Hello I am new to this site. Trying to find answers for my husband. He is 33yrs old. He was diagnosed in 2013 with a rare AVM in his Corpus Callosum. He hemorrhaged 3 times before knowing about his AVM. Doctors treated him for migraines. He had a big bleed in 2013 that put him in the hospital for almost 3weeks. His doctor is the head of Neurosurgery at a hospital in Pittsburgh. He did not want to do surgery to remove it because of where it is located. They did embolization during his stay and then radiation in July of 2014. He had a rebleed In January af 2015. And then again this past December. This last bleed caused some complications, the blood was laying in his ventricles which was causing hydrocephalus. The doctors had to place a shunt to drain the spinal fluid. There is a new doctor to the practice that had mentioned doing surgery to remove it. His doctor is still reserved and is taking about just doing more embolization. We have an appointment this Friday to sit with both of them to talk about his options. He is a true miracle! He is still a very healthy very with it. After that many bleeds and no permanent damage is just amazing. He is a true fighter. We have 3 small children. So right there is his drive to keep fighting. He is a very strong and physical person. So as long as he has the AVM he is restricted. And just walking around like a ticking time bomb daily is stressful enough. He wants to have the surgery to remove it. Being told if it’s removed, He can have his life back sounds great! So many risks with having the surgery though. Does anyone have any experience with having surgery to remove an AVM from the same spot or any advice it would be greatly appreciated. Thank you in advance
Jess
Welcome! I’m sorry it has taken us so long to see your post. I’ve moved it to your own discussion thread, which I hope more people will see.
Richard
Hi Jess:
Welcome to our world! First, take a deep breath! During the course of your husband’s AVM journey, you will take a lot of deep breaths! This thing can, will and has totally over-whelmed you, as it did all of us when first diagnosed. My AVM in my cerebellum, was found in 2014 after I passed out, went into a coma, hospitalized for a month, etc., etc., then finally having Gamma Knife Radiation to get rid of the monster. Although my AVM was in a different location, the fear is the same. Depend on the doctors for medical advice, and you can depend on your AVM family for support and encouragement. The most important tools at my disposal then and now are: Prayer and Patience! Feel free to use them… Wishing you and your husband all the best on the journey you are taking.
Sharon D.
Jess
How did you get on on 27th?
Richard
Hello there and sorry for not responding for so long. So at his last doctors appointment we only got to meet with one of the neurosurgeons Which was a big let down. We thought we would meet with both of his doctors to talk about doing surgery. The doctor we did talk to showed us a Mri image of the AVM from January 2015 and then one from this past December. The radiation and embolization seem to have shurnk the AVM, So that was a bit of good news. His doctor said its unlikely he will bleed again. But I feel like that is not a statement that he can be 100% on. Seeing that he has bleed so many times already. We have to meet with the radiologist again to see if he can do more radiation.
Thank you for support Sharon. I believe that prayer is the only thing that is getting us by right now. I’m sorry to hear your struggle also. How long again did you have the gamma knife radiation?
It’s not easy coordinating with surgeons, as the stereotype about many surgeons is that they like to cut or intervene, and are not to particular about being in clinic or office.You might have to set up appointments with each of them individually. Also, you can request a copy of the clinic notes from each visit. For professional and insurance purposes they have to put their assessment/evaluation in writing. You as patient/authorized family member are entitled to these records.
I was diagnosed in Nov., 2014. It took almost 6 months for the swelling to go down and for the brain to heal. After that, I had Gamma Knife Radiation in late April, 2015. Fifteen months later in Sept., 2016, it was determined that the AVM was gone! However, I will be re-tested in June, 2017 to make sure that there are no little pieces of the AVM floating around in my brain. It took about 17 months from start to finish to be declared AVM free.
Please don’t mis-understand me. I still have some deficiencies that may or may not ever go away! I have balance issues. I tire easily. My concentration is not as focused as it used to be and a few other things. What I do have is a willingness to keep moving forward at my own speed and gratitude that I’m still alive. One thing that put everything in prospective for me, is the “Letter From Your Brain”, which can be found on the AVM website. Stay positive and work with your Brain to be the best you can be. Wishing you the best of luck. Feel free to contact me at any time and I’ll there to support and encourage you.
Sharon D.