Newly diagnosed and overwhelmed

[katmac36]

Hi! I my name is Katie. I am a newly diagnosed 36 year old. My AN is considered "small", I guess, at about 1.3 cm. My ENT gave me the bad news a few days ago and I am a little concerned. I have been doing a lot of reading about this. This is, unfortunately, the 2nd "rare" tumor I have had in my life. The last one took a lot out of me and I am dreading going through this again. My doctor suggested a neurosurgeon here in Atlanta. I am a pediatric nurse and know him as a pediatric neurosurgeon. Apparently he also operates on adults with ANs. That is my concern. Are there no other neurosurgeons in the Atlanta area that have experience with this? I will go see him as suggested, but I want someone who has significant experience with this. Not someone who sees maybe one or two a year. I am getting frustrated because I don't know where to turn for second or third opinions. Does anyone know of anyone in the Atlanta area? If not, where should I look? I will travel wherever i need to go. I was hoping to get some feedback on others experiences with different specialists and hospitals. So far I have heard a lot about House and Mayo. I was also researching Duke since that is fairly close. I am trying to keep positive. I know it could be worse. I am thankful this is benign and that so many of you have had wonderful success stories. Thank you!

[Jim Scott]

Hi, Katie - and welcome.

I'm sorry you've been diagnosed with an acoustic neuroma and your anxiety is understandable (we've been there) but with a relatively small tumor, you do have options.  I recommend ordering the booklets available from the ANA here: http://www.anausa.org/index.php?option=com_virtuemart&page=shop.browse&category_id=1&Itemid=168&vmcchk=1&Itemid=168 

Check out the ANA physicians directory here: http://www.anausa.org/index.php?option=com_content&view=article&id=177&Itemid=122. Duke, Mayo and House are all excellent facilities.

Others will soon be adding advice, suggestions and support.  I think you'll find the ANA discussion forums invaluable. 

Jim

[MJCKY]

Hi Katie,

I had a 1.7 cm AN removed on 5/5/11 at House. I live in KY and got three different opinions: University of Cincinnati; Cleveland Clinic; and House Ear Clinic. All three gave me a different recommendation on how to treat my AN. I went with house because they have the most experience and gave me a 60% of saving my hearing vs 20-25% chance that the other two gave me.

My surgery went very well and I don't have any major issues and they were able to remove the entire tumor. Dr. Brackman and Dr. Schwartz performed the middle fossa approach and were able to save all of my hearing and I only have minimal facial numbness that is going away. Be prepared to be dizzy and extremely fatigued for the first few weeks. If you opt for surgery your balance nerve will be removed and your body will need to adjust. If you travel you will need to bring someone to help take care of you 24/7 until you get home. Everyone recovers differently but I couldn't have done it on my own.

Every tumor is different so there is no wrong or write method but if I were you I'd send my MRI disc to Dr. Brackman at House. By the way I'm 34 and 6 weeks post-op I feel 95% back to normal so don't get discouraged there is light at the other end of the tunnel. I hope you find the right path for you and let me know if I can help with any questions.


Mike

[nftwoed]

Katie,
  Was wondering how many MRIs you've had? One should have a growth baseline.

[Kaybo]

Hi Katie an WELCOME!!


I don't live in that area, but if there is no one around you, I'd check out House.  There are many talented around the country, but I used to live where there was no experience so I know how that is.  I am in Houston now and lived in Austin when I had my AN surgery many years ago so I actually came here.  My husbands family lived in Houston so that was a good fit for us.  Also, I didn't have the luxury of "looking around" as my tumor was so large that I had surgery a week after it was discovered!

I think that Cindy is from Atlanta...

If need someone to talk to - feel free to PM me and I can call you.

K   

[Desilu]

Hi Katie,

There are many good doctors out there. You just have to do your research, which is what you are doing. I went to House, like Mike did. I live in Indiana and my story is much like Mike's although I did this 5 years earlier. House gave me an 80 to 90% chance of saving my hearing with middle fossa approach, where as the doctors close to me said it was a 50/50 chance. I had one chance to do this right, so I knew where I had to go. I retained 85% of my hearing and no facial paralysis. From surgery to back to work was a total of 8 weeks. I have been very happy with my decision to go out there and have no regrets. House does offer a free phone consultation if you send them your MRI CD. I was 46 at the time of my surgery. Every AN is different and the healing process for each one of us may vary. Keep a positive attitude and search until you've found the right doctor for you! I am on the willing to talk list, if there is anything I can help you with, please email me or give me a call. I wish you the best on your AN journey. Ann

[cindyj]

Hi, again, Katie!  I saw this post after I replied to your PM...forgot to mention that our next Atl area support group meeting will be Sat, Jul 23rd at 10:00 at Northside Doctors bldg.  Would love to have you come - we have a great group you can talk w/ - most have already had treatment, so you can ask about their experiences with those local docs I mentioned, as well as House docs...a couple of us House patients are in the group.

Hope to talk with you soon,

Cindy

[katmac36]

Thanks everyone!! I am looking around as we speak. I spoke with the office that the ENT recommended this AM. Unfortunately, I cannot make the appointment. My ENT has to do it after they fax all the info. Frustrating!! He is mainly pediatrics but does operate on adults. I am not sure how I feel about this. How many does he really do in a years time?? Believe me, I will find out. I feel like a crazy person right now with my quest for information. I also e-mailed an old classmate of mine that was treated for a brain tumor at Duke. She is giving me info on her docs and highly recommends them. Whether he does AN or not, I don't know yet. I will also be sending my info to House in california. I really appreciate all of your help and encouragement! I really makes me feel better.

Cindy, thanks for the info on the support group. I work nights as a nurse and have to work all of that weekend. However, if I can find a way to come, I definitely will. Do you have to RSVP in advance or can I just show up?? Thanks again for your help!!

[Sue]

There was a young man on here a few years ago and he had his treated in Florida. He was very happy with his outcome.  I think it was in Tampa.  That wouldn't be too far for you.  Something to consider....

[leapyrtwins]

There was a young man on here a few years ago and he had his treated in Florida. He was very happy with his outcome.  I think it was in Tampa.  That wouldn't be too far for you.  Something to consider....

I think the doc was Bartels.

Jan

[jaylogs]

Hiya Katie, and welcome to our little club! Sorry you HAD to be hear, but there's no better place to be!! I know this is all overwhelming for you, so just take this in small bites and do your research.  As far as what kind of doctor you should be looking for, I'd get one that has done a LOT of procedures.  Also, don't rule out any kind of radiation procedures, don't be surprised if the doctor's you consult may suggest that.  A lot of people on here have had great success with it. It just all depends on what YOU want in the end, though.  Personally, I wanted the thing out of my head once and for all...  Whatever you do decide to do, good luck and try not lot let this get you down! We all have great shoulders on here if you need to vent!
Jay