Keep Smiling

[beancounter]

I count this place as one of the many things I am thankful for and I appreciate the compassion and passion each of you have shown me, whether by a response to one of my posts, a reply to a personal message or a general discussion that has helped educate me about the dreaded acoustic neuroma.  I go for tests on Tuesday and will know more then about where mine stands (or sits).  Between MRIs, ANs, ENGs, ABRs, G and C Ks, etc., I guess we've all become too well-versed in medical monograms.  Happy Thanksgiving to all.

[Desilu]

Hi Beancounter,

Your AN is very small so you have plenty of time to research your options. Make sure you check out both surgery and radiation. This will give you a better understanding about your situation and how to deal with it. The old saying goes "What doesn't kill you, will make you stronger" You will definitly come out of this more educated and stronger than you ever thought imaginable! I wish you the best! Please keep us posted on your progress.  Ann

[beancounter]

Thank you, Ann.... I'm good with this.  I feel almost like it's a test that I can pass or fail.  No one ever promised that life would be easy.  I am blessed beyond measure (have always said I lead a charmed life).  I guess it was high time for the other shoe to drop and I'll come out on top as so many here have.  Thanks for responding. 

[Yvette]

Hi Beancounter, did you go to the doc today? And just remember, like you said, a lot of us are doing very well, so hang in there.
Yvette

[beancounter]

Thanks for asking, Yvette.  Yes I did.  I had a hearing test, an ABR and an ENG.  The audiologist said my hearing is better than hers (and most of the general population for that matter).  There was an ever-so-slight dip on the right side (my AN is on the left).  The other two tests were within normal limits, with a tiny variation on the left side on the ENG.  The doctor pretty much set me free, acknowledging he is not in a position to advise me, with instructions to find a qualified specialist to help me know what to do next.  So now I guess I need to find out which type of doc to see, and where.  For anyone who may be reading this...  any suggestions?  I am in Kentucky.... within a two hour drive of Nashville, a three hour drive of Louisville and a four hour drive of Cincinnati.  Part of me is glad they found the "red herring" incidentally and part of me wishes I didn't know.  Thanks to anyone who may have recommendation about a doctor.  I appreciate this group so much.

[lori67]

I'm in Nashville.  I use the Otology Group at Vanderbilt.  Great group of people.  My neurotologist, Dr. Kaylie is leaving in January to take a position at Duke, but Dr. Haynes is also great.  They really took good care of me, both medically and emotionally.  I just had an appointment yesterday and thanked them all for actually making brain surgery a pleasant experience.  Not that I want to do it again, mind you.  I never had to worry about anything - insurance, appointments, phone calls to the doctors.  They took care of me from the minute i walked through the door.  i think I may have already told you that....ok so my memory isn't great...

I realize that's not exactly the most important part of the whole process - but medically speaking, I think I've done very well.  I haven't had any setbacks or problems since the surgery.  I'm still have some not so great days, but overall, I'm pleased with my progress.

I think there is a good place in Cincinnati also, but I don't know anything about that.  I was fortunate enough to be nearby Vanderbilt so that was one decision I didn't have to worry about. Fortunately for you, it sounds like you have some time to do your homework on this and find what works best for you.

Good luck on your search.
Lori
I never realized how hard it is to type "neurotologist" and "opthomologist".

[beancounter]

Lori, thank you.  I rooted around and found the post you made when I first asked about Nashville and have been to the link you posted for their site.  I'm glad you're doing well and appreciate your upbeat attitude.  I will call Vanderbilt next week after I check around to see who else is an expert and close to home (if, indeed, there is another).  Cross your fingers that Vandy is in my PPO network.... I'm putting off looking right now because I want to relax a tad and pretend for a few days.  I take care of my mom, who is 78 and in bad health, and finally had to tell her about the little "enhancement" to my life.  She thinks because my tests were within normal range that all is good and it's pretty much a done deal.  I will let her hang on to that thought while I research things.

[lori67]

Your Mom sounds like mine!  She felt bad that she couldn't come down to be here when I had my surgery so I just put on a happy face (and phone voice) and made it seem like everything was fine.  My sisters came down to help watch the kids while I was in the hospital and it wasn't until after they returned home and my Mom saw the picture of my battle wounds that she said "Oh, I didn't know Lori's surgery was that involved".  My sister said she had to bite her tongue to keep from saying "Mom, it was brain surgery - what did you think?".  Oh well, the way I see it, she spent many years protecting me, now i can do my part and protect her a little.

Enjoy some down time and take care of yourself.  It will give you the energy and clarity to make the decisions you need to make when the time comes.

If you do decide to come to Nashville, let me know - we can do lunch!  Can't help you with that if you go to Ohio - I don't go North - too cold!!   
Lori

[fbarbera]

House Ear Clinic, which is among the most highly regarded centers in the country for the treatment of acoustic neuromas, offers free consultations (http://www.houseearclinic.com/acousticneuromaconsultation.htm).  They will be biased in favor of surgical removal but it could be helpful to hear their perspective.  You also generally make sure to learn as much as possible about Gamma Knife and Cyberknife.  Check out the Cyberknife Patient Support Group messageboard (http://www.cyberknifesupport.org/forum/) -- you can post questions on the board and the generous volunteer doctors will respond quickly with answers about radiation treatments.  When I learned of my condition, I emailed my MRI report directly to Dr. Steven Chang at Stanford University to find out more about Cyberknife and he was very responsive.  I ultimately elected to treat my AN with Cyberknife.  Please keep in mind that doctors in this field each have their own biases and preferences -- you should make sure to hear from doctors who are trained in both neurosurgery and radiotherapy, so that you fully understand the pros and cons of both treatment approaches.  For a tumor as small as yours, both options will be available to you.

Good luck!!


 

[Yvette]

My hearing was tested and found to be perfect in both ears two weeks before translab. That made losing that ear all the sadder. But I am glad to be alive, so good trade:-)