HollyAlonzo – Never Giving Up Hope

I know my body extremely well. When something is wrong, or just a little off, I know about it.

I told several doctors in Asheville that things were getting worse and I needed an MRI of the brain.

Every doctor I went to just passed me off to the next doctor, or were “toying” with me, basically telling me that I didn’t know what I was talking about.

With NF2 an MRI is needed every 6 months or 12 months if things have been stable.

My last MRI of the brain was March of 2008. I really needed another one to see where things were at with my tumors. The tumor on my left hearing and balance nerve was already quite large. I needed to keep a close eye on this one in particular.

I tried several doctors in North Carolina. I even went to a couple of neurologists to get them to order one, but no one would.

I got tired of none of the doctors listening to me, and my health had gotten much worse. That is the main reason I came back home.

Today I had an MRI and an appointment with a neurosurgeon.

He was a good doctor and I liked him lot. He took his time with me with Edward and my Mom having to sign. They kept switching back and fourth when I didn’t understand one of them.

He said that the left side tumor is much bigger. “How big is that?” He laughed and told me “Big.” Then he measured again to make sure and told me.

My left acoustic neuroma/vestibular schwannoma was 2.8CM 2 years ago. Now it is 4CM and is the reason for the balance problems, and possibly the numbness in my fingers.

I also have had difficulty swallowing at times. I want to swallow, but I can not make the throat do it when I want. This is another sign to watch for with the tumor pressing on the brainstem.

The neurosurgeon wants me to have surgery now to remove the tumor. I told him that I was going to have it done at House Ear so that they could place an ABI.

He told me to have that surgery pretty soon and he would meet with me in a few months to see how I am doing, and see if there is anything else that needs to be tended to.

I’ve e-mailed Dr. Friedman and his nurse. Now I have to wait for a response. If they want all of the money up front, I don’t know what I will do because I don’t have it all. If they let me make payments then my parents could help me along with fundraising support.

I don’t know how to make it more clear, I need your support and your donation. I would not be asking if it wasn’t necessary. This is my only way of ever being able to hear again, even the smallest noise will be so important. I won’t be able to do this without your help.