We had good news and bad news

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

Postby MS_mama » Thu Nov 26, 2009 4:09 pm

That's great that your husband is getting treatment... wish you the very best!
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby cah » Thu Nov 26, 2009 4:17 pm

Thank you for answering!
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby bluesky63 » Fri Nov 27, 2009 8:27 am

You must be so happy to have treatment, although it sounds like you'll still have to follow up again.

The info about the other veins being abnormal is really interesting. I searched for details on vein anatomy and saw this:

http://www.bartleby.com/107/164.html

If you click through all the links it's got wonderful details on all the body's veins.

It makes sense to image more veins to look for stenosis/etc. Why would one part of the body have venous abnormalities and not another? The whole thing is fascinating!

Hope you're enjoying the day together. :-)
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Postby judipom » Sun Nov 29, 2009 12:35 pm

Hmmm..I'm new to all this and just found out about CCSVI. I live in North Carolina in a big research center near Duke University and UNC Chapel Hill. Anyone else out there from NC who has any news????
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Postby whyRwehere » Sun Nov 29, 2009 1:22 pm

Thanks bluesky, I know, it sounds obvious now, but I hadn't thought of it myself, it was the doctor, who is very interested in all the veins, who decided to look. It was a bit of a shock, but good to know anyhow...it could explain all the problems my husband has in that area. I'm wondering if people like Marc got checked in all veins...
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!!

Postby mrhodes40 » Sun Nov 29, 2009 1:24 pm

I consider that he has had treatment MRhodes, because one could not see the jugular before and now you can in the radios...the part of the jugular she wants to work on again went from .5mm to 7mm


apparently I nodded off while I was reading Why! :oops: I am sorry about that-- of course a balloon is treatment! I am glad they were able to recover blood flow from .5 to 7mm,that is great news!
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 whyRwehere » Sun Nov 29, 2009 1:32 pm

yes, I thought that was odd, that you said that. In any case, no big difference to report. He's still having the Foley cath on, so it occupies his mind and that topic is driving me crazy! He's got plenty to heal and I'm sure time will heal something...
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Postby cheerleader » Sun Nov 29, 2009 2:17 pm

Why...thanks for sharing. I know you've been working so hard to get your husband tested and treated, and I've really felt for you. I suppose knowing that there is actually something wrong is truly good news/bad news. I am glad they were able to balloon his jugulars and get some blood flowing. Let's hope the healing can begin. Keep him moving and hydrated.

So far, we've seen cysts, double jugulars, bony and tissue obstructions, faulty valves, and now an absence of presacral venous plexus. And what do all these people have in common? They all have a variety of venous malformations and have MS. MS didn't give Lew a double jugular with an extra valve. MS didn't give my Jeff a tight, muscular neck and I don't think MS made your husband's presacral venous plexus disappear, or his jugulars collapse. I think you have a smart doctor, why...checking the veins that far south. I still want my hubby's legs scanned. Good info.

Hang in there, why...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby whyRwehere » Sun Nov 29, 2009 3:02 pm

Thanks, Joan, it's a relief to get somewhere. We are very fortunate to have been referred to this doctor and we look forward to seeing her again at the end of next month...then maybe we will find a way to improve my husband's situation.
I have to thank you, and Marie, as well as all the doctors who take an interest in ccsvi. We would not have started on this path without you.
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Postby watoo75 » Mon Dec 07, 2009 5:22 am

Hello everyone
I just want to know specifically the benefit if ccsvi is proven.

I mean, is it 30% better, 50 or 80%?

Thank you
Sorry 4 my english, i am a frenchy...
Can you tell us exactly, concretly your amelioration after the angioplasty?

Thanks again!
Watoo
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Postby whyRwehere » Mon Dec 07, 2009 6:43 am

Watoo,
I think the case will be different for everyone. You need to consider that the blockage can have different causes, meaning some are more fixable than others, and the length of time having "MS", some are more advanced, so slower to heal or not possible to heal. In my husband's case he is fairly advanced and his problem is not easily fixed. It is hard to say if he has noticed a difference, because he needs to go again, plus he has been suffering from Urinary tract problems, and this causes him to feel worse anyhow.
Other people have tried to put numbers on their improvements, but they are not in this thread. After my husband's next intervention, I will post if he has felt any change...that will be at the end of the month.
Hope you can read more here...
Why
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Postby watoo75 » Mon Dec 07, 2009 9:07 am

Thank you why!

Take care
Watoo
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Postby kevin4apenny » Sat Mar 20, 2010 2:30 pm

Dear Whyarewehere

Firstly please forgive any inadvertant coincidence...I do not want to offend anyone.
You seem very well gen'd up on the whole Liberation thing...... so you would be be the one to ask, or if anyone reading thi can comment... I read from another thread that, although there are known complications and risks, there has been a tragic fatality......perhaps the board can post a sticky.....?

Kev
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Postby whyRwehere » Sat Mar 20, 2010 2:41 pm

Kev,
I am really surprised that you dug up this thread to ask that question. You will be referring to Holly, aka peekaboo, who sadly passed away last summer. Her death was not related to the actual procedure, but to an inherited condition. Because she was on Coumadin, this exasperated the problem. Please search for the thread on Holly, if you need more details.
She was lovely on line, I was just remembering her today and missing her posts.
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Postby cah » Sat Mar 20, 2010 4:00 pm

When I got here, Holly already had passed away. But I read some of her posts and really must say I wish I had met her.

There's an idea how we could provide the right information about holly. We don't need another sticky for that. I think the "tracking project"-thread would be the right place for that also. So couldn't somebody of the "older" members, perhaps somebody who has known her personally, write an entry for holly in the tracking project? It would not only help to eliminate those wrong information about her passing that are so widely spread now but also would help keeping the memory of her alive. Although I can imagine that this is a hard thing to do.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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