What is the BEST and the WORST of this journey???

[Palace]

Tim


I'm just adjusting to the one sided feeling.  It feels so lop-sided, the fullness is huge and noises so loud.  My heart was touched when I read you note.  I "will" keep you in my thoughts and felt your deep pain of being totally deaf after surgery.  (being terrified)  I can undersand as, I just have single-sided and it is hard for me to adjust to. 

I'm having my hardest time (or second hardest, really) of this journey.  The unknown, then the long wait for treatment was the worst but, I'm in so much pain now.  My cheek was unbarable today along with my ear feeling like it will blow up, 24/7 now.  I think I may call Stanford about it tomorrow.  I can't take steroids and don't want anything with that Acetimetiphen (sp?) in the pain drug.  I know I need a heavy anti-inflammatory.  I'm going nuts, myself right now.  I haven't been online much, lately.  (somewhat sad how this is all playing out)  I'm hoping for changes as the tumor dies.

For you my friend you have my heart tonight and love sent above.  I really felt your words and as I'm sufferying so, it helps me feel for you ever the more.  I'm rather "down" tonight wondering if this is how I will be left.  (mega full ear and the extreme pain)

Hopefully something can be implanted in your ears to hear! 

All paws X for you.........



Palace

[Obita]

Tim:

Your doctors will do anything and everything to save your hearing in one ear.  You can count on that.

Huge hug from Minnesota, Kathy

[Battyp]

Tim I'm sending good thoughts, heavy prayers and huggles your way today as you journey to moffitt!


Palace I read that if you lose hearing in both ears you can have the cochlear implants done which are also suppose to help minimize tinnitus.  I guess after I read that I figured I had an option if I went deaf so I didn't worry as much. 

Hugs to help you feel better!

[okiesandy]

Gosh this is really a good thread,

The Worst: BRAIN TUMOR, OMG I am dead. Decisions, decisions, surgery, radiation, ignore it, surgery, radiation can't ignore it.
                 Dumb friends and co-workers. Single sided deafness, balance problems, memory problems and worst fatigue ever.
                Finding  out I also have AIED in my only hearing ear and trying to deal with being totally deaf. (Makes single sided
                deafness seem very small issue). Mean and out of touch doctors.

The Best: Treatment behind me, I have grown stronger and more confident. I no longer have to think any doctor has   
               the last word in my treatment or recovery process. And the very best of all is the truly wonderful AN friends I have made.
               I have found the most remarkable people during this journey. If I am feeling down or have a wonderful day, I can call or
               email them and they are with me all of the way.  I have found a renewed joy in life. Is it the army that says, "Be all you
               can  be!"? I don't intend to wast a day.


Hugs and Blessings,


Sandy

[Pablo]

WORST: Finding out about the tumor, me- as a musician who also records and mixes music material - long term plans seem very grey, like a runner without a leg.

BEST: First time ever I've been through a critical health condition, discovering my ability to handle things without going nuts (feeling proud of myself) , different perspective for life, reading "Love, Medicine and Miracles" by Bernie Siegel , gaining self confidence.

[Jeff]

Worst:

• Not one but two ANs! I am going to be deaf!!!
• Like Pablo I was a musician and a music teacher. Taking time to learn a new profession has robbed me of precious time with my family
• Family having 5 AN surgeries in the past 5 years (2 each for my brother and I, 1 for my father)
• My young niece and nephew being diagnosed with NF2 (3 and 6 yrs old)
• Watching my 7-year-old child have an MRI to screen for NF2 and waiting for the results (still waiting)
• Communication difficulties
• Watching my younger brother lose his hearing and have facial paralysis on both sides

Best:

• Family drawing closer together
• Family understands what we are going through- Wives can relate, those of us with NF2 can relate...You should here some of our "tumor talks")
• Knowing that I can get through more than I thought that I could

Sorry for venting....

[amymeri]

Wow, Jeff, what a rough road for you and for your family.  That's a lot for one family to deal with and I am touched to hear that your family has become closer in the struggle. 

Your story really touched me and encouraged me to go forward and be thankful for what I have today.

Blessings.
Amy

[redgrl]

The Best: My family support. With out my husband i would have made it this far. 

The Worst: Being sad and scared all the time. I cry alot. Also being misdiagnosed for 2 years. 

[WHWT]

Worst:  The fear
Best:  Several years ago, when my friend's 7-year old daughter was diagnosed with leukemia, my friend's mother said,
"People want to help.  Let them."  My friend reminded me of those words, and I lived by them.
So, the best for me was realizing that I live in a truly giving community.  People cooked and shopped and provided food for our family for 6 weeks!  I was flabbergasted.  The kids were thrilled.
 It was like magic. 
"Mom, what's for dinner?" 
Ding Dong.  Open the door--there's food.
OK, so now it's payback time and I don't hesitate to give back.

[Kathleen_Mc]

Best: coming to realize what really matters in life.....at the end of the day what needs to carry on to the next and what doesn't

Worse: hearing loss, re-occurance

Kathleen