This Is MS Multiple Sclerosis Community: Knowledge & Support

Any advice is gratefully received...cause I'm just so confused.

I have lesions in my spinal cord only...C4, C5 and T8...and spinal cord atrophy. I am quite disabled.

In looking as to where to go to get angio, I found that Pacific in Calif. (I am in Ontario-this would be a bit of a trek) checks all vertebral veins and balloons where necessary. Does this make more sense to a spinal MS patient with no brain lesions? Follow-up- I haven't even figured that out tho my GP is very supportive.

Secondly, just as a matter of weirdness, I feel stronger,I feel my feet, my hands work better, my standing transfers are better when I take a decongestant...I know its a vaso-constrictor (and I shouldn't be taking them as my bp is a bit high)...any idea why that would be?

Thanks....

Phe,

If by "spinal veins" you mean an azygous vein (there is only one of those), then most of the Liberation Treatment places look at it or at least try to look at it.

In my understanding, there is no concrete correlation between "brain lesions = jugular veins problems" and "spinal lesions = azygous vein problems"

There are also illiac / femoral veins (could be considered "somewhat" spinal, or at least originating in torso) that most places look at now (upper leg/groin region) draining reproductive, urinary, and digestive system and also circulation through the legs.

Welcome to the forum, phe.

I don't know why you would feel better when you take a decongestant. But if it works, it works.

As NotFound said, you want your azygous (which drains the spine), your jugulars (which drain the brain), and your iliac and lumbar veins (which when blocked shift their blood flow into the azygous) to be looked at.

It's hard to say if you are indeed more likely to have ccsvi in the azygous based on where your spinal lesions are. It seems intuitive, but no proof. Unfortunately the azygous seems to be harder for docs to image. There are new imaging ideas for the azygous, coming from Dr. Sinan out of Kuwait. We've been having a discussion of them over on Dr. Sclafani's thread.

Everyone has a favorite doctor, I have a lot of faith in Dr. Sclafani, particularly for azygous issues.

There is a search button on the top of the page. Doing a search on "Arata" should turn up more on him. He uses IVUS and the larger balloon sizes. (As someone quoted me back to me today, you pick your treatment when you pick your doctor; it is a salon after all. It is wise to put thought into the picking.)

Thank you both. Yes, I was going beyond the azygos vein into the iliac etc. I wasn't aware most others did look at those.

One reason I was looking at PI was a shorter waiting list. I think Dr Sclafani has a much longer waiting list-and honestly, I am losing too much daily to wait 6 months...Obviously I'd prefer NY as its closer but timing for me is impt. I am also killing my husband as he has to lift me more and more....

I will search Arata, and hope my azygos isn't too impossible....

Of course now I am doubting my selection (typical Libra)...where should I go and how fast is the list?

The docs may be looking at the iliac or the vertebral veins but not treating them even if they find things there because these are smaller veins and the treatment is not straightforward. It's a good question to ask whoever you go with!

Dr. Arata has been doing the ccsvi venoplasties for six months now, he was undercover in the beginning. So he seems to me to be a good choice for a doc with experience.

Sometimes the stories here seem like, in the upper stages of disability, people are caught between a rock and a hard place. It's so much money for people paying out of pocket, the doctors are all using different methods with different results, some waiting lists are ridiculously long.

I wish I could tell you where you should go, it's a big decision.

phe-- To your observation of improvement when taking a decongestant, you may find it interesting to read these postings:

http://www.thisisms.com/ftopicp-120193.html

Hmmm, interesting...I think I have low grade chronic sinusitis...and Cece, thank you also....

Phe,

Dr Arata definitely checks & balloons the azygous. On the way there, he looks into the lumbar & iliac veins (& renal & ovarian), but I don't think there's any treatment at this time. He can tell you the condition of those veins.

An important note: IVUS is currently available at hospitals, but pretty rare at clinics. When you're paying yourself, you probably won't be able to afford a hospital (my hospital bill was over $60,000 US vs clinic $8,000 US), so don't rely on getting IVUS from anybody--ask about it.

From the number of people running into lack-of-follow-up-care issues lately, that is another big thing to figure out before you go: where will you go for your post-procedure doppler (anywhere between 1 - 3 months for your first one) and where will you go if you experience clotting or restenosis or loss of improvements?

are they gadolinium-enhanced lesions?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Yes....why?

Phe – You mentioned using a decongestant; would you tell me exactly which brand you used?