Just diagnosed!

[janitorx]

Hi!  I just found out yesterday I have a 4cm acoustic neuroma and will meet with a surgeon on Tuesday!  I just started having difficulty hearing about two/three months ago.  I am very frustrated that it grew this large over several years, but I never had any prior problems with hearing, balance, etc.  Even with the AN, I have been able to run every day, go to work, drive, etc.  I am 35 years old and do not have any major health problems.  I am amazed I do not have more severe symptoms with such a thing inside my head!

I am very scared about permanent facial paralysis.  Have any of you had an AN this large and remained more or less unscathed after surgery?

I just don't know what to expect; I've never had surgery before.

Thanks so much in advance! 

[Obita]

Hi janitorx and welcome -

Sorry you have an AN but we are glad you found us.  You will be too!!

My AN was 2.5 cm and it came out easy.  I had some facial temporary facial weakness that happened about 12 days post op.  It is normal.  I did have all sorts of facial twitching prior to surgery because my facial nerve was stretched from the AN.

Size does matter but so does the location.  If your AN is not messing with the
facial nerve, you could luck out.  Most people don't have permanent facial paralysis. 

Stay positive and good luck with your appointment.  It is VERY OK to ask how many AN surgeries the surgeon has done and what the outcomes have been with his/her prior patients.  Experience with this type of tumor is everything.

Are you in the USA?  With any luck, one of us will live near you and know your surgeon. 

Kathy
 

[Jeff]

Hi janitorx,

I had a very large tumor removed in 2 stages. Before the first surgery (like you, this was my first surgery ever), I had no hearing loss, some tinnitus, and some balance problems. After the 2 surgeries, I am deaf on the affected side and have a dry eye. I have no facial paralysis whatsoever. So, good outcomes do happen!

Feel free to ask questions. There a great number of people here who are supportive and eager to help

Best wishes,

Jeff

[janitorx]

Thanks so much!

I will get to pick up my MRI images tomorrow morning.  I guess I really won't know about where it is located until I see the surgeon on Tues.  My surgeon has a pretty impressive CV.  Still, I will make sure I have a list of questions typed out this weekend. 

I would be very surprised if it was not pressing against the facial nerve--it's pretty large.

I'm totally fine with complete deafness in the affected ear; I can and will adjust.

I just started having some facial numbness yesterday, but I wonder if it is psychosomatic.

[janitorx]

I'm screwed--I just know it.   

[ppearl214]

I'm screwed--I just know it.   

No you aren't as we all are living proof that we endure

Welcome janitorx.  I had radiation (radio-surgery) so I cannot say from a microsurgical standpoint, but what all have shared here will hopefully help you in your research.  We're here for you ... and no, you are not screwed   You will endure just like the rest of us and we're with you during this journey. 

Hang tough!  Again, welcome!
Phyl

[janitorx]

I am seeing an MD/PhD who specializes in AN's, facial nerve function, Bell's Palsy, cochlear implants, etc.  He is barely 40 years old and is very active in his field.  I am looking foward to meeting him.  I have sucky insurance--health savings plan with a high deductable (3k).  Which leads me to my next point, in the midst of all this, my husband and I have job interviews lined up in 11 days!  If we accept, we can start July 1st which will give us time to sell the house and move.  I am afraid to tell my prospecitve employer at this point b/c I do not want anybody on the search committee to feel sorry for me. 

I will have more answers after Tuesday.  I'm glad I found this place to get some excellent advice.  Thanks so much!

Sorry about the freakout   

[Dantheman]

Hi janitorx,

Good insurance helps...but the recovery period for microsurgery is usually 8-10 weeks. If your husband has decent medical insurance and you are established at your present job, you may want to hold off on the interviews. If your prospective new job has great insurance that you will be eligable to use and your Dr. thinks you can wait then you do what you have to do.

See what your Dr's say or suggest.

God Bless,

Dan

[Jim Scott]

janitorx:

Hi...and please don't panic.  You are not 'screwed' at all.

Just last year, I had a 4.5 cm AN tumor de-bulked (hollowed out) via (retrosigmoid) surgery and then radiated by Fractionated Stereotactic Radiosurgery.  I suffered absolutely no facial paralysis.  My surgeon employed nerve monitoring and the FSR treatments were highly detailed and plotted to avoid the facial nerves.  It worked.  My pre-op symptoms practically disappeared and now, nine months later, I'm pretty much the same as ever and no one would know I ever had this condition.  Yes, I had some medical bills but they will accept monthly payments if you ask and don't renege on the agreement.  Remember, you have a benign tumor - not cancerous - and it's treatable.  You could easily have a very good outcome from surgery.  Do the research, have more than one consultation with a neurosurgeon and choose your surgeon carefully, asking the 'right' questions, as I trust you will.

This website - beyond the forums - is a fount of information.  I suggest you peruse it.  Knowledge really is power, in this case.

Best wishes as you continue on your personal 'AN journey' - from those of us who have been there. 

Jim

[janitorx]

Well, I just got a copy of my MRI and it basically looks like a golf ball sitting in my head.  I also have the distinct honor of having the largest AN the radiologist has ever seen.  The radiologist does not understand how I have been able to function and why I only started having symptoms only a few months ago.

Jim,  Thanks so much for sharing your story!  You just gave me some more questions to ask the neurologist.  I strongly suspect there is no way to take this whole thing out at once.

I work in academia; the rules are a little different and I am asking some colleagues about how to handle this.  The job I am interviewing for is a good one and I don't want it to slip away!

[janitorx]

Well, I just received the radiologist report.  If I understand the report properly, he states the size is actually 2 cm X 2.6 cm, but classifies this as "huge".  On the other hand, my ENT told me it was 2 inches (4 cm).  Thanks for the confusion, docs! 

So, I have no clue how big it is.  Great.  I hope I will find out more on Tuesday.

[Obita]

yeah janitorx!!  its a whole new ballgame now!!  WOW.......medium sounds
sooooooooo much better.  Good luck Tuesday, Kathy

[Battyp]

I'd go with the report.  Which is why your symptoms might not be as bad as you'd expect with a 4CM one.  Crazycat had a 4CM one and he's doing quite well. He jogs and runs (I can't  LOL)  You are not screwed!  But you are allowed a freak out and I expect you to have a few before you settle on a treatment.  Just know we are here to help you through 

[janitorx]

Thanks for the link, Brucifer!  I was able to find a CK clinic in my state.  I will ask about non-surgical options because mine is clearly medium sized. 

In addition to incorrectly telling me the neuroma was 2 inches, my ENT also had my incorrect DOB on the form and totally screwed up the name of my GYN.   My GYN has a very simple phonetic name! 

I feel much better about this, but I am still bit anxious because I want to attack it before it grows even more.

May I ask a somewhat silly question:  Is it possible that the AN may contribute to psychological problems before one knows it is hanging around?  Mine is located on the right side of my brain.  I did notice I've had moderate depression for about 1.5 years prior to my diagnosis.  I was just wondering if the two are related.

[er]

no your not
just have faith, good doctors,and friends and family that still see you the same as always
I know that is what i've gone through,but for myself i tended to feel like you