AVM in my leg

Hi everyone, I've got a question. I've got AVM in my leg (close to my foot). 2 months ago I went to the hospital to see if embolisation could help me. But the doctors said that the AVM is too big for embolisation. The doctors will not remove the AVM because it's too dangerous for losing my leg. Does anyone know if there are other options? On the internet I only found AVM in the head, but nothing about AVM in other parts of the body and treatments. In 2 weeks I have an appointment in another hospital with 5 doctors to check my AVM. I live in Belgium and every doctor I've seen don't know what to do, it's so rare in Belgium. So maybe anyone can give me some advise, so I can tell that to the doctors in 2 weeks. Many thanks !

Hi. I'm not sure how helpful this is. In my own case I have an AVM in my mid thigh which was 6cm and off the femoral artery. I went to several doctors and no one seemed sure what to do. I live in Florida but I sent a disk of my CT to a doctor in NY (Dr Robert Rosen). Eventually I flew to NY and he did an embolization which was successful.
It is my understanding that it is true that removal of an AVM in the leg is usually too dangerous. I hope you will find my experience encouraging. Best of luck.

Ellentje, I recently heard about an AVM Center in Milan that might help:

Research Center on Vascular Diseases, Angiology Unit-University of Milan, L. Sacco Hospital-Via G. B. Grassi 74 - 20157 Milan (Italy) Phone: (+39) 02 50319813/17 Fax: (+39) 02 50319816 E-mail: ■■■■■■■■■■■■

If the doctors in Belgium don't know what to do, then you need to go outside Belgium.

Here are a few other names to try:

Jacques Moret (NR), Paris, France
George Rodesch from Foch hospital in Paris.

Anton Valavanis, Institute of Neuroradiology, University Hospital Zurich
Frauenklinikstrasse 10
8091 Zurich
Tel. +41 44 255 5601
Fax +41 44 255 4504

Elentje, my leg avm is in my hip. My last few procedures have been percutaneous sclerotherapy. It has been helpful. You might try searching Europe for that specific treatment. Also, you can never really remove an avm. I have a doctor try this and ended up having 3 niduses grow back.

I know Dr. Waner in NYC goes to Berlin a couple times a year and he is an AVM expert. If you contact his office in NYC and send any MRIs, doctor's notes, test results or photos he wil give you a preliminary opinion by email. Get as many AVM specialist doctors opinions and consults that you can. It helps you then decide which is the best treatment option for you. Best wishes, Kim

I have an AVM in my ankle too. I don't have any advice. I have always been told it is better not to do anything although when I was a teen they did try embolization without much success. I have an appointment coming up next month. I'll let you know what they say. Let me know how it goes with you too! Good luck.

What I found out in Europe who has specialization on the extremity:

Prof. I. Baumgartner
Head Clinical and Interventional Angiology
Swiss Cardiovascular Center Bern
University Hospital Bern
3000 Bern
Centre for Vascular Anomalies - Cliniques Universitaires St Luc, Brussels. http://www.md.ucl.ac.be/vasc_anom/
Abteilung für Gefäßchirurgie und Angiologie Facharztklinik Hamburg Martinistrasse 78 20251 Hamburg Telefon (+49)40 490650 Fax (+49)40 490654022 Privatpraxis für Chirurgie / Gefäßchirurgie, Phlebologie, Lymphologie Jürgensallee 30 22609 Hamburg Telefon: (+49)40 868663 Fax: (+49)40 86647618 Web: www.prof-loose.de

Prof.Dr.F.Brassel at the Institut for Interventional Radiology, D-47057 DUISBURG-Wedau, Zu den Rehwiesen 7

For details email me

My 9 year old son has an AVM in his leg, it is within the muscle behind his right knee. He’s received 3 lots of sclerotherapy using bleomycin, we are awaiting another MRI scan to see if the AVM has shrunk at all & how much scare tissue there is.

Hi everyone, Last month I went to the hospital Leuven, Belgium. They recommended me sclerotherapy. It's now 3 weeks ago since the sclerotherapy in my right leg. My leg is still swollen, but that is normal they said, it will take 3 months before the doctors can see if the treatment works. So end of June I have a new appointment for a check up. Anyone of you have experience with sclerotherapy? How many months-years was it when you needed another treatment of sclerotherapy?
There was also 1 problem during the treatment. They found out that I have a lot of calcium in my veins. The doctors said it's not normal because I'm very young (30 years) and I don't smoke, don't drink, don't have any other health problems. But when I ask what to do about it they said: good question. Doesn't give me good hope.... Anyone experience with that....

I have a little understanding of what you went through. My AVM was in my left foot and I have probably lived with it for most of my life. I was only diagnosed with it a year and half ago because none of the doctors I went to knew the problem. It is difficult but I know you can get through it. I have not had to deal with sclerotherapy but I hope everything works out for you.

I have multiple avms in my right thigh I've went through 2 glue embolisms, well, my 2nd one wasn't very successful, first they was working on a 12 centimeter avm right above my knee and hit a nerve, then I have necrosis all the way across my leg. They told me that it was too dangerous to embolise the other avms after they hit the nerve. I will eventually have to have it removed, but not until they figure out how without the danger of loseing my leg, so they efered me to Kansas university hospital to a "think group" to think of a way to embolise the avm without the huge risk of loseing my leg. My advice is find someone that has experience in avms.

I have had several embolizations. My AVM is also “too large” for glue or particle embolization which we found out the hard way. However I had “success” with alcohol embolization. The alcohol embolization refused the AVM and reduced the strain in my heart, but it also killed tissue around the AVM which required partial amputation. It was the right decision for me as it allowed me to go for a few years without ulcers. Unfortunately, the ulcers are back and further embolization will cause lower limb death. For now, I wait for better options.