Another Newly Diagnosed....

[Monnie]

Hello!  I am writing this to introduce myself as a new member of the club!  I am a 40 year old Navy wife and mother of three.  I was recently diagnosed with a 3cm AN.  I hadn't heard of an AN before my diagnosis.  Prior to the MRI, I was constantly being treated for fluid in my ear.  I kept telling the doctor about numbness in my face and they never seemed concerned.   I have had numbness on the AN side for years.  It wasn't until last summer that I lost the hearing in my right ear and I have tinnitus that seems to be getting worse.  Poor balance is also an issue.  The specialist told me about this site and I am eager to get to know other people and have so many questions.   I am confident in the doctors that will be taking care of me.  So far, I have been told because of the size of the AN and my age, I will most likely be a candidate for trans labyrinthine.  I was wondering what to expect after the surgery.  I'd appreciate any information and look forward to meeting others that have gone through or will be going through what I am.
Thanks,
Monica

[Esperanza]

Hello,

I am sorry to have to say welcome on here.   However, as a newly diagnosed and sudden SSD sufferer all of which has happened within nearly 4 short weeks (and not dealing too well with the shock of it all either along with the tinnitus - oh dear!), I can tell you the people on here are wonderfully supportive and friendly.  It is a great source of information but make sure you find the threads with positive outcomes of surgery too in order to get some balance.  My AN is currently 10mm, small but deadly as I didn't have hardly any prior symptons.
I am not going to be a good wait and watcher as I am 44, also have 3 children, and feel I want to deal with this and move on with my life.   

How have you found coping with the SSD?  Are you in the US?  Where ever you are there seems to be a problem with getting the symptoms initially recognised by the medics.

Take care

[leapyrtwins]

Hi, Monica and welcome to our club.

It sounds like you are in the hands of some good doctors and your confidence in them will make things easier for you.  I'm not surprised that they are suggesting surgery; for an AN your size, radiation isn't usually the norm.   There are mostly likely others on this forum who have used the same doctors you are seeing and can give you some insight on them if you'd like.

There are lots of posts that talk about surgery, possible side effects, what to expect, etc., - you can find a lot of it by just poking around in different areas and reading the various posts.  Or you can look for something specific by using the search feature.   I know a lot of newbies get discouraged or scared by some of the things they read on this forum, so keep in mind that everyone's surgical experience is different and someone else's story won't necessarily be your story.

If you haven't already, you should contact the ANA and request the literature they have about ANs - it's very helpful.

Jan

 

[leapyrtwins]

I am not going to be a good wait and watcher as I am 44, also have 3 children, and feel I want to deal with this and move on with my life.   

Esperanza -

not to get off topic here, but if you aren't comfortable with watching and waiting, then why are you?  Your AN is considered small, but that usually doesn't mean you aren't a candidate for radiation or surgery.  Have you discussed one of these options with your doctors? 

I am 46 and have 2 children.  I had my surgery about 8 months ago when I was 45.  Although my AN was larger than yours, and watching and waiting wasn't really a reasonable option in my case, I too wanted to deal with it and move on - and I did through surgery.

In a few months I am having BAHA surgery to solve some of the issues I have from SSD, which is another part of my resolve to move on.

If you aren't happy watching and waiting, you should investigate other possibilities,

Jan

[Joef]

>>  I hadn't heard of an AN before my diagnosis.

  the same with all of us!!!

>> The specialist told me about this site and I am eager to get to know other people

really!!    good for him !!! lucky for you!!   most of us just were just lucky from "googling" and ended up here

Where are you? we have people from all over the US (and overseas) ... and have East and West coast lunches!!

Trans-lab (as we call it).. normally is used for the larger tumors or when the hearing is not worth saving.. as the inner ear is removed....  but... that gives the doctors the best view of the tumor.. and the best chance of removing the whole thing ....

Take a deep breath ! even at a larger size , you have time -- tumors normally grow very slow -- research here get other opinions -- send MRI copies to other doctors (doctors will give free "estimates")  .. and remember -- your not alone -- we have all been there and done that --- but most of all --- welcome!!!!

