The wait is killing lets kill some time

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

The wait is killing lets kill some time

Postby Johnnymac » Mon Dec 28, 2009 10:57 pm

Boy this wait for independent verification and whatever else is needed before diagnosis and treatment can begin is torture.

Here's a little exercise to get you mind off CCSVI for a few...

What were your top 5 albums, movies, books, documentaries of the decade (pick one)?

Reserving the right to change my mind 8) here's my list

Albums, in no particular order:
Beck - Sea Change (2002) & Beck - Modern Guilt (2008)
One of my favorite musicians of all time, if you have never given his music a shot you can't go wrong with either of these albums.

Drunk Horse - In Tongues (2005)
True rock and roll has been all but lost for the decade (arguably decades...plural) but here and there you'll find a smaller local band that just has that something special. These guys are the real deal.

MOFRO - Blackwater (2001)
I didn't get turned onto this down-home swamp band from Florida until a friend dragged me to see them at a small venue in Dallas about 5 years ago, and can say without hesitation one of the best live performances I've ever been to (Hmm, probably pushing 150 live shows in my life). If you like that tap your foot nod your head good-ol whiskey drinking soul music then give these guys a shot.

Queens of the Stone Age - Songs for the Deaf (2002)
Pure energy, in your face rock and roll. Dave Grohl's drumming on this album just puts an exclamation point the unique vocal and guitar stylings of Josh Homme. An instant classic in my book and a must have for any lover of rock and roll.
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Postby mormiles » Wed Dec 30, 2009 7:57 am

Hi John:

Since Steve and I are a couple of old moldy, crusty slices of white bread, we're still listening to our 70's music. He's still stuck on Seals & Crofts, and I like my Pink Floyd, War, Alan Parsons Project, and Joanie Mitchell. Also, he likes Andrea Bocelli, and I like Luciano Pavarotti. A couple of times a year, we have what I call a "vinyl fest" that consists of playing actual vinyl albums on a turntable. Hmmm, I feel one coming on this weekend.

My favorite movie of the decade was "Atonement." I don't think Steve had a favorite, but he's bought alot of movies...sometimes he buys some of the same ones a second time because he forgot he'd already bought it.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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getting an appt and tests

Postby jak7ham9 » Wed Dec 30, 2009 9:40 am

hey why waste time waiting. I decided to go a different route. I called up a vascular surgeon and made an appointment. Armed with all the ccsvi info i faxed it over to his office first and asked for hime to review for appointment. Intially he thought I was nuts but he was opened minded and agreed to run doppler ultrasound test and to confer with well known neuroradiologist to get my mrv's done. He was highly surprised to see my jugular were totally stenosed. He Actully doesn't operate on neck so armed with my stenosis of jugular diagnosis i called 6 other surgeons vascular who will do the surgery in souther new jersey. i was to get all exact info from zamboni,dake, etc from their experiences and send info, tapes of surgery etc in advance. b
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Vascular surgeon

Postby Dovechick » Wed Dec 30, 2009 10:24 am

Well done Jak, if only we could do the same in this country.... Hope you find someone to do the work on you.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby SandyK » Wed Dec 30, 2009 1:16 pm

Since Steve and I are a couple of old moldy, crusty slices of white bread, we're still listening to our 70's music.

Are you kidding? I'm 39 and prefer the 70's music...Bob Seger and Jackson Brown.

You don't have to be of a certain age to know good music!

My favorite movie is The Rock. Sean Connery and Nick Cage are my guilty pleasure.
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Postby SaintLouis » Wed Dec 30, 2009 1:44 pm

jak7ham9 - that is awesome news. Do you know what kind of doppler they did on you? Was it just the extracranial and they were able to find the stenosis?
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Postby tzootsi » Wed Dec 30, 2009 1:56 pm

Yikes - don't get me going on music - I'm a musaholic - been playing, collecting and listening to music since the late 50's. Some of my favorite artists: James Taylor, Asleep at the Wheel, BB King, Gipsy Kings, Miles Davis, Laura Nyro, Carol King, The Moonglows, Billie Holiday, Manhattan Transfer, Ibrahim Ferrar, Chuck Berry, the Beatles, Sinatra, Joao Gilberto. IMHO the best music was done between 1945-1970, back when radio jockeys were free to play whatever they wanted, and you could hear all kinds of great music on the radio. So sad you really need to search out good music yourself nowadays, it just isn't on commercial stations.
It's true however, that we need to be very pro active on the CCSVI issue. Contact every interventional radiologist within driving distance - one is bound to be interested. I suspect that in the new year a lot of IR's will be getting involved in helping folks with MS - Dake will be working with many other doctors in setting up studies.
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Re: getting an appt and tests

Postby Johnnymac » Wed Dec 30, 2009 2:01 pm

jak7ham9 wrote:hey why waste time waiting. I decided to go a different route. I called up a vascular surgeon and made an appointment

Thats awesome! Very happy to see some have success....I've reached out to well over a dozen IRs and Vascular specialists here in Dallas with the only response coming from UTSW. I hope others are able to get movement as easily as you did, thats great!
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