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Marianne reports on German forum (11 March) about Frankfurt - hope OK I quote her here:

"Ich habe eine Stenose an der linken Vena jugularis interna relativ schädelbsisnah - und bin wohl jetzt im Club!
Prof. Vogl meinte, er hätte ebenfalls eine derartige Stenose, aber keine MS. Außerdem meinte er, er hätte häufig Patienten mit linksseitig betonter Symptomatik.
Zur Behandlung sagte er, die Katheteruntersuchung auf Druckmessung vor und hinter der Stenose (ohne Druckunterschied keine Indikation für eine Weitung) und eventueller Ballondilatation sei ein Routineeingriff, bei dem in ihrem Hause noch nie eine Komplikation aufgetreten sei. Für Stents sei er nicht, aufgrund der Zusetzung im Niederdrucksystem, und an dieser Stelle müsste ein Stent ossär fixiert werden und wäre "nicht wieder rauszukriegen".
Er meldete seine Bedenken an, dass niemand wüßte, ob veränderte Druckverhältnisse nach der Dilatation Nachteile auf Dauer nach sich ziehen könnten und ob die Verbesserungen nach der Behandlung nicht nur ein Plazebo-Effekt seien (im Gegensatz zu anderen z.B. heilpraktischen Ansätzen sei dies ein massiverer Eingriff, daher massiverer Plazebo).
Außerdem sei die Haltung der Krankenkassen unklar und im Falle einer Komplikation (Intensivstation, Folgeschäden) würde diese nicht einspringen."

For those who do not understand German here in broad terms what Marianne reports:
- Dr Vogel said he also has a stenosis on left side, but no MS, very funny! And the left side was most affected in his patients.

- AS REGARDS RISK OF BALLOONING AND STENTS:

1. ballooning until now he faced no complications at all
2. But he is against stents as these in her case could have impact on pressure and would need to be fixed to the bone and could not be removed. The position of Marianne's stenosis is the left internal jugular close to the cranium. He expressed his concerns that noone knows whether changed pressure-conditions after dilatation could on long-term induce disadvantages and whether improvements after intervention might not be linked to a placebo effect (this would be a massive intervention, so coukd have a more massive placebo effect compared to other therapies). Also uncertain how the health insurances would stand to this, he said, and in case of complications (intensive care unit + potential follow-up damage) it should be expected that these would not intervene.

This is one view of a vascular specialist on one case: but very interesting!

E-mail reply received from Prof. Vogl this morning - so he seems to also do stents, if appropriate!

"Currently our concept is the following

ad1 we perform a contrastenhanced MR venogram here and then discuss the findings and correltate it to the clinical course

ad2 in case of pathology: we discuss experimental invasive pressure measurements and balloon dilatation in one or two sessions

ad3 stenting is the very last step

it has to be pronouced that still all is under experimental conditions"

Hello everyone. I wanted to add just a little to this discussion. I am a firm believer in doing our own research. However, we also need to trust that medical professionals have spent their entire lives in their specific field and have a body of knowledge that we can't necessarily duplicate from internet research. I also want to put in a word for Dr. Dake in particular. I have been privileged to meet him and to meet a few of his colleagues. They make it clear that he is one of a kind. I wish everyone could meet with him and understand what I mean. I am so grateful that he has turned his talent and attention toward trying to solve our issues.

I think it would be fruitful for any of us to make an appointment with a vascular surgeon who works with veins and ask questions to that professional. I did that with the local teaching hospital, and the interventional radiologist made it sound like this kind of thing was almost ho-hum. That's a bit of an exaggeration -- brain surgery is routine to a brain surgeon -- but my point is, why not ask an expert your questions directly? You would have a focused time to get great info, and you could also be educating your local people.

Plus -- as Cheerleader has made very clear -- you would really benefit from a local person for follow up!

I looked up the local people where I live and then searched for their names on PubMed and found an interventional radiologist who had published extensively on vein surgery. At least half of his work is in veins. He was a great contact and even knew Dr. Dake.

Best wishes!

Hi bluesky - fully agree to try to get local expert advice. I will try to do this next week when have appointment at angiology dep of my local hospital (even managed to get this appointment via health insurance as my Italian GP very supportive - but since not upon private payment needed to wait a bit longer to get the date for this).
I hope they will be open to discussion and to get some of my questions answered. Lets see...

Steffi

Hi Bluesky,
I partially agree with you. If you have a well known condition then you should see your local doctor. CCSVI is a new condition and most doctor never heard of it. I talked to the vascular surgeon of my hospital and explained to him the detail of the condition. He knew Dr. Dake and told me he was going to look into it. When I talked with him again he brushed the subject off.
My advise then is get tested with doppler and MRI/MRV in the place closest to you familiar with CCSVI testing and if CCSVI is detected see a doctor that has done a good number of procedures for a venogram and possible treatment. In my case I would only do balloon venoplasty because I am concerned about the long term effect of stents but of course this depends on your personal situation.

Ella's PTA only lasted 5 days, we are returning to Poland for another procedure and stenting seems the only solution.

Dovechick wrote:Ella's PTA only lasted 5 days, we are returning to Poland for another procedure and stenting seems the only solution.

Michelle...I'm sorry her veins didn't remain open. Wishing you and Ella all the best. Hang in there-
cheer

Thanks Joan, I'm hoping this is the last leg of our journey...

Sorry to hear that, Michele,
there must be some external pressure squeezing the vein in which case a stent is the answer.
Good luck and a speedy recovery.
Nunzio

Not sure I'm posting on the right thread, but I was wondering - if you go to Poland for the treatment, are you supposed to go back for a check-up to make sure things haven't closed up again? If so, what is tge time lapse - ie. one month later?

I would leave it longer unless like Ella you see all your improvement disappear quickly. More like 3 months.

Hi Michelle,

I too am sorry to hear that Ella has had further problems. I am just thankful that she has such a mother as you - who takes an interest, and a stance. She may feel over-mothered sometimes, but you can tell her from me, that is much preferable to a complete absence. (I am still up for adoption, though a bit long in the tooth)

Best of luck in your continuing, shared journey.

Thanks for the advice Michelle! Ella is soooo lucky to have such a wonderful mother supporting and looking out for her!

Friends, thank you for your appreciation and support.

I try not to over mother my daughter, she is after all a grown woman. I don't ask questions, I don't keep in touch daily, in fact I mostly wait for her to call me, but I have never allowed her to dictate what I do to make a difference to her and to others in her condition. I always come to her with proposals and research information and allow her to make a decision about where to go next. Now, it is possible that at time she does things to please me or keep me quiet, but that is not something I ask of her.

My daughter is a feisty young woman with 'pointy elbows' as her father puts it, so it would not be easy for me to over mother her. But if there is someone out there that needs mothering, although I would probably prefer it if you called it human concern for anyone in pain of any age... I've got plenty of that to spare... just lay it on me...

Hi Michelle

Sorry to hear that Ella's improvements haven't been sustained and that you have to return for further treatment. I have a date for April and should any problems be discovered, would prefer to go with angioplasty
initially also. What I have been wondering about is - does one have to pay for subsequent treatment or is that covered because the first procedure was unsucessful?

If you could shed any light on that I would be grateful.

Thank you


Maureen