Author Topic: 1 year for me !!!!!!!!  (Read 2247 times)

cherrypiper

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1 year for me !!!!!!!!
« on: December 03, 2008, 05:57:50 pm »
i was thinking of this forum as this day approached. and had a few things i thought id bring up.

1. Thank you so much to Jim Scott, Jan, and our Global Co-ordinator Phyl.........you three have been wonderful inputs to me as have lots of others for sure but you 3 lead the way............

2. i thought maybe some newer folks might want to know some of the history of these AN tumors from a 1 year perspective.........being an ex Chemical Engineer and now a teacher at a local 2 yr college i know only one way to do this.....so here goes.............

Why did i do this?

well in June 07 i finally had insurance so i went to a ENT Dr. to see if a hearing aid would help me on the rt side. He sent me to get an MRI after we found i had no hearing over there.........

Symptoms ?

1. no hearing rt side
2. tinnitus over there
3. loss of balance especially at nite.......i had really hurt my shoulder twice  by running into door jams at nite. saw them thought i moved over couldn't
4. some loss of mental capacity at nite too

What ENT and Neurosurgeons told me-----

1. This is rarely life threatening surgery. in fact here at Houston Hermann Hosp. they have their own Operating room for AN's do 5 to 7 a week.

My An was almond shaped about 20 mm by 5 mm all over nerves 7 and 8. the facila and acoustic nerves.

2. there would , 75% , chance be some residual face problems that i didnt have now after surgery...

3. It was going to take 5 to 6 hours to do.

3. in 17 years they had not lost anyone due to death here in this surgery.

4, then they showed me and wife exactly where cut would be how with a model they would get it, how long i would be in hosp. (4 to 6 days) and the details of their 10 person team..........

5. they explained the halo device but i dont really grasp that one till after the surgery. it hurt   lol
Post surgery what was the results?

1. They got it all .
2. it was not cancerous ----95% + arent i was told
3. It took 5 + hours and they had a problem they asked me about. Seemed at 3 hours i started to come OUT of anesthesia.......they had to stop and put me under again and wanted to know if i remember coming to? no i didnt
4. pain management was a big deal to them and me.....we talked about it . i have always been relatively immune to pain meds. so other doses had to be worked out.
5. i was hooked up in ICU for 2 days. just water, fluids, and meds. including shots into stomach for some reason. didnt learn about those till later.

Post op visit with ENT surgeon 6 weeks later


 1. we did i some balance tests i had b4 surgery.........there was some improvement not much
2. my rt eye lid wouldn't close . i had to use tape or soft pads taped over eye to sleep
3. rt lip and face had slipped , sagged a bit maybe 1/2 inch to an inch
4. i had very little strength. i attribute that to im 57 to begin with. and then ENT said this is MAJOR surgery , it will take one month per hour you are under b4 your stamina comes back. in my case much longer because of the re doing of the going under.
5. my dentures wouldn't fit because of the sag of face

Today ---1 year later

1. eye closes
2. rt side only sags maybe 1/4 inch to 1/2 inch
3. balance tests show me much better still run into stuff at nite
4. eye is healthy but not ok.......... face slippage has affected eye focus
5. dentures are a work in progress it seems some days good some not so....

Bottom line ................i am glad i had the surgery. the tumor is gone (1 year mri results soon) it wasnt cancerous, and the rest of it is just irritating since those 2.......

one of thesse days i might ebven share enough to not be a newbie here  LOL :-\ :D

i hope this helped someone





10 mm x 2.4mm surgery date 12/03/07

glad to be here

Kaybo

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Re: 1 year for me !!!!!!!!
« Reply #1 on: December 03, 2008, 06:49:12 pm »
Cherrypiper~
Thanks for sharing - I'm sure that someone newly diagnosed will find this VERY helpful!
Are you in the Houston area?  I will be there for Christmas and some of us are going to try to get together - we'd love to meet you!  Let me know...

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Rivergirl

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Re: 1 year for me !!!!!!!!
« Reply #2 on: December 03, 2008, 07:33:01 pm »
Cherry piper, thank you for that post it was very informative.  I am W & W and am unsure why I am waiting, your post gives me more to think about.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

msmaggie

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Re: 1 year for me !!!!!!!!
« Reply #3 on: December 03, 2008, 08:24:47 pm »

Hi Cherrypiper,
I'm in Houston too.  I want to get together with the others, but 1 week from today I will be a postie, so I don't know if I will be up to it!  I'm glad you have made such good progress!  It gives me hope as I go into my surgery.

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

leapyrtwins

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Re: 1 year for me !!!!!!!!
« Reply #4 on: December 03, 2008, 08:34:08 pm »
Cherrypiper -

glad to see you posting here again.  I can't believe it's been 1 year since your surgery  :o  I seem to be getting older by the minute  ;)

You are so right - AN surgery is MAJOR surgery - something I didn't fully appreciate until I woke up post op - but as your progress from 6 weeks post op to 1 year post op proves, time helps heal all "wounds". 

It's great to see you are doing so well and I'm glad you updated us on your progress - not just because we care so much about you, but also because your post will be very encouraging for the newbies.

Don't be a stranger around here,

Jan 
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

cherrypiper

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Re: 1 year for me !!!!!!!!
« Reply #5 on: December 14, 2008, 08:06:52 pm »
sure Kaybo let me know how to get together !!!!!!!!!!!!!!
10 mm x 2.4mm surgery date 12/03/07

glad to be here

Jim Scott

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Re: 1 year for me !!!!!!!!
« Reply #6 on: December 15, 2008, 04:59:36 pm »
Cherrypiper:

Thanks for the informative update.  I'm pleased to read about your progress and I'm sure you've helped someone today.  :)

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.