I have more then CCSVI .Just got MRV Report, Pretty Scared

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

I have more then CCSVI .Just got MRV Report, Pretty Scared

Postby LymeNurse » Sat Apr 16, 2011 4:20 pm

The report notes Moderate Stenosis on the Left Internal Jugular. The tech messed up and the Azygos can't be seen. The Right IJ is Normal.

However, Above the IJ on that right hand side, there is a blood clot in my entire Left Transverse Sinus and almost 2cm into the Right Transverse Sinus.

These Sinuses are higher up and drain into the Jugulars.

Has anyone ever heard of this. My IR is stumped over these findings. I'm wondering if I belong in a hospital as my Liberation is not scheduled until 5/2/11.

Any thoughts ? Anyone ever hear of this before ?

Thanks in advance,

Gary
User avatar
LymeNurse
Family Member
 
Posts: 40
Joined: Fri Apr 15, 2011 3:00 pm

Advertisement

Postby bluesky63 » Sat Apr 16, 2011 4:42 pm

http://www.medhelp.org/posts/Neurology/ ... how/291951

I don't have any answers but I did at least want to show you that other people have encountered the same situatioln. There are other people here who are much, much better than me at research and finding info but I figured you needed some info quickly. So my not-so-good info is at leasta start till you get something better! Hang in there. :-)
User avatar
bluesky63
Family Elder
 
Posts: 441
Joined: Mon Apr 18, 2005 3:00 pm

Postby Cece » Sat Apr 16, 2011 4:54 pm

You might want to consult with a neuro interventional radiologist now that you are getting more into the brain venous structures and especially since you say your IR is stumped. You haven't had any recent acute symptoms? Your symptoms are more chronic, along with the Lyme, as you've said?

Does the moderate stenosis on the left appear to be at the level of the valve (collarbone/near the bottom of the neck) or elsewhere? Without an MS diagnosis, I'm guessing but don't know that this might not be a case of valvular CCSVI but perhaps the narrowing in the jugular is due to poor inflow because of the thrombosis of the transverse sinus?

I'd say consult a neurointerventional radiologist and listen to what he says. Wishing you the best.
Cece
Family Elder
 
Posts: 9024
Joined: Mon Jan 04, 2010 4:00 pm

Here is a picture and Thanks for your Replies

Postby LymeNurse » Sat Apr 16, 2011 5:57 pm

Doesn't look like I'm in immanent danger and I saw an MS patient on that Forum post that she too had this...

I guess I have to wait for Liberation day and see what happens.

Image
http://img88.imageshack.us/i/88873070.jpg/
User avatar
LymeNurse
Family Member
 
Posts: 40
Joined: Fri Apr 15, 2011 3:00 pm

Postby CD » Sat Apr 16, 2011 10:12 pm

Hi Gary,
Were you ever in a car accident, have a sports injury, hit your head during a fall, been in any sport fights, or taken any blows to the face or head? These clots can occur with any head trauma. JMO

Have you had Lyme disease? Infections like that can cause these too. I see you wrote LymeNurse, your career, or do you carry that germ?

I wish you all the best with your procedure in May. I would see another doctor before the procedure, just for a second opinion. If not, make sure the treating doctor sees the MRV and report. He may not test up that high with the dye.

Did they do your Ultrasound next to your ear and head? They checked my cerebrals and sinuses with another US attachment.
Good luck,
CD
User avatar
CD
Family Elder
 
Posts: 217
Joined: Sun Dec 19, 2010 4:00 pm
Location: USA

Re: I have more then CCSVI .Just got MRV Report, Pretty Sca

Postby drsclafani » Sat Apr 16, 2011 11:29 pm

LymeNurse wrote:The report notes Moderate Stenosis on the Left Internal Jugular. The tech messed up and the Azygos can't be seen. The Right IJ is Normal.

However, Above the IJ on that right hand side, there is a blood clot in my entire Left Transverse Sinus and almost 2cm into the Right Transverse Sinus.

These Sinuses are higher up and drain into the Jugulars.

Has anyone ever heard of this. My IR is stumped over these findings. I'm wondering if I belong in a hospital as my Liberation is not scheduled until 5/2/11.

Any thoughts ? Anyone ever hear of this before ?

Thanks in advance,

Gary


a word of caution on interpretationof these brain MRVs. I sent a patient for one and results came back filled with thrombus. Second read didnt see any. the consult I sent my patient to thought less stenosis that second read.

i think sometimes MRV can be confusing.

Stenosis of the IJV can lead to thrombus upstream, sometimes clot in IJV also can be quiet and occult too
User avatar
drsclafani
Family Elder
 
Posts: 3142
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby Blaze » Sun Apr 17, 2011 4:32 am

My MRV done over a year ago revealed either a thrombosis or a congenital hypoplasia in my right transverse and sigmoid sinuses. My Doppler US showed complete blockage of my right jugular and partial blockage with reflux in my left jugular.

I have consulted with three physicians who treat CCSVI. I understand there could be other factors involved.

For now, I have decided not to pursue treatment outside of Canada. And, before anyone points it out, I do realize I will likely be waiting a long time if I wait until it's available here.

I may change my mind as more is learned by the wonderful pioneering docs.

Great input from Dr. Scalafani. I agree it is confusing. The more we learn, the more complex it becomes.

I'm not sure if that helps with your decision, but you're not alone in your confusion and even alarm. Best thing is to talk to the doc who will be doing your treatment.
User avatar
Blaze
Family Elder
 
Posts: 405
Joined: Sun Jun 27, 2010 3:00 pm

Postby THEGREEKFROMTHED » Sun Apr 17, 2011 12:50 pm

Please dont take everything teh MRV says to heart!!!!!!!!!!

Have you ever watched one of Haackes discussions on illustrating the MRV? YOu need to be a rocket scientist to figure it out.

Get an venogram if your worried and then if your blocked get a good reaming.
User avatar
THEGREEKFROMTHED
Family Elder
 
Posts: 162
Joined: Sat Mar 27, 2010 4:00 pm

Spoke with my IR

Postby LymeNurse » Sun Apr 17, 2011 2:22 pm

He agrees with drsclafani and a few others who posted similar.

He says try not to be too concerned and let him do the angioplasty and go from there.

He said if it is a clot, then perhaps a Thrombectomy or Coumadin...

I didn't ask the question whether or not TPA was an option if they do find it.

To Blaze above, you should look into a product called Boluoke. It's an Antifibrinogen supplement you can take which is actually an enzyme.

From what I have ready it does not "thin the blood", but works on these kinds of problems.

And, yes to the person who asked if I have Lyme disease. I have been treating it for about 2 years. I'm just about 100% Neuro with my symptoms as "in the head".. I do have aches and pains elsewhere and even Postural Tachycardia and Shortness of breath for no reason just sitting sometimes.

Much of it is Autonomic Dysfunction.

I am beginning to believe that CCSVI is a problem for anyone with Neuro issues. My theory is MS, CFS/ME, FMS, Autism, Parkinsons, etc.

When there is no test and you have Neuro issues, CCSVI should be ruled out. Just my opinion and I pray to god that I get some relief from my procedure.

Thanks again everyone..

Gary
User avatar
LymeNurse
Family Member
 
Posts: 40
Joined: Fri Apr 15, 2011 3:00 pm

Postby leetz » Sun Apr 17, 2011 2:56 pm

GARY...I WILL BE PRAYING TO GOD FOR ALL OF US AS I DO AND WILL CONTINUE TO DO.. :)
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
User avatar
leetz
Family Elder
 
Posts: 294
Joined: Tue Oct 06, 2009 3:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service