Franks CCSVI log - @Prof. Vogl Frankfurt

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

Postby Frank » Thu Sep 23, 2010 9:51 am

Thanks for posting your Question to Dr. S.

In Frankfurt they are doing the MRV according to the Haacke protocol so considering MRV I guess they did what is possible.
I didnt ask Prof Vogl if he could use IVUS - did anyone else ask him?

I do see that there might be some open possibilities for finding additional problems concerning CCSVI and I also had the impression that some other doctors might have taken some more time (?diligence?) evaluating the venography.

But I do also think that Prof Vogl is very professional and I dont think I could have made a better choice than what I did, at the moment.
Hopefully the most substantial disturbances have been found and were corrected (hopefully long term).

Anyway I am confident that in the next few years the field of CCSVI will advance rapidly so I might consider an other CCSVI investigation/intervention in the future...

--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 Thekla » Thu Sep 23, 2010 10:24 am

I certainly don't want to give the impression that Prof Vogl isn't uber competent! I felt very comfortable with his expertise. He was the best choice for me too.

I didn't ask him about ivus when I was there either. My goal was to get enough benefit to be able to wait until they know more and I think I succeeded. I am just convinced that I can eventually get more! I suspect that some of the disparate outcomes might be explained by there being so many different kinds of vein issues that can affect us. He told us that about 1/3 of patients experience amazing results, 1/3, only modest slow improvement and another 1/3 seem to have little or no change. I seem to be in group 2.
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Postby Frank » Thu Sep 23, 2010 12:33 pm

I'm afraid that one always has to keep in mind that MS does leave a substantial structural damage in the CNS.

There should be no doubt that the myelin- and axonal damage as well as grey matter damage and overall brain atrophy is real.
And these kinds of structural loss will imo. most likely not be reversible by any of todays means.

The better perfusion might improve some brain function, some MS-symptoms may be explained by an increased pressure in the CNS due to CCSVI which may reversed by liberation procedure, and the possible lack of further exacerbation might give the body the opportunity to heal to some degree.
But I dont think its anyway near realistic that all MS "problems" could be reversed by some intervention to the hemodynamics, whatsoever.

So imo. its well conceivable that the degree of regeneration after liberation does refer to different degrees of structural damage in the CNS.

--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 Cece » Thu Sep 23, 2010 1:33 pm

Frank wrote:There should be no doubt that the myelin- and axonal damage as well as grey matter damage and overall brain atrophy is real.
And these kinds of structural loss will imo. most likely not be reversible by any of todays means.

There's so much we don't know...I don't think there's grounds for undue optimism or undue pessimism! I am hopeful that once the ongoing damage is stopped, that many here will experience reversals of more damage than currently thought possible. I agree with what was said above, that if Dr. Sinan's percentages of azygous stenosis are correct, then other doctors are undertreating that area, and it's an important one!
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Postby Frank » Sun Sep 26, 2010 6:55 am

I'm very happy I can report one definite improvement: Usually after about 20-30 minutes of walking my right foot was always dropping to the front and toppeling to the outside. This has always been obvious to me and people who were walking together with me.
The toppeling to the outside afflicted me since a relapse about 5 years ago. For the past 3 days it did no longer occur - even after about 60min of walking :)!

I already have some more things in mind that might have changed since my ballooning but I try only to report things when I'm very sure about it...

Overall I still feel somewhat worn out - I have to sleep a lot, my groin and the ballooned veins still hurt a little but nothing anyway severe - it just takes some more time...

--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 cheerleader » Sun Sep 26, 2010 9:08 am

Frank--
thanks so much for posting this detailed account of your treatment by Dr. Vogl. You are right, we are at the beginning, and the doctors continue to learn more about venous malformations each day. You've been on these boards a few years, and I've always read your posts on a variety of topics.

I hope you continue to see relief in MS symptoms and that you have bought your brain some more time by relieving venous congestion. My own Jeff has decided to sit out further treatments until more is known and the science advances...but he is happy to be awake, progression free, with several symptoms relieved and gone, now 18 months after treatment.

Keep posting,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Frank » Sun Sep 26, 2010 3:18 pm

Cheer,

obviously I can hardly thank you enough for you commitment in pursuing CCSVI and sharing your insight with the TIMS community.

Sharing our experiences (good and bad) throughout the internet is a very powerful and important task - imo. one of the way an MS-patient can really have an impact.

All the best to you and Jeff!
--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 » Thu Sep 30, 2010 3:16 pm

Update:
In the past days I slowly tried to ramp up my exercise scheme, I still hesitant to push too hard, but I'm trying to raise the workload day by day - I'm currently on a level about 70% compared to before surgery.

Further improvements:
One thing I had in mind on the last post, but feel now confident enough about to report is the strength in my right knee.
Usually after walking for about 15 minutes (hopefully the following explanation will somehow be understandable) my knee joint in the elongated position (not bended) had a clearance (a range of about 10° of angle) where I couldn't continuously control the bending motion of the knee joint. While this problem has not resolved completely I would estimate that its improved by about 50%: I get this problem later on during a walk and especially in the rested state I feel much more comfortable (lets say 70% better).
After walking for some time my right leg usually got really heavy (like if I had 3kg on my right ankle), which also got better (lighter) to some degree (ca. 30%).

