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
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Comment by eileen on June 3, 2016 at 10:18am

Many people are happy with Dr. Yates. If you search his name here, some people did not like his techniques. To each his own.

My position is this: I am not in favor of the "rapid fire" sequencing of embos. I am only referring to extremities. I often had a reaction to an embo, it would show up 10 days later. That is when I might see erosion of skin; once I had necrotic tissue. Serious wound in reaction to one particular embo. It happens; no one's fault. My point is that my immune system would have been in over-drive if I was dealing with an infection from previous embo. So I preferred to take it slow; separate procedures by 6 months. BUT I had the luxury of living close to New York. Oxycodone barely covered the pain, so how I would deal with more is beyond me. Just my opinion.

Comment by Terry on May 15, 2016 at 2:28pm
Hi. My name is Terry and I did post many months ago, and thought I would try again. I have an arm port wine stain (avm) which I had lasered years ago. Every year the lasered part get darker and painfully, and spreads all over. The laser has done much damage, and I was wondering if any one can comment on it, as the laser doctor will not say anything at all. Can this blockage be reversed somehow.
Thx
Comment by Mychal on May 3, 2016 at 10:27pm

Hi Jam,

I don't have first hand experience with the physicians at Mayo Clinic in Rochester... just the reputation is very good in most areas of medicine. Are you aware their is a Mayo Clinic much closer to your home- in Arizona? I think its in or near Scottsdale. It also has an excellent reputation. Foot AVM's are tricky. They don't respond well to being poked at. My foot AVM didn't grow/bleed until I was relatively old. I have decided to not seek treatment as long as I can live with it as it is based on the experience shared by many others here on this website. The general theory I hear from Dr./specialist now is: if you start treatment, be agressive and frequent in the treatments to not allow the AVM to react, adjust, grow... I don't know how effective this strategy is since I haven't started treatments- but I understand the concept and it seems to make sense to me. I hope things get better for your daughter. Its tough navigating life with a bum wheel..

Comment by jam on May 3, 2016 at 9:37pm

My daughter has avm on her foot since birth they thought it was a birth mark but the older she got the foot started getting bigger and bigger now she's 22 and on a daily basis has to use a cane to walk. She just had another MRI and now they are sending us to the Mayo Clinic in Minnesota ..Sh3 has had 3 procedures of injection on foot and now it's bigger then ever ..does anyone know about this hospital and there drs? We will be going from Texas. So have to figure out about room close to hospital

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.

 

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