May 7, 2013
Had an MRI done on May 6th, and office appointment with Dr G on May 7th to discuss the results/findings.
I was under the impression that standard is to do an MRI after 1st yr (done,) MRI after 2nd yr (done,) and then angio after discussing results with dr. Angio is the gold standard to definitively say that the avm is gone. At my 2 yr MRI and office apt with my neurosurgeon, he denied ever saying that they do the angio at the 2 yr mark. Here I am, literally counting down the days for the past 2 yrs until this 2-yr mark, and now he says that he doesn't see anything in the MRI, but standard is to do the angio after 3 yrs. I was so disappointed and emotional, that I could barely express my feelings and concerns verbally!
I stil have almost daily headaches. tylenol/motrin/advil usually take the edge off, but not always.Also feel dizzy/fuzzy/spaced-out several times per month. Those episodes really scare me.
I asked the dr about the headaches. He offered to put me on prescription meds to address them, but I chose to avoid them as long as possible. After collecting myself, I explained to the dr that I really need this definitive angio to put my mind at ease. He agreed to discuss my case with the team, and would call me back with an update.
I spoke with him a few days later. He decided that he would be ok with doing an angio now, but I should know that it may still find residual avm. In which case this is completely normal, and he would wait anohter yr (until the 3-yr mark) to take another angio. If still residual avm at that point, we would wait another yr (4-yr mark). So basically, he's saying that 3 years is therapeutic time, 4 years is how long the gamma radiation continues to have its effect.
His hesitation with an angio now, is that every angio is a risk, and better not to subject me to that risk. I asked him if he can tell me his recommendation, medically only. His reply? impossible to look at any case as just an avm in a head. He has to take into account the whole picture, which includes my personal feelings, and how each situation affects me.
After discussing with my parents, I decided against performing an angio now. I told dr G about my decision, with reserve that I may decide at some point this year before the 3 yr mark to schedule the angio, based on my feelings and concerns. He agrees.
I asked him at that point if I should expect my daily headaches to be a part of my life from now on. He replied that the headaches are probably due to the general trauma and changes in my brain over the past few yrs of treatments. He expects them to gradually diappear over time.
Birdie, I’m so sorry to hear this journey hasn’t gone as expected. You will be in my prayers, as I hope your headaches ease off and go away. They are scary when they are continuous. It sounds like you have a compassionate Dr, thank God for that! Good luck and try to relax, I know stress does bit help a headache and runs u down physically. Raspberry extract, smell this when you get dizzy, get it in baking section. It’s Cheap and gets focus/clarity back. I am allergic to alot of fragrances, dyes, medicines. Pure raspberry extract really works for me 
good luck and God bless you!
I had my first follow up yesterday from my first radiation treatment.I have already had 2 embolizations one month apart. One in October 2012 and the 2nd one in November 2012. It reduced the size by 50% by doing the 2. My doctor said eveything looked good. No real changes. I only had the radiation done 2/11/13 so no big surprise. I am to have the next one in August of this year then follow up in 3 months after that. I hate the waiting game too.I am so ready for this thing to be out of my head too. My doctor has put me on Neurontin which helps with headaches. It does have some side effects that you will have to adjust to. But compared to the terrible headache that I had a few weeks ago that sent me to the hospital I guess it is worth it.
Thank you for keeping all those on the site up to date about your progress Birdie :-) God bless you and I wish you the absolute beth and much growth in your life. :-)
I really appreciate everyone’s feedback- while my parents are the best support team, it’s always good to hear from friends like you all who understand where I’m coming from, and won’t get too overly nervous about my complaints (as my parents do. Thank you all!!!