Hi Vonda. Welcome and congratulations on the baby! I am sorry that you have to jump into negotiating not only a new diagnosis, but also the insurance companies so soon after. I am also young (31 when I had surgery) and although I haven't been able to start a family yet, I was trying when diagnosed and am anxious to try again asap.
As far as long term pain, I talked with my neurologist, who recommended a very minimal dose of methadone, which controlled the pain at low doses. He said that it would be okay to get pregnant and breastfeed while taking it and that it has been shown to be relatively safe in small doses. Also, while breatfeeding your new little one is clearly very important, don't forget that getting relief from your pain is key to healing. Talk with a specialist about how to do both simultaneously.
I also had difficulty getting insurance to pay for the procedure "out of network."
My partner was a great advocate and got letters from all of my "in-network" MD's stating none of them would do the surgery and/or citing medical literature that shows the more of this surgery the surgeon does, the better the outcome. We made sure to specify that the size of the tumor mattered (I also gad a large tumor). My surgeon wrote a letter to the insurance company saying the tumor needed to be taken out
by a specialist and that due to the large size and the compression of my brain stem, I would die if it were not removed w/i 2 years.
AN's are often listed with the insurance company as non-urgent, but having a surgeons note saying it was urgent (due to size/symptoms), made it more of liability for the company not to cover it! I understand your anxiety about facial palsy. I have been looking for other people in their 20's and 30's with AN's, since I think it is a unique place in life to be dealing with such a scary event. I was grieving my paralysis before it even happened, although when it came down to it, I was surprisingly less focused on the paralysis than on recovery. I'm sure the anticipation after having Bell's Palsy makes it more difficult, but time will pass and inevitably, it will be okay. This cite has been a great support for me re: the difficulty of going through this process.
Good luck with the insurance companies and with your surgery! Feel free to PM me anytime.
Karen
