questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

questions

Postby jerrygallow » Wed Mar 12, 2014 11:22 am

I noticed back when I was in college (pre MS days), I would feel an odd sensation whenever I got a haircut. Namely, when they used the clippers to shave the back of my neck, I would feel, well, it's hard to describe, something like a tickle or an itch under the skin. It only happened on the right side. It wasn't real pronounced, but enough that I noticed. I would say it was somewhat uncomfortable.

Now, it seems worse and in more parts of my neck. I can feel it if I touch the back right side of my neck or even toward the front. Oddly, MS for me started with severe optic neuritis on the right eye.

Secondly, I notice a weird poping in my jugular veins sometimes. I will feel odd pressure in my head, maybe slight headache or eye pain, then I press on the jugular and it feels kind of like a knuckle poping. I feel a mild pop, followed by the sensation of relief. I notice it more after I take a calcium supplement.

Does this sound like anything you guys have experienced? Could it be CCSVI? How much would it cost to have the doplar done? I am curious to learn whether my veins have stenosis, especially on that right side.
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Re: questions

Postby DougL » Thu Mar 13, 2014 3:51 am

jerrygallow wrote:Does this sound like anything you guys have experienced? Could it be CCSVI? How much would it cost to have the doplar done? I am curious to learn whether my veins have stenosis, especially on that right side.
you could try asking Dr S himself via private message or email.
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Re: questions

Postby Rosegirl » Thu Mar 13, 2014 5:34 am

The answer to your question will be different depending on who you ask.

Most neurologists don't think CCSVI is pertinent to any MS patient. I found out about all these other practitioners because, after more than 20 years of being told I had MS, my neurologist said I never had MS. That's not all bad as the meds they offer are expensive, have serious side effects and neither they nor the drug companies say they will cure anything.

Dr. Sclafani and his colleagues would check you for CCSVI, but they still have a relatively low success rate and not enough time or patients yet to have standardized on the best procedure(s) for patients so they're still a crap shoot. Some people get miracles right away, but most have less or no success. (I had three CCSVI procedures. I'm a believer, but I'm also clearly a non-responder.)

A holistic dentist (who also looks at patients neurologically, not a general dentist) might think that a jaw malformation or TMJ is the cause.

A chiropractor would look at adjusting your atlas (the bone at the top of your spine), while someone who does neural cranial integration would start by checking the range of movement of the plates of your skull.

So, if I knew then what I know now, I would start with the holistic dentist first and then the chiropractor. They're relatively inexpensive, they won't put you on expensive drugs that don't work and have awful side effects and their rate of complications is relatively low. They're also a good choice if you've worn braces, have a history of dental problems or falls or just have bad posture.

The bad news is that there are too many choices and no clear direction to make your search easier, faster and less expensive.

The good news is that there are a lot of practitioners there who say your symptoms aren't neurologic and that they can fix them. It's nice to have hope, even if you don't have the time and money to visit them all now.
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Re: questions

Postby Cece » Tue Mar 18, 2014 11:16 am

Does this sound like anything you guys have experienced? Could it be CCSVI? How much would it cost to have the doplar done? I am curious to learn whether my veins have stenosis, especially on that right side.

I think the Doppler might be a couple hundred dollars, depending on where you go. My most recent check-up Doppler a few months ago was covered by insurance.

I've had odd neurological sensations in my arms/hands/feet but not in the neck. I have had some tension and back-of-the-neck aches though. The theory there is that the blocked blood flow is diverted into smaller veins including emissary veins, and if those smaller veins are serving muscles, then that leads to venous congestion of the muscles.

It couldn't hurt to get the blood flow checked, and make any further decision once that information is known.
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