[Monnie]

Thank you all for responding so quickly and for the warm welcome.  Sorry to be meeting under such circumstances!  I am located in the Harrisburg, Pennsylvania area and see specialists that are affiliated with Penn State Hershey Medical Center.

I'm still learning how to get around on these message boards (I'm very inexperienced!) and on the site to read more.  I have searched on-line and can't seem to find some of the answers I am looking for.  One question being:  after trans-lab, will I still have tinnitus?  I think I will be able to deal with the loss of hearing after surgery, but the tinnitus is what bothers me the most.  Some days, I feel like I could scream!  Along with the noise of the television and the noise of five people in the house (none of us are quiet talkers), I find some times the noise is overwhelming and causes me to be extremely confused.

My ENT was surprised that the AN wasn't found earlier.  I blame that on being in a military family.  We move frequently so I don't get to know a particular doctor long enough for them to know my history and to see any significant changes.  We lived in Germany prior to PA and the military clinic was very small.  Once we moved here, after many visits with the military doctor and things getting worse, I asked if I could go off base and be seen by a specialist.  That is when the AN was diagnosed. 

So, one of my questions is, will the tinnitus be present after surgery?   Oh, and also, is anyone from the Central Pennsylvania area?

Monica

[Jim Scott]

Hi, Monnie:

I'm sorry you have a reason to be here (a diagnosis of an acoustic neuroma tumor) but glad you found this site and forum pages.  I think you'll find us helpful. 

There is a lot of AN information here and elsewhere on the internet.  Just type 'acoustic neuroma' into a search engine and you'll get quite a few pages of website links.  Frankly, I believe this site is the best and these forums, populated by folks who either have or had an acoustic neuroma, are invaluable .  We go beyond the clinical aspects of having an AN and help provide more practical information, especially helpful to the newly diagnosed, like you. 

'Trans Lab' is a common surgical procedure used to remove an acoustic neuroma tumor.  It is generally very successful.  However, the hard truth is that any AN case is always a minefield, of sorts.  Any doctor will tell you that this kind of delicate surgery carries some degree of risk.  The risks are relatively small, but they do exist.  After all, the surgeon is drilling into your skull and removing what is often a 'sticky' substance that is sometimes wrapped around vital nerves.  You certainly need to have confidence in your doctors and know that they have the experience and skill to perform this operation successfully, which includes a minimum of post-op complications.  Many of the posters here - including me - have undergone AN surgery and experienced a successful outcome.  We encourage you to read our stories for support. 

To answer your question regarding tinnitus: frankly, you'll very likely continue to have tinnitus even after surgery, as most post-op AN patients do.  It may subside a bit, but it rarely disappears.  However, imbalance issues usually do go away, although sometimes you need some therapy to get back to normal.  In any case, recovery from AN surgery, even an easy recovery, is measured in weeks, not days and sometime in months.   The good news is that you will recover and that what you have - an acoustic neuroma tumor - is benign and treatable. 

We stand ready to answer what questions we can and to offer support and advice if you need or want it. 

Jim

[lori67]

Monica -

Welcome from a fellow Navy Wife.  I blame my 15 years to get a diagnosis on the military healthcare systerm too - so you're not alone there.  I had always been treated for sinus infections, given the standard sudafed and motrin and sent on my way.  It wasn't until we got orders to Nashville and I had to see a civilian doctor that I finally got a diagnosis.

That said, I hope you are able to find the information you need.  This is great site for that - because I think you'll learn a lot more from people that have gone through it than anyone else. 

I had translab also - coming up on a year ago this month - and I'm doing well.  Still some minor issues, but all in all, I feel good and have learned to adjust some things to get to a new sort of normal.  I've always been very energetic - probably to the extreme - so chances are there were some things that needed adjustment anyway! 

Good luck on your search for information and let me know if I can help in any way.  Who knows, maybe we'll be stationed at the same place someday!

Lori

[Esperanza]

I think I will be able to deal with the loss of hearing after surgery, but the tinnitus is what bothers me the most.  Some days, I feel like I could scream! 

I feel exactly the same, just wish it could be switched off - not sure if mine is more linked to the feeling of pressure - still feel I have a plug or something in my ear that needs to be pulled out!   I know this constant feeling/noise causes the biggest problem with my day to day quality of life. 

