HollyAlonzo – Never Giving Up Hope

It’s very odd going to the doctor and not really having an idea what is going on. Lost in a world full of people.

Yesterday I went to see the spine neurosurgeon I wrote about in a previous post. He was a very nice man, from what I could tell. My husband did most talking with him and got more of an idea.

The doctor looked at my MRI again and said that there were two tumors he needs to watch very closely. There is a schwannoma and a menegioma at C3 and C4 that he is concerned about.

He asked what problems I had been having and I told him about the slight weakness in my right arm and hand, and also about my fingers getting less sensitive. He asked if I had any pain, and I told him that I had pain off and on in my right shoulder. I went to a family doctor in Arkansas, and he said he thought it was bursitis. Well, C3-C4 can cause bursitis. So it looks like I’ve been dealing with this pain in my shoulder for over a year now not knowing why, and the answer was right there.

The weakness in my arm isn’t really noticeable to other people. I notice it myself, and have to concentrate harder to make it do what I want, but I’m not sure if the weakness that the doctor sees causing him concern.

I asked him if surgery would cause any more damage. I do not want to lose the feeling in my hands and fingers. They are all I have left to read sign language and braille. He said that if anything, my fingers would get better. Surgery to remove these tumors would not do any damage to my quality of life. But he does not see a point in doing surgery just yet until he has to.

I’m a little confused as to why we are waiting and watching. If doing the surgery will not cause me harm, then let’s go right now. I really don’t know why we are waiting to let things get bigger and cause more “symptoms” before taking them out.

I asked him about radiation, and he said that it’s not a choice because they are too close to the spine. I’m confused, I thought people had cyber knife done on their spine often?

For now, we wait. I go back in July. If he sees things getting worse then he’ll do surgery. If not, then we’ll continue to wait and watch.

I had Edward signing to me to let me know what the doctor was saying. I couldn’t understand a single word from anyone. When there was something long to tell me, I wood have Edward type it on the pacmate and I would just read it on the braille display. Tedious, but the doctor was patient with us.

I did not completely understand what was going on and everything the doctor said. But Edward filled me in afterwards and that is how I know all of this information to write in this blog. I plan to call the doctor’s office today and try to get his email address so that I can talk to him myself. We shall ssee if I have any luck.

So what now? The wait and watch game can take several years. If there is a problem, I like it taken care of sooner rather than later.