Hi! Anna wanted to share her "negative" MRV Pics

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

Cerebellar Thoracic Outlet Syndrome (CTOS)

Postby SammyJo » Tue Jan 05, 2010 2:12 pm

Nice work on the images Curious!

Plus I want to note, that Anna's scan didn't really go down far enough to adequately pick up the collarbone region, another prime suspect in our stenosis hunt.


I've found another disorder that is a "cousin" to CCSVI, called Thoracic Outlet Syndrome (TOS). This affects arteries and veins of the arm, the compression is in the shoulder area (link). The nice bit for us, TOS is well understood, there is a TOS association, and they have a list of doctors in every US State who treat it (link). Why can't these vascular docs just scoot up a few inches and look at the neck area?

Also, my friend Destiny called one of the doctors in Spain behind a study titled Neck and brain transitory vascular compression causing neurological complications. Results of surgical treatment on 1,300 patients. (link) "Cerebellar Thoracic Outlet Syndrome (CTOS) and its neurological complications, among which are ipsilateral paralysis, Parkinson disease and others." The doctor said they are now up to 1600 procedures and have been trying for 20 years to alert the world that vascular blocks even in the shoulder area can lead to neurodegenerative conditions.

So try contacting the TOS doc in your State. If they need a scan protocol, here is Dr. Haacke's http://www.thisisms.com/ftopict-9107.html More details at http://ms-mri.com

If your local facility has a 1.5 Tesla GE brand MRI machine, I can send you Dr. Dake's MRI protocol, PM me or use this email (form).

Bottom line: Don't let your doctor send you in for another MRI of MS without scanning your neck and thoracic area too. You have a right to know the cause of your condition, and diagnosis will put you one step closer to intervention.
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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Postby Ruthless67 » Tue Jan 05, 2010 5:10 pm

SammyJo,

Great find and great sugestions. Information like this is why I sign onto TIMS at least 20 times a day, lol!

Lora
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Postby cinder21 » Tue Jan 05, 2010 6:03 pm

Lets not forget that the problem isn't only stenosed veins, but also valvular problems which the MRV doesn't show.
22 yr old male located in the caribbean. Suffering with MS like symptoms from early 2008 with multiple relapses under my belt with optic neuritis. Not dx'd as yet however. Hope is to ultimately be tested for CCSVI
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Postby CureIous » Tue Jan 05, 2010 6:28 pm

cinder21 wrote:Lets not forget that the problem isn't only stenosed veins, but also valvular problems which the MRV doesn't show.

E*X*A*C*T*L*Y*. Come on UT! Everyone chant! lol.
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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Re: ccsvi

Postby Mutley » Wed Jan 06, 2010 5:53 am

annad wrote:Hi to all,
Mutley asked:
What else can you tell us about Anna? How long has she had MS and how is she?
What would you like to know? lol
I'm new to this site and ccsvi so I don't feel comfortable enough commenting on my newly posted 'glam shots'. I am certainly not stopping here because I got one result of "normal". Most people who know me will tell you I'm anything but. . . ha ha
As for my MS . . .I've been diagnosed 17 years with RRMS. I'm still doing 'ok' but we all know that's all relative. After my last attack, 6 years ago, I was left unable to work due to my fatigue and my legs that don't care to work or walk as much as they use to. Like everyone else, I have good days and bad days or rather. . . worse days and bad days.
I have been attached to the computer since W5 aired and I am certain we will all find some relief from the Mighty Sexy disease in the very near future. The soon the better!
best wishes to all on this journey!!


Hi Anna,

First of all let me say welcome to the site, you’ll be in good company here. It’s certainly a very exciting time now that CCSVI is well and truly on the radar. There appear to be all sorts of different vein issues that underpin CCSVI (my Jugulars are twisted and too short) so hopefully it’s won’t be long before the pro’s find the underlying vein issues associated with your MS problems.

Best Wishes,
Mark.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby annad » Wed Jan 06, 2010 6:06 pm

Thanks for the welcome Mutley!

Yes, there's lots of information here. . . overwhelming. However, the frustration arises when no one will test or treat you. We have mounting proof of all this and still, we must wait for the system to kick in and get some relief from this disease that locks us into our bodies. You're jugulares eh? I'm glad you know where your 'issue' lies.
I take it you are off to Poland? Keep us informed!!
We're all wannabies (sp?)
a
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Postby mrsilkykat » Wed Jan 06, 2010 9:51 pm

Wow, these are amazing pictures to look at. I'm so impressed with Mark's skill in getting them to us. Thanks to you both.

However, I can't really know what I am seeing or even quite follow Mark's comments. Perhaps further study will enlighten me. My question is, were these done on a 1.5 Tesla?

I can easily get an MRV on a 1.5 Tesla but I have read that a 1.5 is not strong enough to get a good diagnosis. I also believe the Stanford MRVs were on a 3T. Am I correct?

Our nearby university medical center has many 3.0s, a 4.0 and a 7.0. I can't help but assume a 7T is the way to go, particularly in light of Dignan's post from 12/17/08 (I have been catching up on the history of your group).

Any feedback on this?

Thank you.
Kat
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Postby CureIous » Wed Jan 06, 2010 10:41 pm

[quote="mrsilkykat"]

However, I can't really know what I am seeing or even quite follow Mark's comments. Perhaps further study will enlighten me. My question is, were these done on a 1.5 Tesla?


Any feedback on this?


Dont worry, sometimes even I don't understand my comments, they only make sense to me when I write them, then it goes away lol. I use the edit, delete, and backspace keys more than any others! I know it's kind of confusing at first, I spent many hours poring over mine, comparing to anatomy pics, reading on here, etc. I got a thick skull so it takes a bit longer sometimes.

I'm pretty sure those were shot on a 1.5, without reloading the CD. My main thing on those one of the main suspect areas where the jugulars dive down. On one of those, with the double lines, I'm showing the same view as if you are standing next to Anna, looking inside her head in the direction of the lines, as the "full head" view where the jugulars are practically buried (to our view) under all the other stuff. More to come on this stay tuned...

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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Postby Algis » Wed Jan 06, 2010 11:11 pm

You can read it at the top of the scan: 1.5T GEMSOW

(General Electrics system).

HTH
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Postby mrsilkykat » Wed Jan 06, 2010 11:22 pm

I was embarrassed to ask that question and now I'm really glad I did.

Mark, I'm printing your reply so I can view the pics and read at the same time.

Algis, thanks for clarifying the GE machine.
Kat
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