MS / MRV / SWI new web site!

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

Postby Arcee » Mon Oct 05, 2009 4:00 pm

Cure, thanks so much for following through on this. It is really exciting. I think I will call the phone number they have listed and say "thank you." :D
Dr Haacke? He's the MAN!

I happened to have read all this right before my appt with my neuro and got confirmation that he is a 'big deal' as Marie notes.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby SammyJo » Mon Oct 05, 2009 6:35 pm

This is how it's supposed to be, that Hippocratic oath, doctors are supposed to help us... Makes me realize I have been so locked in a no-trust role with the MS docs for 6 years over their refusal to let patients have a medication as benign and helpful as LDN - thankful for the GPs & RNs that helped me. And now this, it's like the cavalry showing up! I'm looking forward to a new era of positive patient/doctor relationship. Dr Dake gave a lecture 'Our rock & our hard place: getting beyond competition to collaboration' I hope it can come true! We need all docs to help us get our jugulars out from this rock&hard place.

I have stayed in the loop with my MS docs in TX & WA, and will now try to get them up to speed on CCSVI. Nice Dr Frohman is paying attention at UTSW. We could use their help on mylein repair and CNS rehab. Hey, maybe they will cheer up, must have been sad treating patients that only got worse.
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Postby CureOrBust » Mon Oct 05, 2009 10:13 pm

Loobie wrote:Good, freakin' job!!!
Thanks... oh, wait a sec, you mean Dr Haacke and his team... yeah... good work guys! I think I was originally pointed to Dr Haacke by Dr Simka.

I have read the docs, and from what I can understand (not being a radiologist), the tests do not appear to investigate the veins below the shoulders.
The flow quantification sequence is repeated for the straight sinus (SS), Superior Sagittal Sinus (SSS), transverse sinuses and jugular vein.
Have I missed something? This worries me, as I don't think I have a distinct narrowing of jugulars. :?
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Postby cheerleader » Tue Oct 06, 2009 8:40 am

CureOrBust wrote:I have read the docs, and from what I can understand (not being a radiologist), the tests do not appear to investigate the veins below the shoulders.
The flow quantification sequence is repeated for the straight sinus (SS), Superior Sagittal Sinus (SSS), transverse sinuses and jugular vein.
Have I missed something? This worries me, as I don't think I have a distinct narrowing of jugulars. :?


Cure...you had jugular reflux show up on your doppler. Don't worry. An MRV done with this protocol will show your stenosis. Truth is, Dr. Dake has found stenosis in everyone's neck, with only some azygos. If you strongly feel you have azygos issues, when they go in to open the jugular, the doctor can examine the azygos more closely. This has been Dr. Dake's method. Only PPMS patients have shown azygos without jugular...and that isn't you.

thank you again for bothering Dr. Haacke to do this- (just so you'd leave him alone....)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby radeck » Tue Oct 06, 2009 10:24 am

Refreshing to see such honest curiosity. Dr. Haacke seems to be true scientist spirit. I've not been able to load the presentations, but the movie shows right jugular stenosis I believe. Above there are three images. The one on the right seems to show a stenosed jugular as well with something oval obstructing it. What is this?
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Postby Arcee » Tue Oct 06, 2009 10:58 am

I just called the number posted to say thank you. The woman I spoke with was very pleased, and had not even realized people had noticed. I assured her that many of us had and many more would and that what they are doing and Dr. Haacke's words really matter.
She said they are updating the site, including adding an email address (which will be good for words of encouragement). It sounds like they have lots of other stuff planned, including building a database so people can find facilities near them that are willing to do the tests. Very exciting.
In a similar vein (sorry, couldn't resist the pun), when I spoke with Alex recently she wanted to hear how I was doing post-surgery. She mentioned that she hears all the pre-procedure not-so-positive descriptions, but wanted to hear some good news. Perhaps those of us who are post-procedure could occasionally pass along some good stories. I'm all for encouraging any of these professionals who are in this fray.
Dr. Dake and Dr. Haacke are heroes, imho, and their colleagues also should know how important their work is.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby CureOrBust » Tue Oct 06, 2009 5:34 pm

from what I understand, they have many plans for the web site, and will be updating it weekly.
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