Tell me about your experiences with large tumors

[Taylor]

Hi... i'm 18 now and had a 4.8 cm tumor removed 2/3/06.  It takes me longer than it use to to do everything.  The recovery is very slow, but it's getting better.  I talk funny because one of my vocal cords is paralysed. So i have PT, OT, and speech therapy twice a week.  I have dry eye because one of the tear ducts doesn't work, so I use Systane eyedrops. My eye doesn't close all the way, but almost. I don't have a gold weight in my eyelid like a lot of ANers do. I have to wear an eye patch (moisture chamber) at night when I sleep because of that.  (All of this is on the right side... the side the tumor was on)  I have facial paralysis on my right side, but the nerve wasn't cut so some of it should come back although none yet. The whole left side of my body feels asleep (a pins & needles sensation) It has more speed and coordination than the right side which is strange because the sensation in my right side feels normal, and i'm right handed.  I use my left hand alot more than my right and i shouldn't because the more i use it the faster it'll come back. So i'm trying to use my right hand more. My handwriting is very slow and shaky.  I was in the hospital for 5 weeks... mostly because i had rehab 6 hours a day everyday.  I was 17 at the time.  Well it's been 3 months and a week today since my surgery so I have a lot of time to get better.  I don't think your son will have it this bad.  Some people alot older than me don't have it this bad.  I just got off the walker about 3 weeks ago and i'll need it again for far distances (like the mall) but haven't used it yet.  When i go to the grocery store with my mom i push a cart and it helps alot.  I wanna get the BAHA soon cause i've only heard good things about it.

[chrissmom]

Thank you, Taylor.  I really appreciate your story.  You have a tremendous amount of courage.  OT and PT do wonders and soon you'll be doing things the way you used to do them.  You are young and nerves can regenerate but they regenerate slowly. So give it time and you'll do great. 

[chrissmom]

This is chrissmom.  Thank you, all of you for your stories.  They help me so much.  I am so sad but know that I need to be strong.  Chris will visit the surgeons on Monday.   This appt. was moved up by the doctors.  I feel that it is urgent now.  He was just diagnosed a week ago.  The ENT Dr. said that it would probably be translabyrinth but that would be up to the surgeons.  They are excellent doctors and both worked at House.

 I was unaware of the recovery time until Taylor told me her story.  I am committed to carrying for him, though.  I am a teacher and I am prepared to take off the rest of the school year to care for him (3 weeks) and then we have the summer.  If necessary,  I'll take off the next year as well. I'm interested in knowing how Kara is doing too.  Donna, please post.  What was her recovery time like.  Chris seems very unsteady but I may be looking too closely now.  Before, we just thought he was being a goofy kid.  We had no idea what was going on.  I never even heard of AN before and for a week now, it has been the only thing I have known.  Thank  you, for your support and prayers.  I never needed it more.

[chrissmom]

Thank you for the suggestions, Joef.  They were most helpful.

[pejavar]

Dear ChrissMom

                       I wish good luck to chris , tell him everything would be fine , he woul emerge out of this more strong than ever , Here is what i feel about the whole thing ..The harder in life , the more I realize the impact of attitude on life. Attitude to me is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than success, than what other people think or say or do. It is more important than appearance, gift, or skill. It will make or break a company..a man's life ....a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past..We dont anticipate being sick ...we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the string we have, and that is our attitude. I am convinced that life is 10 percent what happens to me and 90 percent how I react to it. And so it is with you... we are in charge of our attitudes . What lies behind us and what lies before us are tiny matters compared to what lies within us.

Pejavar

[Angela]

Wow, my 4cm "Timmy" sounds small compared to the previous responses!

Pre-diagnosis, I had perfect hearing (including perfect word discrimination) and no headaches.  The MRI was ordered after a routine eye exam showed 20/20 yet I complained about problems with my right peripheral vision.  I did have worsening balance but I thought that was due to pregnancy.

I had Translab and am now deaf.  Recovery was tougher than anticipated but not impossible.  Vestibular therapy helped alot.  The biggest nuisance is tinnitus;  My family's tired of repeating themselves and I can't stand missing most of the conversation.  If there's background noise (such as the TV or stove fan), then forget it!  The hardest part is facial paralysis and all the eye complications;  My face hasn't twitched yet and I'm 15m post-op... very discouraging.  It's not just humbling, it's downright humiliating sometimes!

The emotions can be hard to deal with, they're such a rollercoaster!  But again, one can find benefits in every adversity.  I would never ask for this "challenge" or wish it upon my worst enemy.  But because of this stupid tumor, I have a stronger faith, more positive outlook, am more compassionate to others, and am grateful for the things I can do... like be alive to hug my kids.

Your son is very lucky to have you as an advocate!  It's going to be a long road, hopefully without bumps and detours >)

[tumor mom]

Chrissmom,

Sorry I didn't post sooner but I've been out of town.  Kara recovered pretty quickly - she left the hospital on day 4 and on the fifth day we moved to a hotel in Santa Monica where she was able to sit outside the room and relax on the lounge chairs.  Each day we saw an improvement and would leave to go out for an hour or two.  She would become exhausted easily and would nap in the afternoon - but that was expected between the surgery and anaesthesia it takes time for your body to adjust. (I was told by one of the doctors we spoke with that it takes the body a month to fully recuperate for every hour you've been under anaesthesia - I don't know if that's true or not - but Karas operation lasted 12-13 hours)  Before we came home from LA (we stayed there a total of 2 weeks) she walked the promenade in Santa Monica walked along Rodeo Drive, and walked along the pier in Santa Monica.  It was hard at first because she felt like her balance was off and walking in crowds was a lot of work - she felt like everyone was coming at her it was hard for her to judge how far away they were.

Once we got home from LA each day she seemed to have more strength - but being tired seemed to be her biggest problem for months - even now I think she tires easier than before.  But she is a year post op and she can definitely put in a full days work either at college or on the job.  Kara had her operation last March and it took about 2 months to feel like herself and have energy - and then I think when she went back to college in September she realized she still wasn't 100% but each day she got stronger.

She had a little facial paralysis two weeks after and that started to get better at week 5 - I don't think that fully healed until sometime in the fall.  Sometimes we didn't notice it - but then when we got pictures back we realized her smile was still really slanted but that has all healed.  Her only problem now is a little dry eye which she sprays usually once a day other than that and SSD we feel as though the operation was a huge success especially for the size tumor she had.

I hope this helps if you need any more information let me know or you can email me or contact me by phone.

I'm thinking about you.

Donna

[chrissmom]

Thanks, Donna.  We have finally started down that road to surgery.  He has had all his pre-op tests and I'm already fighting with the insurance company.  He was to have shunt surgery today for hydrocephalus but that is now going to be Wed.  We will probably need to wait a few weeks before they actually start the tumor surgery.  You have been so helpful and supportive. I'll let you know how we are progressing.