Franks CCSVI log - @Prof. Vogl Frankfurt

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

Postby Frank » Tue Dec 28, 2010 4:39 pm

Unfortunately my symptoms that came with the last relapse didnt disappear completely instead they got somewhat worse again. Especially my right leg side feeling too weak and isnt doing too well during my walks. To some extent it seems to me as if I lost some of the improvements I gained after the CCSVI procedure.

To further investigate that, I will have a cran. MRI done in Frankfurt (17.01.2011) with Prof Vogl and at the same time will let them do the MRI sequences for the CCSVI checkup to see how things are going for my veins...

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Frank » Wed Jan 19, 2011 9:15 am

The cran. MRI as well as the MRI of the whole spine did not show any new lesions. My left IJV showed some re-stenosis (20-30%) but still much better compared to before the CCSVI procedure so Prof Vogl did not recommend another intervention to fix that.

All this leaves me somewhat clueless - it would have been "nice" to know where the last deterioration originated from.

I will see my neuro on Friday, hopefully he will have good news about the Gilenya trial...

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
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Postby Frank » Sat Jan 22, 2011 7:56 am

I will begin to use Gilenia from 08. Feb on a "compassionate use" basis. I am going to start a new thread in the Gilenia-forum to cover my experiences with the new drug.

In the previous weeks my RLS got contiuously worse and stats to be really annoying - especially during the nights. I'm going to try some dopamin related medication for it but I will wait until I feel comfortable on Gilenia.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
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Posts: 542
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Postby Lyon » Sat Jan 22, 2011 8:41 am

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Last edited by Lyon on Sun Nov 20, 2011 4:37 pm, edited 1 time in total.
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Postby Thekla » Mon May 23, 2011 4:19 am

Has anyone heard any recent reports about Dr Vogl? He has to have treated a lot of patients by this time.
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Postby Frank » Mon May 23, 2011 5:04 am

Hi Thekla,

in other forums I still read about patients that go to visit prof Vogl for CCSVI surgery - so he is still active. On the other hand I have not seen anything like a scientific paper of him regarding CCSVI.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
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Posts: 542
Joined: Wed Jan 03, 2007 4:00 pm
Location: Germany

Postby Thekla » Mon May 23, 2011 5:50 am

Hi Frank! I was wondering about his restenosis rate and whether he has changed any of his methods. There have been so many discoveries across the globe in the past year. I was very happy with what he did when he treated me and I definitely had improvement but I have heard so many comments from patients that their 'azygous was clear' and didn't need treated and I really question that. Perhaps the problems aren't being identified by the testing.

I do wish he would have done left entry as well because it leaves an unanswered question.

Have you continued to make progress, or at least kept the results you had?
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