venous malformation

My 3yr old granddaughter had schelotherapy for a venous malformation in her leg. She had a reaction to the alcohol injection causing compartment syndrome resulting in a fasciotomy(sp) resulting in nerve damage to her foot. Has anyone had this happen? What about muscle damage after surgery to remove a vm in the calf of the leg? That's next and we are told that could happen, too. She had also had bleeding in her ballder after the surgery, no cause determined other than the alcohol. Why is this used if it causes so much damage?

Hi, I want to join this discussion because i have the diagnose "venous malformation". I have it on one of my leg, from the foot and all the way up. I dont know much about venous maliformation, so if anyone can give me some information about the "thing" I would be happy. My own experiences is that the treat is to weare a kompression-stocking. All surguries are dangerous because the are bleeading too much. If you have a "venous malformation" you are welcome to contact me.

My name is Chris and I read your letter in a forum for persons with Venous Malformations. I am 29 years old and I have Vascular Malformations throughout my entire left leg. I have had a total of 5 surgeries on the leg. My first was at 8 years old, 14, 18 and twice when I was 24. The first was basically for cosmetic reasons due to my leg being a bluish green color in some areas. Later in life it began to affect me physically. Each surgery became more invasive than the next. The last two when I was 24 were very extensive. The surgeons told me they took half of my leg and that’s no exaggeration. Before, my leg was very large due to the masses of veins, and afterward it was smaller than my normal leg. After that surgery some of the skin died and a month later I had to be reopened and have that portion removed. I was off my leg for 2 months and needed therapy to learn how to walk again. The vascular surgeon told me that we might be able to do preventative care with Embolization but it was new and sounded kinda risky. Plus I was hoping that the last surgery had corrected my problem. Now 5 years later the venous masses have spread. It used to be located mostly in the lower thigh down to the lower calf. Now I have masses in the bottom of my foot (feels like walking on a marble sometimes) all the way up to my hip. I went to several vascular surgeons and was refered to others. Finally I found my current surgeon and talked with him about treatment. He said that he rarely cuts out the veins ( because it spreads) and prefers to use this embolization therapy through a catheter in your artery. Apparently this procedure has come a long way in the past 5 years. I had 2 MRI’s done and last week had another angiogram to get a good picture of the problem. Before the angiogram he said that he thought this would be AV Malformation an that I would need about 4 embolization treatments to correct the problem. (sounds a lot better than surgery!) I went to a follow up visit this morning to find out what the results were. It turns out that I do have 2 small AVM sites but that 95% of my problem is Venous Malformation and he couldn’t do catheter embolization on that type of malformation. He said that the embolization would need to be done directly into the veins through the skin. He has never done this and said he will not. He didn’t have a local surgeon to refer me to. He said that since this is a something he never see’s that his recommendation would be to go to the surgeon who deals with this the most in the USA. He recommended: Wayne Yakes 1800 Green Oaks Dr. Littleton, CO 80121-1537 303-788-4280 wayne.yakes@swedmc.com

I have VM on left face (excluding forhead) and was always diagnosed as venous cavernous hemangioma until 3 yrs ago changed to venous malformation as it is continuing to spread behind eye , sinus, close to inner ear. I have read other emails on geocites forum of cases in the leg also just continuing to spread into torso & spine after treatments. I have been told by doctors in Toronto and Boston that they have no way of determining which vessels in your body are prone to expanding therefore they connot determine whether they can get all of it or whether it will just spread to new areas after treatment. I had many surgeries throughout childhood and 2 major embolization treatments with Dr. Berenstien in NYU in my 20's. Since then , my legion has increased particularly with my second preganacy ( My daughter) and with age ( I would say I started having more symptoms at 40 of pain and an infection which lead to the discovery that it had spread ) I only know of a John Battles who created the Vascular Anomalities web site previosly mentioned that has the same VM in his head. He also has continued spreading after treatments. I do not mean to discourage anyone , but I would say the case is not clear as to the long term benifits of treatments. Another well known doctor in the US is Dr.Waner ( he has a web site) in Little Rock, Arkassas. I saw him at a clinic at Mass Gen in Boston and he indicated he could treat me. However I am currently balancing this with recommendiations from Dr. Burrows of Harvard and her associates that via email have indicated they do not necessarily agree with Dr. Waners agressive approach .....so you see you must get as informed as possible before making decisions... I feel I have not found who is collecting the most data of adult patients after treatment. However bad my condition may be I am aware it can be much worse by spreading to new areas....treatment in itself can be like trauma to the legion. This is NOT the case for hemaniomas aparently so it is important to make the distinction. I will check the Dr. Yakes sight and thank you for sharing your case. Anyone with VM similar to cavernous venous hemangioma I would appreciate hearing from as I continue research, esp adult females on the face. Thank you everyone and good luck to all seeking treatments.

