Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

mrhodes40 · Post by **mrhodes40** » Thu Apr 30, 2009 10:19 am

I am also getting tested; the 18th. Dr Dake is a great guy.

Also I want to add that even though Zamboni says these are simple tests that can be done inexpensively anywhere, I had my dopplers done at the University near me in the clinical offices of the head of the department. They said I had vertebral vein reflux on the left only, everything else they said was normal. They sent the dopplers they did to Dr Dake.

Dr Dake got all my information from them yesterday and he was UNIMPRESSED by the work they did and the interpretation.

I was told by the local guy I have only one reflux in the left VV. Dr Dake saw both VV's as being bad, and mentioned that the right had a substantial problem, but the quality of the dopplers was not good enough for a really good interpretation or for any conclusive finding. It was poorly done he felt. He also felt the person who "read" it was not clear on the clinical picture because the intepretation was poor as well. Dr Dake said to me "I need to get a look at your azygos, obviously if the vertebrals are refluxing"....no one at the local place said anything similar at all. In fact what they said was "The Vertebrals are too small to fix....." showing a lck of clarity about what is going on.

Man! I am grateful they at least found one reflux!

Dr Dake is NOT going to do dopplers, he is doing MRV. With MRV he can see the actual veins and see the actual blockages. NO in between step of dopplers at all. They use gadolinium just like they do for our MRI's and then watch the veins instead of the brain-that's how easy it is going to be.

I do not know what to say. We have been acting on the assumption here that dopplers would be easy to do and would have some weight, but clearly that is not true, they can be a waste of money and worse give a false interpretation and a false sense of security that things are "fine".

If I had not had the dopplers I would be hesitant to go to California and be tested, so I am glad I had them, but the quality of them was apparently so poor that they cannot be relied on.

if that can happen at a big university with a big medical school then it can happen to other people trying to get this done in random clinics all over. Then we may well have a lot of people walking around believing they "don't" have this issue when they really do

That is not helpful for people.

mrhodes40 · Post by **mrhodes40** » Thu Apr 30, 2009 10:28 am

Cat,

I worry about him having MS someday. Crazy to worry about something that may never happen

I am disabled enough I may not get much out of treatment but the fact that I would not have to worry about my kids anymore if this model s proven is a bonanza for me!! I know exactly what you mean!

I kind of feel like I gave my kids bad genes........

cheerleader · Post by **cheerleader** » Thu Apr 30, 2009 10:28 am

Sharon and Marie...
Excellent news! Dr. Dake is the real deal, I know you will both have a good visits at Stanford. As you've noted, he is very open to discussion and learning from patients...something I have never seen before in a physician. I hope he can help you. (I apologized to him for the deluge of calls and e-mails from this forum- and he said he was happy to be learning from MS patients!)

And Marie is so right....if the dopplers are questionable, you will not get good results. Dopplers are done from the outside of the body, it's like an ultrasound wand used for pregnant women. Jeff's dopplers couldn't really see the area of his stenosis and blockage, because it was high up in his neck, and the transducer wand was blocked by his jaw bone. But on the MRVs....WOW...those jugular veins were both closed up when he was lying down in the MRI tube. We could see the blockage very clearly. Not good.

Cat- An MRI will not really tell you what is going on in your veins. It will show how your MS is affecting your myelin/brain tissue...but it will not show how AVM may be affecting the jugular and azygos veins surrounding your central nervous system. You need a vascular exam for that. I worried for my 14 year old son, too. That's why I got busy researching...
AC

patientx · Post by **patientx** » Thu Apr 30, 2009 10:43 am

Well, I will be making a trip to San Francsico to see Dr. Dank.

Are we talking about 2 different doctors?

cheerleader · Post by **cheerleader** » Thu Apr 30, 2009 11:05 am

Patient- Sharon's was a typo. It's Dr. Michael Dake at Stanford University in Palo Alto, CA

Sharon · Post by **Sharon** » Thu Apr 30, 2009 11:21 am

Thanks Cheer for correcting my typo (I have a very good friend with the name Dank - I should have previewed my post before submitting)

Marie - I was originally scheduled for May 21st, but I am having to reschedule to a later date. Sorry that I will miss you - I would have enjoyed meeting you.

Sharon

mrhodes40 · Post by **mrhodes40** » Thu Apr 30, 2009 11:36 am

Drats Sharon I would have enjoyed that too.........

patientx · Post by **patientx** » Thu Apr 30, 2009 12:03 pm

Thanks. That's what I thought, but wanted to be sure.

chrishasms · Post by **chrishasms** » Thu Apr 30, 2009 12:19 pm

Sharon are you heading out to Cali?

