I finally got a call from my doctor about the MRI I had 11
days ago. I am always amazed at the
answer, because the symptoms are always worsening. But he said there was “no major” changes and
nothing in the brain in the way of tumors.
But a friend of mine whose daughter has NF and a lot of the same issues I have, told me her daughter's pain doctor told her that even though the tumors might not grow, when they sit on the nerve sheath for years on end they eat away at the sheath itself, thus causing increased pain when the tumors touch the nerve. Good to know!
It was frustrating because I know I wasn’t in the MRI
anywhere near as long as they said I would be so it makes me wonder. I questioned him about it, asking if he was
sure they got it all. He was. He also said the ones in my leg may be
operable, and a doctor at another clinic (but still with the UWMC) will be
calling me to set up an appointment. Of
course, he is not sure whether or not removing the ones that are hurting so bad
will actually help with the pain. My
other leg hurts too, but I am not sure they imaged that.
I am exhausted, depressed and
still grieving, of course. And I’m not
sure if the news makes me feel better or worse.
I just watched this movie on the
life of Stephen Hawking. Talk about your
fighters. It was amazing and made me
feel petty and small about my constant complaints regarding my challenges. I’m in constant pain, it’s true. Little helps relieve it, that’s true
too. But I can walk and talk….though
driving is coming to an end, I think.
I’m not in a wheelchair, I don’t need nursing care and I can type on my
computer. Still, it’s hard not to
gripe. Something I need to work on.
Do I want to put myself through a
surgery that may or may not help with the pain?
I guess I need to talk with the surgeon first. I’m scared.
I’m always scared. And living in
fear of what might happen is no way
to live.
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