Still here

[oHIo]

Hi everyone,
I am still here, occasionally lurking, rarely posting, but thinking of everyone and wishing those new to the forum good luck in deciding on treatment options and wishing the posties continued recovery.

I read a post by someone a while back wondering what happens to all of the posties.  For me, I continue to recover from my surgery and numerous complications as well as find new battles to fight.  My BAHA request was recently denied and I am in the process of appealing.  It has been time consuming just getting them to decide why they denied my request, so I can appeal it.  But fight it, I will, because I don't give up easily.

I have been back to work, full swing since 9 weeks post op.  For those who don't know me, I had a translab for a 2cm AN at the end of March.  I developed just about every complication possible including an intracranial bleed during surgery, a CSF leak, meningitis, post op confusion due to high dose steroids, a grade 6 facial palsy, a bad corneal abrasion that required a tarsorrhaphy (sewed my eye 70% shut), single sided deafness (since I had a translab) and balance issues. 

At almost 7 months post op, I am happy to report I am doing great.  Work has been busier than ever.  I still spend a lot more time seeing different doctors than I would like, but my facial nerve is coming back quite nicely.  On a scale of 0-100 (I started 4 months ago at a 13), I am now an 83, with a desired score of 85-100.  If my eye wasn't sewn partially shut, and I didn't try to smile wide, I look pretty normal (my family will dispute that and tell you I've never been 'normal'    )  I have developed a little synkinesis, but am addressing the issue with my doctors.  My eye was slightly opened last week and my cornea is healthy.  I will have my eye opened even more in a few weeks.  My eye feels good and my blink does a good enough job to only require occasional drops or night time ointment.  My eye doctors are amazed I have recovered this quickly, considering where I was a few days post op.  I can eat a sandwich without eating my lip, but I still prefer to drink with a straw.  I have gone for balance therapy and once my eye is fully opened, I believe my balance will get better also.

I have been spending my spare time taking a photography course and learning to enjoy the new me.  I'm sure my photographs will look much better once I can fully see out of the eye I use to look into the viewfinder.  In the meantime, my blurry images are passed off as my attempts to express my artsy fartsy side.  So far, the rest of my class is buying it.   

For those contemplating surgery, know that developing this many complications is extremely rare.  Looking back, I would not change my course of treatment, or my surgeons.  For those posties who've struggled with facial nerve and eye issues, I fully understand how hard it is to be patient and still find myself looking in the mirror several times a day to make sure I haven't lost ground.  My recovery is far from over but I have accepted that the new me is just as good, if not better, than the old me.  I have learned to take nothing for granted.  I am still working on being patient.  I think that is a lost cause.   

Please know I am thinking about everyone, even if I don't post much.  There is life after a brain tumor and I plan to enjoy it to the fullest extent. 
Debbie

[leapyrtwins]

Debbie -

as I said the other day, I'm glad to see you back here on the forum.

Boy, you've been through a lot, haven't you    It's good to see what you have such a positive attitude.

I think the progress you've made, especially given the many issues you've had to deal with, is outstanding.  You're come so far in 7 months and you should be very proud of yourself. 

Keep up the fight for the BAHA; IMO it's well worth it.  I'll pray to the insurance Gods to help you 

I'm hoping to be able to meet you at the ANA Symposium in August, so please give some serious thought to coming to Chicago.

Hang in there, and don't be a stranger.

Hugs,

Jan

[oHIo]

Jan,
I've got the August symposium on my calendar.  It would be fun to meet everyone in person.   

I've only had a few 'dark' days, where I finally sat and had a good cry.  The day I got news of the BAHA denial was really the first time.  Kaybo happened to call me and I snapped out of it pretty quickly.  (Thanks K.) 
The eye docs decided to disagree on when/if/how much to open my eye (an in office procedure involving needles and scalpels) and had me pretty frustrated.  I was starting to feel like a hot potato being passed back and forth.  The eye issue, by far has been the worst.  Not being able to hear or see on one side has been a challenge.  People can be standing right next to me carrying on a one sided conversation, and I have no clue they are even there, let alone talking to me.  I find myself running into things and people on my right because I can't hear or see them. 

