Today was the much anticipated 1 year post-GK treatment visit with Dr Ghatan, neurosurgeon. He reviewed my MRI/MRA images, and showed us the area of activity, around the avm. He was very happy with what he saw. I voiced all of my concerns of the past 12 months- the constant headaches, the 3 periods of "buzz," effect of caffeine, and my trouble articulating at times. He eriously addressed each of my concerns, and explained how none of them are problems.
So why my disappointment? While Dr Ghatan said that the images show that the treatment is working, there is only a very slight chance that the AVM is completely gone by now. Hence he will not subject me to an angiogram on the off-chance that it is gone. However, there is no way to be sure without what he calls, the "gold standard" (angiogram.)
The next step is another visit in 1 more year. At that point he will decide if I am ready for an angio.
As Dr G stressed, I should be very happy now- the treatment is working, I was able to pick up my life where I left it off and function normally, and no new hemorhages.
Why the disapointment, you may ask? I guess I was hoping for a miracle, that the treatment served its job much sooner than originally planned. I would have loved to hear that the AVM is gone...
Any idea how to deal with this? What do you have to say about this?
-Birdie
It took many years for this ugly monster to rear it's ugly head and we can't rid you of it over night! Have patients the Lord works on a time table we cannot understand, but he is with you!
Lisa,
You're 100% right. Although we usually know this logically, it is often hard to fully ingrain the concept into our every thought. I find the more I verbalize it, the more it becomes a part of me. And hearing it from others definitely works wonders. Thank you for the reminder. I just have to remember that G-d orchestrates everything, for a reason, and for our ultimate good. Thank you!
-Birdie
Hi Birdie
When I had my GK done. It didn't start to shrink until my second year into it. Every MRI and angio I had was a dissapointment to me too. But, I tried to stay positive in knowing that it was shrinking. It is a waiting game and there is nothing we can do about it.. just wait it out.
As Lisa said: It took a lot of years for it to develop. And it takes only a few more for the radiation to work. Hang in there. Your day is coming , when you won't have it any more (smiles).
Ben
Hi Birdie. My Mother has a saying for everything. In this instance…this too shall pass. Have faith that one day soon your AVM will be obliterated!