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Topic Title: venous malformation
Created On: 02/22/2001 01:15 PM
 
 03/29/2010 04:51 PM

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madge

[p]I cant believe I have actually found this forum and after much trial and error have managed to log on. I live in Yorkshire, England, United Kingdom and there is nothing available like this forumon the UK net,. I am in my late forties and extremely relieved to find that I am not on my own with my condition. I was born with a birthmark on my torso that basically gave me no problems until my late teens. I started with a small lump which was removed as a precaution but turned out to be a blood clot. It wasnt until at 34 when I decided to loose a little weight and took part in regular exercize classes that I seem to have aggravated it and the swelling and discomfort began. The first scelorathapy I had was relatvely pain free after 2 weeks and I did see a slight reduction in size, following theproceedure the area just got worse and worse. I had my second treatment 2 years ago this month and it was horrendous. I was off work for 6 weeks in agony and looked 6 months pregnant. My surgeon told me that dome of the veins channels were half a centimetre wide, so basically its like having pipes running through my stomach. 2 years on the malformation has spread and I have small clots under my breast and down into my groin. I wish there was some other treatment available but after reading the forum it seems there is not. I would be very reluctant to have further treatment as the after pain and recovery period does not justify the results. I have lost a lot of confidence as I struggle to get clothing that diguises the area and any vascular exersize just makes it flare up. My advise would be try not to put any strain on the area and until any new treatment besomes available, leave well alone. After reading the posts on this forum it seems that there are few positive outcomes for this condition and anyone who can relay any positive results please post ithem. I for one could do with some inspiration.[/p]
 11/24/2007 09:40 AM

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tinnochka

I have venous malformation of my right foot. I started developing terrible pain about 6-7 years ago. I had undergone 2 sclerotherapy sessions with Dr. Rosen in New York City (NYU). After each injection I developed tremendous swelling in my foot and then neuropathy set in. It was so bad that I couldn't even drive a car. The pain felt as though somebody was sticking a knife in my foot and twisting it. I took Neurontin for a short while, and eventually the pain got better. However, because of this nerve damage, I developed hammer toes and was in pain again. I had corrective surgery where tendons in my toes were cut and metal pins were inserted to fuse the joints. That was 4 years ago and my toes are becoming deformed again. I'm contemplating having another toe surgery but if it's only temporary, what's the point. I can't keep having surgery every few years. Any advice?
 09/13/2007 09:21 AM

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mislis

Chris, Thanks for sharing. I am a mother with a 10yr old daughter who's story is alot similar to yours. She is has had 2 Schlerotherapies, 1 muscle lengthing and now the Doctors are considering surgery. I am terrified with the fact of a surgery being done. I have been trying to educate myself on the condition. AV MALFORMATION and I don't see it as being something that has a good outcome especially with a surgery. My daughter's AV is in the bend of her left leg. I sure hope that you will contact me and share the details. At least help to educate me more. I know this hasn't been an easy thing to go thru or talk about. I just need help. More than what the Doctors are willing to do. I am desperate. I am scheduled to be at the Cleveland Clinic with her on the 20th of this month. Looking to hear from you soon. God Bless you.





Worried mom.
 04/16/2005 03:34 PM

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SofiaRose

I am a 44 year old female with a left facial VM and consider myself very fortunate to have found Dr.Yakes and his great staff,and even though I have travel from Phoenix to see them I can say it's been worth every minute . I have had 2 treatments at the Swedish Medical Center and after the last one I returned to work in just 3 days.Even with the swelling,bruising and pain (like a blow torch in my cheek)that I experienced I feel confident in my recovery and see improvment daily.Dr. Yakes feels that my condition is now manageable and that there is no need for a complicated surgery.I have my face, my smile and my life back .Saying "Thank You" just doesn't seem to be enough. He is a great Doctor and most of all ....an Angel to so many. I wish you all the best and keep the faith. S Rose
 04/16/2005 03:32 PM

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SofiaRose

I am a 44 year old female with a left facial VM and consider myself very fortunate to have found Dr.Yakes and his great staff,and even though I have travel from Phoenix to see themi can say it's been worth every minute . I have had 2 treatments at the Swedish Medical Center and after the last one I returned to work in just 3 days.Even with the swelling,bruising and pain (like a blow torch in my cheek)that I experienced I feel confident in my recovery and see improvment daily.Dr. Yakes feels that my condition is now manageable and that there is no need for a complicated surgery.I have my face, my smile and my life back .Saying "Thank You" just doesn't seem to be enough. He is a great Doctor and most of all ....an Angel to so many. I wish you all the best and keep the faith. S Rose
 11/28/2004 11:56 PM

