This Is MS Multiple Sclerosis Knowledge & Support Community

Nano wrote:Hi,

My brother has an appointment with dr Vogl on Monday...

I am really glad I was able to find this forum as I am not sure of his experience in diagnosing & performing the vascular surgery necessary to treat CCSVI.

Please if someone could walk me though what they did from day one till they left after the surgery. How long did the whole process take? and any information.

I tried to contact Dr Vogl by e-mail and phone but he was giving me minimum answers so things are still not very clear to me!

Same here. His emails are three words long!!!
I cannot tell you anything about the surgery because we still didn't do it.

Hello Frodo....
where you atleast satisfied with the results you got? would you recomend going to see him and did he offer to do the treatment for your girlfried???

I've been trying to translate some of the dutch and German forums to try to get more information and so far didnt get much good news

We will going to see him all the way from Canada... I am so confused!

Hi,

I'm new, but following this forum for a while now..

I'm from Holland and tried to get some information from Dr. Vogl about his procedures. But it's al so vague... He's doing the diagnosis with MRI and Doppler, but from what I've read on the dutch forums he finds less CCSVI than for example Dr. Simka. And I can't find anyone who he has been treated by him with ballooning, so I don't think he has treated many people yet.

I decided not to go to Dr. Vogel, but to wait for an appointment in Poland or Bulgaria. It's a shame, because it's only a five hour drive to Dr. Vogl. But 1000 euro's is a lot of money, not knowing if he's following the right procedures I think.

Maybe you should think it over if you come all the way from Canada?

I hope there will be people on this forum posting some positive things about Dr. Vogl, that would help a lot!

This is for a Phlebography as opposed to an MRV:
(The doppler which was done, was completely non-invasive and took about an hour)

I don't know what they do in Germany, but this is how it went for my husband:
1, He had to meet with an anesthesiologist a week before, who asked questions and prescribed a blood test to check that my husband could handle what the doctor gave him, I guess.
2, The evening before the op, I had to use a depilatory cream all around his groin. As much area as possible makes getting the sticky bandages off a lot easier. They suggested the cream as opposed to razor to cut down on risk of infection.
3, He had to shower with an iodine soap the night before and the morning of the op.
4, He was not to eat or drink past midnight.
5, He arrived early to check in and go over the checklist with the nurse to see he had done everything requested and to change into the hat, feet things and gown.
6, He got taken away on a rolling bed and that is where I left him. He said he was a bit out of it from the anesthesia, that he had no pain, and I think he was told to do stuff like hold his breath, but I wasn't there...
7, He came back to the room and had to stay for at least another 3 hours before I took him home.
8, He was told to drink lots of water to get the dye out. (He was doing this anyhow, as he had a UTI due to wearing an indwelling catheter...)
9, He only had Angioplasty, by the way.
10, He was not to shower until the next day.
I think that is all, and although groggy from the anesthesia, he didn't have any other problems.

On the 2. february I visited prof. Vogl and Dr. Meyn. It was a 5 hours drive from Holland but it was not to bad. The MRI showed an asymmetric bloodflow and dr. Meyn found that a jugular vein was compressed by the neckarterie. This means that a balloon is not an option for me. They may invite me for measuring the bloodflow. I hope they are going to operate in Frankfurt, but if not I'm going to Poland for treatment.
By the way; communication is not a strong point of prof. Vogl. Dr. Meyn on the other hand is willing to give you information.

Thanks a lot for everyones replies...

I really hope my brother's visit will be worth it. He just suffered from 2 attacks, about 2 weeks apart and it looks like he will be needing a wheel chair from now on.
We dont want to wait any longer as we are afraid of more attacks and more damage.

Dr Vogl informed me that they do the surgery if required, so I am not sure no one hasn't done it yet?!

Hello Nano,

In The Netherlands, no one has had surgery done by Dr. Vogl yet. What I heard his "succes"rate in diagnosing CCSVI is much lower than Simka. I do not know what the reasons are for this.

We all have asked for a second opinion with Dr. Simka, but all is quiet on the Polish front.