Glad you are on your way to getting some treatment now.

If you aren't happy watching and waiting, you should investigate other possibilities,

Jan

You are right, thanks.  I am going back to see the local ENT specialist to chat things through. 

Take care all.

[elderbirds]

Hi Monica,
I am fairly new to this "club" too.  I also am in the process of meeting with various docs.  I live in Maryland (about 1 1/2 hrs from Hershey)  I am meeting with docs at Johns Hopkins and University of Maryland in Baltimore.  If you want any info on them, I'd be glad to share it with you.  I have 2 kids and am 39 years old.  Lots of questions!!
Hope

[FAITH40]

MONNIE AND MY NEW AN FRIENDS,

GOODMORNING TO ALL OF YOU! I AM TAMMI, SO NICE TO MEET YOU!! I AM 7 WEEKS POST OP NOW AND DOING GREAT! I UNDERWENT A 2.8 CM AN SURGERY OF 15 1/2 HRS. I WENT INTO THIS SURGERY VERY POSITIVE AND HAD LOTS OF FAITH IN GOD MY DRS AND MYSELF! I WAS AS PREPARED AS I COULD BE FOR THIS SURGERY. I READ LOTS OF INFORMATION, BUT NEVER KNEW ANYONE THAT HAD BEEN THROUGH IT.(I WISHED I HAD KNOWN ABOUT THIS SITE) MONNIE, WHAT YOU ARE HEARING FROM EVERYONE HERE IS TRUE, BUT HOW YOU HEAL IS DIFFERENT. WE ARE ALL DIFFERENT! KNOW YOUR DR. WELL(ASK LOTS OF QUESTIONS THATS A MISTAKE ALOT OF PEOPLE MAKE ) SO THEY ARE REALLY SURPRISED AFTER THE SURGERY! AN SURGERY IS NOT THE END OF THE WORLD! STAY POSITIVE AND TALK TO ALL OF US HERE , WE UNDERSTAND! GOOD LUCK WITH YOUR JOURNEY, SOMETHING GOOD WILL COME OUT OF THIS!!!

I HAVE NOT READ ANY POSTINGS ON NEUROMUSCULAR FACIAL RETRANING.. HAS ANYONE HEARD OF THIS? I HAVE AN APPT. THIS WEEK WITH A PHYSICAL THERAPIST THAT SPECIALIZES IN THIS AREA OF THERAPY. YOU CAN GOOGLE THIS AND GET INFORMATION ON WHO IN YOUR AREA SPECIALIZES IN THIS. THERE IS A CLINIC IN ATLANTA, GA. CALLED ATLANTA EAR CLINIC. A WOMAN BY THE NAME GAYE W. CRONIN OTD. OTR. SPECIALIZES IN FACIAL RETRAINING AND SUPPOSE TO BE GREAT WITH AWESOME SUCESS!! GOOGLE HER !

I HAVE BEEN TRULY BLESSED BY ALL OF YOU HERE. I LOOK FORWARD TO A CONTINUED  SPEEDY
RECOVERY WITH ALL OF YOU HERE TO TALK TO THAT CAN REALLY RELATE!!!

TAMMI

[Jim Scott]

Hi, Tammi:

I just wanted to add my voice to the welcoming chorus. 

I appreciate and share your optimism and trust that the neuromusclar facial retraining you're seeking will prove successful.  As AN patients, pre or post-op, we certainly can relate and hope you'll keep bringing your enthusiasm to these forums.   

Jim

[jtd71465]

Monica-

I live in the central part of the state, unfortunately it's NJ.   I'm sending you a note that I also sent this AM to another person in CA, if you have any questions don't hesitate to contact me.


Joe-

[FAITH40]

JIM,

THANK YOU SO MUCH!!!

TAMMI

[pearchica]

Hi Monnie et al!  When speaking with Stanford about cyber knife radiation- they told me the largest they had treated was a 3.6 CM tumor- so while size is a consideration, there are also other factors: age, position, balance issues or not, that kind of thing. So just another option to consider in your research- good luck.  Annie

Faith40/Tammi- glad to hear you are doing so well post surgery! we need to hear success stories like your's.

Take care all- Annie