Ballerina with AN

[Cindyswart]

Hello to all!! I am also newly diagnosed. I have now seen a neurologist, a neurosurgeon, an otolaryngologist, all of whom say to wait and watch, and finally an AN specialist who is ready to do surgery. My AN is 1.5 x 1.9 x 2.0. I have facial desensitization, the taste on the right side of my tongue is numb ( tumor is pushing slightly into the brain stem) and the hearing in my right ear is diminished. I am a ballerina so balance is an issue, although I cope well. I am given the chance of 97% for no facial paralysis and my hearing should be fine after surgery. I just don't know how quickly I need to move on this. My neurologist says that I should see the second MRI in October before making my decision. I am 51 and he feels that my AN could stop growing.  this is truly the hardest decision I have ever made and all opinions are different. Anyone with words of wisdom chime in!!

[Jim Scott]

Hi, Cindy ~

I'm sorry you're dealing with an acoustic neuroma diagnosis but welcome to the ANA discussion forums.  Although your AN is relatively small, it's location is critical and I would suggest considering addressing it soon if the October MRI scan indicates growth.  Radiation is an option and although non-invasive, it does carry some risks, as a reading of the post-radiation threads will show.  Surgery is always an option, if your doctor agrees, but of course, that, too, carries inherent risks.  There simply is no 'magic bullet' for this situation but the majority of AN patients do quite well.  From what you doctor has stated your prognosis looks very good.   Of course, should the tumor cease growing on it's own, that would be the very best scenario.  It is fairly rare, but does happen - and I hope that it happens for you.  Please consider these forums a resource and a source of support as you struggle with this AN business. 

Jim

[kraynok2]

Cindy,
   I just wanted mine out.  It was something that did not belong there and I wanted it gone as soon as I could get scheduled.  But I understand your concerns and we are all different.  One thing to think about, is that you said it is pushing slightly on the brain stem.  If it grows, that could cause problems.  If your ballet performances are not being affected, you may want to wait until October.  You have done your homework, visiting all 3 doctors and the AN specialist.  Get all of the information you can before you make a decision.  This forum is great and you will read about all kinds of scenarios.  Good luck to you and keep up updated.
Sandy

[leapyrtwins]

My two cents, and I'm sure not everyone will agree, have treatment sooner rather than later.

If you have the chance of saving your hearing, don't let that chance get away from you.  I never realized how precious my hearing was until I lost 1/2 of it.

Although ANs do grow slowly, and tend to grow slower with age, I'm not sure you can bet on that happening.  51 is relatively young; if you were 71 it might be a different story.

At the very least, you definitely need to monitor your AN through MRIs, and take action if there is growth, if you experience new symptoms, or if your current symptoms get worse.

Jan

[LisaM]

Greetings Cindy,

I have an AN about the same size as yours and was diagnosed on April 14th.  I'm doing an aggressive acupuncture treatment at the moment.  Don't know if it will work, but rushing into surgery, just didn't feel right to me and the chances for saving my hearing with surgery are 50/50 right now.  My hearing is a big gamble with or without surgery it seems.  I will have another MRI July 14th to see what my "marble" looks like after my acupuncture/electro therapy...   In the meantime I am monitoring my hearing with hearing tests.  I describe my "alternative approach" in more detail on Derek's thread: http://www.anausa.org/smf/index.php?topic=3791.135

Curious... what type of doctor was the AN specialist?

Best,
Lisa M

[Cindyswart]

HI Lisa, The dr that I saw was at Carolina Ear and Hearing Clinic. They have a website and I went there first for research. Last evening I spoke with the Otologic Nurse and she gave some very good info. Because my AN has not yet descended into the workings of the inner ear, my possible outcome for restored hearing is very good. When they tested my hearing, in the soundproof booth, my hearing is actually very good, not loss, just diminished. Therefore, they feel that removing my "wart" now will ensure me of a very good outcome. I was also very concerned about facial paralysis. I was given a 97% chance of a good outcome on that also. My concerns now are that if I wait I will be jeopardizing my chances concerning these issues. Soooooo, I have asked them to the schedule the surgery, looks like maybe October. This surgeon is a very busy man! If there is one thing that I am learning from this journey- your health is your responsibility! Read, read, read, ask, ask, ask! I have asked for things that I never thought I would receive, especially from the medical community. And so far they have obliged. I thank everyone for posting- it is wonderful to feel accepted and heard. I will keep my MRI appointment in July, I just have to know what the "wart" is up to! But I feel some peace that this is finally moving forward.