Perhaps you can ask your question on the German Forum? (in english). Perhaps you get extra info.

Good luck!

Inge

Thx Inge,

Do you have any idea if his MRI & Doppler are done in the way they are supposed to?
I guess what I mean did you have to redo them with Dr Simka or he was able to diagnose you with what you've got from Dr Vogl?

I really appreciate everyones help

Hi,

Vogl is following the Haacke protocol. I assume (do not have experience with it) that Dr. Meyn is following the proper protocols too.

i haven't heard from Simka yet, so I can't really answer your question. dr. Schelling from Austria was able to give me a good diagnosis in the second opinion. What I understand is that he saw the same things as Dr. Vogl, so no missed discrepancies there.

Hope this helps.

Inge

Nano wrote:Hello Frodo....
where you atleast satisfied with the results you got? would you recomend going to see him and did he offer to do the treatment for your girlfried???

I've been trying to translate some of the dutch and German forums to try to get more information and so far didnt get much good news

We will going to see him all the way from Canada... I am so confused!

I would say that overall I am satisfied, but not completely. The information was very little during the whole procedure, there was no doppler, and I still don't know if other doctors can read a SWI MRI.

Besides, Zamboni original studies point to at least two problems for person. We got only one, and other people that visited him had a negative result.

Anyway, appart of these issues I have no complain at all about the procedure.

And yes. He offered surgery for the condition. We are still thinking about it.

The people in Frankfurt are thinking about offering the procedure to those who have CCSVI but no procedure has yet been done. I guess Dr. Meyn would be the contact as he is an angio whereas Prof. Vogl is a radiologist.

Yes, Prof. Vogl's mail are quite short. I first contacted him last November and was very happy when he answered very fast within 30 minutes and was very interested in the material I sent him about CCSVI. He promised me that he would start with the scans so I was very happy. When I told Prof. Haacke about that he contacted Prof. Vogl during his Europe trip. Prof. Vogl does the MRI scans with Prof. Haacke's protocol and Dr. Meyn uses Prof. Zamboni's protocol for the ultrasound. But of course they are less experienced with CCSVI as they started with the scans only 2 months ago. So if a person does not have a "clear" CCSVI there is a danger that they won't find anything and that you need another opinion.

The MRI costed me about 814 Euros. You get a cd with more than 1000 pictures on it.

Thanks a lot for everyone's help and information... It really helped me and I am sure it will help others who are thinking of going to see Dr Vogl.

I wish everyone the best of luck

Can I just add something to this conversation.
All of us who are considering CCSVI treatments should give ourselves a big pat on the back as we are the pioneers of something which, I am sure, will become normal treatment for MS. Until then, we all need to consider all the options, ask all the questions and only act when we are 101% happy with what we have been told and 200% happy with the person who told it to us.

I have just sent my second email to Pof V now I await an answer !!! which should be interesting as he is not a man of many words.....

QUESTIONS SENT TO PROF V
Will you be carrying out the test below ?

MRI of the brain and neck - brain images for lesion activity, brain volume and iron deposits
MRI blood safety evaluation -will it include an injection of a contrast agent ? thus measuring the normal and abnormal areas in brain tissue and active lesions and visualize my neck veins.
Doppler exam of the brain and neck viewing the blood flow in the veins of the neck & brain.
Neurologist consultation were by discussions of the findings and possible treatment.
Reports from all tests for my neurologist.
I'm unsure at this minute but I did read a relevance to MS and chest and stomach screening can you elaborate ?

When is it possible to have the screening ?
How much for phase 1 of the screening ?

Nano wrote:Hi,

My brother has an appointment with dr Vogl on Monday...

I am really glad I was able to find this forum as I am not sure of his experience in diagnosing & performing the vascular surgery necessary to treat CCSVI.

Please if someone could walk me though what they did from day one till they left after the surgery. How long did the whole process take? and any information.

I tried to contact Dr Vogl by e-mail and phone but he was giving me minimum answers so things are still not very clear to me!

Hi,
How did your brother got on in Frankfurt?
I am due there in a couple of weeks.
Alan