Author Topic: Good Recovery ?!?!  (Read 4859 times)

Jeanlea

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Good Recovery ?!?!
« on: August 24, 2006, 08:51:05 pm »
I learned I had a 3.5 cm tumor on August 3, 2005.  Two days later I met with my surgeons.  They wanted to do surgery soon since the tumor was pressing on my brainstem.  I had surgery on September 6, 2005.  As a result of my tumor being so sticky I ended up with facial paralysis and numbness.  My facial nerve was still intact, though.  When I left the hospital eight days later my face was totally paralyzed on the left side.

Just over three months after my surgery I noticed the tiniest bit of movement.  It has steadily, but ever so slowly, been increasing in movement.  Still can’t smile yet.  I’m hoping that someday I will.

But on the positive side…I began to get out of bed in the hospital after three days.  My first steps were kind of wobbly and I tired quickly.  Then they had me going to therapy in the hospital.  I did well enough that they decided to let me go home instead of moving me to the rehab floor.  Apparently that was their original plan. 

When I came home I went to see a physical therapist closer to my home.  He gave me exercises to do that were just right for me.  I did whatever he told me to do and sometimes more just to show off.  Lol 

It all paid off.  It wasn’t long before I was up to walking 3 miles a day again. 

Now I’m at the point where there if very little, if anything, that I can’t do that I used to do.  I recently returned from a trip to Isle Royale National Park.  It’s an island in Lake Superior.  While I was there I went on a 5 mile hike on the narrow rock-filled trails.  The trails went up and down hills, over rocks and tree roots.  Part of the trail is on boards about 12 inches wide.  I had no problems balancing on them.  I also went out on the boat with waves about 4-5 feet.  Too windy to go out too far, but I had no more balance problems than anyone else around me.  I even went kayaking with no problems and wading on the rocks near shore.

It’s been nearly a year now.  My life has changed, but in many ways it is still the same.  I’m back teaching (well as soon as summer vacation is over).  I can do the same physical things that I used to do.  My stamina is good.  My balance is at 95% even in the dark.  I have no headaches.  I was worried about that.  I really feel for those that do and those with balance problems.

If it weren’t for not being able to smile or blink I would be pretty much the same as before surgery.  Except for the hearing I no longer have.  But most of the time  I don’t even notice that it’s gone.  All in all, I’m happy with how things have turned out.  It could have been so much worse.   I have learned that while facial paralysis and numbness is not the outcome I was hoping for, it is not the end of the world and my life goes on just as well as it did before all of this.

Hope this might help someone.

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

Larry

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Re: Good Recovery ?!?!
« Reply #1 on: August 24, 2006, 10:17:41 pm »
Positive thoughts and posts are what we need. Good on ya Jeanlea


laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
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http://www.frappr.com/laz

Battyp

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Re: Good Recovery ?!?!
« Reply #2 on: August 24, 2006, 10:47:29 pm »
Thanks for sharing...I feel fortunate I came out as good as I did...I sure don't see myself hiking or boating or skating anytime soon but take comfort in the fact that others can.  Makes me think one day I can too!!  For some reason I thought you were way ahead of me in recovery.  I guess because you were on here first.  I've always tried to push myself to get where you are!!  So keep setting those milestones and challenges for me!  :-*

krbonner

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Re: Good Recovery ?!?!
« Reply #3 on: August 25, 2006, 06:49:59 am »
Thank you, Jean.  It's nice to hear stories like yours!  I rejoice with you in your fabulous recovery!!   :)

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

msuscottie

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Re: Good Recovery ?!?!
« Reply #4 on: August 25, 2006, 07:12:45 am »
Thanks for the post, it's always great to hear positive stories! It keeps us all going! Congrats!

Captain Deb

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Re: Good Recovery ?!?!
« Reply #5 on: August 25, 2006, 08:23:44 am »
You and my friend MJ amaze me. It gives me a lot of hope that,once I get these headaches under control, I'll be able to once again be the hyper-active jungle girl I once was! Thanks!
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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Jim Scott

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Re: Good Recovery ?!?!
« Reply #6 on: August 25, 2006, 02:23:10 pm »
Jean:

Thanks for your positive post.  We certainly need all of those we can get.  Congratulations on your splendid recovery, too!

I'm also experiencing a good recovery -  and I (naturally) hope it continues.  No dizzyness, my balance is good, if not 'perfect' and I have no trouble in the dark.  I do pretty much everything I did prior to my diagnosis and surgery.  I don't work only because I'm determinedly retired, but I could, as, prior to my retirement I held an office job.  Nothing too strenuous.  My neurosurgeon is thrilled with my progress and is usually grinning at me when I see him.   I need to undergo fractionalized radiation treatments (beginning in September) to kill/disable any remaining AN tumor cells but I have been assured that this should not have any damaging effects, long-term.   Short-term, maybe...but they should be temporary, if they occur at all.

Sorry to learn of your initial facial paralysis but pleased to read that it is getting better, if more slowly than you might prefer.  My surgeon left any part of the tumor that (he thought) was too close to cranial/facial nerves in order to avoid any similar complications.  That's why I need radiation treatments to kill the remains of the tumor.  If it's a trade-off.  I'll take it.

I wish you well in your progress. and once again, thanks for the post.


Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Crazycat

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Re: Good Recovery ?!?!
« Reply #7 on: August 25, 2006, 03:10:17 pm »
Jeanlea,

   My doctor told me today that nerve regeneration can take one to two years to happen. So, it's just going to keep getting better.

Sounds like you're doing well! Keep the faith!.................Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Peanut

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Re: Good Recovery ?!?!
« Reply #8 on: August 25, 2006, 10:22:18 pm »
It gives me a lot of hope that,once I get these headaches under control, I'll be able to once again be the hyper-active jungle girl I once was! Thanks!
Capt Deb

Just my thoughts. 
Peanut
3.5 cm AN total resection via suboccipital  April 2003 Barker & McKenna, MGH Boston one week, two weeks Spaulding Rehab
silicone punctal plugs in lower puncta for dry eye,
persistent post op head pain
Acupuncture, craniosacral treatments, Tramadol   200  reduced to 150, now 100mg. daily Feb 2007