[cobbler]

Hey Ballerina!
Just had my AN removed by Dr. McElveen 10/10 - I did not wait. I did not want to run the risk of any facial paralysis if left to grow. If you are already having some facial desensitization, that would concern me. Also, if there is any chance of saving even partial hearing, that would be an excellent step in helping maintain some of your balance. I was not able to retain any in my right ear - 100% gone.
Balance will be an issue at first but gets better with time. I have actually forgotten about that issue unless I occasionally run in the wall With you being a ballerina, you will probably adapt more than the rest of us since you are more in tune with balance issues any way.
Good Luck and Keep us posted!

Misty

[Cindyswart]

Thanks Misty! It's nice to speak with someone who has actually had him do the surgery. His positive attitude about this whole thing was just to hard to ignor. I am just praying for quick recovery, i am not easily held down and I feel that I will be a bit mpatient to have my life back. I wokr a lot from phone and computer so I think I will do just fine. God has instructed me to cease to worry, that he is in control. That is the train I am on now. I wil stay in touch.

Cindy

[Cindyswart]

Hey Misty!

 Tell me about your recovery time!

Thanks, Cindy

[Doc]

I actually agree with Jan!

Best of Luck to you...you'll make the right decision...!

Take Care!
  
Doc

[Cindyswart]

Thanks Doc! It's wonderful to consider myself so young at 51!! I am determined to get this done and recover as quickly as possible. isn't it funny how something like this makes you appreciate what and who you are!! i just want to get back to being me instead of stagger girl!

[TP]

Cindy, my two cents, I would have it removed. My tumor was on my brain stem and was a pretty good size. I lost my hearing totally and I have facial paralysis and had double vision. If I had learned about my tumor earlier I possibly could have avoided some of these issues that I have. I recovered nicely in the sense that I was back to work within a few months (I had two add'l surgeries but won't go there and bore you with that stuff). I am in martial arts and I believe my strength helped me recover quicker. You being a dancer your legs are probably very strong and muscular. That will help you a great deal in your recovery. Hang in there and we will keep you in our prayers!

[Rivergirl]

I do think I would have had mine done instead of watch and wait because the pressure I have is terrible and I could have avoided going through this had I opted for surgery.  Of course surgery is no guarantee that the nerves won't be compromised, that is always a risk.  Do your research, go to your consults and you will feel better about what is best for you. I think being a ballerina probably has given you superior balance which will make the compromise on your balance nerve less of a problem.  Best of luck with your options and treatment.

[RichB57]

Cindy,

Not to rain on your parade, but you might want to question your doctors a little more on keeping your hearing after the operation.  My tumor was 12.3mm x 15.2mm x15.2mm on Dec 1, 2010, and was removed on April 20, 2011 (5 weeks ago) at Mass General.  The lead surgeon said, "This is fairly small.  Should be an easy surgery."  The surgery was 10 hours and I'm now Single Sided Deaf (SSD).  At least I was told there was still a 50-50 chance I could lose the hearing.  I'm not trying to scare you, but I think one thing you find as you start doing research is that the doctors all seem to have different opinions on what "easy" or "good" mean.  The first surgeon I was referred to said "We should just do a translab because your hearings not very good to start with".  I did research on what the numbers on hearing test meant and my hearing was on the line between good and excellent.  At least the doctors at MGH agreed my hearing was worth trying to save.  I am also into martial arts and yoga, and balance was my main concern, and while it's not quite as good as pre-op (I'm only 5 weeks post-op) I think it's pretty good, some I'm pretty happy with the result.

[Doc]

Thanks Doc! It's wonderful to consider myself so young at 51!! I am determined to get this done and recover as quickly as possible. isn't it funny how something like this makes you appreciate what and who you are!! i just want to get back to being me instead of stagger girl!

Just so you know, having surgery, no matter how small your AN might be, is no cake walk...not even close. My AN Surgery wasn't the first major surgery I ever had (Open Heart in 2008), but I can honestly tell you it kicked my butt, and good. I was in hospital for three weeks, which included in-patient rehab to get me kinda sorta walking again before going home. Remember, I had a Golf Ball sized Tumor. I was back to work at my desk 10 days after being discharged. Not what you'd call normal but getting back to my routine was necessary for me...we all move differently through the AN experience.

If I was allowed to share only one piece of advise with anyone dealing with this nasty AN thing, it would be not to let the Boohoo take hold...that wouldn't be wise. Attitude is 90% of the recovery process...in my "experienced" opinion. The rest is paying attention to your Doctor(s), follow their instructions and one more thing, smile! Mine was half-a**ed in the beginning and still is (left side facial paralysis).

Take Care!
  
Doc