Surgery, etc.

[jk327]

Hello all!  I would like to begin by saying how helpful this website has been for me.  I was diagnosed with a 19mm x 10mm x 9mm acoustic neuroma on my right side in early August, and have met with quite a few different doctors since then to discuss my options.  I eventually decided to go ahead with surgery, which is scheduled for December 15.  I have been feeling significantly worse since the symptoms started in early May:  I am nauseous almost all of the time, I am frequently dizzy and occasionally get disoriented and I do not know where I am, my vision also get blurry from time to time...basically I am ready to get this taken care of and hopefully get back to a semi-normal life.  Also, some of the doctors have mentioned neurofibromatosis type II, based on my age (I turned 20 this year.)  I have done tons and tons of research, and am aware that this is a relatively rare condition, but is it still something I should worry about?  I am on track to go to medical school in 2012 (assuming I keep my grades up and do well on the MCAT) and am very worried about losing hearing in both ears.  Sorry for the randomness of this post, but I appreciate your time and comments!

[Jim Scott]

Hi - and welcome to the ANA Discussion Forums.  Thanks for registering and posting your message. 

Although we always regret learning of another person having to deal with an AN diagnosis and the associated issues that can involve, we're pleased you discovered the ANA website and these forums.  Of course, you have our thoughts and prayers for your upcoming surgery (what surgical approach are the doctors using?) and I hope it will alleviate the troubling symptoms you're currently dealing with.

As for Neurofibromatosis (Type 2), an MRI with contrast should show that and if your doctor is concerned, he may wish to have you undergo annual MRI scans to stay on top of any possible tumor development in the future.  However, as you noted, this is a rare condition that you shouldn't spend too much time worrying about, but do be aware of the possibility that it could develop.   

Congratulations on your goal of attending medical school!  I hope you're successful with your studies - and thanks for the kind words about the forums. 

Jim

[Cheryl R]

I would not worry as such about your possibility of being NF2 as it is rare and only 5% of ANs end up being NF2.    If you have no family history of any, you would most likely  be the genetic mutation form of it.        The dr is only going by your age as the possible factor.   Many NF2's start at a younger age than the regular ANs.      However over time there has been several very young ANs here who have not went on so far to be NF2.          The biggest thing with NF2 esp if one is found to have 2 tumors at the same time which it sounds like you have not, is to maybe do treatment a little different to keep the best way to keep your hearing.    I ended up being NF2 at an older age of 51 with my first tumor already done at age 49 before the next showed up.      I have so far had 3.         One has the possibility of having a cochlear implant if certain tumor conditions are met and keep an intact acoustic nerve.    Younger NF2's also have the possibilty of other types of brain,spinal and some skin neuromas.  Eye problems.    With none of these present for you, you have the good chance of it not happening.         You will need to keep regualr MRI's in the future plus if note any symptoms showing up would know to be checked as small tumors can be treated with better chances of hearing preservation.                 I do know there can be life even with NF2.           I am a retired nurse and hope for the best for you with medical school!        I only retired from work before my last surgery.      Good luck with your surgery and ask us for any questions you have.                                Cheryl R     

[jaylogs]

Hi and welcome to the club! So sorry you had to find this, but there isn't a better place to be for information or just to vent.  As Jim stated, don't sweat it too much about the NF2, if that's what you have.  Stay on top of your MRI's and that'll give you some peace of mind.  I hope your surgery goes well...where are you getting it done at and what kind (middle fossa, trans-lab, etc)?  I am sure you've read up on all the advice given to people about ready to go in, if you haven't I urge you to search these forums.  When I went in it was pretty obvious who had taken the time to research and those who didn't. It was generally the more freaked out people that didn't!  Take care and good luck!
Jay