Sharon · Post by **Sharon** » Thu Apr 30, 2009 12:34 pm

Chris ---- Yep, - I will have the tests on June 1st.

I was unable to get anywhere with the folks at the University Hospital here in Denver, so that is when I made the call to Dr. Dake's office. Actually, I was just asking for a reference for a local doctor; but I was fortunate to be able to immediately speak to Dr. Dake. Insurance will cover the cost at Stanford - I just have to pay for hotel and air (I have points from my credit card, so it should'nt cost me anything)

I will be interested to know how your search is going. I wander if Corboy would get onboard with the concept.

Sharon

cheerleader · Post by **cheerleader** » Thu Apr 30, 2009 12:41 pm

Wanted to give a breakdown of how Jeff's stenosis corresponds w/Zamboni's findings.

Jeff has "Pattern C" CCSVI. He has bilateral, atresia stenosis. This means both of his internal jugular veins are crimped closed. This pattern shows up mostly in RRMS patients, and is not common, because there is no involvement of the azygos vein. 86% of the MS patients Dr. Zamboni tested had some involvement of the azygos vein. Jeff doesn't.

I believe this is why Jeff's symptoms first appeared as brain issues: depression and fatigue, and why it took so long for him to be diagnosed. He does not have as many motor issues. He also does not have any spinal lesions, with the exception of one on the cervical spine. This one was enhanced at his diagnosis, and caused his numbness and tingling. That's what got him in the MRI tube and the MS diagnosis...but the brain issues were a problem for at least 15 years.

It will be interesting to see how the location of blockage in the veins relates to lesion location and disability.

AC

peekaboo · Post by **peekaboo** » Thu Apr 30, 2009 1:09 pm

I just got out of my PT and all the Dr. Dake appts. So i called his office and spoke to angela - what a sweetie - I was telling her our story dropping cheer and jeff's name and she said she would like to see the website, I gave her all the info to see the ccvsi forum (long version) She or the Doc are going to give me a call back by tomorrow am. I haven't felt this excited in ages and i don't have an appt yet.

cheerleader · Post by **cheerleader** » Thu Apr 30, 2009 1:43 pm

peekaboo wrote:I just got out of my PT and all the Dr. Dake appts. So i called his office and spoke to angela - what a sweetie - I was telling her our story dropping cheer and jeff's name and she said she would like to see the website, I gave her all the info to see the ccvsi forum (long version) She or the Doc are going to give me a call back by tomorrow am. I haven't felt this excited in ages and i don't have an appt yet.

Congrats, Peekaboo! You'll enjoy talking and meeting both of them.
But now we're BUSTED!!!! I'll have to watch what I post (hi, Angela

)
AC

peekaboo · Post by **peekaboo** » Thu Apr 30, 2009 1:47 pm

June 2nd for me day after Sharon

by the way not too costly.....

notasperfectasyou · Post by **notasperfectasyou** » Thu Apr 30, 2009 2:18 pm

Marie,
I'm working to print up EVERYTHING from the prior 45 pages. I ran into trouble on page 37, your post on April 14th. The following links ----

I couldn't get this link to work:
Zamboni et al 2009 The value of cerebral doppler haemodynamics in the assessment of ms
Though this paper was published in January of '09 the research was actually done before that of the Dec '08 paper: it was the second large doppler study.

It used 109 MS patients and 177 controls including people with OND and other vascular diseases, thus giving the opportunity for the controls to have issues that might make them prone to have problems with the venous system. Again, all MS patients had 2 abnormal findings and controls had one or less. Because the controls were people who we might suspect could have issues with venous drainage and it remained true that MSers were the only ones that had 2 or more abnormalities, and because this was a large study, it becomes more likely this is a pathognomic pattern for MS; unique to MSers.

In fact the total number of tests performed on normal people, 5 tests times 177 people=871 normal and only 24 abnormal findings. The test totals on the MSers were 288 normal and 257 abnormal tests. Huge differences in venous function overall wsith the MS population failing test after test while it was rare for others to have an issue

and this link didn't work either:
Raised venous pressure as a factor in mutiple sclerosis[/quote]

So far I have a huge stack of stuff to read. I really don't want to try reading the Schelling paper again, I think it really bogged me down before and I would like to try and just read the REALLY good parts. Ken

Also, any chance this impacts blood pressure? Kim has has low blood pressure for a long time.