I've also had a few good laughs, at my own expense.  As you know, I have a special needs child.  A few weeks ago, he lost his balance and fell, head first down a flight of steps as I was watching it all happen in slow motion.  I ran to the bottom of the stairs, my heart racing, trying to remain calm and assess the damage.  No broken bone, no visible bleeding, but a nice swollen eye that was sure to turn black.  Grabbing an ice pack, I instructed my son to sit down and place the ice on his face to keep his eye from swelling shut.  (The school bus was to arrive in the next 20 minutes, and I was due at the doctor's office shortly thereafter.  Never be the child of a nurse, because you are never sick/injured enough to stay home from school  )  He was more scared than anything and kept asking me if he was okay.  I assured him he was, but he needed to keep the ice on his eye.  Suddenly, he started sobbing and said, "Mommy, I sure hope my eye doesn't look as bad as yours."  It was everything I could do to not laugh, but I assured him his eye would not look like mine. 

[Sue]

Aww, Debbie, sweet story with your son.  I think!  Poor little guy.  Congrats on making it to this point and your courage and tenacity are amazing.  Your will power and strength is awe inspiring.  Thank you for sharing your story, thus far, and I wish you only the best in your continued healing. 

As we say, {{{{huggles}}}}!!

Sue in Vancouver USA

[Kaybo]

Debbie~
I had been wondering about you - I'm sorry I haven't checked on you.  Things have been a bit crazy here, but that is no excuse!  Aside from the insurance nightmare, it sounds like things are going pretty good.  I am so glad for you that they are not fighting over whether to open your eye or not - I know that was hard for you.  And your face - all I can say is WHOO-HOO!!!!  Funny story about your son - I think I told you about the student I was getting after one day and he said, "Boy, I'm sure glad you don't have 2 good eyes..."

Got to run!  Talk more soon!
K

[Jim Scott]

Hi, Debbi:

All I can say is thanks for posting. Well, maybe I can say a little bit more.  You're amazing and inspiring.  From a worst-case scenario  post-op experience to where you are today, just 7 months later; working full time (for the past 5 months), taking photography classes and, quite obviously, getting on with your life, as you should.  Of course, with the obstacles you've had to surmount, that is no easy task, yet you seem to have managed it with grace and a great sense of humor, which is always a big help in AN surgery recovery.

Just by doing what you're doing Debbi and letting us know about it is a great help to many who may be looking at AN surgery with great trepidation.  You may not feel heroic, but you are, all the same.  Thanks again for brightening everyone's day - and keep on pushing for that BAHA...you deserve it. 

Jim

[oHIo]

Thanks Jim, Sue and K.
I felt almost guilty not posting for a while, but my work schedule has been crazy.  I leave the house at 6:45am and return between 8 and 9pm, eat dinner, lay out stuff for the next morning school and work rush, and go to bed.  The last two months I have been doing the work of two people.  We are attempting to hire a replacement for a staff member that transferred, but I guess my boss must feel I am back to normal enough to keep up the crazy pace...or maybe she is punishing me. 

My facial nerve rehab PT, and the doctors have been very encouraged by my recovery and a few admitted they did not expect me to be doing this well.  Then again, my PT said I haven't done anything "normal'.  I'd like to think that is a compliment, but you never know. 

I believe the scariest part of my recovery was my facial nerve issues.  In my case, tumor location was more important than size, and it had left my facial nerve looking like that of someone with a much larger tumor.  I was crushed when I went for my first facial nerve eval and discovered I held the record for the lowest score ever at a facility that does a lot of facial nerve rehab (not just from ANs).  By the next visit, my score was in the 50's, which was quite an improvement.  It is still very hard to be patient, not knowing when/if I will plateau and ultimately what/if any deficits I will have permanently. 

