Franks CCSVI log - @Prof. Vogl Frankfurt

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

Postby L » Wed Aug 18, 2010 5:14 am

frodo wrote:
ttt1 wrote:
frodo wrote:I have read somewhere that he never puts two stents at the same time


Many posts on this forum say he doesn't use stents.


It seems so. I was wrong. Sorry.


The mystery is cleared up - it is Dr Beythian (who works with Dr Kraus) at Privatescan in Dusseldorf. He does so because their is a small risk of the jugular vein collapsing they said (I spoke to a spokesperson for the practice) and separate interventions avoids the rare chance of both veins collapsing at the same time..
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Postby frodo » Thu Aug 19, 2010 11:39 pm

L wrote:
frodo wrote:
ttt1 wrote:
frodo wrote:I have read somewhere that he never puts two stents at the same time


Many posts on this forum say he doesn't use stents.


It seems so. I was wrong. Sorry.


The mystery is cleared up - it is Dr Beythian (who works with Dr Kraus) at Privatescan in Dusseldorf. He does so because their is a small risk of the jugular vein collapsing they said (I spoke to a spokesperson for the practice) and separate interventions avoids the rare chance of both veins collapsing at the same time..


Thanks. It is quite interesting to read about the opinions of different doctors and to track their methods. This forum is growing up to be the most comprehensive online reference about vascular surgery!!!
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Postby Frank » Tue Sep 07, 2010 3:02 pm

I have been to Frankfurt (Prof Vogl) today to get my CCSVI examination done.
I only had MRV (Haacke protocol) as Dr. Meyn (the one doing the Doppler) is attending a conference this week.

First, and most important, my results indicate issues on both Jugulars so I qualify for venography/angioplasty :D! The azygos looked fine on MRV.

My left Jugular showed hypoplasia with reduced blood flow.
The right Jugular showed only some slight malformation/narrowings.
On the 3D-image collaterals where visible lateral of both Jugulars.
This fits pretty well in the picture of my clinical MS symptom and lesion load - most lesions are located within the left hemisphere of the brain and clinical symptoms afflict predominantly my right body side (leg, foot, eye).
As MRV is regarded not to be that much reliable in evaluating CCSVI I dont care too much about the specific findings - what is important is that something seems wrong and so I now do qualify for venography.

I will now (hopefully) get an appointment with Dr. Meyn sometime next week and then will proceed to arrange an appointment for venography/angioplasty - which Prof Vogl said could be scheduled in about 6 weeks.

------------------------------------------------------------------------------------------

How things went in Frankfurt:
--------------------------------
I was scheduled for 13:00 today, the MRI was done around 14:30 (it took about 30min) and I left the clinic at about 20:00! so regarding the set up its a mess.
Today I have recognized about 6 other patients who have been obviously there for their CCSVI exam - so I think Prof Vogl is gaining experience rapidly now. He also told me that he is hardly able to keep up with patients requests for CCSVI examinations from all over the world.

I'm still a bit concerned about the diligence of Prof Vogl. He swept though all the pictures in about 3min. I have no doubt that he is a very professional and experience doctor, but can one really analyze the venous situation on such a quick glance? Anyway, he will evaluate all three veins during the venography, so as long as its done thoroughly then I'm fine with it.

--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 » Tue Sep 07, 2010 6:30 pm

I was treated by Prof Vogl on 13 August. He did both jugulars. I had the mrv earlier in the week but the dopplar appointment fell through the cracks. Prof Vogl diagnosed the 2 blockages from the mrv and said the azygous looked fine. He treated a couple of days later---I had a 4 hour delay as there were 2 emergency cases (accidents) that took priority. He ran through and checked the azygous at my request during the procedure and said it was clear. I am very satisfied with Prof Vogl's competance. My blockages were very high and he ordered a special catheter for me.

I am not convinced that valve irregularities or flow disturbances would always be identified this way. Especially when Dr Tariq is diagnosing azygous problems in a majority of patients, but only by diagnosing via balloon. This may be an area that Dr Vogl has yet to explore.

You can definitely tell who the ccsvi patients are in the waiting room---got some worried spouses and tired but cautiously excited patients---of course afterwards is different. It is a unique atmosphere.
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Postby Frank » Wed Sep 08, 2010 3:49 pm

As Prof Vogl told me yesterday he would endorse a venography/angioplasty only from the MRV findings and because "time is brain" I sent an email to him today asking about an appointment for venography/angioplasty ahead of the Doppler exam.

I will have venography/angioplasty on 21.09.2010 (sooner by far than the 6-weeks waiting Prof Vogl indicated yesterday, but that fine with me :) )
Hopefully I will get an appointment for the Doppler ahead of surgery to gain even more insight on my veins-status.

--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 » Sat Sep 11, 2010 12:29 am

I got my Doppler appointment now, it will be done 2 hours ahead of surgery...

--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 opto » Sun Sep 12, 2010 1:19 am

How much do MRV and Doppler examinations cost in Frankfurt ?
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Postby Frank » Sun Sep 12, 2010 3:58 am

I'm not really sure about that, but I heard MRV is 1.200 EUR and the Doppler would be around 200 EUR.

--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 Sep 15, 2010 8:16 am

I received the doctors (Prof Vogl) examination findings letter today.

Two things I found to be particularly promising, it says:
- Reduced flow in the left IJV AND partially retrograde flow (which is, what CCSVI is mostly about).
- Pronounced collateral networks right and left over paravertebrale veinsystems.

