HollyAlonzo – Never Giving Up Hope

Hey hey! Spring is here and it’s making everyone sick. Plus there has been this horrible bug going around and it seems like people are just passing it back and fourth. It goes from being beautiful one day to cold and rainy the next.

Donations are $6,702.09. Yay! Yvonne sent me some more shirts so I will be getting some smalls and medium.

I got the MRI that Dr. Friedman wanted. I sent the films to him and he called me Thursday. I couldn’t find the phoen and called him back but he was goign out of town. So I called him today and he was very busy but still made time to answer my questions. He said that the left schwannoma is a little over 3cm now. I said, “How much of a little are we talking?” He said, “not much.” So I said, “like 3.1?” he said, “hmmm…yeah 3.1ish but not quite” Also h e told me that the right schwannoma is still stable. Then I asked him if different MRI machines could give a slightly different reading. Like I usually get my MRI done in Little Rock. This one I had done here in Piggott. He said that yes it can be off by about 1mm. So September was 2.9cm and this one is 3.1ish cm and if the machine could have been off by a mm then it didn’t grow very much at all. that is great news. But the hearing is still slowly dropping. Also the tinnitus is sooooo loud! I wish there was a way to make it stop. Sometimes it is so loud that it is hard to concentrate on things. I also asked him about the ABI. My first brain surgery went in the back on my head on the right. So I have a scar there. My friend just had surgery yesterday at TN and he was going to get the ABI as well. But they told him they couldn’t do it because he had too much scar tissue back there. So I was worried that maybe I wouldn’t be able to get oen. So I asked Dr. Friedman if that scar would mess up anything and he said absolutely not. he can very easily put an ABI in. So that makes me feel better.

Back in October I sent my MRI to a doctor in Rhode Island. He uses Gamma Knife and is very good. I contacted him because I wasn’t sure I wanted surgery and I was going to try to use radiation to preserve hearing. Dr. Noren finally called me back! lol 6 months later? I guess he saw on the MRI that my optic nerve is messed up so right off he asked me how my vision is. I told him totally blind. Then he said that he has radiated NF2 people before with success, but in my circumstance he would not want to radiate the good ear. Because the chance is small that I would lose hearing, but it’s still a chance and he doesn’t want to take it. He said surgery would garantee hearing loss, so if I was goign to do anything at all with the leftt if it came time to have to do something, then GK would be the way to go. Also the minigiomas in my brain can be radiated if they ever need to be taken care of.

He was very interested about my luck with doctors, or lack there of. I’ve never been properly educated about NF2. He has no idea how I could have went blind from the first brain surgery. He said the second one he can understand because that one damaged the optic nerve.

So he wanted to know where I had this done and goign to get some old records and do some checking. I hope he digs something good up.. lol. I’d love to know!

So that’s all for now and I will be back later. Isaiah is demanding mommy!