Hi everyone,
I just want to share my recent experience to give you hope that a good result and easy recovery are possible!
In a nutshell:
January 2021 I noticed ear "fullness", loss of balance getting out of bed and minor dizziness while doing drills/turns playing beach tennis. It was so minor I ignored it.
December 2021 I woke up and couldn't hear out of my left ear, it returned mostly within hours but my ear felt more full. I waited a day, it remained the same so I finally called and saw my Dr. two days later, who sent me to an Audiologist and recommended an ENT. The Audiologist did note some hearing loss and tried to get me into an ENT immediately. She seemed panicked and said I needed to go to the ER for steroids immediately to ensure I didn't lose my hearing, since it was Friday and I couldn't see an ENT until Monday. The ENT told me I needed an MRI but it wasn't urgent, I could wait a few months. I went as soon as I could, a week later at 8:00pm and I received my results on 1/3/22, that it was a 1.3 x 6mm VS.
May 26, 2022 I had my Middle Fossa craniotomy w/Dr's Friedman and Schwartz of UCSD Health, in southern California (I live in Redondo Beach which is about a 2 hour drive). I am thrilled to share that I was very fortunate! I had absolutely NO pain after surgery. I don't remember much of the day after surgery took place, only that I was confused in recovery (not aware where I was at the hospital or that I was in recovery). After telling my husband profusely how amazing I felt and how amazing everyone was I then said "but when in surgery gonna happen?" He told me it was over and I didn't believe him until he showed me a picture of the gauze around my head and I then looked at the clock and saw it was 1:50 (surgery was at 7:30), so it sank in.
My hearing was preserved and I had no facial paralysis (Dr. Friedman had told me I had a 35-40% chance of losing my hearing and a 1% chance of facial paralysis due to the small size/location of my tumor). I had some dizziness on day two going to the restroom, but it got better quickly. I did have minor drips of fluid from my incision and Dr. Clausen was not concerned it was a CSF, he said it was like when we have a scab and some drainage. He added some stitches and glue to help close that area and that was the end to any liquid! I was healing so well I was told I would be going home a day early and I did!
I did have a daily headache after I finished the anti-inflammatory meds. I was taking tylenol daily until I went to my check-up 6/6/22 and Dr. Schwartz told me to alternate tylenol/aleve/ibuprofin and that if I took them daily my body would then depend on them. The very next day I chose to take nothing for my headache (a 4 out of 10). My headaches then stopped!
I think it's important to note, fortunately UCSD requires MRI's to be less than 4 mo's old before surgery. Mine would be 5 months. My tumor grew 2.5 mm since my last MRI...faster than most, but still within the "normal range".
I will start by admitting that when I first learned I had this benign VS and that surgery required drilling into my skull - I freaked out. I was scared and I cried. I was so afraid of having my skull drilled into I thought, nope, I'm having radiation. Then I learned radiation was only about 75% successful and the scarring would then make surgery virtually impossible. Soooo, it was back to surgery for me. To make matters worse, I wasn't thrilled with either of the 2 surgeons I initially met with (UCLA and Cedars Sinai, both highly regarded). Both told me of the 3 options (WW, radiation, surgery) and told me they didn't perform surgery until another MRI showed the tumor growing; both said to wait a year for another MRI since they're so slow growing. I told them I could not wait a year, they agreed to 6 and 9 mo's. Neither seemed to understand that this was a big deal to me and I had a sense of urgency. Neither told me about the ANA or that Middle Fossa approach was a good option for me since I still had great hearing; they only told me of the surgeries they performed which were 8-10 hours and would have a 50% risk of losing my hearing and 25-50% chance of facial paralysis. Those odds were daunting to me.
I was left wondering, how do I know I have the best surgeons? Google to the rescue! I read a lot about surgeries and found out about the Middle Fossa approach to preserve hearing when under 2cm and I eventually found the ANA. Multiple people mentioned Dr's Rick Friedman and Marc Schwartz in ANA so I then searched for them, finding them at UCSD. They have a great website with a full service approach in their program (audiologist, PT, lodging, etc). So I sent my MRI cd to Dr. Friedman and he called me a couple days later. I was finally at peace with my diagnosis and was no longer afraid after finding these Dr's. FYI, UCSD also has a Facebook page where Dr. Friedman holds virtual sessions to answer questions or discuss a topic - check it out!
6/6/22 I had my 17 staples removed at my check up (which were happily painless!) and the Dr's were quite thrilled to see my recovery, ability to walk and the healing of my incision. I was told to continue the minor restrictions for another week and then I could "do whatever I felt I was ready to do".
6/13/3022 Dr. Friedman emailed me to tell me I was relieved of any restrictions. I began driving myself to the grocery store and appts (I actually drove about a mile on 6/9 to drop my daughter at her High Graduation and then attended the graduation when it began a few hours later).
I hope my experience gives some of you hope and I encourage you all to do your best to try to remain as calm as possible. There's no proof, but it is believed to help your recovery when you go in calm (that said, we did create a Living Will days before surgery - I just thought it would be irresponsible not to. I wrote a 2 paragraph letter to my husband and kids, explaining it was short because I had complete confidence in my surgeons - I'm so glad I was right).
Go enjoy life and have all the fun you want before surgery! I played as much beach tennis as I could, ate a lot of great meals and enjoyed catching up with friends. I had two glasses of wine and seafood the night before surgery, took my usual benadryl and melatonin to sleep, slept great and was up at 4:00 to get ready to head to the hospital ! I'm 57 and in decent shape, but 10lbs heavier than I would like.
I'm happy to answer any questions and I wish you all well...
