LoobieDoobie's CCSVI stuff

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

Postby catfreak » Mon Jul 13, 2009 10:23 pm

Lew,

Really glad to here your blocked and are having the surgery tomorrow. I have been waiting all day to hear what Dake said to you. This is so exciting for you and for all of us too!

God be with you, Dr Dake and his team tomorrow. Get some rest if you can and be ready to go.

Cat (who's thinking about making that call too)
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 Artifishual » Tue Jul 14, 2009 1:45 am

wow dude that is awesome!! congratulations and I'm praying for your safety and a speedy recovery!
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Postby Needled » Tue Jul 14, 2009 4:10 am

Lew, Here's to Dr. D. opening up those blocked jugulars and getting you fixed up and good to go!! Will be thinking of you during your surgery today and please send word as soon as you can that everything went OK.
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Postby whyRwehere » Tue Jul 14, 2009 4:32 am

I am on East Coast time, so am having to wait forever for news....I really really hope the bladder issues get better, it is a major downer for my husband and it would be inspiring. No doubt it will take time though, for healing to happen, so I don't think we will know right away...
Have a good surgery and I am interested in the different stent thing....my husband mentioned this ccsvi stent surgery to a nurse w/ MS and she mentioned she was worried about stroke with a stent...would like some input on that as well (and well, if you are pretty bad and getting worse, you would be willing to take the risk, huh?).
Bon Courage!
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Postby Sharon » Tue Jul 14, 2009 5:31 am

Great to hear from you Loobie! You have blockages .... what good news.
Good luck in the surgery - try to eat a cracker or two in the post op so you do not get nauseated (it sure helped me!). Once those stents get pressurized, you are on to a new adventure - hope you have immediate relief of some of those symtoms.

BTW - would you not love to see that matrix that Dake is building?! I think it would be fascinating.

Be at peace - you are in good hands
Sharon
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Postby gibbledygook » Tue Jul 14, 2009 6:08 am

Fabulous! Don't forget to ask for a catheter if you're having bladder trouble. I spent the night after the op hobbling out of bed and peeing in a cup and I think the night watchman saw me but I couldn't make it to the toilet with the drip in my right hand. It was quite a performance. Good luck with everything. I sure hope you get the bladder improvements that I've felt. They weren't exactly immediate though.
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 CureOrBust » Tue Jul 14, 2009 6:11 am

sorry to hear you have a blockage, but HUGE CONGRATULATIONS and best wishes on the fact it can be fixed! (sure, I am allowed to be little contradictory, it just sounds wrong to congrat someone on a stenosis, just that it was found!)
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Postby peekaboo » Tue Jul 14, 2009 6:13 am

Early to bed Early to rise...great news to wake up to Loobie! I'll be watching for your post op news.
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Postby mrhodes40 » Tue Jul 14, 2009 7:03 am

Lew I am so glad for you! This is wonderful news; noon and you will have taken your chance that this is the real deal.

I love that you said
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


Lew this is the best possible explanation of this great man. If I coulda written it I woulda. We all understand this is new, but some of us will not make the next wave of "possible" and I think he understands this urgency about this disease.

DO get the catheter and explain why you need it overnight or they'll try to get it out the night before so they can see you "up and walking to the bathroom" overnight AND make sure that you can pee on your own which is standard medical practice they do not want you laying in a hotel with a peeing problem that you didn't have before so we NEED to see our patients up and walking it gets their blood moving and is good for people, and if we see they are peeing we are happy........ in general. I was lucky the cath got accidentally left in overnight and I did not have to worry about walking to the bathroom, that fact they had an IV pouring fluid in or that water I drank all night. I feel for ALex, that would have been me if I'd not had the cath overnight.

That having been said Dudes have it easy cause you can also request a urinal.........

And there is such a thing as a "condom cath"; not for in the hospital but for long term use at home or at work. It works the way you think it might and does not go into the bladder itself so preserving some normal function in that it does not drain the bladder constantly and you still "control" the flow as normally. I'm sure people get this, but you guys have much better plumbing than us gals in this convenience angle here. its a thought for future outings/ trips. I have never lived with one being female, if someone does this you might report on how it worked.

Lew good luck and have a fun time watching it all happen in the OR. They are COOL . On me the stents felt sharp for several seconds when they inserted them but it was over fast.... and I had a lot of tingles right while I was on the table that were kind of interesting and my upper back / shoulder was twitching. just how it was in my case, but I found the whole experience not scary and fun. I was so SOOO glad to be there...
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 chrishasms » Tue Jul 14, 2009 7:15 am

123
Last edited by chrishasms on Sun Dec 06, 2009 12:08 pm, edited 1 time in total.
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Postby IHateMS » Tue Jul 14, 2009 9:04 am

catfreak wrote:Lew,

Really glad to here your blocked


:lol: I think it is 'funny' that we are wishing or hoping for blockages. It just seems counterintuitive. 8O
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Postby peekaboo » Tue Jul 14, 2009 9:05 am

Lew wrote:
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


I hope these were just examples to differentiate his samples (us). I had no communication w/Dr D regarding my health as described above. I wonder what his categories are. The obvious would be types of ms.

Chris Wrote
There is more risk of a stroke from a pulmonary embolism, leg clot, or bi- pass than this procedure.


What would be the consequences that no venous repairs were made? At this time no one knows but I can imagine worse things than ms...
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Postby Loobie » Tue Jul 14, 2009 10:06 am

Just about to leave but I wanted to post one thing. I wrote him a straight up text about everything that I could remember happening to me medically, including things I thought were totally irrelevant and he was very enthusiastic about that and said he loved it because of the matrix he's putting together. I put everything including knee surgeries and all of it. He wants it all, he'll throw out what he doesn't want, but he wants all the information about your health history that he can get. I don't know if Nick is new since you went Holly, but he has this freshly graduated co-ordinator who is compiling a lot of this type of stuff for him. Well I'm going to go completely chill out for about an hour and then go get "cut on" :lol: :lol: .

BTW, I have spoken about my screaming case of IT band syndrome that is aggravated by walking. Well I could have walked, albeit slowly, to everything yesterday. However I chose to have my Mom push me around and it was very good for that. So don't be proud and walk if by the end of 200 yards or so if your gait gets affected as does mine. My left leg (the one with the IT band and also the weak one). I always did that as I always do everything I'm physically capable of, but you don't want to be all confused and dizzy and everything else when you're checking in. So letting someone push me around was huge and I recommend it.

Here we go!
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Postby Artifishual » Tue Jul 14, 2009 10:10 am

good luck bud :wink:
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Postby Needled » Tue Jul 14, 2009 10:27 am

Well I'm going to go completely chill out for about an hour and then go get "cut on"

Ok, I synchronized my watch, and I'll be thinking of you all afternoon. Is it possible I'm more nervous than you are? Good luck!
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