Dr. Haacke/Dr. Reichenbach (Germany) CCSVI case 1

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

Postby Ana » Tue Oct 27, 2009 5:19 am

I got the examination from Dr. Simka in September and he didn't find anything unnormal with my veins. So I thought that I don't have MS as I'm still a CIS and checked other things like gluten ataxia or borreleosis. As I ended up in a kind of dead end I sent my MRT's to Dr. Schelling and he says he is quite sure that I have CCSVI due to the lessions in my head, especially some Dawson's fingers.

So I asked him why Dr. Simka didn't find anything and he says that one possible reason might be that my problems depend on the position of my head/neck, movements etc.. So there are probably people who don't have a constant stenosis but only in certain conditions.

Moreover he said that a small percentage -I hope that I don't fit into that sceme - has a bad drainage of the whole veinal system which would be hard to cure. Or that the problems are located in some small veins.

It is interesting to point out that riader had a doppler scan done, too, after the examination in Jena and the MRT SWI and in spite of the problem with the arteria found out in the MRT SWI the doppler scan had no result. But as the doppler scan was done in Jena and not by Dr. Simka this might be a result of the lesser training of the examiner. But they say that it is also possible that the doppler didn't show any problems because the "conflict zone" is behind his jaw bone. I'm going to get a scan in Jena, too, unfortunately the answer to my mail is still pending.
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Postby Shannon » Tue Oct 27, 2009 6:06 am

In regards to neck injury, I have also suspected for a long time that an incident may have caused my MS. I was choked to within an inch of my life (well, I was choked hard but not for a real long time) when I was in college by a boyfriend. My symptoms started shortly after this. Another thing that I just thought of yesterday dating back probably 25 yrs. ago was the stupid thing kids used to do to get a "high" feeling. It's sort of like kids today "huffing." My friends and I once tried it: Bend over at the waist and then press on both sides of the neck to cut off blood flow (or O2) and then stand up quickly. When I did it, I actually passed out because when I came to, a coffee table was toppled over and my friend was cleaning up spilled water. I was still standing, however. Either of these things seem like they could easily have caused the stenosis. 8O
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Postby mrhodes40 » Tue Oct 27, 2009 8:17 am

My constricted area is behind the jaw and dopplers done twice do not show it directly but in my case turbulence and an overly heavy load on the vertebral veins was noted. It was the MRV and MRI of the neck that finally showed it though.
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Postby Ana » Tue Oct 27, 2009 11:41 am

Interesting! Dr. Simka mentioned in my case: "Right
internal jugular vein in its lower portion is dilated to 15-20 mm, but assessment with Doppler
spectrum is unable to detect any hemodynamic significance of this dilation."

I really hope that I can do a MRT SWI soon! :(
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Postby Ana » Fri Nov 13, 2009 3:31 pm

Here's a little update:

A lot of people from Germany including me wrote mails to Jena to do the MRT SWI there but nobody got a reply or faintest reaction after weeks of waiting. So we are trying to find other German universities who are willing to cooperate with Prof. Haacke. Franfurt/Main seems to be very interested and from what I know they are a very innovative and good hospital. At least the leader of the radiology department answers my mails very quickly, sometimes only within minutes, and is very interested in CCSVI and Prof. Haacke's software and work. So I hope that I and others can do our MRT SWI à la Haacke there as it seems to be a lot more easier and less frustrating to contact them.

riader - the patient who was scanned via MRT SWI in Jena and is "case 1" on Prof. Haackes side - also got a quite discouraging mail. He had tried to get the procedure there in Jena and they rejected it because they considered CCSVI to be rubbish (well they choose more polite words but meant this). Only if he paid the procedure by himself and signed a paper that they were not liable they would do the procedure. So we were quite sad.

Fortunately riader didn't give up and phoned once more and got another appointment in Jena. Now they are willing to do a phlebografy of his veins and to help him to get it paid by the health insurance. It seems that they are not unwilling to do more if they find Prof. Zamboni's theory to be right after riader's examination. So there is still hope!
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Postby LR1234 » Fri Nov 13, 2009 3:35 pm

I have also contacted the Dr Reichenbach and got no response:(
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Postby Ana » Fri Nov 13, 2009 3:42 pm

That's what happened to a lot of people. I even knew the name of the other doctor who examined riader together with Prof. Reichenbach and sent him a mail, too, but got no reply neither from him nor from Prof. Reichenbach.

If Frankfurt is willing to do the scans I'm going to post this here, too. It might be also interesting for other people in Europe because Frankfurt has the biggest airport in Germany and flight connections to nearly every place.
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Postby Ana » Tue Nov 17, 2009 10:11 am

I just got a mail from Prof. Haacke. He'll be in Frankfurt this saturday and he is going to meet the professor from the Frankfurt university with whom I'm exchanging mails. So I really hope that they'll meet and that the result will be very positive for all the people in Europe looking for a place to do the scans!
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Postby ErikaSlovakia » Tue Nov 17, 2009 10:17 am

Ana wrote:I just got a mail from Prof. Haacke. He'll be in Frankfurt this saturday and he is going to meet the professor from the Frankfurt university with whom I'm exchanging mails. So I really hope that they'll meet and that the result will be very positive for all the people in Europe looking for a place to do the scans!

That is great news!
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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby LR1234 » Tue Nov 17, 2009 10:29 am

Fingers crossed:) I quite fancy going to Germany after Poland:)
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Postby Youri19 » Tue Nov 17, 2009 11:08 am

Ana wrote:I just got a mail from Prof. Haacke. He'll be in Frankfurt this saturday and he is going to meet the professor from the Frankfurt university with whom I'm exchanging mails. So I really hope that they'll meet and that the result will be very positive for all the people in Europe looking for a place to do the scans!


Dr. Haacke is doing a tour in Europe i think :D . Because tomorrow he will be in the Netherlands to visit a big hospital here.

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Postby Ana » Tue Nov 17, 2009 12:14 pm

Yes, as far as I know there will be a meeting at November 20th with Prof. Haacke and europeen scientists/doctors concerning CCSVI. Apart from Poland and Italy Old Europe really needs a bump in its... (at least people like my neuro :wink: ).
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Postby ozarkcanoer » Tue Nov 17, 2009 1:00 pm

Dr. Haacke better be back in Detroit on December 7, because that's when I'm scheduled for my imaging !!!!!! :D :D
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add another neck injury to the bucket....

Postby jenf » Mon Dec 07, 2009 7:05 am

I just posted under a different topic in this forum after having an epiphany yesterday morning. My first MS symptom (double vision) began 3 days after a neck injury caused by strenous exercise. I was convinced (at the time) that they were related. Doctors, of course, dismissed this and said it was coincidence. Now, I am once again convinced that they are related. I wonder how mnay others will fall into this category? I doubt this will cover all MS'ers, but I'm guessing it will not be an uncommon theme...
Jen
RRMS - 06/09
LDN 4.5mg - 06/09
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Postby Algis » Mon Dec 07, 2009 7:18 am

Of course it must be debated; but the essence of CCSVI is that the 'reflux' and/or 'stagnation' of blood let perfused by osmosis blood/iron/only_God_know_what into the brain's cells.
It seems to me that 3 days is a short time for that to occurs but beat me wrong.

I wish it'd be that simple ..:?
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