Author Topic: 4 weeks post translab, 24 year old  (Read 7583 times)

schleep

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4 weeks post translab, 24 year old
« on: May 21, 2012, 09:25:56 am »
Hey all,
I've been lurking around this forum for a month or two now and figured I should share my story.
I was diagnosed with an acoustic neuroma in March. 2 cm, left side...I'm 24 years old. It presented as hearing loss/muffled
sounds and ringing in that ear. Dr. Favrot with Alabama ENT Associates referred me for the MRI that started this whole thing.


He told me I'd want to do surgery given my age, tumor size, and proximity to the brain stem.
From there I contacted Leslie-Ann Smith at Vanderbilt's Skull Base Center and quickly got an appointment there
with both Dr. George Wanna (ENT) and Dr. Kyle Weaver (Neuro). All together my experience with them was great.
I underwent a translab approach removal on April 23, 2012. Oddly enough, my tumor was actually growing on the auditory nerve and not the balance nerves as they were expecting.

So surgery was a Monday, I was walking down the hall Tuesday, up a set of steps on Thursday morning, and was released Thursday afternoon. Aside from some slight dizziness if I turn my head rapidly, I don't have trouble with balance except in a dark room. I've had some facial weakness which caused me to use eye patches and ointment for the first week or two post op and at 4 weeks out right now is still not all back yet. We've been taking pictures weekly to show the facial improvements and I can post those here if anyone wants to see.

All in all, I've been told repeatedly that due to my young age, that I'm recovering quickly and should have no long term affects from this other than losing the rest of the hearing in my left ear from that surgery. Everyone I've talked to at Vanderbilt has been pleasant and professional. I would not hesitate to refer someone to them.
- Tripp
2 cm AN, translab removal 4-23-2012 @ Vanderbilt

alabamajane

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Re: 4 weeks post translab, 24 year old
« Reply #1 on: May 21, 2012, 11:45:28 am »
Welcome,, and congrats on what sounds like very successful surgery! Best wishes for continued quick recovery.. we always like to hear stories of these journeys,, especially positive ones..
Best wishes are coming your way for continued good health... Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

mindyandy

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Re: 4 weeks post translab, 24 year old
« Reply #2 on: May 21, 2012, 12:42:26 pm »
Wonderful news that you are doing so well. Poster child for surgery. Glad you picked great doctors. Keep us posted on how your recovery goes.

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

Jim Scott

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Re: 4 weeks post translab, 24 year old
« Reply #3 on: May 21, 2012, 02:28:03 pm »
Schleep ~

Thanks for posting - and congratulations on your successful (Translab) AN surgery and rapid recovery!    Your youth is obviously a factor in your body's ability to quickly recover from the surgery and I hope that recovery continues.  Your good outcome is very encouraging.  :)

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.

pjb

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Re: 4 weeks post translab, 24 year old
« Reply #4 on: May 21, 2012, 05:08:51 pm »
Congratulations always love to hear of great outcomes...continued blessings for a speedy recovery just take it slow you did have brain surgery. Vestibular therapy helps so much with the turning of the head as you have mentioned.

Best Wishes,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Manders

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Re: 4 weeks post translab, 24 year old
« Reply #5 on: May 22, 2012, 07:29:41 am »
Hi! It's soo great to hear from another 24 year old!! I just had my translab done at Cleveland Clinic a little over a week ago so I'm at the beginning of my recovery process. I'm doing well so far although I had a pretty rough first week and had to stay at the hospital for the entirety of it. I'm home now though and can walk really well unaided. My biggest issues are actually getting my eyes to focus and getting dizzy when I move my head too quickly. I start working with a vestibular therapist on Wednesday so we'll see how that helps. I also have some right sided facial weakness and have to use eye drops every 2 hours and lubricant at night. (All my info is on my "brain tumor" blog: www.awkwardturtlesan.blogspot.com.)
Glad to hear that your recovery is going well and I wish you all the best!
Diagnosed February 2012 * 1.3cm tumor * Experienced sudden & total hearing loss in 2007 in right ear * Translab scheduled for May 11, 2012*Follow my blog at: www.awkwardturtlesan.blogspot.com

JAndrews

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Re: 4 weeks post translab, 24 year old
« Reply #6 on: May 22, 2012, 07:38:35 am »
Great news!
2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

JW123

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Re: 4 weeks post translab, 24 year old
« Reply #7 on: May 29, 2012, 07:54:23 am »
Give it up for the 24 year olds!! Well i'm 25 now, as of May 22nd. But I did have my surgery when I was 24, so im am in the club.  Glad your surgery went well and you are recovering really well.