Another thing I noticed immediately after surgery is an improvement in my vision. I suffer from a nystagmus in both eyes and some kind of cloudy vision.
The cloudy vision became better but I also felt that seeing was "somehow" not so straining any more kind of more calm/smooth. Maybe its also that the nystagmus became better, I think looking to the left side seems easier now, but I'm not that sure about that.
But for whatever reason I do feel some relief to my vision.

I used to have regular/almost daily problems with spastic twitching (it may also be described as some sort of restless legs, I'm not sure :oops: ) in both upper legs. Its an urgent feeling that I need to put tension to the leg-muscle. If I do so for some seconds (or if I dont do it willingly the muscle-contraction occurs unintentionally like sort of a short twitching of the muscle) this urgency resolves but reoccurs every few minutes. (can anyone tell me - from my provisional description - what the correct term for this symptom would be?)
This Symptom has not disappeared completely yet, but got much better, I didnt have it for the past two days and if it occurred (the days before) it came with much fewer contractions per period and the twitches were not so strong.

--Frank
Last edited by Frank on Sat Oct 09, 2010 5:11 pm, edited 1 time in total.
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 » Sat Oct 09, 2010 5:10 pm

Update

I caught a nasty cold last week so my plans to ramp-up my exercise scheme had to be postponed. Anyway, I'm doing fine again and all the relief in symptoms that I described in my previous post sustained.

So far so good...

--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 Cece » Sat Oct 09, 2010 5:48 pm

What you describe sounds like restless legs syndrome, as I understand it, although I'm used it being described as being at night or while trying to sleep.
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Leg muscle twitching

Postby Ned » Sun Oct 10, 2010 4:20 am

Maybe this is "spasms" in the leg
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Postby Frank » Fri Oct 22, 2010 6:58 am

Update

There is nothing much new to report. The improvements I felt seem to be stable. When I pushed a bit harder on my training scheme I did experience some of the old problems concerning my right leg/foot occurring, but by far later/and not as articulately as compared to before my Liberation.

Since about 10 days, I also started to take the supplement (Doctors Best) Natto Kinase (2x 1 daily) but so far I dont notice any changes whatsoever.

--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 » Tue Nov 16, 2010 4:24 pm

Three things happened since my last post.

My right arm has a long history (maybe it even was my first but very subtle MS symptom) of not being 100% OK in the fine motor skills. To make a long story short, since the beginning of the 2010 I noticed a very slow but continuous decline. It was nothing that was noticeable in my daily life so I decided not to take steroids. Since June or so I additionally noticed that my arm got more heavy after working out - there was no disease activity on MRI and the Evoked Potential tests were all fine so I decided to wait that maybe the CCSVI procedure might improve the symptoms of the right arm.
Unfortunately that was not the case so two weeks ago I decided to take course of steroids pulses (5x 1000mg). I think some of the right arm symptoms improved especially some dexterity of the hand got better. I'm not sure about the heaviness yet but it seems to me it also got somewhat better.

Since the pulse I also seem to have way more energy, maybe thats still an aftereffect of the steroids, but I'd rather doubt that. Fatigue is an issue that really impairs my daily life and over the years (regardless what drug I was on or if I did a steroids pulse) it got slowly but continuously worse.
So I dont know how/why that improvement came about but I gladly take it anyway and hope it will last...

Today I went to Frankfurt to have my (1st) Doppler with Dr. Meyn, obviously it would have been much better to have it done prior to intervention but unfortunately that was not possible - at least I now have a post-op baseline Doppler to which I can compare the follow-up exams.
Dr. Meyn said my veins looked pretty good now, good diameter and overall flow. On the right side there was still some retrograde flow, but to very little degree, Dr. Meyn said it was nothing to be worried about.

After discussing my situation with my Neuro I will to be included in an open-label trial using Gilenia. If all goes well I will start in about three weeks. He told me that after one had been taking Tysabri the trial protocol requires a safety off-Tysabri-period of at least 6-month.

--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 » Mon Dec 06, 2010 9:42 am

Unfortunately I got a pretty bad relapse on Friday night with paresthesia on my lower right side of the body, increased muscle tension in both back-most thighs and a weakness in my left front tight.
I got my 3rd steroid pulse today and do feel somewhat better, but with my left side being nearly normal up-to now and smoothed out some disability on my right side this might become a significant drawback for me :(.

My enrollment to the Gilenya trial is still pending, hopefully during this week I will get further information.

--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 Frank » Mon Dec 13, 2010 3:27 pm

Fortunately after the steroid pulse the symptoms of the relapse got very much better already and will hopefully disappear completely in the days to come.
I still feel pretty lousy due to the steroids, especially as this was the second course in about a month.

I will have a cranial and spinal MRI done in mid-January to see what kind of damage the relapse caused...

The Gilenya trial I wanted to enter is currently not recruiting any new patients.
My neuro hinted that maybe in mid January there would be a new possibility for me to get enrolled...

--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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