Author Topic: 6 months post op..Stay positive!!  (Read 4402 times)

Gr8fulDad

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6 months post op..Stay positive!!
« on: November 25, 2016, 09:52:45 am »
First, let me apologize to rm516 JLR and Bomberman for not responding.  I haven't been here in a while.

Tomorrow is my 6 month anniversary from my surgery date and I thought I would provide a small update.  Life is good....correction, life is great!!  For those of you who may be unfamiliar with my story, I was diagnosed with an acoustic neuroma in March of this year that measured 4.2x3.5x3.7.  Yessir....a biggy!!  I had retrosigmoid surgery on May 26 at Toronto Western Hospital with Dr. Gelareh Zadeh.  About 75% of tumor was removed and the bed of tumor left was zapped by Gamma Knife in on August 9.

Today I feel normal.  I don't mean the "new normal" or the "redefined normal" that people talk about.  I mean, I feel exactly as I did before the surgery.  The hearing in my right ear is better than it was before surgery.  I couldn't talk on the phone with my right ear and now I can.  I would go to a baseball game or other event and the person I was with had to sit on my left so I could hear them.  Now it doesn't matter.  I certainly don't have perfect hearing, but I am blessed to have what I have.  I have no facial nerve damage, no balance issues and no other complications or deficits.

The back right corner of my head is still numb from the surgery, but the area of numbness has slowly gotten smaller and now I am just starting to get some feeling in that last area of numbness.  I still have a resolving hematoma on the left side of my torso.  Nobody really tells you this before surgery, but lying in the park bench position for many hours (for me it was 13.5) really puts tremendous strain and pressure on your side.  I was terribly bruised and it was terribly uncomfortable for quite some time.  Anyway, for a resolving hematome....it's taking its sweet time to resolve.  It's a  tiny bit tender and just looks a little funny if I have my shirt off or wear a tight t-shirt.

The first part of my recovery wasn't easy, but it was certainly manageable.  I did, however, recover remarkably quick.  Here is a timeline.  I had surgery on May 26.  On June 18, I participated in the Toronto Brain Tumor Walk and was able to walk the full 5km and raised almost $7k for brain tumor research.  On July 7, I traveled to Michigan to see a rock concert.  On July 18, I started back at work full-time.  On August 2, I attended my first karate class.  On August 9, I had Gamma Knife.  On October 26 (the five month anniversary of my surgery) I received my blue belt in Karate.

I was so terrified when I was diagnosed and it was so traumatic for me.  Now, I look back and it was like a little blip.  Your chances of a positive outcome are greater than the chances of a negative outcome.  Stay positive!!!  I know it's hard, but do your best to stay positive as it really helps.  There is so much negativity out there and so much doom and gloom when you venture out into the internet.  Being diagnosed with an AN is SCARY!!! Everyone that had positive outcomes needs to post their success story, so we can help support others going through this and maybe make it a little less scary.

I try and go to every Toronto chapter support group meeting of the Acoustic Neuroma Association of Canada to tell my success story so others going through this hear something positive.  I have recently been invited to join the board of directors of the Acoustic Neuroma Association of Canada and I'm hoping that I'll be able to make a meaningful contribution.

Be well!!!
Diagnosed March, 2016 with a 4.2 cm AN

Surgery (Retrosigmoid) May 26, 2016 by Dr. Gelareh Zadeh at Toronto Western Hospital.  Hearing and facial function in tact.  Home 4 days later.
Bed of tumour left on the 7th and 9th cranial nerve but watch and wait for now.

v357139

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Re: 6 months post op..Stay positive!!
« Reply #1 on: November 25, 2016, 08:35:44 pm »
Gr8tful,
Congratulations on what sounds like a great outcome.  Especially with such a large tumor.  I agree with you that there are more good outcomes than bad.  That is a good thing for people who come to this site to consider.  I also had a big one, though not quite as big as yours, and I also had a great outcome.  Stick with doctors who have lots of experience, and you have a great chance.  Congrats again.
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!!

Jet747

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Re: 6 months post op..Stay positive!!
« Reply #2 on: November 26, 2016, 05:06:10 am »
Gr8fulDad,

Glad to hear everything is moving along the right track and good to hear back from you!!!

I was surprised reading your update with how similar our stories are...relatively large AN followed by RS followed by GK followed by a great outcome. 

Not sure if you will have a similar issue but about a year away from surgery (May, 2015) my scar was itchy, puffy and generally bothersome.  I had some cortisone injections directly into the scar and it made an immediate positive impact.  Swelling curtailed and itchiness resolved itself.

Good luck in your new BoD role and I'm sure you will make a positive contribution, desire is everything.

Thanks again for the update and keep us posted with how you are doing!

Best,
Jet
RS Surgery May 2015

GK Radiation October 2015

https://www.anausa.org/smf/index.php?topic=21969.0

Greece Lover

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Re: 6 months post op..Stay positive!!
« Reply #3 on: November 26, 2016, 08:55:05 pm »
Great news, glad to hear it!
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.

ccooper

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Re: 6 months post op..Stay positive!!
« Reply #4 on: November 28, 2016, 10:20:34 pm »
Great positive report! I also had a large tumor removed this year. I had a two month old at the time and was back to taking care of him at about two weeks, back to work at four weeks. I had a second surgery (long story!) five months later and had an even faster recovery and came out feeling better than the first. Running a few miles and hard core yoga within a few months. I appreciate that everyone is different but with the right attitude and willingness to push it, I think recovery can be a positive challenge :)
37 yr old female
3.4x3x2.6
Retrosigmoid February 2016 at UC Health
Oops they forgot to tell me tumor was left behind
Doubled in size
Re-do Retrosigmoid at House July 2016
SSD, Facial Paralysis but almost recovered

v357139

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Re: 6 months post op..Stay positive!!
« Reply #5 on: December 01, 2016, 08:34:15 pm »
Great spirit Coop I agree!!!
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!!