Second Opinion - 2.4 CM AN, 27 years old

[marciea06]

Hello,

I am new to this forum. I just recently found out that I have a 2.4 cm AN. Apparently I am different than most. I did not find this due to hearing loss, I was actually having awful headaches and blurred vision which caused my doctor to send me for an MRI. They claim that the issues I was experiencing, had nothing to do with my tumor but instead was hormonal changes due to the fact that I had just had a baby 3 months before. I saw the ENT & Neurosurgeon here in Knoxville about 2 weeks ago. The ENT confirmed that I have very little hearing loss in that ear, nothing out of the normal. The neurosurgeon that I saw informed me that he only operates on 1 or 2 ANs a year. So now I am on the mission to find someone else who has seen and operated on more than the doctors here in Knoxville. The surgeon's office has started the referral process to Vanderbilt, but that has been two weeks and I have not heard anything. I personally reached out to Duke and today I received a phone call from Dr. Allan Friedman's office requesting that all of my paperwork be transferred over. Has anyone here had any experience with Dr. Friedman? Or have any suggestions as to where I should get another opinion. The doctor here in Knoxville told me to take my time and get as many opinions as possible.

[CHD63]

Hi marciea06 and welcome to this forum .....

If you have not already done so, I hope you send for the free informational material from the ANA (see https://www.anausa.org/contact-us ).  It contains a wealth of accurate, important information.

Your doctor in Knoxville is absolutely correct to get multiple opinions on treatment.  There are a number of doctors around the country who are very experienced in treating ANs and will give free evaluations based on your MRI and audiogram (if you have it).

Dr. Allan Friedman at Duke is a well-known neurosurgeon who operates on brain tumors.  His specialty is in invasive brain tumors.  Acoustic neuromas are in the category of skull-based tumors.  Both types require going through the skull, but involve different surgical techniques.

Some experienced acoustic neuroma doctors I know, who do free evaluations:

Dr. Rick Friedman at USC in Los Angeles.  See:  http://www.keckmedicine.org/rick-a-friedman-md-phd/
Dr. Steven Chang at Stanford.  See:  https://med.stanford.edu/profiles/steven-chang
Dr. Marc Schwartz at House Ear Clinic.  See:  https://www.houseclinic.com/consultation/acousticneuroma

There are many other doctors (University of Iowa, Mayo Clinic, Mass General, University of Pittsburgh Medical Center,etc.) who would be excellent, as well.  The important thing is that they have vast experience specifically treating acoustic neuromas.

Let us know any other questions you may have.

Thoughts and prayers .....

Clarice

[marciea06]

Thank you for your response Clarice. I Am so glad that I found this forum. It's nice to find people who know what I am going through. I am sure that I will have more questions.

Marcie

[alabamajane]

Hi,
Clarice as usual has great advice. Go on House clinic website and definitely send copy of your MRI out there for valuable advice and info from some wonderful Drs. Be aware that they will most definitely suggest surgery as that is what they do most. But you are almost at the upper end size wise for radiosurgery anyway. But check if that is what you might want to consider.

Vanderbilt has wonderful Drs too if you want to stay closer to home.  Dr Weaver is one I believe. They are a very well respected hospital for AN surgery and close to you.

You should have time to research before rushing into anything..just be aware of your symptoms and if any should worsen. Be sure to ask about location of tumor also as size is not the only important factor to consider. If it is growing towards brainstem, you may have to act sooner.

Let us know how you do!!
Jane

[michellef08]

Hi! I was diagnosed when I was 27 too!! I had my tumor removed at House Ear Clinic by Dr. Schwartz and Dr. Friedman (since moved to USC) almost exactly 2 years ago! They were beyond amazing! They removed my entire tumor (small in size - 1 cm), saved my hearing, and I had no facial or balance issues whatsoever!

I would highly recommend sending your MRI there for a free consult!

Let me know if you have other questions, I am happy to share my story!

[Troutbc]

So sorry to hear about your diagnosis. I am 26 and just had my AN removed at Mass General in Boston 3 weeks ago.  It's so scary and totally sucks but let me tell you, it is worth it to travel to get the best treatment. Having 100% confidence in my surgeons is the only thing that got this soon-to-be-married, social gal to the operating room. Scared out of my mind but I knew I chose the right place for me. 3 weeks out and I am doing great I think!! Definitely take time getting multiple opinions and choose a high volume hospital (where they do multiple ANs a week). Also plan to spend 2-3 weeks minimum wherever you go to get it done in case of delayed complications and just a general sense of peace being close to the hospital. This process is a whole lot better if you have confidence and give yourself time to heal close to the hospital. Reduces all worry and let's you just focus on healing. It's totally worth it to travel! Good luck and in my opinion, if you need surgery, just do it now so you can move on with your life. Every day I get better.

[marciea06]

Thank you everyone for your responses and help. Now that I have a better understanding of what I am looking for, I have decided to go with Dr. Friedman at USC. I had an appt. tomorrow  at Duke and after talking with the team at USC, I decided to cancel. I can not compliment them enough. The patient navigator at USC called me this morning and spent 45 mins on the phone with me and answered every question or concern that I had. Not long after I got off the phone with her, Dr. Friedman called me and gave me his approach on all of it. The time that they take to reach out to their patients is amazing. They made me feel like I wasn't another patient. I look forward to planning my surgery with Dr. Friedman in the months to come.

Thank you once again Clarice for even suggesting that I send my info to Dr. Friedman for a free consult. As well as Michelle, thank you for reaching out and telling me your story and experience with Friedman.

[jeninla]

I had a 2.0 AN. I also had no hearing loss before surgery and I discovered my AN after childbirth.  It was really important to me to try to keep my hearing so I opted for retro sig with Slattery/Schwartz at House.  If you look up my posts you can read about my story.  I'm now 10 months post op.  They completely removed my tumor.  I have normal hearing on my AN side, no more headaches, I feel pretty much normal, maybe even better than pre op.  But one thing that was difficult was the first month post op.  Since I didn't suffer any of the balance issue prior to surgery, I got a full dose of it after.  Anyway, feel free to ask me if you have any questions. 

Good luck!

[CMC]

Hi marciea. Im curious, did doctors at USC say the tumor was causing your blurred vision and headaches? Those are main symptoms as well. I am certain after 6 yrs watch and wait that my tumor is causing it. I can totaaly recollect each phase of symptom progression even though I have no growth.  My next MRI i plan to send to USC too.
Hope to hear back ....Tina

[marciea06]

Hi there Tina! I apologize for the delay. Surgery is in less than 2 weeks and I have been in a total whirlwind for the last month. As for your question, I asked Dr. Friedman if those things were related to the tumor and he said it's very unlikely. The migraines, possibly. Vision issues, not likely. Doctors here told me that my vision problems were hormonal due to have a baby only 3 months before all of my symptoms started.