This Is MS Multiple Sclerosis Community: Knowledge & Support

Not sure if this is where to start... But after learning of CCSVI a few days ago, I've been relentlessly researching this phenomenon. I spoke with my Neuro last night who believes this condition is epiphenomena related and doesn't apply to me, but still agreed to give me a script for the MRV. I do not have a medical background, but do have a critical eye and feel as though I have hope for the first time since my diagnosis. Here's to hoping!!!!
Jen

Hi Jenf,

I'm glad you found us. Where ae you located? Dr. Dake can help you to request the propoer testing and analyze your results.

Michelle

Hi Michelle,
I stumbled on this site after learning of the CCSVI study through my yahoo LDN group. A member posted the findings and while it hasn't generated much interest in the group (or any others for that matter), I am ecstatic! I do realize that hope and optimism are not something that come easy to long time MS'ers, but I am fairly new to the disease and the process, and believe that hope is crucial for a positive outlook. I am optimistic about this research.

I am located in upstate NY. My Neuro is in Long Island. And as I mentioned, while he's skeptical of the study, he still gave me a script for the MRV. I should also mention that he was skeptical about LDN as well, but I've felt great since starting it. He's a great doctor and I'm fortunate to have one that listens to me and let's me guide my own treatment plan.

I was able to make an appointment next Tuesday with Dr. Patricia Coyle from Stony Brook University Hospital. She attended (and spoke at I believe) the CCSVI conference. I called her office yesterday and they had a last minute cancellation. Maybe it's fate??? I wanted to get her take on the study findings.

If I do in fact have this condition, I will pursue an appointment with either Dr. Dake at Stanford or Dr. Robert Zivadinov, Jacobs Neurological Institute at Buffalo. Do you think this is a good plan?
Jen
RRMS, 06/09
"If we have no hope... we have nothing else left..."

Hi Jen-
Wow...what a quick turn of events for you! Dr. Coyle was in Bologna, and she moderated the afternoon of the conference- kept her comments very brief, because she wanted to give her time to the presenters. I hope she will be open to looking into CCSVI in her own patients.

If there are any questions on the MRV- Dr. Dake may be able to consult with your doctor...he is finding most stenosis very high in the jugulars. Stanford is the only university treating at this time. Jacobs will be testing for CCSVI for the next year and a half. It is important to have the data to prove the link to MS- but Dr. Dake sees it as a venous problem and is treating it as such. He is trying to get a clinical trial off the ground, too.
you are early in this process, and proactive...I wish you hope, health and healing-
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hi Cheer,
And thank you for your quick response! I think being proactive with this disease is the only way to go. I just spoke with the nurse from my Neuro's office and she's sending me the script for an MRV. Should I just send the results to Dr. Dake, or should I have my doc review them (possibly as well)? Would you suggest even seeing Dr. Coyle if she was just a moderator? I thought perhaps she would have insight from the conference that would help guide me. But, her office isn't exactly down the street... it would be at least a 6 hour round trip (not accounting for traffic) there and back, and it would end up being a day trip. Not that I mind; because I would pack my car and drive to Cali if it came down to it!

Anyway, am I correct in my assumption that all 109 MS patients involved in the initial study had this disorder, and were enrolled as a result? Or is it the other way around? Were they enrolled, with clinical diagnosed MS, then found to have CCSVI? It becomes a cart before the horse question I guess, and the answer may change my outlook!

In any event, I anxiously await the script, and MRV. Does it make a difference where I get the procedure done? I read about the "new, advanced MRV" in one of these posts, but haven't been able to discover anything new with MRV's since the mid-80's. Is there anything to that? Am I asking too many questions? Lol...

Thanks for all your help and guidance. Most of my posts in other groups have fallen on deaf ears, which is frustrating since I never post. I thought this was exciting news and wanted to share it with other MS'ers. Crickets....
Thanks again,
Jen

The doctors doing the MRV need to know what areas to look at. The dye needs to descend from the top of the head thru the IJVs. It's a bit of an art. A phone consultation w/Dr. Dake prior to the testing might be a good idea.


I don't know the answer to this one, Jen. Dr. Coyle kept her opinions to herself. Perhaps a phone consult before you go? Just to see if she is open to pursuing this line of investigation with you. I know she is well-versed in CCSVI. I do not know if she wants to pursue it with her own patients.


