Turned down at Stanford

samish · Post by **samish** » Fri Nov 27, 2009 9:21 am

Despite having MS for 35 years with all the corresponding symptoms, Dr. Dake did the test (MRV) and found NO blockage. No stents were placed. no relief of symptoms. I have no blocked veins. I cried all the way back from Standford.

Arcee · Post by **Arcee** » Fri Nov 27, 2009 9:29 am

Oh, how upsetting. I am so sorry. To have prepared and to get such a result would make me cry all the way home too. I do hope that there are some ideas out there that may point you in a different direction.

zap · Post by **zap** » Fri Nov 27, 2009 9:32 am

That sucks, I'm sorry it happened that way ... although now I'm of course wondering if there were stenoses Dake didn't see - given how he is not seeing Azygos stensoses as Zamboni saw so many of with Doppler, perhaps you will turn out to have involvement there only detectable with Doppler? Do you happen to have spinal lesions?

LR1234 · Post by **LR1234** » Fri Nov 27, 2009 9:44 am

Hi Samish,
I am so sorry to hear about this, I understand how devasted you must feel.
if you don't mind me asking, what is your EDSS? Are you on any special MS diet?

L

ozarkcanoer · Post by **ozarkcanoer** » Fri Nov 27, 2009 9:44 am

I think we need more radiologists trained to do Dr Zamboni's doppler ultrasound all around the world. This test is how Zamboni finds the stenosis, not just MRI or MRV. Dr Haacke has a disclaimer on his website that if the MRI doesn't show any stenosis then a full doppler ultrasound examination should be done by someone with the right training and experience. So samish, there is still hope for you yet !!!

TFau · Post by **TFau** » Fri Nov 27, 2009 10:10 am

I'm so sorry to hear this Samish. There has to be an explanation and hopefully the doppler answers it.

Was Dr. Dake surprised? I wonder if this has happened very often.

ErikaSlovakia · Post by **ErikaSlovakia** » Fri Nov 27, 2009 10:11 am

ozarkcanoer wrote:I think we need more radiologists trained to do Dr Zamboni's doppler ultrasound all around the world. This test is how Zamboni finds the stenosis, not just MRI or MRV. Dr Haacke has a disclaimer on his website that if the MRI doesn't show any stenosis then a full doppler ultrasound examination should be done by someone with the right training and experience. So samish, there is still hope for you yet !!!

You are so right.
Last time I told Dr. Simka he should be cloned. Well more people should be cloned...
I am so sorry for Samish. It would be a disaster for me. I was even ready for the open heart surgery or for another attempt, just not that - no blockage!
I also thing if Samish has Doppler there is some possibility of finding something, or maybe during phlebography?
Erika

bluesky63 · Post by **bluesky63** » Fri Nov 27, 2009 11:00 am

Oh, I'm so sorry! Especially to work up your courage to go ahead with something and then have nothing turn up on the tests! Best wishes --

cah · Post by **cah** » Fri Nov 27, 2009 1:00 pm

Though very abstract, maybe this could help a bit: In the german csvi-ms.net-forum, Dr. Franz Schelling posted a thread called "Venous MS, this is not only CCSVI" ( http://csvi-ms.net/forum/viewtopic.php?f=2&t=249 ). He talks about "conditional" or "functional" stenosis and venous valve insufficiency. He stresses the dynamic element in the development of the venous MS on his website: www.ms-info.net (english).

He states that Dr. Zamboni's passage to the venous MS ist quite practical and "handy" and the whole picture might be more complex.

Quite interesting is this paragraph: "Those ENT-Doctors working on the stenosis of the jugular vein have found that complete disconnection of these generates just temporarily brain pressure events. Continuing or even progressive neurologic malfunctions were not described. Venous congestion solely doesn't make venous MS." (Gee, hope I translated this right.)

What does this all mean? Simply, more research has to be done. Even assumed the CCSVI paradigm is completely true, there's more to discover. Within this lies a hope for things that cannot be answered yet.

Cheer up!

Cah

jay123 · Post by **jay123** » Fri Nov 27, 2009 1:34 pm

I thought Dr. Dake was catching and correcting problems in the azygous vein or am I wrong?
I know it doesn't show up in the MRV, but doesn't he see it in the venography?

mrhodes40 · Post by **mrhodes40** » Fri Nov 27, 2009 2:09 pm

I thought Dr. Dake was catching and correcting problems in the azygous vein or am I wrong

He's seen a few not that many --Zamboni see 86% or so if I remember right.

There is more to learn and know for certain.
I am just glad the ball is rolling!

We want to be cured, like NOW, but the "cure" isn't here yet, it appers this may be the path to that cure potentially but it is not at all sure. Island GIrl has a brachiocephalic abnormality that Dr D didn't repair also--no stenosis otherwise. She decided to go home and see what else is going on with her then reconsider the BC repair possibly for some later time when more is known. You are not the only one in other words.

Thank you for sharing your story so others can hear what happened in your case.

ozarkcanoer · Post by **ozarkcanoer** » Fri Nov 27, 2009 2:18 pm

This makes me wonder if Dr Haacke's protocol would be able to find azygous abnormalities ??? Especially abnormalities below the neck. I'm scheduled for imaging with Dr Haacke's protocol on December 7. I only know what is on his website. I have communicated with his research coordinator about the logistics but nothing else.

Rokkit · Post by **Rokkit** » Fri Nov 27, 2009 5:32 pm

I am also wondering if doppler might reveal reflux in the absence of stenosis. I have noticed that Dr Simka has diagnosed valve malfunction in some of his early cases. I'm wondering if such a thing might not show up as stenosis in an MRV, but might cause the problematic reflux nonetheless. Just a thought.

CureOrBust · Post by **CureOrBust** » Fri Nov 27, 2009 6:01 pm

ozarkcanoer wrote:This makes me wonder if Dr Haacke's protocol would be able to find azygous abnormalities ??? Especially abnormalities below the neck.

I wondered the same thing and posted the question to Dr Haake at the begining of October (ie before his mail-box was flooded like now).

I wrote:I personally have downloaded and read the documents on your web-site, and although I am not a radiologist, they appear to be focussed on the head. Although I have been found by ultrasound to have a reflux in my internal jugular valve, an MRV of my head did not show any distinct stenosis of my jugulars (these have been reviewed by Dr Dake). I was hoping (i.e. looking a gift horse in the mouth....) that an MRV protocol would of identified distinct issues causing the CCSVI in the torso as well (eg "twisting" stenosis in the Azygous vein).

Have I completely missed or misread the documents?

DR Haake wrote:...points. First though if you have not had an SWI you should as if it shows you have a lot of iron in the thalamostriate system then this still may be a strong indication. Of course this is our goal to study that type of correlation...

Because of this "fear", I am trying top organise that the MRV I get, be extended to my diaphragm. I think (if I un derstand it correctly) it would be even better to take some flow cross sections/measurements, as Dr Haake does for the internal veins of the skull,. Like where Zamboni found the "sheath"/blockages, but I would be guessing this big time.

kinga · Post by **kinga** » Sat Nov 28, 2009 1:25 am

jay123 wrote:I thought Dr. Dake was catching and correcting problems in the azygous vein or am I wrong?
I know it doesn't show up in the MRV, but doesn't he see it in the venography?

now thats interesting

I have blocked azygos and it was revealed by MRV...on doppler Simka saw turbulence and valve problem in my neck,but on MRV did not see jugular problems...