Success stories?

[pjb]

Hi,

My name is Rachel. I don't feel I am a success story. I have had 2 acoustic neuroma brain tumors. I am currently 22 years old. My first tumor was found in 1997 when I was 8 years old. The tumor was found when I failed a hearing test in my left ear at my elementary school. Everyone was required to take 2 hearing tests annually. I went to a neurologist familiar with acoustic neuroma tumors and he said I needed to have surgery as soon as possible. My parents wanted me to wait two months until I winter break. After the surgery I was completely deaf in my left ear.

In 2002, I woke up one morning and had complete paralysis of the the left side of my face. I received some acupuncture treatment from my family's chiropractor, most of my facial movement was restored. I was thrilled when I looked in the mirror saw I could slightly smile on the left side of my face.

In 2003, I had a BAHA surgery and the first few weeks it was great. Then I started experiencing unbearable pain and eventually I could not use the BAHA or touch the area the screw was implanted. I had my surgeon remove the implant when he removed the second tumor.

The second tumor was found in 2009 when I was 19 years old. I noticed that I was experiencing temporary deafness in my left ear. They found no evidence for this, but decided to give me an MRI. They found the second tumor, it grew from the remains of first tumor left from the surgery in 1997. This tumor was on my facial nerve. When this tumor was removed I lost movement in the left side of my face. This time I needed to have a metal weight surgically implanted in my left eye lid. This allowed for me to completely close my eye lid.

The last brain surgery intensified my head pain. I was diagnosed with chronic migraines almost 2 years ago. I was relieved to find a doctor I told my symptoms to and said he understood and my symptoms made sense when the many surgeries I have had.

After all this I remind myself of all I have experienced and all I want to experience. After my last brain surgery in 2009, I decided I would live my life for me and let go of fearing a 3rd tumor. I am in graduate school for a masters clinical psychology and I plan to live my life with no fear of tumors and acoustic neuroma.

After writing all this I feel I can consider myself a survivor of 2 acoustic neuroma brain tumors.

Sincerely,
Rachel

I just had to write and say I admire you for what you have gone through at such a young age and your positiveness is sure to help with your well being and others that there is life after an AN and some with 2 ... Continued good luck with your education and health positive thoughts there is NO number 3 in your future life will be good.

My thoughts and prayers will be with you.

Best Wishes,

[Jim Scott]

Hi, Rachel ~

Thank you for sharing your AN experiences with us.  Although you've had some daunting challenges at a young age you have apparently met and conquered them with perseverance and courage that is inspirational to all of us.

Your positive attitude and determination to live your life without fear and anxiety over things you know you cannot really control is exemplary.  I wish you relief from your migraines and further facial recovery.   As your life unfolds before you I'm confident you'll live it to the fullest despite any impediments or future challenges that may arise. 

Your contribution to the AN forums is much appreciated.  Thanks, again. 

Jim

[MDemisay]

Dear Rachel,

WOW!  You seem to consider yourself as not a success story. In that many of us have had multiple surgeries here we would not be considered success stories either. Here is where we differ however, it surely shows in your story that you are angry at your circumstances, anyone who is taken out of their childhood abruptly, and forced to consider their own mortality would be.

Life is a crapshoot! Why we are here has yet to be revealed to us on the final day. It is ok to be bitter at what life has thrown at you!

What seems like a long time ago (1970) for me (I was 13) I was diagnosed with having an AVM at the time I didn't know what that was or that the treatment would contribute as well as radiation in dental x-rays would preclude the development of an AN in 2004 or another regrowth in 2012 am I bitter about it?

No, I would say I am not bitter about it. Would I have changed it were it possible had there been the information out there at the time? Yes, obviously!

Each day that we enjoy each others life stories on this forum is another day to be cherished. That in itself, by itself is a success story.

I am glad that you shared your story come back often and share your frustration here you are among friends who will be non-judgmental!

Mike

We are all going through this fantastic journey together! You are not as alone as once you may have thought! That is a success story as well!

