the first appt. of the day in the MRI/V machine and that got done is just under 90 minutes. Then the blood draw took absolutely no time. the ultrasound lasted about 25 minutes, and we didn't talk about the results of that at all. Right after that I went to see Dr. Dake and he came and met with me and my mom and we talked for about a half hour. He loves a detailed narrative of your disease history. Everything including stuff you had as a child. He's putting together a big matrix and I feel he is trying to find the cure. God love him for that, but I hope he's onto something as he told me that quite a few prominent neuro.s are starting to feel that there is a cardio connection. He just flips his monitor on his desk around and shows you the MRV stuff and it's very easy to see actually.

So the way he describes it is like we have a group of us over here who have herpes, high EBV titers, and another group over here who had bad diet, and so on. He wants to find the trends, but I know that Tim Wesner's dad, who is a statistician, was doing the same thing, but I don't believe this was part of the equation. Don't quote me on that, but I know I read Ihavems.com about twenty times and I think I remember it that way. So my blockage is not high up like Mark's, so my mom is going to get me a neck pillow for the trip home and my convalescing here, I requested some SOMA, and I asked to make sure I get a foley; all stuff that we got from our first wave! Thanks Sharon and Marie!

The flight out was very bumpy and when we connected in Phoenix, we were 35 minutes late with a 35 minute layover. Well little did we know our connecting flight was at the gate adjacent to our deplaning gate! So we got off our plane and literally walked out of the jetway, took a right and boarded the already loaded plane and took off again! Even if you are not disabled enough to use a chair, I would recommend using their service anyway. They save you the seat right up front and you have all the extra leg room and also get off the plane first.

Don't really have anything earth shattering to post yet except that I'm not the next exception, which made me glad. I hope this does the trick. Man I hope this does the trick. Well my eyes are getting extremely heavy as I didn't sleep much last night and it's only 9:00 something here, but my body thinks it's after midnight.

I hope I'm up for posting about the surgery tomorrow. If not, I'll probably have my buddy do it for me and I can let you all know what happened on the OR table.

Final note is that he is going to be using smaller diameter stents going forward. I'm sure he explained it to me, but I don't remember more than the fact that he is going smaller.

Good night all!

Lew
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Postby Loobie » Mon Jul 13, 2009 8:56 pm

One thing I forgot to add. I do have new lesions, but Dr. Dake called them "splashes", like splashes of light color and not the obvious ones like Dawson's finger ones and the like. Forgot that detail, like I said, I'm flippin' worn out!!
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