This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi All,

I've been in contact with Dr. Dake's office over the past month or so. Spoke with him once and Alex twice and faxed off a bundle of reports/letter. Will likely be scheduling soon.

As my medical history indicates cerebral venous flow & IJV issues, I'm probably a good CCSVI intervention candidate. And, clinically fatigue/cognitive fog is one of my most disabling symptoms taking me down daily. Although my walking is getting wonkier every day too.

But I admit I'm cautiously engaging in this -- am only committing to the diagnostics. The long-term care and follow-up is my biggest concern. My N and GP are neutral about this -- not a strong sense of ownership aside from my GP committing to managing the Coumadin if I go this route. Am wondering about the long-term follow-up for you pioneers.

I saw where one of you indicated Dr. Dake's suggested follow-up course with a local endovascular doc likely a couple of times a year. Am wondering if anyone has contacted a local EV doc yet and if so what their encounter has been like.

I apologize if I've missed some significant threads addressing these questions. I saw several discussing the stents but not the in-depth maintenance and plans for addressing that. Am struggling with this -- I appreciate hearing from those who've gone before about the plans/instructions for managing this.

Thanks,
Donna

Donna, I am not sure if you are referring to a post I made or not, but I am doing the 2 month post-surgery follow up with a local endovascular doctor of Dr. Dake's choosing. I live in Boston and Dr. Dake was quite comfortable recommending someone here.
I have no idea if I am supposed to see that doctor on a regular basis here on out or not. I suspect that some of the folks who are farther along in the proess may know. Sharon is traveling back from her follow up, for example, and I would bet she had a conversation about future follow ups. (Just a guess, but she's good that way )
My appointment is not until September, but I definitely will post afterwards. I know people on the East Coast especially are interested in seeing if someone here will be focusing on this. And aside from my personal interest in having an interested endovascular physician, I am really curious to know if any of the local hospitals are even thinking about gearing up for this. As I have said previously, it could be boffo business for them if new data comes out soon which would lead to insurance coverage...
- Randi

Randi,

Thanks for your response. No, it wasn't your post but it is good to hear that Dr. Dake was recommending someone for your local follow-up. I have no issue going back to Stanford for the 2 month follow-up. But I want to know I have an endovascular professional on board for the long-haul maintenance who is interested in becoming knowledgeable about CCSVI patterns. That would personally be a big load off me for my concerns in undergoing this procedure.

I forgot to address this in my conversation with Dr. Dake as I received his phone call in the middle of a cranial-sacral session -- was a bit out of it! Am just curious to hear what plans he's been recommending to others. Thanks Randi.

Donna

We are really kind of feeling our way here...I posted some time ago Dr Dake mentioned I ought to find someone local, but instead I went back to CA for my follow up and also plan to do so for the planned 10 month follow up.

I asked Dr D what kind of long term he expects and he said he expects these to be permanent. He did not mention any kind of follow up schedule to me at this time nor did he reiterate the "find a local guy" thing.

Seems like you could get the MRI MRV deal, get information about your personal situation and come armed with a long list of these questions. I personally did not do this but I feel it may be a good idea for people to get the information and go home to think about it to make sure that you feel good about the decision because this is not standard treatment. Being informed is the smart thing.

It is one thing to decide this makes sense online while reading what others did and another to make a decision after you had your personal information and met the man in person and found out what is involved for you personally...

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Just to second Marie. Dr. Dake is our local guy, since we live in no. cal. during the summer- that's why I initially contacted him. I sent him the Zamboni last February, and this has all snowballed. Jeff will see him next spring for his one year check up. But Dr. D does not feel he'll need to have check ups after that. If Jeff has a flare/relapse, he'd go to Dr. Dake for a balloon procedure- according to Dr. Zamboni's research, relapses indicate a restenosis. There's no "long haul maintenance"- since there are no drugs involved. Not like seeing the neuro.

I expected other vascular docs would be excited to look at the paradigm...and have been surprised by the general reluctance. Maybe after Bologna.
cheer

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

Right Cheer! fingers crossed!!

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

You're so right Marie. I'm committing to the diagnostics but not the procedure. One practitioner who has worked with me for years thinks that the CCSVI theory is brilliant and right on the money for my issues. Another, less familiar with me, suggested I go get the diagnostics only. I wonder if I'd have the discipline to do that especially after seeing my tests. My pre-surgery MRV was scary enough -- am sure it will be even more frightening now. That along with what I experience on a daily basis.


I somewhere got the impression that stents needed annual checking and wanted someone on board for that. I don't mind flying back to Stanford a few more times but eventually, well, I do live outside a major metropolitan area.


That's been my concern.


This whole story and your commitment has been nothing less than amazing. My personal caution that I express in my posts doesn't convey my excitement and hope for this all which really is far greater than my concerns.

Thanks for your responses,
Donna

I had to have dopplers for a thrombosis in my calf about 2 weeks ago. That guy is the same radiologist who did my CT scan for the belly hematoma after the surgery. THIS time he listened when I said jugular stents and seemed interested rather than rejecting (he smirked when I said jugular last time and corrected to carotid as if I was just confused) So MAYBE just hearing it a time or two is all it takes to be open to it...

THIS time it was "Jugular, that is unusual....." and I was able to talk about it. He may have been saying to himself where did I hear of this jugular stent before???

repeating things; Seems to work in politics.....

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Like Marie, I just got back from Stanford for my follow-up. Dr. Dake wants a one year follow-up with someone. He will recommend a doctor here in Denver if that is my decision. I may decide to go back to Dake though --take some quality time and enjoy San Francisco or Napa Valley since my other two trips have not allowed the time to be a tourist.
Sharon

I dropped Zamboni's paper the last time I saw my main neuro, about 7 months ago. I just booked another appointment with him for Tuesday, and the receptionist informed me another doc (a vascular doc I am speaking to) had sent him a direct email regarding Zamboni's paper. I am really interested to see if he has read the work with any real belief.

Hi Cure - It sounds like you are breaking the CCSVI barrier. Hoperully the vascular doc can turn the lights on your neuro

Good luck on Tues.

H

Thanks for the input Sharon -- so a year follow-up with someone afterwards.

Cure, was the vascular doc someone you approached cold? And, was s/he into exploring CCSVI? Interesting that they're contacting your N. Let us know how that goes.