Author Topic: Newly Diagnosed , 33 year old female, scared!  (Read 5081 times)

MonicaC83

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Newly Diagnosed , 33 year old female, scared!
« on: July 26, 2016, 02:26:54 pm »
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!! :o. 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

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Re: Newly Diagnosed , 33 year old female, scared!
« Reply #1 on: July 26, 2016, 02:38:28 pm »
Also..Where do I get the info sent to me? I am in Wisconsin, thank you!

Greece Lover

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Re: Newly Diagnosed , 33 year old female, scared!
« Reply #2 on: July 26, 2016, 06:06:47 pm »
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.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

sandyinwisconsin

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Re: Newly Diagnosed , 33 year old female, scared!
« Reply #3 on: July 26, 2016, 08:18:30 pm »
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

1 cm AN deep in the boney canal.  Treated with 26 treatments of radiation in December, 2013.  Please pray with me that this worked.

ANER

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Re: Newly Diagnosed , 33 year old female, scared!
« Reply #4 on: July 26, 2016, 11:00:51 pm »
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.
Diagnosed 10/22/15  11-8-7mm
Watch and Wait as of 11/9/15
Had a ride in the MRI on 5/2/16 with no new growth.
Riding this Watch and Wait Train until May 2017.

v357139

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Re: Newly Diagnosed , 33 year old female, scared!
« Reply #5 on: July 28, 2016, 06:43:32 pm »
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
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

Cheryl R

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Re: Newly Diagnosed , 33 year old female, scared!
« Reply #6 on: July 28, 2016, 07:07:28 pm »
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
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

MHope

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Re: Newly Diagnosed , 33 year old female, scared!
« Reply #7 on: July 29, 2016, 09:38:16 pm »
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

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Re: Newly Diagnosed , 33 year old female, scared!
« Reply #8 on: July 29, 2016, 10:24:48 pm »
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.
« Last Edit: July 29, 2016, 10:51:39 pm by UpstateNY »
Apr 2015: Diagnosed with 8mm AN at age 49
Oct 2015: MRI showed growth to 12mm
Feb 2016: Completely removed via Transcochlear approach at House Clinic; no facial/eye issues, balance improved
Aug 2016: MRI shows no regrowth/residual tumor

My story:  http://www.anausa.org/smf/index.php?topic=22581.0