FaceBook Dialog on Traumatic Brain Injury ( 11MAR2013 )
Help raise Traumatic Brain Injury Awareness
My diagnosis was “acoustic neuroma”… Initial symptom was hearing loss in one ear. If you or anyone you know has hearing loss in just one ear, give it immediate attention….because if caught early, there are nonsugical treatments.
In my case the tumor was large, so my only option was immediate surgery…it was crushing my brain stem…without the surgery, per my surgeon, I would soon not be able to breathe (ha…with or without scuba gear)…
So in my case where I’d been concerned about potentially having a hearing aid, I learned it was much more serious. My case was rare because my slow growing tumor had been present for many years, without any symptoms… also about the time I was checking into the hearing loss… I also noticed a few balance / stumbling issues as well as tingling fingers & toes… All very intermittent events, barely noticeable…. telling this so if anyone else happens to have this…get it checked.
Post-op I am deaf in one ear (right ear) but cherish the 100% hearing in my good ear. Fine motor skills improved from not being able to write, to writing & drawing again…not as good as before but I am thankful to do as much as I do…. Truth to that old saying ‘ you don’t know what you’ve got till its gone”…
Walking improved from walker to cane or no assistance at times. I look fine on the outside usually…there are wobbly times though with my balance. Rehab has plateaued so those exercises are done on my own at home.
My chief complaint is the fatique from ongoing dizziness & nystagmis coupled with a head pressure…. No fix for any of that other than pain killers, which have various other side effects besides dizziness….nothing more can be done…. So although the Medical field/ insurance companies are in a grey zone in cases like mine (ours)… We struggle daily with issues others do not, cannot, understand …
I wish there was a way to convey understanding….
If you are one of those people trying to get a grasp on understanding it… Just know this, any small kindness you offer is not unnoticed…. You do not need to have the experience yourself just be nearby for those on this ‘secret’ journey… kindness & compassion, respect & love are most helpful… For people on this journey know there are no answers, and recognize it as a situation over which no one but God has control…. Frightening for certain… But so worth the fight…never give up, take baby steps each day & fight… You know firsthand life is not fair… So fight!
Make peace with your feelings, it is no ones fault this occurred …if you need to blame someone, then blame God… Cause he/she has a purpose for eveything…
Perhaps focus on your purpose and find a small thing you enjoy…find comfort in knowing you are a part do God’s plan…
Even if days/nights are a struggle…
Be positive and fight…
And do NOT be concerned with those people who do not understand …that is not important.
Just be glad, and proud, that you did the best that you could that day…no matter how small…only you know where you’ve been and the triumph of passing many milestones. These statements are just IMO opinion…I focus on the positive cause the dark side of pain will eat you alive if you let it… Don’t let it….FIGHT!!!…this is what I do.. Not all can fully be explained.
Not sure this will help any of you but giving up an active life is diddicult. I believe the key is not to give up on life period. Yeah… I have had much loss… my job…will never garden, dive, golf, bike, hike, etc etc… But after much time rehabbing I found myself in plateau territory (better than decline territory) and renewed many interests and reconnected with family, friends, colleagues via Facebook, SoundCloud & LinkedIn… I am so very thankful. Plus my church broadcasts services via their website… I mention this because an overwhelming nightmare for me in this journey was going from a very active/demanding work life to suddenly finding myself home alone facing challenges I never imagined would happen to me…or anyone.
The technology of social media has soothed my heart & soul and lifted the isolation… I cannot express how important this might be to your loved one in a homebound situation. In addition, KidsDoodle & PicCollage apps on iPad have been invaluable to me…very easy for any age person to use. Sorry, to be so lengthy, got caught up in the spirit of sharing… Hope this might be helpful.
My favorite free links are…
MRI of my large tumor before surgery & Discussion of Acoustic Neuroma:
youTube Video does not totally show my unbalance, dizziness, head pressure (scar tissue & nerve damag), difficulty with fine motor skills/coordination, intermittent tingling in right foot & hand, constant numbness in right foot, vision nystagmis, fatigue….but MANY other pains have subsided thankfully…. Improvement seems to have plateaued 3-years post op. Hearing issues involve things like not being able to locate a direction with the sound, or not hearing well in a noisy environment… Or not hearing at all if my left (good) ear is blocked by a pillow… Which happened two weeks ago when I did not answer the door or phone… So the Homecare agency called the rescue squad… I could not hear those sirens either… I just happened to move my head to check the clock…then I heard the phone ringing and sirens blaring in the background… As I answered the door, I learned that the ambulance was there for me… I felt terrible not to have heard the phone or door… And for causing such concern… my aide was truly shaken,…. as was I in learning of the circumstances.