[Kathleen_Mc]

I don't know if others would consider me to be a "success story" but I do.
When I was 23 my AN was found, it was within mm of pressing on the brain stem and surgery was my only option, my surgeon said I had 50% chance of surviving the surgery but certain death within a few months without surgery.
I survived a lengthy surgery, was home in my own bed 10 (I think) days later. I have most of the aftermath complications of AN surgery but I still concider myself a success story, I cheated death!
Kathleen

[JWW]

Trying to connect the dots: So they think multiple dental x-rays may cause AN (via radiation) but AN's are also treated with radiation! How confusing is that!!!

Diagnosed: March 19, 2012 with L. AN 10mm x 6mm x6mm., mild hearing loss on both sides, mild balance issues, mild dizziness, allergies, multiple dental x-rays on the left side over the past 10 years, wait and watch....checking out doctors plus CK and FSR.

FSR recommended to save my hearing: 28 sessions, 5 weeks, 5 days at a time for 10 mins. a zap!

JW

[Kelly718]

I was diagnosed T with a large AN at 26 years old after an MRI because I was experiencing ringing in my left ear. I was in shock to say the least. Due to the size, surgery was my only option. I spent the weeks leading up to my surgery searching online for stories and agree that it scared the Sh*t out of me! I actually arrived at the hospital and they would not do the surgery because I was runnung a temperature! My luck! Another 2 weeks of agony and anxiety ensued. Finally, I had my 14 hour long surgery on March 7, 2007. They removed 98% of it, leaving a sheath to protect my facial nerve. The first weeks of recovery were tough. Balance issues, facial paralysis, sdjusting to SSD...but I bounced back quickly and aside from SSD, which doesn't affect me much at all and a little dry eye, I am back to my old self! I went on to have two beautiful children, 2yrs and 5 months and to continue my teaching career! With the right surgeons, hope and faith, you will be okay!

[PaulW]

I had Cyberknife 21 months ago.
Before treatment I had moderate hearing loss, mild tinnitus, that plugged ear feeling, wonky head, was lacking energy, and for a while had problems typing, and words somehow came out wrong while speaking. Balance also was not great.

Straight after Cyberknife all my symptoms got worse. Then slowly things got better.

Now, my hearing is back within the normal range, tinnitus is gone, balance is good again.

I feel very fortunate indeed to have my hearing improve back to normal levels, and all of the other annoying symptoms disappear.
I still get the odd day where things don't feel quite right, like very mild tinnitus and my balance being a bit off, but I feel that I am still improving after 21 months. I am pretty close to a full recovery, with no symptoms on a majority of days, and I really didn't think that was possible when I started this journey.

I know that hearing can take a turn for the worst with radiation even after 21 months.. fingers crossed it remains good.

[ppearl214]

Paul,
Continued wellness path to ya!

I quoted Paul for a reason. I just celebrated 6 years (wow! ) post Cyberknife and all that Paul noted sounds about right for me... even when I was at the 21 mos point... and now 6 years later........ for me....  according to all of my AN doctors, I'm a "done deal."

As we know, individual results may vary for a wide variety of reasons..... and can only hope that regardless of treatment choice made, that the outcome is a positive one.

Phyl

I had Cyberknife 21 months ago.
Before treatment I had moderate hearing loss, mild tinnitus, that plugged ear feeling, wonky head, was lacking energy, and for a while had problems typing, and words somehow came out wrong while speaking. Balance also was not great.

Straight after Cyberknife all my symptoms got worse. Then slowly things got better.

Now, my hearing is back within the normal range, tinnitus is gone, balance is good again.

I feel very fortunate indeed to have my hearing improve back to normal levels, and all of the other annoying symptoms disappear.
I still get the odd day where things don't feel quite right, like very mild tinnitus and my balance being a bit off, but I feel that I am still improving after 21 months. I am pretty close to a full recovery, with no symptoms on a majority of days, and I really didn't think that was possible when I started this journey.

I know that hearing can take a turn for the worst with radiation even after 21 months.. fingers crossed it remains good.