Need info ASAP!!

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

venogram tomorrow!! I am frightened...

Postby Kacey » Mon Jan 11, 2010 7:09 pm

I used a connection and got an appointment with a leading Vascular guy in the area. He hadn't heard of the Liberation procedure. I brought him every article and even downloaded Pubmed research by Dr. Zamboni. He sat down with us for over an hour, looked through research...said he would call Dr Dake and check with his team of surgeons. Was going to really research this and make sure it was safe for my husband to do. He was very excited about this "new frontier". My husband had an ultrasound while in the office which was normal. He also went two weeks ago for his brain and neck MRV which, I believe were read as normal although some of the area was not well visualized. I am seeing so many people's successes on this panel and am so hopeful, but I fear that I will have pushed my husband into a procedure that will reveal nothing.....
I have faith, I do. But I'm so scared right now that our hopes will come down crashing....please tell me that someone out there has had a normal workup! The vascular doc says that the true test is the Venogram.....
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Postby cheerleader » Mon Jan 11, 2010 7:25 pm

hey Kacey-
hang in there. You did the heavy lifting, you got your husband an appointment for a venogram with a vascular surgeon who is interested in seeing if this is part of your husband's illness.

My fear, as we were flying up to Stanford, was the exact same as yours...I felt like I was wasting my husband's time and limited energy looking for crazy answers. But it worked out.

Whatever tomorrow brings, I wish you and your husband well.
Keep us posted,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Kacey » Mon Jan 11, 2010 7:35 pm

Oh Thank you, Cheer.....I know you know what I'm going through and you have been so brave and such a force in all of this.
I wish I was on the other side of it right now, with a huge smile on my face.... Thank you, my dear...
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Postby bestadmom » Mon Jan 11, 2010 7:36 pm

Kacey,

I hope it all works out for the best. Where are you located? We've got a large list of interventional radiologists so if you can't get what you need, there's more of them. Please keep us updated.
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Postby Kacey » Mon Jan 11, 2010 7:44 pm

We live in Hudson, NY. About 30 miles south of Albany...
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Postby bestadmom » Mon Jan 11, 2010 8:06 pm

If you pm me your email, I'll send you my lists. We focused on NYC, NJ, CT and MA. My insurance only goes up to Dutchess County so I didn't go out of my coverage zone. But my lists are national.

Have you tried Albany Medical Ctr or Strong in Rochester?
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Incredible!!! Blocked jugular!

Postby Kacey » Tue Jan 12, 2010 3:28 pm

So we went today for the venogram. Before the procedure, Dr.Mehta came to talk with us, told us that his buddy is Dr. Dake!!! I asked if he had called him about the procedure since he was unfamiliar. He did one better. He actually flew out to Cali 3 weeks ago and had him show him what to look for!!!!!
He did the venogram. Michael's left jugular vein was blocked 70%. He underwent angioplasty.
Of course, I cried like a blubbering fool! We were all really dumbfounded, truly. But there it was, that lovely blocked jugular!
Michael is exhausted! Snoring away on the couch, sore groin and neck/shoulder, but I am anxious to see if there will be any improvement in his symptoms....
Praise the Lord! Thanks to Dr Mehta, Dr Dake and all the pioneers out there. Thank you thank you thank you......Can't say it enough!!
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Postby cheerleader » Tue Jan 12, 2010 3:46 pm

Kacey-
I am so happy for you. Really. I hope the recovery goes smoothly, and your husband's jugular flows freely. You found another doc to treat CCSVI! Good for you!!!! One by one, the doctors are showing each other what to look for, and how to address this.
Happy New Year, Kacey. Please keep us posted.
continued blessings-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby magoo » Tue Jan 12, 2010 4:18 pm

Wow Kacey!!! You have made some amazing progress! I am hopeful you and your husband will be celebrating his liberation soon! Your husband is one lucky guy! Keep us posted:)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Sharon » Tue Jan 12, 2010 4:19 pm

Kacey -

This is wonderful news - thank you so much for doing the hard work of finding the IR's to do the testing and then finding a doctor who was willing to step outside his comfort zone.

Keep us posted on how your husband is doing.

Sharon
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Postby ozarkcanoer » Tue Jan 12, 2010 4:32 pm

Kacey !!! I am so happy for you and your husband. What a wonderful story, and it gives all of us out here such hope !! :D :D

ozarkcanoer
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Postby ppicklee » Tue Jan 12, 2010 4:33 pm

Kacey I am so happy for you, your husband and your family. I am a newbie at all of this. So everyone please bear with me. What is the difference between an MRV and venography? BTW I am PPMS. Does this make any difference? Any info would be most appreciated.
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Postby Brynn » Tue Jan 12, 2010 4:50 pm

Fantastic news, Casey! Your efforrts opened the right doors! I hope your husband sees inspiring improvements! Bless you, Brynn :D :D :D
41 years old, dx 1998, current EDSS 6.5
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Postby ppicklee » Tue Jan 12, 2010 4:52 pm

PS I don't know if I did this right or if I'm in the right place or what I said is appropriate or or or... perhaps if there is a precursor definition for newbie I should be that!
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Postby CureIous » Tue Jan 12, 2010 5:00 pm

Very proud of what you have done. Another caregiver goes to bat, and hits a home run! Isn't it great when Dr's do that "flying cross-country to make sure I get it right" thing. WOW.

You are a pioneer in your own rite. Let this be an inspiration to others, DON'T GIVE UP.

So happy for you guys, keep us posted, please!!

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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