Extremity and Other Non-Brain AVMs

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Extremity and Other Non-Brain AVMs

For those of us with AVM's outside the brain. Facial, Spinal, Lungs, Arms, Legs...wherever!

Location: medical/symptom type groups
Members: 638
Latest Activity: on Wednesday

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Comment by For the love of Burkley on April 11, 2016 at 9:00am

Thanks to all who responded to my request for stories from patients of Dr. Yakes. You have all given me many things to think about before considering transferring my 5 year old daughter's care to him. While I can see he is a gifted surgeon who has brought much relief and healing to a variety of AVMs, I also realize there is a huge commitment required if we begin a journey here, with many possible side effects. I thank you all so very much for your honesty and concern. I'm still torn and have much to consider for my daughter. Have a blessed week.

Comment by Erin H on April 6, 2016 at 4:10pm

To Berkley's Mom- My AVMs were in my neck and right torso. I had 60 ethanol embolizations with Dr.Yakes over a 5 year period in my 20's because of the size and double locations. The treatment/recovery is not easy, but I would recommend Dr. Yakes and his team. They really are top-notch. Prior to the treatments I was in a fair amount of pain daily because my back muscle was becoming corrupted by the AVM. My neck was also tremendously swollen, I looked like I had a goiter. Now, although there are some scar tissue issues in the torso,my neck is flat and the AVMs are stable for the first time in my life (I'm 38). Doctors looking at my scans now can only see small amounts of what was once a huge problem. Dr. Yakes' treatments worked well for me. We're all very different though, so I truly hope you find the right treatment match for your situation.

Comment by Jimmie D. C. on April 6, 2016 at 11:35am

To Berkley's mom, My AVM was in my spinal cord but Dr. Daniel Barrow at Emory University Hospital in Atlanta is a teaching Doctor and written the book on AVM's. I throw this name out there as a maybe. It might be of use to use. You can get appointment relatively easy.

Comment by Jimmie D. C. on April 6, 2016 at 11:32am

Comment by Jimmie D. C. on April 6, 2016 at 11:31am

Comment by Westy on April 6, 2016 at 10:46am

For the love of Burkley -

Dear for the love of Burkley,

I have been a patient of Dr. Yakes for 23 years. His techniques of treating AVMs for me have been going very well, but there are risks involved. All of my AVMs are in my right lower leg from the top of the foot to just below the knee. I have a limited range of motion in my ankle due to the 11 embolization treatments and the growth of the AVMs. There has been much pain over the years, but the embolization treatment that Dr. Yakes has performed has done much to manage the pain.

Comment by Alice (Allie) Elaine Mastello on March 5, 2016 at 8:55pm
Definitely agree on another opinion, just to be sure
Comment by LINDA GAYE MILLER on March 5, 2016 at 8:07pm

I am 53 yrs old with AVM in my left arm shoulder extending slightly in back and breast on left side. This past year I've been to many AVM specialist including Dr. Ronald Williams who has performed AVM amputation. Iwas hoping to get an amputation. All of the doctors I saw agreed an amputation of my left arm above the elbow was too dangerous because they had no way of controling the bleeding. If I were you I would hold off on the surgery until you a second opinion. I would contact Dr. Wayne Yakes(CO.)and or Ronald Williams (Tx) they would probally be willing to give you their expert opinion. They will need your son's record including MRI or MRA. You should feel confident with the surgeon because your son's life will be in their hands. I don't mean to scare you, but something this serious should have more than one doctors opinion. Good luck

Comment by LINDA GAYE MILLER on March 5, 2016 at 7:53pm

Comment by JeannieL on March 5, 2016 at 7:26pm
Hi Everyone...looking for help.. My son is scheduled for amputation of left leg at Cleveland Clinic next Thursday due to chronic non-healing ulcer top of foot. AVM is high flow, diffuse & hip to toe. Dr, W. Michael Park thinks he can successfully amputate below the knee. Does anyone know anything about Dr. Park or Cleveland Clinic that would reassure us that we are going to the right doctor? The right hospital? Any other suggestions for the "right" doctor to amputate?
 

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