My AVM/VM and Dr. Yakes
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 procedure. He saw me before the procedure and told me my AVM was small and he felt that two or three treatments would do it. The procedure was then done. Afterwards he told my parents that one would be sufficient 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 don't 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 the 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 aggressive 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 severely 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.
The reason I am posting this on this board is if you are considering using Dr. Yakes please make sure you ask him where your main nerves and muscles are located in relation to your malformation. The alcohol can and WILL cause permanent nerve damage and I really do not think he makes that clear to people. Dr. Yakes has helped hundreds of people I saw that when I was out there and when I read these message boards so I know that he is a good doctor. I think he just got a little to aggressive in my case and attempted something that maybe should not have been done.
My life now is going to be a handicap permit for my car. Topamax that is epilepsy drug that also serves as a painkiller. Lidocane patches for really bad days. A tens unit that I wear two hours at a time that converts that pain into manageable 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.
If you have any other questions, LMK