Reading the journey of others within this forum was extremely helpful as I was navigating the dark, deep waters of Acoustic Neuoma World. I am not generally a sharer, but feel it is so important to document for others who may find themselves in my shoes.
But before I do, whoever you are, you WILL be ok. Things seem so bleak and scary at first. You don't know which way to turn. But in the end, you will be ok.
The image of trying to get a difficult horse on a trailer always comes to mind. The horse is scared, he/she wants to run away, but we are behind them urging them forward. The horse tries to duck to the side, but again, we are there. The horse MUST get on the trailer. Sometimes getting them on takes time, but eventually, they settle and go. Until this very moment, I felt like that sad, scared, desperate horse. With my size AN, watch and wait was not a long term solution. I had to get on the surgery trailer or the radiation trailer. I wanted nothing to do with any of it. I just wanted to run screaming.
But I can say with certainty that once you find the treatment that both your heart and head are ok with, move forward, and you will settle a bit. Just like horses do. Before long, most of them are munching hay and calm as we drive along.
Anyway, here goes:
Symptoms that led to diagnosis - tinnitus, full ear. Was ordered an audio gram and MRI. Slight hearing loss on the right.
Diagnosed with a 2.5 x 2.2 x 1.8 AN on my right side February 16, 2018
Chaos and despair ensued
Research soon followed - I scoured forums, Acoustic Neuroma FB pages, medical papers.
From the beginning, Surgery terrified me so much that weeping occurred when I met with every doctor, or even discussed it with family.
I met and spoke with LOTS of doctors: Dr. Slattery and Dr. Lekovik of House Clinic, Dr. Giannatta at USC, Dr. Yang at UCLA, Dr. Fineman out of Pasadena - he's super (I live in LA). I sent MRIs and chatted with Dr. Freidman and Dr. Schwartz at UCSD, Dr. Cunningham at Duke, Dr. Chang at Stanford, and Dr. Sheehan of UVA. All great, kind, AN-experienced doctors!
I received a variety of opinions ranging from either surgery or radiation - dealer's choice, surgery but you are candidate for radiation, or surgery. I was never told surgery was my only option. Those that suggested surgery (but also said I was candidate for radiation) often cited the reasons against radiation as my age, and the tumor size.
This is when treatment choice becomes exceedingly personal. For me, I am not worried about the potential for a malignancy 20 or 30 years down the road. I am 42. Medical advances will occur during that time and with luck all will be well. Also, the chance of malignancy of my actual tumor is SO low - all signs point to it being a typical AN, so I am going with that. I know for others this is terrifying, and I totally respect that, because I feel the same way about complications or issues regarding surgery.
Dr. Chang at Stanford gave a truly unbiased presentation. Only 2 or maybe 3 other doctors did this, and I had determined that whoever was going to help me, it had to be someone who had a deep comfort level with both procedures, and didn't push me either way. I considered staying in LA to work with one of those doctors, but Stanford and Dr. Chang/Dr. Hancock do so many ANs with CyberKnife...I felt strongly it was worth the trouble and expense to travel. Dr. Chang does a lot of surgery, as well as radiation. He said my tumor was amenable to either. The success rate for tumors my size at Stanford, Dr. Chang told me, was about 93%. He defines success as stopping tumor growth without further intervention. He then went on to say that after that, his top priority is preserving facial nerve, balance, and then hearing. Music to my ears. I hope to be one of the lucky who retains hearing, but my biggest priority is stopping the dang thing.
There are of course, drawbacks to CyberKnife, as there are to surgery. But my heart and head said --- CyberKnife at Stanford. So that's what I did. Waiting for the dates to arrive was hard. But here I am at last. In Stanford as I type. And it has been a great experience. Check in, seeing the doctors, getting blood work, simulation, CT scan, MRI - it is all very efficient and organized. Everyone is kind and on time. The facilities are lovely.
We drove up 4/18, met with Dr. Chang and Dr. Hancock
I also had blood work done to check for pregnancy (nope) and kidney function.
4/19 I had my CT scan (for which I took a course of Prednisone and Benadryl for a suspected reaction to Gadolinium). It for sure helped. I don't have a rash. During the CT scan they made me my mask, which looks like a luchador's. Then I had my MRI and was released into the wilds of Palo Alto while I wait for treatment to begin on 4/23. Treatment will be 3 days for 45 minutes. Because of the size of my AN, I will be given Decadron during that time for swelling. I dislike steroids with a passion. I am told this one leaves some folks euphoric, and then once treatment is over they are gloomy the day after because of withdrawal. But it goes away! In any event, it is what it is. Dr. Hancock said he may also give me something for nausea, as my AN is cozy with my brain stem - sometimes the need to get sick is activated (I guess the nerves or whatever that trigger it are right there). Additionally I will take the Ativan to chill me out. That is a lot of drugs, and I don't relish taking them. But it is only for a short while during treatment (heaven willing), and must be done.
So that's that!
We are staying at a LOVELY Air BNB in Menlo Park. It's peaceful, quiet, and allowed both our dogs to come. I wanted them around for comfort. I highly recommend this place - super quiet, lovely, clean, private and updated.
So far we have eaten at Palo Alto Creamery (so, so good), Sultana (take out - Greek - YUM). Today we went to the Ace of Sandwiches fo lunch. Also delicious. This area - Palo Alto - is STUNNING and reminds me of the green hills of Maryland, where I am from originally.
I'll post more as things move forward
Wishing everyone on this journey the best!