I am happy to say that if I make no further progress than where I am today, I could live a nice full life and adjust quite nicely.  (And I have it figured out that I will be eligible for Medicare in 17 years and THEY WILL pay for a BAHA  )  My friends have accepted that I occasionally leak out of the corner of my mouth and ignore them when they walk on my deaf side unknowingly.  They hold the correct seat at the table when we go out to eat, so I can hear the conversation as well as the waitress, and are quick to translate if they see I didn't hear.  My friends have held me together during the rough times...those physically with me in my hometown, and those here on the forum.  Thanks friends.

[Boppie]

Hi Deb,  It is good the hear from you.  I am so glad your face is better now. 

[leapyrtwins]

Debbie -

I think Jim said it best - you are amazing and inspiring 

I loved the story about your son; very cute.  He sounds like a real sweetheart.

Glad the symposium is on your calendar; hope to see you then.

Jan

[sgerrard]

I felt almost guilty not posting for a while,

Oh please don't. I like the members who have normal lives to live, and drop by now and then to share their story and inspire the rest of us. Members just like you.

I am happy to say that if I make no further progress than where I am today, I could live a nice full life and adjust quite nicely.  (And I have it figured out that I will be eligible for Medicare in 17 years and THEY WILL pay for a BAHA 

Those seventeen years will go by quicker than you think. 

Steve

[Tamara]

May I ask what insurance you have?  My BAHA was approved through United Heath Care, and they're usually the stingiest....

Tammy

[satman]

hey there ohio,sounds as if your doing great,glad to hear it.

[Debbi]

Hey Deb-

It is so good to hear from you!  I am glad to see that your wonderful sense of humor is intact - and thrilled to hear about your facial progress!!  This whole experience really does give you some serenity about life, doesn't it? 

I will keep fingers crossed that you get a reversal from the insurance company on the BAHA.  It's just ridiculous that they would deny something like this!  I am getting ready to fight the good fight for a TransEar (if I can ever find someone to actually fit me for one!), but if worse comes to worse, I'll pay out of pocket (not really an option with Baha surgery!) 

Again, it was wonderful to read your update.  Keep smiling!  (Crooked or not!)

Debbi, still got my crooked smile, but getting better...

[oHIo]

Tammy...insurance is Humana.  Actually talked with my surgeon tonight.  He's such a great guy.  We may be able to appeal it and get my employer to over ride the appeal because we are self insured.  Humana is just our benefits administrator.  I work for a hospital.  You'd think it would be nice if their nurse could actually hear the fire alarm go off (or the code alarm) while her good ear is glued to the phone.  But then again, people who are not deaf have no clue. 

Steve...I know how quickly the years fly by.  My "baby" just had his 13th birthday.  I think that cannot be correct because I am still carrying the baby weight 

[oHIo]

Debbi...I had considered the TransEar but not sure I could tolerate it.  I can't get anything near my ear without the tinnitus getting worse.  I also haven't been able to locate anyone who claims to fit TransEars.  I'm tempted to see if I can find a "DIY BAHA kit"...do it yourself.  Let's see, I'd need a titanium post, a drill, a few shots of whiskey and a mirror.  Sounds like a job for Lori's garage.    While I'm at it, I could open the rest of my eye.  Okay, maybe not.

Glad to hear (if only with one ear) you are getting better.  I think the most important thing people contemplating surgery should know is that recovery takes time.  Yes, many of us go back to work fairly quickly (some more out of necessity than really feeling back to 'normal').  Some people have complications and because of the nature of the surgery, facial palsy sometimes happens.  No one wants it.  There are no guarantees with any treatment.  No one wanted an AN, but you just deal with it and hope that your recovery goes as quickly as you desire and get a lot of practice being patient along the way.    I think we all forget sometimes that we had brain surgery for a brain tumor.  Pretty serious stuff if you think about it. 

Debbie...what doesn't kill you makes you stronger... maybe