Hi Tracy -
My name is Carrie, 32 year old female with a pelvic AVM. At the age of 16, I noticed a large lump growing on my left buttock around the butt bone region and have experience major pain in the hip area, sometimes unable to walk. When I was diagnosed, Dr. Alan Motsumoto at University of Virginia attempted an alcohol embolization in 1998, but the procedure failed and caused extreme pain to the siatic nerve. Dr. Burrows looked at the MRI and refused to treat the AVM. Since then, Yale Medical Center has been my hospital of choice. In 2000, Dr. Robert White and Dr. John Persing performed a nine hour surgery to remove 1/3 of the AVM in the left buttock. For seven years the pain has been minimal. I visited Dr. Pollak at Yale last week for a consult and he has determined that the best treatment is a detergent foam embolization which is 90 percent effective verses the alcohol embolization at 70 percent. There is a team of experts at Yale who specialize in AVMs and who have thier own department for this condition. Dr. Pollak also stated that if they were to remove any more of the AVM located in the muscle of the buttock it would leave me disabled.
At one time, I had considered Dr. Yakes in Colorado. The doctors at Yale feel that the alcohol embolization is not my best option of treatment due to the high flow. I know that it was the most extreme pain I have ever been in.
The doctors specifically stated that having children will increase the growth of the AVM and the possibility of a massive hemmorage. I have been on Depo Provera for eight years. Depo also aids in the amount of hormones in the body to prevent growth.
I understand exactly what you are going through. The pelvic AVM is rare and is not cureable. The only options we have are to manage it. If you are having any pain, I have found that Motrin 800 decrease the swelling and relieve most of my siatic nerve pain. My experience with the doctors with the AVM program at Yale is remarkable. I highly recommend them....no other doctors were willing to perform treatment due to the area of the AVM.
Feel free to contact me at any time, either by phone at 302-614-6070 or by e-mail at firstname.lastname@example.org
. Best of luck to you and I hope you find the right doctor to treat the AVM.