First Operation in Frankfurt!!!!!!!!! WOW :)

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

Postby alanbrowne » Mon Mar 15, 2010 5:25 am

savouryourlife wrote:I wish I could fill in some gaps for you. I had the procedure done with Dr. Vogl on Wednesday past. I wish I knew what the exact Zamboni protocol was, going into the procedure.
I didn't understand enough I guess pre procedure.
I didn't get a sedative like they do in Poland.
I didn't receive blood thinners post procedure like they do in Poland.
I didn't get a post ultrasound like hey do in Poland - I did get a cat scan.

I am not feeling as good post procedure as they do in Poland. I'm told it can take up to 4 weeks.

I'll keep you posted.

Please forward any questions to me. I am happy to help.

big hug


Hi,
I'm travelling to Frankfurt in 2 weeks to see Dr Vogl.
Also have a Doppler ultrasound booked with Dr Meyn before the MRI.

How did you find the experience?
I take it they found CCSVI?
In the CAT scan post procedure, did you see the results?

Many thanks,
Alan
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Postby savouryourlife » Mon Mar 15, 2010 5:42 am

Alan,

You'll be able to speak with him really well in person. He is quite easy to speak with and very kind. The procedure was a bit scary, and painful but I'm sure, like me, you will be so excited to be rid of this disease, that it really won't seem so bad. He talks you through it really well. They take care of you afterward as well.

The ct scan, I think was to check that everything was fine in the brain area. No dye was used so I don't think it could read the veins.

You should ask for a doppler afterwards. It should be a requirement. I didn't think of it until it was too late.

Good luck my friend!!
I hope you have quick results.
Feb 18, 2010 Eco-Doppler Vaughan, MRV Frankfurt, left INT Jugular valve problem x2, RRMS since 1996, Angioplasty in Frankfurt March 10/10<div>Inclined bed therapy - 09/09/10</div>
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Postby alanbrowne » Mon Mar 15, 2010 7:44 am

Hi,
Many thanks for the info.
Thinking about it, I will ask for a Doppler after, it makes sense really to check that the procedure has worked.....if CCSVI is detected of course....

Take care,
Alan
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Postby savouryourlife » Mon Mar 15, 2010 7:51 am

Oh they will!!!!!!
Feb 18, 2010 Eco-Doppler Vaughan, MRV Frankfurt, left INT Jugular valve problem x2, RRMS since 1996, Angioplasty in Frankfurt March 10/10<div>Inclined bed therapy - 09/09/10</div>
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Postby alanbrowne » Tue Mar 16, 2010 7:46 am

Just found this on a Dutch MS forum, translation isn't that good but makes for good reading:

Ingrid:
First, everyone thanks for the nice support and congratulations, but to honor where honor is, I'm not involved in the first Dutch Prof. Vogl is treated, but the first of this forum, dubious honor, pure self-interest

This one word long report, I try as much as possible to answer all questions and will probably have many questions where I have no answer, but try not to make them and I give honest answers.

February 8 am to Professor Vogl, Frankfurt went because I wanted the evidence held that in me there is CCSVI and sure enough I came back with a CD showing the evidence and then ... ... frustration.

The CD + report by Professor Vogl to my neurologist and GP to see if they sent this evidence here in the Netherlands can do nothing for me, unfortunately, the neurologist is waiting to A'dam and my doctor saw clearly why I helped wanted, but was on hands and feet tied, he told me if I decided to go to Frankfurt he completely understood me and would stand behind that decision.

When the decision was taken quickly and directly to Dr. Vogl called, which I also February 8 had already told me he wanted to treat, and he asked whether I could come Thursday, it was Monday, so a moment and swallow but decide to go for it, I had to take some blood values and not 123 as I had at hand the day before I was there to do this
* this for everyone who plans, ask for a moment what it must be Vogl because I know and it is not always convenient (cheaper) for the Netherlands to do this.

