Well the news. Let's see, I had a followup MRI of the head on July 25th and one of the spine on July 27th. As far as my spine I have been told it is stable. I have looked at the films and 6 tumors have been pointed out to me. Apparently they were also there in January and have not changed in size. They occupy the lower thoracic and lumbar regions of the spine (lower to midback). To be honest I have not read the written report yet. I was just so ticked about the last appointment that I never opened the envelope containing the report when I left there.
The head....Dang mystery I tell you! Well.......I am assured from one doctor that it is changing from a "cystic" to "solid" phase which I never heard of before now. First the stupid thing was swelling like a hammered thumb and then it started to die from the middle but we could not tell at that point if it would continue to go through necrosis (cell death). There was a 50/50 chance that it was dying or that it was still living on the outside. At that point (I think back in March maybe) I had to take a gamble: either wait another 2-3 months in hopes that it would continue to die or have my head opened up and the "thing" extracted. If I was "opened up" there was a 50/50 chance that the surgeons would just be removing dead tissue rendering the surgery unnecessary or they would remove a tumor that was still living on the outside and growing but dead on the inside. I chose to put my faith in and God and time (I waited).
In May things were looking good. The tumor finally stopped swelling (11 months after treatment) and the tumor was nearly all black (necrosis - dead). Ahh relief! Now I was told that we were waiting for the tumor to hopefully collapse (shrink a little so it would not be pressing on the brainstem so much). When I inquired roughly how long this could take I got the ballpark figure of 6 months to a year. Before I had the treatment I had known that it takes 2 years to know if the procedure was a success but I did not however, know that it would be this difficult. I just thought life would go on the way it had since 1999 when I was diagnosed (meaning I could still do everything I enjoyed, I looked fine, and my vision was fine......in other words, we would just let the tumor do its thing while life went on as usual.) I knew I would probably be deaf but I accepted that.
My most recent MRI however showed growth of the light color (white) area into the previously black but it had not increased in size (I would be in trouble if it had!). I did not know this beforehand because I went straight from the MRI scan to meeting with the doctor. AND some nimrod did not schedule a captioner! Even though this appointment was made months in advance and it is stressed in my file that I need accommodation (I have provided a contact sheet of 5 captioners) some new person was hired that did not know any better (so I am told).
I stressed to the doctor my concern about the tumor not collapsing and what were to happen if one of the other two tumors started to grow. Everyone has been so focused on the problems of the one that we have not addressed the other two (a 2.8 cm meningioma touching the tumor that was swelling from the treatment and a 1.8 cm acoustic neuroma on the left side). Each time I had been assured that those tumors were not growing. But then I was thinking one day, "What if one of them starts to grow? There is not enough space anymore to allow for swelling. My brainstem would be compromised. Thus if that scenario happened, I would need to have surgery to remove it. There would still be swelling but more room for the swelling to happen."
So with this thought in mind, I asked the doctor in this new scenario of "from cystic to solid" phase how long it would be before the tumor collapses. It of course will never dissapate like a malignant tumor but at least it could shrink enough hopefully to allow the other tumors to be treated and for my brainstem to have more room. I was kind of awestruck when this time she told me that it could take 2-4 years if even at all! Then my mind starting churning and I was thinking how since I was diagnosed the acoustic neuroma tumors grew at a consistent rate of 2 mm every 6 months. Then for some unknown reason (stress???) the right side grew 1 cm in 6 months. Something like that could happen to the left side at any time.
It is not a very comforting thought. The past two days I have felt head pressure on the left side and surges. This really freaks me out! I am trying really hard to live low stress, exercise daily, and I have been eating well. It stinks to have something uncontrollable in your noggin.
Well the doctor here seems to think this is a good thing: the tumor changing from "cystic" to "solid". I asked her how she knew that or could tell from the MRI films and she told me "experience". She does have experience .......the best in the area for stereotactic radiation (Gamma Knife and FSR). However, the form of treatment I had (cyberknife radiosurgery) is not available in this state and I have a very rare disorder (extremely rare). I have come to discover that the tumors of people with NF2 are VERY different from other patients (acoustic neuroma....meaning 1 tumor on one side, and other brain tumors).
Therefore, I consulted on a cyberknife board with one of the doctors and he was unfamiliar with the terms to describe post treatment characteristics of the tumor (cystic to solid). I think I should send my films back down to Stanford and consult with the doctors down there and maybe a few other out of state docs familiar with cyberknife.
Here are the statements from the MRI report that are in question:
FINDING:
"The right acoustic neuroma is cystic with a solid lateral component extending into and expanding the right internal auditory canal. On today's study the solid lateral component is larger with extension of the solid component centrally and reduction of the central cyst, but the overall size and volume of the tumor is unchanged."
IMPRESSION:
There has been no change in the degree of bilateral compression of the medulla and pons; the only difference between the two studies is a reduction in the volume of the central cystic component of the right acoustic neuroma with the apparent growth and extension of the solid lateral (intracanalicular) component of the tumor centrally into the cystic cavity."
I invite your comments.
1 comment:
LOL Your guess is as good as mine! I have no idea what solid is. This was something new that I did not expect. From what I gather from what the doctor wrote down (I did not have a captioner for the head MRI appointment) it sounded as if she was saying the cyst was like a water balloon. I really did not understand it. Basically the tumor was all dark on the MRI and this new white area seemed to expand inside the tumor from the upper center.
From what I understood before, the "white" are was where the tumor was "alive" or "growing" and the "dark" area was where it was "dead". That is why I questioned her and asked how she could tell this was "solid" and not new growth. Her reply was "experience".
I just hate having to take someone's word for it. I like knowing the whole picture myself. I am a person who must understand it.
This is what sucks when you don't have a captioner either. You have no record of what you asked. So when you look back at what the doctor might have wrote you have no idea what the heck that meant or it is too vague and again there is an empty hole.
I actually did not feel well today (not in a pukey kind of way but in a head pressure kind of way). I was going to blog about it but have not gotten to it yet.
Yeah I am kind of freaked out right now to tell you the truth and want some other advice. I was looking at ALL my MRI films today and it became too much. Some are missing.
I will try to blog tonight. I do want to get a good nights rest though. I skipped the walk tonight (God where does the time go????)
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