Hello, what a helpful and knowledgeable group you all are. I've been lurking for a few days, and am still thoroughly confused - not the fault of the group at all. Darn, it seems everything I come down with is chronic . I'd certainly settle for just a cold these days!
I also have chronic sinusitis, tinnitus, and some various other fun things. My hearing loss in my affected ear is almost 70% - at least. I haven't had an audiogram in several months. I also have had some swelling in my brain (apparently unrelated to the AN, or so the neurologist said) and have been on Decadron for almost 2 months to help with what were debilitating headaches. They are much better, but do pop up at times when I TRY to get some sleep, laying down can cause extra pressure is what I was told. Ugh, Decadron is the worst! Now I know why sleep deprivation is used for torture!
I have leukemia (CLL, W&W status, thank goodness). Due to this, I'm not a candidate for any kind of surgery - which I doubt I'd opt for anyway.
I have an AN a bit over 2.5cm (and apparently growing) AND a meningioma on the same side, very low, that has been deemed to be quite old. The doctors - of which I've seen so many I've lost track - all have different suggestions as to which radio to use (I truly think there is a conflict of interest in this - they suggest whatever they have access to, it seems). Except for Dr. Alksne who is presenting all sides. All the docs want to take care of both tumors at the same time, which makes sense.
Dr. Alksne at UCSD and Scripps is wonderful, a throwback to an earlier time. He's like my childhood doc when it comes to follow-up. I consulted with him and Dr. Murphy at USCD. Dr. Murphy, originally wanted to do 5 treatments of Trilogy and now doesn't feel comfortable with any less than 28 days. Not that he called me. He's all but impossible to get in touch with. I had my labs, the MRI, CT scan and the mask fitting done the same day as my meeting with him & his team.
We live over an hour away, I'm lousy at driving these days and my husband has several conflicting commitments. Of course, he agreed to support me in whatever decision I made. Ha, although driving with him for that many days might end in divorce court (just kidding). I am not up to staying in a hotel or with a close by nurse friend, as I am much more comfortable at home psychologically. I also handle all the finances (scary with my brain these days, I know) and need to be here to take care of that in addition to other stuff. My husband got laid off and has been looking for another job, plus he has to see various doctor's himself for some of his issues.
Now the original neurosurgeon, Dr. Spicer, another super doc here in Murrieta, CA affiliated with UCSD, that originally referred me to Dr. Alksne called this morning - actually his nurse - and he thinks I should go with Trilogy. Dr. Alksne called a bit ago, and thinks I should go see Dr. Hodgens at Scripps (not in my insurance network, but a moot point to me now). He went over my films with Dr. H this morning. Scripps has Gamma Knife and also CK in a different (closer) location.
I was scheduled for GK back in the fall with Dr. Hodgens (through yet another doc), but something just didn't feel right about it in my gut, so I didn't go through with it. However, I now just want to get this OVER with, big time. Preserving what little hearing I have left just isn't a major issue with me, odd, I know, but that's the least of my concerns, at least to me.
I hope this isn't an overload of info. Again, I need sleep in the worst way - at least that's my excuse and I'm sticking with it.
I'm cutting out the Decadron for the next few days to see how that goes. The trilogy doc wanted me to stay on it for the entire treatment time. But since I'm not even scheduled as of the moment, I figure a few days break might help.
Any advice or encouragement or experiences would be most welcome, as I need to decide quickly what to do. Argh!
Thanks for reading my ramblings.
Best to all,
Jennifer
