Questions for my potential surgeons

[MichaelNorCal]

A month ago I was diagnosed with an AN. It's pressing on my brain stem and causing quite a few unpleasant side effects. I feel pretty strongly that I want to opt for surgery (and it looks like CK isn't an option for me anyways).

I have two meetings scheduled with different neurosurgeons from Kaiser in California (Cueva then Efron) later this month.

I'm curious about 2 things:

1) What questions should I ask the doctor's to make the best decision?

2) What is the #1 thing you wish you had known before going ahead with surgery?

Thanks for any help you can give.

-Michael

[ANSydney]

It's great to see that you are consulting two microsurgeons. Make sure you also consult two radiosurgeons.

I ask what is the chance, for your particular case, of the following:
1) Facial nerve damage (none, moderate, severe)
2) Hearing degradation (none, moderate, severe)
3) Trigeminal nerve damage (none, moderate, severe)
4) CSF leak
5) Hydrocephalus
6) Death
7) Control (that is, no regrowth necessitating another procedure)

Also I ask how many vestibular schwannoma operation have they personally done? Do they work in a team? Who are the other team members (mainly discipline).

[ANSydney]

Also, I was just reading the peer reviews for http://bmjopen.bmj.com/content/3/2/e001345.full.pdf and one of the reviewers, (Michael Gleeson, MD, FRCS, FRACS, FDS. | Professor of Skull Base Surgery | The National Hospital for Neurology & Neurosurgery | Queen Square, London) said somethign that I found very interesting "Let it not be forgotten that less than 33% of patients who present
with vestibular schwannomas ever require active management in their lifetime, other than interval clinical and radiological review".

[michellef08]

My #1 question was how many of each type of surgery they have performed. Especially if your tumor is pressing on your brain stem, I assume it is large so you will want to know how many large AN surgeries they have performed. The best thing you can do for yourself is go to a highly experienced surgeon. This isn't any run of the mill brain surgery - it's a very specialized surgery that requires experienced doctors if you want the very best outcomes. There are too many risks if you don't.

There is also this list on the ANA website with other questions to ask: https://www.anausa.org/pretreatment/questions-for-your-physician#questions-for-the-acoustic-neuroma-surgeon

Good luck!

[cathyroe]

Hi Michael,
Since you live in California, why not consult with the docs that are known as the best? Dr. Schwartz at House Clinic is so experienced with ANs, and has the best outcomes from what I have researched.
For a complementary consultation request :
House Clinic
Att: Acoustic Neuroma Website consultants
2100 W. Third St. First Floor
Los Angeles, Ca
213-483-9930

I ended up with GK at UPMS with Dr. Lunsford, but if I went for surgery, I would have chosen House.
It doesn't hurt to get a free consult, right? And they are supposedly the best.


Hope this helps,
Cathy

[ANSydney]

At a tumor size of 18mm x 19mm x 17mm it's sounds like radiosurgery is open to you. Have you spoken to a gamma knife (or another type of radiosurgery unit)?

[MichaelNorCal]

At a tumor size of 18mm x 19mm x 17mm it's sounds like radiosurgery is open to you. Have you spoken to a gamma knife (or another type of radiosurgery unit)?

Both of the teams I'll be speaking with offer radiosurgery as an option.

Apparently, there is some kind of "cyst" attached to my An that may preclude CK as an option.

Thanks for the support and suggestions.

[MichaelNorCal]

Good luck!

Thanks Michelle!

[MichaelNorCal]

For a complementary consultation request :
House Clinic

Thanks Cathy. I am with Kaiser, so House won't be an option for treatment.

The team led by Dr. Cueva in San Diego has been doing AN surgeries for 25 years so I feel pretty confident with them. It looks like surgery may be my only option as there is a cyst attached to my AN which could preclude CK as an option.

I'll know more after my meeting with Dr. Cueva's team next week.

[Dee-dee]

Hi
Ask whether they put a titanium plate or not in the skull post surgery if they go in from the back and what has been their experience with the plates.  Do they cause headaches.  How many do they remove because of problems.
D