My Heroes are Brain Surgery Patients.

[robynabc]

Yesterday was my son's one year Anniversary of Surgery.  I had a very hard time and I think Eric did too.  We did not talk much about it but I was surprised how hard it was for me remembering that surgery a year ago.  As much as Eric did very well, considering.  He still has coughing and voice problems.  It has been a year and in every other way he is doing way better than they ever thought he would.  I know you must all understand that you never think it is going to happen to you or anyone in your family.  I never asked why my son because I know you can't ask that. 

I just wanted to thank you all for the support Eric and I have gotten from knowing you all.  I am in awe of all of you.  You have no idea how much I respect everyone here.  And I am so thankful for your friendship and inspiration you have given to me and Eric.

I know I am not the postie here but you all accepted me just like I was the one who had surgery.  I remember the very first post I posted on here begging for help with a young kid with a "huge" 4.5 tumor and recieved instant help and information that you just cannot get anywhere else. You guys have dealt with amazing issues and have made it through with such courage.  I hear so little complaining.  Including from Eric.  You are my heroes.   I really love you all.   I am so thankful that he is alive and well.

Peace.

Robyn

PS  One thing Eric says he will always remember.  ON his way into surgery the very last song he heard with two hearing ears was  "comfortably numb"  on his ipod.

[Jim Scott]

Robyn:

Thank you for your kind and sincere words of appreciation.  I'm so glad Eric is doing well, despite the lingering vocal/swallowing issues.

We share your joy for Eric's recovery.  I'm so glad this site and the forums were of such a help and encouragement to you, Robyn.  Your admiration is reflected right back at you.  You're obviously a loving, dedicated mom and Eric is fortunate to have you, as you are to have him.  May God bless you both. 

Jim

[marg]

Robyn,
    You are right  - this forum is a wonderful support to all involved in AN problems... those with the AN and the families and friends.   Glad Eric is doing well.... and you are ok too..   ....
marg

[lori67]

Robyn,

Thank you so much for your kind words.

Please know that you are as helpful to us as we may be to you - it's good for us to hear how things are from a caregivers point of view.  I know that the AN journey involves the whole family, and I believe in some ways it's harder for you than it is for us AN-er's.

I'm glad that you and Eric are doing well.

Lori

[mom of AN pt.]

I also am a mom to an AN patient.  Amanda was only 15 (three years ago) when she had her surgery.  Her tumor was also large and took two surgeries to remove.  She sadly lost her hearing in one ear as well...but we have awesome doctors at the University of WA Medical Center here in Seattle, so she was spared having facial problems.  Her balance is nearly normal and she has been able to do some gymnastic moves and flips again much to our surprize.  Her balance problems were our major tip off to problems. 

We also don't talk about it a lot but it's always there...when we go to a noisy restaurant and have to think about where is the best spot for her to sit etc...  forgetting and whispering to her in a movie.  It's still heartbreaking at times, but I know... and she knows, it could have been worse. 

What a trauma for a mother.  How many times did I wish/pray it was happening to me... instead of my child?   

But...it's now 3 years later. Amanda is 19 now and a student at the University of WA., doing really well.  Pretty and smart!  Let's both hope that in our kids lifetime there may be help for the hearing loss!  (Amanda never used her ipod again after surgery).

She just had her three year MRI and there appears to be no growth. Now she has graduated to MRI's every two years rather than annually.  Its a small milestone, and we are so grateful. So "Yay"...things are looking good.

(had to remove the private email address entry, as site rules note no private info is to be publically noted, but... as a recommendation, you can PM/email behind the scenes here to share private info...... thanks for understanding. Joef)

[lori67]

Hi "Mom"!   

I'm glad your daughter is doing well.  If she's doing gymnastics again, I'd say she's doing VERY well!

I can't imagine how hard it must have been on you - and still is - I know I've always told myself how thankful I am that this happened to me and not one of my kids.

I know that you must have been a wonderful support for your daughter or she wouldn't have been doing so well today.   You can't make this journey alone!

Good news about Amanda's last MRI!  Let's hope they all stay that way!
Lori

[Jim Scott]

'mom of AN patient':

Thank you for your contribution.  The story of your teen-aged daughter's AN, surgery and apparently complete recovery is very poignant.  I'm so glad you decided to share it with us.  We need as many encouraging stories here as we can get! 

That your daughter is now 19, attending college and doing gymnastic exercises is awesome!  Ah, the resilience of youth! 