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nanbrank

Dr. Yakes told me that birth control pills are directly related to the AVM's growing. Both times in my life when I went on them, I had a rapid growth of the problem. They were pretty certain about that.
 11/27/2004 11:52 PM

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Eurowrite

I have often wondered whether or not birth control pills would trigger growth in the malformation. I have stayed away from them because of that. My Nurse Practioner has recommended them to me to settle cramping problems and I have declined the prescription out of fear. My foot is not yet healed completely and I wouldn't want to make it grow. That would be a nightmare. Likewise, I wish that I could have had treatment before the on-set of puberty in order to avoid the rapid growth that my VM went through at that time. It was much smaller before estrogen caused it to grow. I have had similar experiences with other doctors, and luckily most of them would NOT touch it. I went to one Dr at The University of Washington in Seattle, by the name of Dr Andrews, and he attempted the sclerotherapy procedure without giving me any anesthesia. I have never in my life felt pain so horrible. I almost passed out and was in agony for a month afterwards. Excuse the term, but I felt crippled. Finally, after that, the Dr admitted that my VM was out of his range of experience and recommended I go to Dr Yakes. I felt as though I was nothing more than a guinea pig for Dr Andrews. That is the danger for some VM/AVM patients who try Dr's other than Yakes. Yakes is worth every cent and every minute one puts into the trip to Denver.
 11/27/2004 10:24 PM

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nanbrank

The pain your daughter is experiencing is very real and obviously needs attention. Yes, my veins were all popped out as well. I could barely walk. I would contact Dr. Yakes. If he cannot treat it, he will tell you. Not every patient is a candidate for his procedure. However, I would NOT have surgery and Dr. Yakes can explain all of this to you. Look at contacting him as doing your research for another opinion. When Dr. Yakes and his partner treated my foot, they were very aggressive. Each patient is unique and they determine just how much of the malformation can be treated, so each patient is different. I'm sure with a child, they would be much more conservative. NO doctors in Chicago, at the very top hospitals, would touch my foot. They all knew Dr. Yakes. There is even an interventional radiologist at Northwestern that recommended him and would not do it himself. I would definitely give him a call. Also, I had a surgery in my early twenties. The surgery does not shut it down. During each hormonal phase of my life mine grew. I was put on birth control pills at 48 for menstral stuff and within 3 months my foot was raging out of control.
 11/27/2004 06:05 PM

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Eurowrite

Your story, although unique in and of itself, is very familiar ro me. I have a Venous Malformation in my left foot that I only began treating at Dr Yakes' practice in March of 2004 (I am 27). I am more than half done with my treatments (so far I have done five) and although there is pain and discomfort after most treatments, the end result is more than worth it. In addition, if vascular malformations are left untreated they can grow spontaneously due to hormonal fluctuations. For example: puberty, pregnancy, and menopause can cause the VM to grow rapidly and, depending on the size of it, it can complicate other organs or tax the heart. I highly recommend seeing Dr Yakes for sclerotherapy treatments. The injections are far more successful than the butchering that is done under many doctors knives. These kinds of lesions should never be surgically removed. They need to be killed through very careful and well planned injections of ethyl alcohol. If you need information, contact Yakes office in Denver. The staff there are amazing! I never thought that there would be hope for me... heck, I didn't even know other people existed out there with the same problem! Now I am being successfully treated and meeting other people like myself. I am open to discussion anytime. Please feel free to email me.
 11/27/2004 04:22 PM

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pauhia

Mahalo, (Thank you) Nancy for returning my e-mail My 10 yr. old daughter has angiodysplasia in her left foot that didn't start to present till the age of 2 yrs. At first I thought she fractured her foot because of the swelling over the top of her foot and to make a very long story of very frustrating and uneventful experiences with numerous doctors misdiagnosing her she finally was dx. in may of 2001. She has chronic pain that goes in and out of extreme acute pain; (now the pain seems to be more nerve involved) and no herbal, topical, over the counter or prescription remedy really helps. There are times when her pain is so bad she can't walk or sleep. When the veins get really distended her foot gets visibly contorted. Does any of this sound like anything you've experienced ? We just recently heard about Dr. Yakes by a fluke . He sounds great but I'm so afraid of causing her more pain and trouble, specially since the last Dr. I dropped said he could CUT it out in an hour w/ no complications and had done so many A.V.M surgeries w/ high success rates, but had no proof or patent refs. I'm happy to hear Dr. Yakes helped your pain and I can't tell you how nice it is to finally be able to talk to other people who have had similar experiences after having no resources for 7 yrs. Tyna and Hokulea

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