I recently had surgery on December 20th at USC-Keck with Drs. Friedman and Giannotta. I want to share my experience as this site has been very helpful. A little background leading up to my surgical decision and my recovery to date (has been 2 weeks and will continue to update).
I am a physician (surgeon) practicing in Florida. When I was diagnosed over two months ago presenting with primarily disequilibrium symptoms, I was initially relieved that I had a serious but curable or manageable problem. I had a 1.2cm vestibular schwannoma that was only mildly affecting my hearing, and having mild and inconsistent symptoms. I am 40 (which apparently I was told is not that young
As many on this forum know, with this size tumor I had all three options available (microsurgery, SRS, or watch and wait). Great to have options, but did not feel like it once I starting getting opinions!
The good and bad about being a physician is within two weeks I had gathered opinions about my case from many experts in this field, both radiation oncologists and surgeons alike. That's good but also bad because I became overwhelmed. I was having more stress about the decision than the problem itself! I was told microsurgery has risks where radiation, although does not remove the tumor, could control it and was less risk and invasion to my life. Being a surgeon, people were acutely concerned about my time off from surgery, and that radiation would allow me practically to not miss any work. Ultimately I told everyone all I cared about what was best for me long term.
Depending where you live, Microsurgery is done so infrequently and on the largest of tumors that do not respond to SRS, or salvage operations after failed SRS. These are the more complex cases and they are often performed by those locally that do not have extensive experience. Clearly this scenario can lead to a higher complication rate (facial nerve injury, longer surgery times, and longer recovery times). These outcomes further the excitement for SRS. I am not bemoaning SRS, as it is extremely important for the management of this tumor in many situations. And yes, being a surgeon, despite the encouraging 10 year data of SRS, I wanted it out so I can "move on". Ultimately, I told myself that a successful surgery was best for me. So, like all of us, I wanted to find the best place for that successful outcome. Knowing my personality, after SRS I would hate the constant monitoring and concern that any new symptoms or having a bad day would scare me that i would need salvage surgery. And although not evidence based, I was concerned about irradiating my "young" brain as we on this forum should all have a normal life expectancy. That means potentially for me 40+ years after radiation.
Now about the surgery. If you want a hip or a knee replacement, chances are someone within 30 miles has a high volume and excellent multidisciplinary approach with reproducible outcomes. For rare problems and shrinking surgical volumes secondary to the benefits of SRS, that is not the case for vestibular schwannomas (Or acoustic neuroma). I cannot make this point strongly enough. If you are able, you really need to find a team that has high volumes and a consistent team. Let me expound a bit on this point.
A team commonly is an ENT specialist (Neurotologist) and Neurosurgeon. These two surgeons, with ancillary support is crucial. Should be a systematic approach with vestibular therapists and a hospital used to treating this problem. Volume cures a lot of problems, and when there is volume everyone gets better and the outcomes become more predictable. Also, ideally the surgeons should work together consistently. There are efficiencies gained in and out of the OR. If your surgeon does 3 of these a year, I would be surprised if they can get these kinds of efficiencies. I am speaking not based on fact, but I suspect if you want all surgical options available to you, you may need both surgeons on the team. Based on the size and location of the tumor and your hearing impairment, your surgical options may change. To have all three primary options available to you (retrosig, translab, and middle fossa), you may need both on the team as some approaches are more familiar to some disciplines.
My experience follows. Surgery on December 20th by Friedman/Giannotta. I met them the day before, but I spoke extensively to their coordinator Kris who could not be more amazing and accessible. I also spoke to Dr. Friedman as well. I left the hospital December 22nd. My surgery was around 3 hours which, I believe is a little shorter than average but tend to be 3-4 hours almost every time. The shorter anesthesia time reflects time savings that can only be found by experience and consistent personnel. The surgeons were great. I could not be more comfortable with my visits with Dr. Friedman and Giannotta. They are both incredible.
First night in the neurosurgical-ICU sucked. No other way to put it. Trouble getting comfortable ( I am a big guy too which didn't help!) with headache issues. Next day I was walking the halls and went to the floor (so much better there). Then left the day after. Stuck around for my postop appt and then flew home. I was able to experience LA during my time there as I was walking very well. Currently 14 days out and I am getting my energy back (walked 4 miles today!) and still have a very mild headache but managed by tylenol every 12 hours. Oh, and by the way, as a bonus I kept my HEARING.
So, basically not to jinx myself but I am having the recovery we all wish to have. Any questions please reach out. I will say it one last time. If you are considering surgery or want an opinion and you are able to travel, please go to one of the very few high volume centers around the country. Consults can be done remotely (surgery not so much
I am clearly biased, but I cannot imagine you will find the consistency of outcomes like you will find at USC KECK with Friedman/Giannotta. They really care too and was so great to see. The day of my surgery they did 3 and when Friedman found out they preserved my hearing I can tell you I saw the happiness in his eyes. I will be a better doctor based on what I observed with Drs. Friedman and Giannotta.
Questions I would ask your prospective surgeon(s) that were important to me being a surgeon.
1)complication rates
2)what do YOU define as a successful outcome
3)Anticipated OR time (this you will find will vary significantly as one surgeon told me 8-10 hours where Dr. Friedman told me 3.5 hours. Almost hard to believe but this kind of surgery is like that)
4)Do you guys work together all the time (same surgeons or do they alternate)
5) anticipated Length of Stay (mine was 3-4 days although I was able to walk sooner than average so left in 2)
6)Do you do all three primary approaches? (this could be important depending on your particular case. they need to have both experience and the ability to do all three to answer this question)
7)Why do you think the approach you recommend is best for my particular case?
Good luck to everyone and I will update you as I progress. Sorry for the long post!