Wednesday afternoon a meeting with Professor Vogl he told me very clearly that, and now many people will be shocked, it is experimental for him and that he absolutely can not say in advance what the outcome is that he does not know the result for 5 or 6 years and that there will be risks attached. He also knew not what would happen, that he met and against, in any case not only stent ballooning.
He stressed a few times asked me if I was aware of the risks and I fully echoed that, I must here again just lend a hand drawing.

I was in a phase of my "MS" I no longer worry about me there was, I was not really a life, in recent years I deteriorated so much that life was hard for me. I had still many features that others have not, my biggest was easy, yes that's right HAD, my chronic fatigue and my nerve pain (which issued it yet, but who knows).

The next morning he would start treating me for 8 hours, for anyone who goes, who do not time critical, it can sometimes set 3 appointments at the same time, since I also found out at half past 10 when I went to ask what was wrong, but at a quarter to 10 I was finally called inside. (It is a university clinic there so many people walking around who also have to learn everything, I think I've counted 9 or 10, you feel at least not alone.)
In my mind it was zero, look at infinity, local anesthesia, incision in groin, first to the right, reflux, and there was little by 2x and then sprayed on to the left and there were 2 services oxen in the left jugular, first just checking if the blood flow was well underway and this was the case, so 2x ballooning, subsequently heard that this is a risky act.

All in all, it lasted an hour and a small pro Vogl was very happy that this had gone so well, his words "another successful experiment" enne I was glad.
You then have to go the day treatment to recover, and then 2 hours back to Vogl, what they had forgotten to pass me for the first time have a MRT (German for MRI, but fortunately this time 10 minutes, the first time almost 1 hours) and a CT scan had to make, this is very positive because immediately be verified that no complications occurred.
Prof. Vogl wanted to make sure everything worked well and so we could immediately see the photos and what a difference the difference and see the pictures, but before and after treatment.

And then everything went very fast, he is a scientist and no further fuss, his work was done, he gave very clear that it is very important how much progress I book this treatment in the next six years and then become viewed or there still a stent should be placed.
And now the main results that everyone wants to know and what we have gone.

My biggest complaint fatigue, the fog lifts, I can see clearly again, everything around me is clear again, I can immediately respond to questions, I am awake and alert and I am again able to row around epistle by tapping a week instead of pulling out, I go on?
And then all the little complaints in 14 years MS have been run and you've seen them learn to live, it's just bizarre that when you come out all at once to find that there is already much improved, not earth-shattering news, but fun to mention.
Naturally warm hands and feet, I can back my chin to my chest without those annoying tingling in my right hand again, I feel in my feet yet.
I always had a severe pressure behind my eyeballs, ESE's had many, and spots that made reading very difficult ... ... ... .. road.
Finally some decent can urination, a pretty powerful beam ☺ and I had a delayed bowel movement, here is becoming very lyrical about to write, but time will tell whether it continues so? (eaten the past few days).

Tonight was first relaxed in bed can not lie about my whole body tingling feeling.

A few tips for people who are going to Frankfurt;
1. Go for 2 nights, get you the night before the treatment are already in Frankfurt, all treatments for the afternoon (you should not think of immediately after such a trip before the treatment can slide). And then one night stay for the next morning, again with new energy to go back home.
2. It is not a Dutch hospital where you get to make lists and follow, let your doctor know so they can look after you at home and can give tips on the care of the surgical site (big word for such a small incision, I have had not bothered).
3. You get an advance list you all take note of, so if you want to know something, ask and you do get an answer instantly. You must at least be sober, one sip of water you may have to take medicine. Now give yourself what medications you use.
4. You have no prior bed, just take everything along with you what you want, get everything in one big plastic sack later on your bed when you get put into the day nursing care and brought word that you do not constricting clothing aanhebt.

Before Image
http://www.ccsvi.nl/forum/download/file.php?id=83

After Image:
http://www.ccsvi.nl/forum/download/file.php?id=82
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Postby tzootsi » Tue Mar 16, 2010 8:46 am

Very nice report, and great pictures. Thanks for digging this out!
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