Although SSD is a handicap - and I speak from experience - many famous people are deaf in one ear (not due to an Acoustic Neuroma) and function just fine.  Halle Berry is one, Rob Lowe is another.  If she ever chooses it, BAHA hearing aid units are quite effective.  I think Amanda is going to do just fine. 

I applaud your compassion for your daughter and trust that her future MRI's will continue to show no growth.

Jim

[leapyrtwins]

mom of AN patient -

regarding iPod use.

Post op I realized I wasn't getting the normal stereo sound I was used to before I was SSD.  I thought I'd just have to live with the strange sound quality, until someone on this forum recommended a mono plug.  I've been using one with my iPod for about a year now and it works great and really improves the sound.

The mono plug is basically an adapter that plugs into the iPod; you then plug your ear plug(s) into the adapter.  I bought my mono plug at RadioShack, along with a single ear plug, for less than $6.  I believe mono plugs are also available at Best Buy and Amazon.com

Jan

[robynabc]

mom of AN patient -


Hi,

I cannot imagine how hard it was to go through two of those surgeries.  As a mom,  I know how hard it is.  I am very glad your daughter is doing so well.  I am sure she will continue to do so.   

As far as the hearing.  Eric has a bit of a time the first few months adjusting I know there were a couple of times in really loud places he had issues but has adjusted.  We got the mono adapter for the mp3 player and Eric rarely mentions it unless you bring up tinnitus and that will make him notice it.  We were at an advantage because Eric's father (my ex) has been deaf in one ear his whole life and we knew it could be done and was not much of an issue for him.  And it hasn't been. Of course,  it may have been a little harder losing it all at once.  He did not lose any hearing before surgery.   My son's face and life are the important thing.   And even then he takes on whatever is given him.  I am so proud of how he handled it. 

I want to thank you for sharing your story.  We will always be linked as mothers.  We are lucky.  I thank god we both have our children.

Peace and love.

Robyn

[Jeanlea]

I think being the mother of an AN patient would be harder than being the patient.  I'm sure your children are happy to have such wonderful support from their mothers.   It's good to hear that both of them are doing welll.
I had minimal hearing loss before my surgery and none afterwards.  I decided to get the TransEar hearing aid.  It gives me some extra sound on my deaf side.  I chose that because it did not require surgery.  That way if something newer and better comes along I'm ready.

Thanks for sharing your stories.

Jean

[robynabc]

HI,

Did you mean that you have no hearing or some?    I was under the impression that you would not be able to use a hearing aide with no hearing.  Also,  for the people on here that have hearing aides Energizer is giving free samples of hearing aide batteries on our site. Here is a link http://recritique.blogspot.com/2008/07/free-energizer-batteris-for-hearing.html

Recritique.com
Restaurant Coupons, Freebies and More.

[Jeanlea]

Hi,

The TransEar is a special kind of hearing aid that works like a BAHA.  It works through bone conduction.  It's for people with SSD.  I haven't seen any studies, but from what I've read from other people's experiences I would say that it is very similar to a BAHA without having the surgery.  You may have to work to have it covered by insurance.  If you come at from the prosthetic direction I think you may have better luck.

Will I lose my identity if I sign up for the free batteries? 

Jean

[robynabc]

Being 19 Eric would rather not hear than have that big thing on his head.  Actually,  he adjusted very well to the hearing loss.    I am pretty sure your privacy should be fine with the battery sign up. 

[leapyrtwins]

Being 19 Eric would rather not hear than have that big thing on his head.  Actually,  he adjusted very well to the hearing loss.   

Robyn -

by "big thing" are you referring to the BAHA?     Actually it's quite tiny.

I'm glad that Eric is comfortable being SSD - lots are - but if he ever gets to the point where he wants to look into a BAHA, please assure him that it's not that big.  Some of us BAHA users have posted pictures of our processors, if he'd like to see visuals.

The BAHA - and the Transear - aren't for everyone, but they are both excellent options for SSD.

Jan

[robynabc]

Hi Jan,

The picture we saw was like a huge box and was very visible.  Is that what the BAHA looks like?   I guess the visibility of it was not something Eric was not interested in. 

Can you tell me how big it is?

Eric's biggest problem is with that damn throat nerve.  I don't know what number it is.  But he coughs when he eats and talks too much and it isn't improving since  a few months.  I know that is going to be hard for him if it doesn't get better.  They kept assuring us that it should get better but it hasn't.  And they said this is the only time this complication has happened. 

Sorry ,  I might be venting a little.