Newly Diagnosed , 33 year old female, scared!

[MonicaC83]

Hi all,

I am so happy to have found this forum.  I lost hearing in my right ear about 3 months ago..I put off going to the doctor until my family finally made me do it . I didnt think anything of it, thought it was wax build-up..my family and I even joked about how I have too much wax in there.
Went to doc, Took the hearing test, failed miserably. Scheduled MRI. Went to hospital ER 2 weeks ago for the right side of my face going numb/tingly.  No pain, just feels weird! They ended up doing an MRI immediately and gave me the diagnosis of the Acoustic Neuroma on my right side/nerve. Size measures 2 x 2.2 X 2.5 cm.  I now have an appointment next week with the neurologist/neurosurgeon that my doctor recommended.  I have never had anything like this nor has anyone in my family.  I have no idea if theyll want to do surgery or not..I am so scared because ive never been in any health situation like this and surgery really freaks me out, esp brain surgery!! . I dont want more complications than I already have.  I have no balance issues or other symptoms other than the fact I have no hearing at all in my right ear (which Ive gotten used to last few months) and also half my face feeling tingly , some days worse than others but usually its fine.. Do you think Ill require surgery with these symptoms & being only 33 years old or do you think theyll monitor it? I guess I will know more after next week!  Im enjoying reading all your stories..It makes me feel better I am not alone...Thank you!!

[MonicaC83]

Also..Where do I get the info sent to me? I am in Wisconsin, thank you!

[Greece Lover]

So sorry you've had this diagnosis. Right now it is important that you get good healthcare information. Make sure the surgeon to whom you've been referred has a lot of experience with AN. Not sure where that would be in Wisconsin. I had surgery a few months ago  in Iowa City at the University of Iowa and I can't recommend them highly enough.

This is a tough diagnosis but we all get through it. I'm two months post op and rode my bike 15 miles yesterday. You will make it!   Feel free to PM if you'd like.

[sandyinwisconsin]

Monica,

I am from Central Wisconsin.  Let me know if I can help you.
I was treated with radiation by a fantastic radiation doctor from Madison.
My tumor is 1 cm.

Sandy

[ANER]

Sandy,

I was exactly where you were 10 months ago!  EXACTLY! Glad you found this forum.  Because of this forum AND a couple of FB groups (just search acoustic neuroma) and there are a few of them, I am handling my AN diagnosis much better. Albeit, anxiety at times can be hard, especially being newly diagnosed!  I remember wanting to take my boys to a local museum a few days after getting diagnosed and I was a disaster.  Anyway, take some time to research doctors.  From what I have learned the doctor's who perform the most surgeries have the best outcomes.  I'm only 37 and haven't really considered radiation at all but we each have our own personal decisions to make and each of our cases is truly unique and one of a kind.  I would recommend getting several opinions. I've gotten 4 and getting a 5th next month.  Lucky for you, the http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery Mayo Clinic in Minnesota is rated as the best Neuro-Surgery hospital in  the country.

Also, if you interested in my story I started a blog which I haven't kept up with but it has a couple articles I wrote in their.  http://braintumorproject.org/the-diagnosis/  I wrote about my diagnosis and then the 4 opinions I have received so far.  Good Luck, PM me, if you need anything.

[v357139]

Monica,
I echo the last person who said, the important thing is to speak to doctors with lots of experience and also great track records of success.  Since you seem interested in wait/watch, ask the doctors what they think about that.  You would need a periodic MRI, like every six months, to monitor the growth.  At your size I think they might or might not recommend wait/watch.  We could never tell you here, only a doctor can make that recommendation depending on what he sees on the MRI, etc.

I am proof that microsurgery is a great option, as I had a great result for my 3.5cm at House in CA.  Radiosurgery is also a great option, if you are interested in that.  Research those topics and visit some top doctors.  If you are interested in radiosurgery then find a great radiosurgeon and if you are interested in microsurgery, talk to a great microsurgeon.

Let us know how those visits go and what you are thinking.  We are here for you.  PM me if you'd like to talk.
Rich

[Cheryl R]

We here know what scared is when we got our own AN diagnosis.          I also feel Univ of Iowa is a wonderful place to go.       I have NF2 and have 3 tumors removed there.    I live in central Iowa.     Dr Gantz was doing 80 plus a year and Dr Hansen also a large no.          The MRI will give these neurotologists a better idea.        The otolaryngology /skull base tumor is the dept which does ANs.           They do many out of state patients.      They also are not for radiation so if you seriously want the tumor to stay and growth stopped then one needs to go to a dr who specializes in that or does both.   I am saying Gantz would say go with surgery and translab if you have already lost the hearing.       You may have already compensated some with balance issues due to the size of the tumor.     Some issues of how a tumor has damaged a nerve will not be known until they go in with surgery.         Chances are your tingly would stop.     The balance issues are temporary for most people and even the facial issues.    You have a good possibly of some balance issues and the chances are less for facial.    One reads on here of many with some issues but the ones who do well leave here.Any possible post op issue has to be told to you even if is not a common issue.               Keep asking all your questions and we usually have an answer on here.              I wish you well.                           Cheryl R

[MHope]

I was exactly were you are diagnosed 3 months ago and only 44. I suggest doing extensive research in the right places bc knowledge is power. It's is super important to have knowledge so when you go to talk to doctors you understand everything and ask the right questions. You will find different opinions everywhere. In the end it's what you are comfortable with and who do you trusts. I had various opinions between doing surgery or Gamma knife. Waiting is not a great option because being young it will continue to grow and you are already getting facial issues. I choose Gamma Knife, which I had this morning at UPMC. The best. I simply did not want surgery if I could avoid it. Good luck!

[UpstateNY]

MonicaC83,

Many of us were there, so know how you feel.  You will get through this.  As others have said, you have the option of w&w, surgery and radiation.  It is important to discuss your options with various physicians in high volume facilities.

Radiation is typically recommended for asymptomatic patients, since its goal is to keep your symptoms from getting worse (long term) and to stop the tumor from growing, but you should certainly discuss this with your physician if you are considering it.  Your young age may also play a factor in your decision.

I had successful surgery at the House, so would certainly recommend sending your images to both USC and House Clinic for free phone consultations.  These are two top facilities that can provide additional input.  UPMC and NYU will also provide phone consultations for gamma knife treatment.

I wish you the best in your decision.