April 9th in New England!

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

April 9th in New England!

Postby tzootsi » Mon Apr 05, 2010 2:51 pm

My wife Melanie, is scheduled for a venography this coming Friday, April 9 at a major New England medical center. Melanie was dx’d with a mild case of MS in August of 2007. Her symptoms include a heavy right leg, balance issues, burning skin, etc. Thanks to this forum (thank you Cheerleader!), we took it upon ourselves to call the interventional radiologist at our local medical center this past November. He had never heard of CCSVI, but was interested as soon as I explained what it was. A few weeks later, he had my wife come in for a Doppler. He found some turbulence in the left jugular, and felt it was sufficient evidence to proceed with the venography (he felt an MRV wasn’t necessary). Luckily, he is friends with both Dr. Dake and Dr. Sclafani and is now in contact with them.
I’m not at liberty to disclose the doctor at this point, but hopefully will do so in the future. Tomorrow 4/6, we meet with him to go over the procedure, and Friday is the big day! We will keep you posted.
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Postby cheerleader » Mon Apr 05, 2010 3:01 pm

W00T!
Great news, tzootsi!! Your bringing the research directly to a vascular doctor will help so many more people. This is how we do it. One doctor, one patient at a time. The ripple effect....one pebble tossed in the water sending out hundreds of circles. With wishes for answers for your wife-
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Mon Apr 05, 2010 3:21 pm

tzootsi,

Congratulations and thanks for your efforts at finding an IR who is favorable !!! Good luck with your CCSVI adventure !!!

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Postby bossman » Tue Apr 06, 2010 6:29 am

Please keep us posted!! GOD BLESS!!!
BOSTON the Birthplace of LIBERTY IN AMERICA
and soon LIBERTY for MS patients. GOD BLESS AMERICA

GO RED SOX!!
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Postby tzootsi » Wed Apr 07, 2010 7:36 am

Well, my wife and I had a pre-procedure meeting with our IR yesterday, and it went very well. As I mentioned before, he tested Melanie with a doppler in November and did find some turbulence in her left jugular. This doctor is very laid back about this whole issue, and was willing to answer our questions and concerns. He did mention the possibility of using stents, however Melanie requested him to take a more cautious route and do ballooning only. No problem - however he advised us that there was a good possibility that the stenosis may reappear. But again, he felt that this was no big deal, just do it again if necessary. One thing we didn't realize was that Plavix could be helpful even in ballooning as far as preventing re-stenosis, so he will prescribe a month's worth of Plavix.
Friday is the BIG DAY!!!
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Postby bossman » Fri Apr 09, 2010 7:01 am

Please give an update on your procedure when you get a chance. Hope all went well.
GOD BLESS!!
BOSTON the Birthplace of LIBERTY IN AMERICA
and soon LIBERTY for MS patients. GOD BLESS AMERICA

GO RED SOX!!
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Postby tzootsi » Fri Apr 09, 2010 2:26 pm

Melanie had the procedure this morning, and it went very well. The doctor found both jugulars were pretty blocked, and had to balloon each side 3 times. No problems - the procedure took a little over an hour. The actual ballooning was painful, but bearable. Melanie is now home and relaxing on the sofa. She is very wiped out, mostly from lack of sleep the past few nights due to the stress of anticipation.
We will keep you posted.
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Postby whyRwehere » Fri Apr 09, 2010 2:33 pm

It shouldn't have been painful, I was told, anyhow....hope it has a good effect, please keep us updated!
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Postby ozarkcanoer » Fri Apr 09, 2010 2:37 pm

I hope Melanie gets some good sleep and some real healing from the procedure. You know that we here at TIMS love to hear about every patient treated. Thank for for letting us know !!

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Postby catfreak » Fri Apr 09, 2010 5:29 pm

tzootsi,

Glad to hear everything went well. Tell her to take it easy the next few days.

Keep us posted!

Cat
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 tzootsi » Sat Apr 17, 2010 10:50 am

Well Melanie is now 8 days out from her procedure, so here's a summary of what happened:
She went in for the procedure early Friday April 9. The whole procedure took a little over an hour, and went very smoothly. The doctor found both jugulars had high grade stenosis in the lower portion, and both were ballooned 3 times (the only part of the whole procedure that was painful).
Melanie went home 2 1/2 hours later, with a mega dose of plavix, and a one month supply. She was pretty wiped out for the first few days, but is now feeling fine.
Here are some things that appear to have improved at this point:
- Less morning stiffness
- Warmer right hand
- Slightly better balance
- A sense that the world is 'more vivid'
- Her heavy right leg doesn't seem to get as draggy after shopping for a few hours.

We will keep updating this every few weeks.
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Postby ozarkcanoer » Sat Apr 17, 2010 3:00 pm

Thanks for the report ! I hope Melanie continues to improve !

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Postby Loobie » Sat Apr 17, 2010 3:37 pm

whyRwehere wrote:It shouldn't have been painful, I was told, anyhow....hope it has a good effect, please keep us updated!


It hurts like hell when they inflate the balloon, but only for that short period. That's what she was referring to.
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Postby whyRwehere » Sun Apr 18, 2010 12:26 am

Hmmmm, my husband did not have any pain, and his doctor said he shouldn't feel any. He did notice it, says he heard a sort of creaking noise, but that was about it.
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Postby tzootsi » Sun Apr 18, 2010 7:18 am

whyRwehere wrote:Hmmmm, my husband did not have any pain, and his doctor said he shouldn't feel any. He did notice it, says he heard a sort of creaking noise, but that was about it.


I guess every situation is different. Perhaps the location of the stenosis is a factor or how narrow the vein was. Also - we requested no stenting, so perhaps the doctor was more aggressive in his approach? Melanie definitely had some pain during the actual ballooning, but it was brief. Her neck is still sore at this point, but getting better.
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