Miscellaneous CCSVI questions

IHateMS · Post by **IHateMS** » Tue Jun 16, 2009 8:26 am

I have so many questions about CCSVI. It makes sense to me. I have an appointment with my neuro this month. I want to be armed and dangerous.

I wish I could fly to Stanford, but it just is not physically possible in my hummer wheelchair.

Could the CCSVI cause optic neuritis?

Could it cause Bell’s palsy?

Could it cause syncope?

Could it cause us to be more susceptible to viruses (EBV

, etc.)?

Is spinal stenosis related?

I am confused on which tests to ask my doctor to authorize. Do I need an MRV, CT, Doppler ultrasound, etc.? This theory has evolved in the last six months.

Will a 1.5 Tesla machine be adequate for the MRV?

Is there a specific paper the technician should read?

IHateMS · Post by **IHateMS** » Thu Jun 18, 2009 1:08 pm

Anyone? Anyone? Bueller?

I know now that CCSVI could theoretically cause ON.

I have read the threads multiple times.

cheerleader · Post by **cheerleader** » Thu Jun 18, 2009 3:10 pm

Bell's Palsy- Yes. Sharon as talked about how her facial nerves have been activated since her jugular stent. Jugular blockage would affect the drainage of the facial veins and could put pressure on the cranial nerve VII

Syncope- Yes. Jugular blockage can affect how much oxygen is allowed into the brain...perfusion time is slowed (due to too much fluid in the brain, since deoxyginated blood can't get back to the heart) This can cause insufficient bloodflow to the brain and result in syncope.

Viruses...not sure what the relationship is, although viruses create endothelial dysfunction, which can cause vasoconstriction and exacerbate CCSVI.

gotta run, will try more later-
cheer

Ernst · Post by **Ernst** » Fri Jun 19, 2009 10:18 am

There is some interest in Finnish ms-forum about CCSVI. I've been writing things (that I know) to forum.. and now there is one thing I'd like to know. So my question is (could you explain it like you're telling to six yrs old - my poor english

)

How is CCSVI diagnosed? With what equipment can neuro check the flow in jugular veins? Some people said that "neuro has checked my flow with ultra.. and it's fine" <-- I quess the neuro has'nt checked the same flow we are talkin in here, cause this is so new thing, that regular neuro doesn't even know of CCSVI.
Thank you

cheerleader · Post by **cheerleader** » Fri Jun 19, 2009 11:30 am

Testing for CCSVI is the most difficult aspect of this disease.

Doppler/ultrasound scans measure blood flow in the veins. These scans MAY show reflux, but they may not. There is room for error, due to operator experience. Marie and Jeff's dopplers DID NOT SHOW REFLUX, because the operators did not go high enough on the jugulars. A clear doppler or ultrasound is NOT the final answer. Dr. Dake's research has shown this. Again, Dopplers did not detect Marie and Jeff's CCSVI.

What Dr. Dake is using is Magnetic Resonance Venography (MRV) - using an MRI machine, a radiologist adds contrast dye to the veins in question, and they are scanned. Jeff and Marie's jugular veins were both crimped and closed very high on their necks. Only the MRV could see this.

cheer

Ernst · Post by **Ernst** » Fri Jun 19, 2009 3:21 pm

Once again, thank you Cheer. So MRV is the best choise when checking the jugular veins? I quess it takes time, when this CCSVI thing is normal thing with neuro's. Maybe one or two yrs and things are easier with MRV, even here in Finland

whyRwehere · Post by **whyRwehere** » Fri Jun 19, 2009 11:39 pm

Ernst,
My husband's dr agreed to a doppler as it was less expensive and less invasive, but it all depends on who is doing it. The first doctor who did my husband, didn't really know what to look for, so she just said it looked fine. BUT, I had also emailed Dr Zamboni for advice on a doctor in Paris, because as Cheer pointed out, the first doctor might not see anything. Fortunately, Dr Zamboni knew a doctor in Paris, who knows the research and has agreed to help study people, so he saw my husband, and there is a problem with his left jugular and probably the azygos. Now we have to wait till later to do something. We are waiting to get back from holiday, and the doctor is waiting for more numbers and information from Zamboni and finding the right interventional people to help treat patients...he thinks it will take about a year.

Ernst · Post by **Ernst** » Sat Jun 20, 2009 12:06 am

Once again, thank you! This is important, I mean how to dx CCSVI. Hopefully your huspands veins will be fine in near future.

- Ernst

IHateMS · Post by **IHateMS** » Sat Jun 20, 2009 8:00 am

For those with heat sensitivity----

Do you sweat? If you did not sweat before the CCSVI intervention, do you now?

Thanks. I do not sweat, so I am curious.

daniel · Post by **daniel** » Sat Jun 20, 2009 9:25 pm

IHateMS wrote:For those with heat sensitivity----

Do you sweat? If you did not sweat before the CCSVI intervention, do you now?

Thanks. I do not sweat, so I am curious.

Sharon has shared that she previously did not, but now does sweat: http://www.thisisms.com/ftopicp-59819-sweat.html#59786

IHateMS · Post by **IHateMS** » Sun Jun 21, 2009 11:31 am

daniel wrote:
IHateMS wrote:For those with heat sensitivity----

Do you sweat? If you did not sweat before the CCSVI intervention, do you now?

Thanks. I do not sweat, so I am curious.
Sharon has shared that she previously did not, but now does sweat: http://www.thisisms.com/ftopicp-59819-sweat.html#59786

Thank you. I do not know how I missed that. So much new info to absorb.

Sharon · Post by **Sharon** » Sun Jun 21, 2009 1:42 pm

IHateMS -

For those with heat sensitivity----

Do you sweat? If you did not sweat before the CCSVI intervention, do you now?

I did not suffer from heat sensitivity. I have a brother with MS who has a problem with it, so I am familiar with the symptom. I was able to work in the yard, play golf or other outdoor activities when it was 90 degrees. Yes, I would get hot but the temp did not affect me neurologically. Now the interesting thing is, since I have had the CCSVI intervention, I notice that I am perspiring. I have not perspired for years.

Sharon

LR1234 · Post by **LR1234** » Sun Jun 21, 2009 2:58 pm

Sharon, Is your brother going to Dr Dake?

Sharon · Post by **Sharon** » Sun Jun 21, 2009 4:21 pm

As of now, my brother will not be going to Dake. Dr. Dake has been ever so gracious --he would love to see him. I love my brother dearly, but sometimes I want to shake him.

When it comes to his health, he relies on his doctor ....... we here on TIMS know about doctors! He reads the Natl MS Quarterly and thinks that he is up to date on all the latest MS news. Friday I was busy finding out imformation about the CCSVI study at Jacobs Neurological - maybe my brother will consider the testing. They are interested in seeing him because of the familial MS link.

There is only so much a sister can do - I can give him all the specifics ---he has to make the decision.

Sharon

Ernst · Post by **Ernst** » Mon Jun 22, 2009 10:37 am

One question in mind: inflammation? I tried to understand from Zamboni research's that how it goes? If I understood correctly the stenosis / obstacle make abnormal blood flow and simply "stress" to vein-structure's in certain places? So it's like "endothelial insult"? And this causes increase in adhesion molecules, and then whitecells migrate, etc etc? So, is it like this, or did I understood right? And blood-flow problems define the places of plagues?

- sorry, questions questions..