Read all of the research Marie has compiled in the research sticky. You need to understand this for yourself. Of the 65 MS patients Dr. Zamboni tested- 100% had two or more venous issues and 100% had stenosis in the jugular and azygos veins. His team has since tested 500 MS patients, and all have CCSVI. Dr. Dake is seeing similar results, and Jacobs is, as well.

You are early in your disease course, and this research is not going away. Try not to be panicked, or feel you need all the answers right now. Read as much as you can, write down your questions, talk to the doctors. You will not miss out if you are not treated right now...if anything, there will be more research and understanding. Live a heart/vein healthy life, exercise, eat well, reduce stress and keep posting here. Welcome, Jen!
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Thanks for all your advice Cheer! And I'm not panicked.... just excited about this new prospect! I'm probably more of the exception than the rule in many ways. One of the biggest has been my approach to this disease. I'm very optimistic about having it and have had very few "bad" moments, despite everything.

I had, what I consider, a very rough beginning to this disease, but had (and still have) INCREDIBLE support all around me... and I mean incredible. My family and few close friends have been my rocks, and I hope someday to "pay it forward" to someone else who goes through the misery of uncertainty.

This disease IS manageable; I truly believe that. The first thing I did when I suspected MS was research the hell out of it as soon as I could see straight (my MS presented with double vision as my primary symptom). Then, changed my diet drastically. Low fat, healthy, fishes, no dairy, etc. When I finally felt better, I incorporated an exercise routine into my life. Those coupled with other smart decisions have brought me back to a place of healthy well-being, inside and out. I've gotten a great deal of positive feedback from others around me, which tells me I'm on the right track. Hope may be futile in many cases; but I think w/o it, we have nothing.

I will keep in mind the things you wrote as I move forward. I realize there is no rush, as my current treatment pla has left me feeling "normal" for the most part. I am confident in the continued success of this, but can't help to be excited about the prospect that I may fall into the CCSVI category. Wait, did I just say I would be excited about having a vascular disorder that would require surgery to correct? Ugh... My, how life can change in a year!!
Jen

Coyle is a great start. She'll be involved in this as the details unfold. I'm going to see her too, once I get my doppler and mrv results.

I want to take hope in this new discovery, but I've had this disease for 23 yrs, been in a wheelchair for over 10 yrs. I'm a little lost about what to do next. Should I:
1. First contact Dr. Dake
2. then ask my neur. to approve a MRV and a transcranial doppler?

I'm just looking for the most convincing way to persuade my neur to approve this.

jbro,

Your neuro does not have to approve at all. Unless that is what you want. I spoke to mine and he believed it was great that this was being investigated. But I went to Dr Dake on my own. I sent my history and my MRI's and went from there.

Cat

_________________
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.

Jbro,

This paradigm is so far-fetched for so many neuros that they tend to be dismissive of it. I think the rarity is one who is open-minded.

Go to your pcp and find a vascular doctor to bring into the fold. If there is a university medical school near you, you are more likely to find open mindedness. You have a much better chance of getting somewhere that way. And if there are questions on how to do the tests and read the data, bring Dr. Dake on-board.

Please let us know how you make out.

Michelle

Thank you all for your insights. I'll start w/Dr. Dake and then my GP. For some reason I am feeling very timid, even though that is not my nature at all. I'll post here whatever happens during the next few days.

Question: Would Medicare cover something like this?

Take care, jbro

Okay, well after getting a script for an MRV and not really knowing what to do with it, I decided to make an appointment with a Vascular doctor to bring him in the mix (as suggested on this site). Hopefully he'll be receptive to this concept and willing to read the materials I've printed out. I've also managed to sign up for the CTEVD clinical trial in Buffalo. While I understand that won't help to diagnose me, I am happy to help further the research in this field. Here's to hoping, right??
Jen
RRMS - dx 06/09

That's great news jenf! I have submitted prior med records and will be talking with a vascular doctor soon.

Regardless of how this works out for me, I want to thank cheerleader, bestadmom, catfreak and anybody else who is providing info/guidance abut this new procedure, and how to approach it. I would be completely lost without this help.

jbro

Hi Jenf,

How was your appointment with Dr. Coyle? At this point what are your next steps..and hers?