My VM/AVM story

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Topic Title: My VM/AVM story
Created On: 07/23/2005 11:00 AM

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 10/22/2010 04:45 PM

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AmariT

Posts: 221

Yvonne, thank you for sharing your story. That sounds like a very difficult situation. It sounds like your daughter is a very brave woman.
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 08/10/2010 09:31 PM

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yvonne19

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Hi to all on this forum -

I just found this site and belonged to a similar forum when my daughter was small. She is now 23 years old and has a vascular malformation foot to pelvis, although it's not visable or painful above the knee.
Most of her problem is around the ankle and she had about 12 embolizations with Dr. Yakes. She did suffer nerve damage and her foot is numb in places. She had a debulking sugery with Dr. Nicholas at Little Rock Children's Hospital, a couple of embolizations at Boston Children's and we've consulted with many other Doctors over the years. She was recently removed from my health insurance because she aged out. I found this forum because I was researching school grants for disabled people.
She is a remarkable young woman and rarely complains, although I know she has many days where she finds it difficult to walk. I've been told by many doctors that pain relief procedures such as embolizations is all that can be done as her malformation runs through muscle tissue and can't be operated on. One Doctor did mention lyposuction to remove excess tissue but said it was in the very early stages of experimentation. We recently consulted with Dr. Mark Smith in NYC but Rachael is a Medicaid patient and they don't take out of state Medicaid patients - we live in Texas. I'm British and she has dual citizenship so I've even researched taking her to the UK for treatment, but not sure they have as much to offer as the US.
Anyway...this is Rachael's story....she rarely does any research on her condition, I guess because I've always done it!
I'm glad I found this forum....

Yvonne
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 07/23/2005 11:00 AM

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Waldo

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This story spans 4 years of my life and will hopefully take me into my later years (unfortunately for me). It started when I was 36 which is strange for most VM/AVM patients. They thought I had heal spurs so for 6 months I walked around in a cast. After the pain did not subside they finally did an MRI and they saw the malformation. No one in Pittsburgh would touch it they said. AVM's are rare and in a foot are even more rare they all told me. They sent me to Cleveland Clinic. I had it embolized there. It did not work. Finally on a discussion board much like this one I found a doctor by the name of Dr. Wayne Yakes. He looked at my MRI and said he can "cure" me. I scheduled the proceedure. He saw me before the proceedure and told me my AVM was small and he felt that two or three treatments would do it. The proceedure was then done. Afterwards he told my parents that one would be sufficent and I would never have to come back. The pain afterward in the first week was minimal. Then after about 2 weeks it was unbearable. It was about 3 months until I could wear a shoe again. About a year ago the pain started getting worse. I figured the AVM was back. I went to the University of Cincy-Childrens hospital AVM center. Fantastic AVM folks by the way if you are looking for a malformation center. Angiogram, MRI/MRV later they sit me down and tell me that I dont have an AVM I have a Venous malformation. Actually, I had it when Yakes did the treatment he even had it in my notes he just never told me nor bothered to explain teh difference. They told me that my malformation is sitting right on top of my posterior tibial nerve of my foot. They told me that they know that Dr. Yakes is very agressive and more than likely the pain is from nerve damage caused by alcohol exposure to that nerve. That nerve has tested on an EMG as severly damaged. My foot is showing muscle weakness relating to the nerve damage. It all makes perfect sense to me now why Dr Yakes would not return my phone calls or emails ever and he told my parents that I never had to come back for any more treatments.You know I have read on many message boards and when I was in Denver I saw many patients that Dr. Yakes helped. I know he has helped hundreds. My purpose of posting this message is to tell patients and future patients of Dr. Yakes that please make sure to ask plenty of questions. Ask about nerve damage and where your malformation is in relation to main nerves and muscles. I wish I had known to.My life now is going to be a handicap permit for my car. Topamax which is epilepsy drug that also serves as a pain killer. Lidocane patches for really bad days. A tens unit that I wear two hours at a time that converts that pain into managable sensations. So that is me. Thanks for reading my story. If you have any pain management successes please send them my way. I am always looking.
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