Acoustic Neuroma

Hello, my name is Jim and I would suggest, if you are in the So. California area, there is UCI Med center, specifically the Chao cancer facility, where I had a tumor removed in June, 2009. First diagnosed 1995 in millimeters in an area that USC neuros said was now causing Gran Mal seizures at age 24...they said this type of lesion is fairly common and rarely do anything, take your anti seizure meds and off I go. getting mri's every year for 5 years until 2000... no changes and back to playing competitive golf. From 2002 to May of 2009,some physical issues progressed and I dismissed them as my nerves while playing golf and having no insurance. An MRI showed the lesion was now the size of two golf balls "slowly"(7yrs) squeezing their way by the right frontal temporal lobe and turning the brain stem enough to be of bigger concern. The neurosurgeon who performed the procedure was Dr. Mark Linskey and he had suggested with hindsight, that, he would have opted to remove the lesion in its tiny form when first found at USC in 1995. UCI is a place of practical methods and incredible people for me. I had a very modest HMO and my out of pocket was extremely affordable. In June 2, 2009, out July 5th. One month in the ARU for rehab. I responded to your comment because my seeing & hearing into the right side has become distracting to say the least. I have had very few minor headaches since the awake craniotomy and I enjoy this a lot because for many years I couldn't even shake my head a tiny bit, even to signal a "no" to someone. If headaches are a problem for this child now, I think relief can be found by clearing the literal senses of an unwelcome guest. I don't recognize those particular procedures but I hope my output/input is of some help. The Chao cancer center UCI campus also found a way to help a friend's son who had multiple lesions on the brain and was lacking insurance. FAW, find a way. Sorry, I dither a lot now and hope sharing becomes caring again and not daring. Take care and be care... I hope everyone connected to this find relief

I would suggest researching the website and joining the ANA; acoustic neuroma association. You will find many articles, research, ongoing upcoming informative webinars, and even support from those who have been diagnosed. This process should provide you with enough information to help you make some decisions, and to prepare your individual questions for a qualified team of medical experts in treating acoustic neuromas.

Having more than one opinion/evaluation from a qualified medical team ( neurosurgeon. otolaryngologist, audiologist, etc.) is definitely beneficial. Many medical centers will have all these professionals present to offer a consulation and give you their opinions and sometimes even without traveling to their center.

Mayo Clinic is an excellent choice for discussing your individual options because they treat so many individuals with varying diagnoses and conditions. Depending upon where you live, there are many medical centers across the US that have teams of physicians who specialize in the treatment and assessment of acoustic neuroma patients. Wherever you decide to go or options you choose you and your loved one will need to be comfortable with everyone on the medical team involved in treatment and the options offered to you.

Hi Jim,

Thank you for taking time to provide information. I appreciate your courtesy, very nice of you.

Thank you for your courtesy, and time.

Very nice gesture, thanks again !

Hi @hopemay, you've already received some helpful suggestions from @thessie and @tink4iggy. I'm also going to tag some other members who have experience with acoustic neuroma like @cynaburst @lmp1 @alexie1942 @mohanak and others.

You mention that your family is also considering getting a second opinion at Mayo Clinic. You can request an appointment at the location of your preference here:
http://mayocl.in/1mtmR63

You might appreciate learning that Mayo Clinic has a 48-hour access program for brain tumor. When you call at any of the 3 campuses, be sure to mention the Brain Tumor 48-hour Access program.

Here is a video that might also be of interest:
- Mayo Clinic Neuro Chat on Acoustic Neuromas with Dr. Peter Weisskopf, Neurotologist, at Mayo Clinic in Arizona
https://connect.mayoclinic.org/event/mayoclinicneurochat-on-acoustic-neuromas-with-drs-bendok-weisskopf/

Hope May, you mention that your family member is young. May I ask how old?

Hi Colleen,

Thank you for your courtesy. I look forward to hearing from the members @cynaburst @lmp1 @alexie1942 @mohanak as you mentioned.

With geographic limitations with travelling for second opinion, we are unable to travel to Mayo. But we are hopeful to get more info, discussions from you and other Mayo Connect members.

Please keep me in mind, thank you again to you and other members for the support.

Hi @hopemay

I had a large 3 cm acoustic neuroma about 22 years ago. I had my surgery (retrosigmoid) at Cedars-Sinai hospital by Dr. Keith Black. I had an excellent outcome and am doing well. The place many people go to here in CA is U.C. San Diego - Dr. Rick Friedman. He hails from the House Institute who used to do the lions share of these surgeries.

It is best to pick the approach the doctor is most comfortable with and thinks will produce the best outcome. I didn't even consider other approaches since Dr. Black was certain that retrosig was his preference.

The larger the tumor, the more dangerous it is to wait. Mine was crushing the brain stem so it was considered a medical emergency. If your relative's is not near anything crucial, it is probably ok to take your time to decide. In general it is a slow growing tumor.

I echo the previous poster's recommendation to check out the Acoustic Neuroma Association website. They have lots of good information there.

Wishing you all the best.

Hi Cynaburst,

Thank you, I appreciate your courtesy. Information you provided is very help.

Again, thank you for your support. I will posting as we move further.