I have recently seen Dr. Terrberge at Toronto Western Hospital in Torontoand he has informed me that they are looking into a new treatment which is supposed to have a much higher rate of success than injecting alcohol....they inject a anti cancer drug.Dr. Terrgberge is affiliated with Dr. Berenstein in NY and Dr. Patricaia Burrows in Boston.

Hi, I also have haemangioma in my left thigh. Embolization done so far doesnot seem to help me at all instead it is getting worse. My knee is slowly getting affected, My joint mobility is decreasing. I am getting really discouraged. Has any one been cured of Heamangioma or AVM? I have also been refered to Dr Yakes. Just wanted to hear some positive results of the treatment. I am having hard time living with the pain everyday and I am confused what to do, forget about the treatment ie embolization or go for it. It is not helping me much. Surgery is risky, I may be more disabled because of that. I am very very discouraged with my situation and hope to hear from you all. Thanks,

I have a venous malformation in my right foot. I had sclerotherapy done twice. It offered relief from the horrific pain I used to experience at night, however.....Due to excessive edema that developed status post injections, I've developed neuropathy in my foot which led to hammer toes formation. Now, I am in pain from that. I'm contemplating having corrective surgery for that. However, my concern that the malformation might grow with time again, and I'll require more injections in the future and then I'll be back to square one. Wondering if anyone has a similar situation and how they dealt with it.

I have a daughter who in July was finally diagnosed properly with venous malformation. It covers her leg from the knee down around the foot. In July a surgery was performed at Boston Childrens, they performed embolization and alcohol injections, over a seven hour surgery. As the months have gone by she was doing better, but within 4 months after the surgery she has developed a stinging, numb feeling and she has noticed new and more increased pain in the ankle and around the foot. Does anyone know if this problem will continue too worsen as she gets older or if more surgeries will eventually repair any or all problems? Since we live in Illinois does anyone know of a good specialist in this field, a little closer to this area. Boston was wonderful, but the travel was difficult on her.

I HIGHLY recommend Dr Wayne Yakes in Denver, Colorado. He is great and so is the rest of his staff. I just returned from my second treatment there for a vascular malformation in my left foot. These diseases should only be treated by extremely experienced Physicians. In my 27 years of life Dr Yakes has been the only Dr who knew what he was talking about and how to treat my vascular anomaly. I went to a highly esteemed Dr at the University of Washington, before Dr Yakes and the experience was a nightmare. I say, call Dr Yakes and get to him before you have to deal with lesser physicians who are just looking for a patient to experiment on. Take it from me and save yourself from the suffering. Call Dr Yakes! :-)

Hi, I have vascular malformation in my left foot and had an ethanol embolization done by Dr. Yakes a few years ago. I had terrible (I mean terrible) stinging, numbness after the procedure. It was so bad that I was put on Neurotin ( a very high dose) for a few months which helped. This was prescribed by a podiatrist that consulted w/Dr. Yakes. Typically, the drug I believe is for epilepsy, but does well for nerve involvement. Then, I needed a surgery ( woman issues) and spoke to the head of the pain clinic at Lake Forest Hospital about my surgery and I mentioned my foot. He said that an epidural block after my surgery, if continued for two days, could solve my problem. It did! I still have numbness in some areas and a bit of tingling, but it isn't painful anymore. So, you might consult a pain clinic at a major hospital. They might be able to help. Good luck! NB