Dr. Duma came in, looked at my scans, asked questions, and let his resident do a neurological exam. He then told me that when I had Gamma Knife in February he treated both ventricle tumors as well as the tumor running down the center of my brain, and that unfortunately a healthy area of my brain had gotten a bit too much radiation as well. I asked how this happens, he said it just does, it's a known risk. I asked if it was radionecrosis, and he said he does not like that term because it means brain cells are dying, and they are not. (sigh of relief) He said the entire white area is edema (swelling) and that I should continue the steroids for about another week and the swelling "should" absolve itself within the month.
Excuse me? Did I misunderstand? Last week I was told this was a really dangerous thing on my brain and I could be facing surgery. That my vision fibers were involved. I had already heard from Dr. A Monday morning clarifying that the fibers involved were directly related to the left side of my vision, which was scary because of the weird shimmering I have been having to my left.
Dr. Duma believes the swelling in the ventricle is causing small visual seizures. He also said it is time for me to get on anti-seizure meds because I just have a lot of tumors, and any of them could cause a seizure, but specifically for my current situation it is the best course of action. He said the modern anti-seizure meds are not a problem to take and I should do fine on them. I have to take steroids for one more week, and got some Xanax to calm the heck down. While Dr. A wanted me to MRI again in 3 weeks, Dr. Duma said if my headaches don't come back then 6 months is fine. I asked if for my own mental health and well-being we can just MRI in 1 month to be sure this issue is under control and he agreed although he really didn't think it was a big deal! I reminded him he wasn't walking around with this in his brain but he pretended not to hear me, HAHA, I am teasing, I love Dr. Duma. I don't blame him or Gamma Knife for this ordeal. I blame the fact that I have NF2 and countless brain tumors, and treatment is never going to be perfect. I will still have Gamma Knife in the future when possible and will continue to avoid surgery.
I asked what daily activities could potentially trigger seizures or problems. He then dropped the bomb on the Fabulous Running Mommy, he said hard exercise is not recommended for patients in my type of situation. He basically said, don't get red in the face, but that I can listen to my body and find my balance. No more marathons? No more speed miles? No more weight lifting? I'd rather be slightly chubby and be able to see my children grow up then hurt myself trying to attain a level of fitness slightly out of my body's reach, but the idea of giving up such a large part of my active lifestyle is a bit disheartening.
So, I was sent home with some meds and a smile, and told not to worry. I trust Dr. Duma's opinion because he is a Gamma Knife doctor and sees this all the time, and he said it generally resolves. I've been so afraid all weekend, I am having a hard time believing it could be that easy. My plan is to take my meds and rest until the MRI, and then take baby steps from there. One day at a time is all any of us can do, but a lot can be accomplished in a day.