This Is MS Multiple Sclerosis Knowledge & Support Community

Vivianne766 wrote:Holly sent me a form to fill out that included some personal info. like SS#. That was a little weird. !!!!!!!!!

I agree. Mother's Maiden name? What is that all about? I filled out everything else but declined to provide my SSN and MMN (mother's maiden name). Holly emailed me back and asked if I would be willing to provide these once I was scheduled. I wanted to tell her that this info was tattooed on the inside of my jugulars!

FlashHack wrote: I wanted to tell her that this info was tattooed on the inside of my jugulars!

Now this was good for a laugh!!

I handed over all my information on the first phone call. I suppose that makes me easy!

Cece wrote:Now this was good for a laugh!!

I handed over all my information on the first phone call. I suppose that makes me easy!

I handed over everything, Cece - I guess I'm easy too !!

I figure:

1) If somebody steals my identity, I might just get a new one "without" ms..
2) That guy on the commercials plasters his ssn on billboards, so what the hell..
3) I've been trying to tell my wife how "easy" I am for years... she isn't buying it, tho..lol

Has anyone heard what the cost is for the tests and treatment with Dr. Mehta in Albany New York if insurance does not cover any of it? Is there a known estimate?

jr5646 wrote:1) If somebody steals my identity, I might just get a new one "without" ms..

Amen to this...and wouldn't that thief get a surprise!

If you just interested in evaluation for CCSVI/not treatment at same time--what technique does Dr. Mehta use? Is it invasive?

My past MRI's 2006, 2008 have been normal-but have optic neuritis, now spreading numbness through out body, balance, gait, jerking (head, toro arms legs fingers toes etc), twitching, insomnia,burning, head pressure , dizzy, eyepain-weak neck , weak legs/arms etc. basically I'm a mess! Trying to explore all avenues. With this explosion of symptoms seeing a neuro again for MRI and evaluation.

I live in New England so Albany would be a convenient location for me.

The definitive diagnostic of ccsvi is the venogram which is invasive via a catheter thru a vein in the thigh, and an injection of dye. The dopplers and mrv's have been unreliable, as many have posted on this forum.

So Dr. Mehta uses Venogram?

Excuse my ignorance- is the catheter run all the way from the thigh up into the neck? yikes!

So if you have the venogram it makes sense to do the angioplasty while your'e in there?

I'm haveing major cognitive/brain fog issues so I"m not able to read/research alot right now. thx. trying to figure out my options right now.

Selmahope wrote:So if you have the venogram it makes sense to do the angioplasty while your'e in there?

This is correct.

A few questions about venograms (I guess I'm high-jacking my own thread).

1. Is a CT venogram the same as a venogram?

2. How much contrast dye (gadolinium?) is used? Where exactly is the dye released?

3. Does the venogram catheter always, sometimes or never go into the brain?

Thanks.

~HP

[Edited to fix punctuation]

HappyPoet wrote:3. Does the venogram catheter always, sometimes or never go into the brain?

It would never leave the veins. I am curious about the route too...since the internal jugulars return to the heart, how do they avoid going through the heart?

Cece,

Thanks for answering. I understand the catheter would stay within veins -- I should have been more specific, sorry. I want to know if the catheter can be threaded through the veins inside the brain.

My MRV-head shows missing segments of some of the veins/sinuses inside my brain -- since recently reading here about problems with MRVs, I want to know if a second opinion using a venogram would be of help.

Good question about the heart -- I wish I knew the answer.

~HP

HP, sorry, I was wondering what you meant by that question! I am not sure then of the answers to any of your questions...maybe someone else will come along.

I have heard that the very high up stenoses, mostly found by Dake, were hard to treat...I suppose because they were essentially in the brain?

The catheter must go thru the heart to get to the veins that drain into it from the head, neck, arms and spinal cord. It is not a big deal - you don't feel a thing. If they find stenosis, it is the right time to do a balloon or stent, since they are in there anyway. That's the point. The catheter can only go until it hits a "dead end".

Perhaps it is not appropriate to write a reply, but now that i have been outed as a physician treating CCSVI, I thought I would read what is discussed and see whether anyone would want to hear from someone on the other side of the catheter.
It was clear from reading a few posts that there are great misgivings and lots of unfamiliarity with these tests, their methodology and their use.
This evening I heard some discussions about catheter venography and thought I would try to help sort this out.

Catheter venography is the gold standard test for viewing vein anatomy. It is performed under local anesthesia. All the veins connect, so we try to enter in a safe, simple area where the vein is readily available. We would not want to enter in the neck, because it is more difficult to work from there, the vein is very close to the carotid artery and we need to see the entire vein, so putting the tube there would miss part of it.

The leg is the best location up near the groin, because the vein is just an inch or two deep to the skin and readily hit by the small needle that is used. Since we are below the veins involved in CCSVI, the jugular veins and the azygous vein, we must traverse the right atrium of the heart to get to them. Sounds scary but actually that is a relatively easy part of this generally easy procedure. The catheter (tube) we use is very thin, measuring less than a twelfth of an inch in diameter. It is visible on xray so we can find our way. The catheters have different tips with varying curvatures that help get into the veins. Because there are no pain fibers on the inside of the vein, moving the catheter in the veins is painless.

The venogram is always the first part of a treatment of CCSVI. it provides the roadmap for reaching any abnormalities. It makes no sense to divide the procedure into a venogram test followed at another time by the treatment part. They should always be done at the same time.

The dye used to see the inside of the veins is a very safe iodine containing substance. Adverse reactions are very uncommon, less common, for example, than many antibiotics or pain medications. I recently reviewed 600,000 exams of which 100,000 had xray dye injected. There were two serious reactions and 17 moderate reactions in the 100,000 exams. I will take those odds.

If i overstepped my bounds, let me know and i will lurk
ciao for now