For those interested here are the other numbers of the findings of the IJV according to MRV:
- Remaining lumen of the hypoplastic left IJV is 3-4mm.
- Some narrowness in the right IJV, about 20%
- Flow left IJV 12cm/s right IJV 25cm/s
- Flow retromandibulär (behind the jaw) left 14cm/s right 31cm/s
- The azygos is reported to be free according to MRV

--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 frodo » Wed Sep 15, 2010 1:56 pm

Frank wrote:I received the doctors (Prof Vogl) examination findings letter today.

Two things I found to be particularly promising, it says:
- Reduced flow in the left IJV AND partially retrograde flow (which is, what CCSVI is mostly about).
- Pronounced collateral networks right and left over paravertebrale veinsystems.

For those interested here are the other numbers of the findings of the IJV according to MRV:
- Remaining lumen of the hypoplastic left IJV is 3-4mm.
- Some narrowness in the right IJV, about 20%
- Flow left IJV 12cm/s right IJV 25cm/s
- Flow retromandibulär (behind the jaw) left 14cm/s right 31cm/s
- The azygos is reported to be free according to MRV

--Frank


Hi Frank. My girlfriend was there last week. How long did you have to wait for the letter? Did he send you the CD with the Doppler test?
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Postby Frank » Thu Sep 16, 2010 12:47 am

Hi Frodo,

I was in Frankfurt on the 07.Sept and received the letter yesterday.
My Doppler hasnt been done yet - it is planed to happen two hours ahead of surgery...

--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 Sep 22, 2010 12:01 am

Yesterday I have been to Frankfurt for my Doppler and venography/angioplasty.
The Doppler didnt happen altogether because Dr. Meyn had to do a surgery and I didnt manage to reach him throughout the day.

My surgery then went ok, actually I think it was somewhat painful.
They gave some medication (I think it was to numb the veins) that either I dont tolerate well or is generally no fun. I had a load screaming whistling in both ears, some pressure in my head and a feeling of severe dizziness.
The Catheter itself feels a bit strange when moving through the body but nothing that uncomfortable.
But the inflation of the balloon in the IJV was pretty tough. It was a feeling of enormous pressure in the head - but on the upside it didnt take too long.

The dilation was successful in both IJV (the balloon was inflated for 6 times on each side) the azygos was checked but was ok.

The Catheter procedure itself took about 30 minutes I guess. Afterwards one has to lay and rest for about 3 hours because of the risk of bleeding at the insertion point in the groin.

I'm not sure about any improvements yet at first glance I would at least say that I dont see dramatic improvements but I cant really check because my right leg side is the most severely affected by MS but due to the insertion point for the Catheter I go easy on that side for the moment.
Maybe I see some improvements in my nystagmus, but I want to let some days go by to be more certain about that.

I will be on Aspirin 100mg per day for the next 6 month. Follow up will be done in 6 month in Frankfurt.

--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 8:08 am

Frank, that sounds familar! Although, I did notice immediately that I wasn't tired at all. My fatigue is just gone. People say my face looks different--better color. I've heard my conversation is better. My legs are not better. He definitely fixed the high blockages that he found, but I wonder whether there are still flow disturbances that were not identified. The local was not sufficient for me initially--I complained and he gave me more! The internal pressure was odd, unpleasant and sometimes mildly painful but not intolerable imho.

I also didn't have a dopplar because it just didn't work out. I think Prof Vogl prefers the mrv over the dopplar. He doesn't seem to value the dopplar. I think this perhaps limits the abnormalities that he finds. Would he identify webs or reversed valve from an mrv? or from the venegram? I don't know. Maybe it depends upon their location? His follow up papers were mostly dealing with fatigue, maybe that is his focus. I do feel better so

Dr Sclafani wrote on another thread:
"To date I have seen the following: In most patients they are mixed

1. Anomalous confluens of jugular vein
2. Absent Jugular vein
3. annular stenoses
4. hypoplasia, isolated
5. hypoplasia, multiple tandem
6. duplications with stenosis
7. reversed valve
8. incomplete or fused valve leaflets
9. misplaced valve
10. false channels (may be incomplete jugular duplication)
11. webs
12. indentations/impressions
13. abnormal drainage of external and vertebral veins

So variation is the rule."
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Postby Frank » Thu Sep 23, 2010 8:20 am

Hi Thekla,

I do think that the Doppler could give some useful insight and might be especially valuable for the follow-up as a baseline comparison.

But when it comes to finding disturbances in blood flow (whatsoever) I am pretty much confident that there is no better tool than the venography.

--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 Thekla » Thu Sep 23, 2010 8:34 am

Here's my question and Dr S's answer from the other thread.

Thekla wrote:
Dear Dr Sclafani,
I was also tested (mrv only) and based on the findings treated by Dr Vogl in August. LIJV, 40% and RIJV, 10% blocked very high, the azygous was judged to be in order but was also run through quickly after the ballooning to 'be sure'. I experienced immediate lack of fatigue and improved mental clarity (which I hadn't been aware that I was lacking) There was initially improved muscle strength in the legs and much better bladder symptoms which quickly faded.

I am wondering whether, considering Dr Tariq's experiences with azygous irregularities, if azygous problems might be being missed, particularly when only a mrv is done for diagnosis. I think there would be no identification of flow disturbances, if I understand correctly. Perhaps, flow disturbances are also being discounted since some blood is getting through anyway.

Can you please comment?


Dr Sclafani wrote
There is NO evidence that MRV correlates with CCSVI. I have seen excellent MRV by Dr Haacke that are starting to show nicely the anatomical problems of the veins but some of these findings are not seen by MRV, nor by catheter only by IVUS or compliant balloon inflation testing as described by tariq sinan.

i think that these azygos webs are a great challenge.
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