Was your facial weakness delayed or was the weakness there right after the surgery? I had what the docs called "delayed weakness" i don't think thats the technical term though haha. I was normal after the surgery but then about 2 weeks later I started noticing my face getting a little weaker. This got worse each day until there was no movement. The doctors told me that it was uncommon, but not too uncommon. And that on a good note, each time they had seen delayed weakness it always came back. And it did. I would contend that i can still see some unevenness in expressions, but then again i might just have uneven expressions haha.

Hope everything gets better and better for ya.

-Joe
Left side VS - 2.0 x 2.7
Retrosigmoid on Oct 17th 2011
Surgery at Mayo Clinic with Dr. Link & Dr. Driscoll
SSD left side, delayed temporary facial weakness, ongoing severe headaches.

schleep

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Re: 4 weeks post translab, 24 year old
« Reply #8 on: June 02, 2012, 03:04:29 pm »

Was your facial weakness delayed or was the weakness there right after the surgery? I had what the docs called "delayed weakness" i don't think thats the technical term though haha. I was normal after the surgery but then about 2 weeks later I started noticing my face getting a little weaker.
-Joe

Thanks for the well wishes everyone.

Joe, my facial weakness was immediate. I woke up from the surgery with most of the left side of my face severely weakened, but over the past weeks its almost all come back little by little. We're 6ish weeks out of surgery now and most of my face is normal again. You can tell if I pucker my lips or go out in the sun without shades. (weak on squinting in the sun). That and I can't wink with my left eye yet.

The weak/lazy eye has been the biggest thing to deal with. Reading a book and playing Xbox seem to have worked pretty well at recovering that eye (well, except for the whole stare at a backlit screen thing the TV does).

(I do have some exercises from physical therapy though, including some focus games with a string and 3 balls that's been pretty effective).

I seem to have lucked out on the dizziness as well. As long as I don't end up in a pitch black room, I'm pretty stable. I do occasionally find some movement direction that catches me off guard...it's like being tipsy/drunk without the drinking then.

One more week until I head back to work. (That'll be 6 weeks recovery + 1 in hospital/travel home) So far so good.
- Tripp
2 cm AN, translab removal 4-23-2012 @ Vanderbilt

JW123

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Re: 4 weeks post translab, 24 year old
« Reply #9 on: June 03, 2012, 06:49:50 am »
During your rehab do you ever use one of these.. http://www.stopdizziness.com/services_cdp.asp (picture of it on the right). It worked great on my balance. I had trouble walking before rehab with it. I did about 2 months of rehab with a physical therapist using it 2 times a week, for about 40 min. After 2 months of it (which was a total of 3 months post surgery) I was about to get back on my snowboard and ride almost as good as before the surgery.

A google search says its called a Computer Dynamic Posturography Balance Machine.
Left side VS - 2.0 x 2.7
Retrosigmoid on Oct 17th 2011
Surgery at Mayo Clinic with Dr. Link & Dr. Driscoll
SSD left side, delayed temporary facial weakness, ongoing severe headaches.

schleep

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Re: 4 weeks post translab, 24 year old
« Reply #10 on: June 03, 2012, 07:36:56 am »
During your rehab do you ever use one of these.. http://www.stopdizziness.com/services_cdp.asp (picture of it on the right). It worked great on my balance. I had trouble walking before rehab with it. I did about 2 months of rehab with a physical therapist using it 2 times a week, for about 40 min. After 2 months of it (which was a total of 3 months post surgery) I was about to get back on my snowboard and ride almost as good as before the surgery.

A google search says its called a Computer Dynamic Posturography Balance Machine.

YES! I did physical therapy at Siskin Rehab in Chattanooga right after the surgery and they used one of those machines to test my vestibular system. Overall I scored a "D", since my balance was fine with my feet and eyes. Eyes closed for a vestibular test though and I scored like a 20/100 the week after surgery.

The trickiest exercise they started me on though used a BOSU balance ball like this:

http://www.amazon.com/Bosu-Balance-Trainer-Home-Version/dp/B00012PDMW

Standing on the ball side they had me close my eyes and march in place, etc.
Then standing on the flat side they had me rotate the platform around in circular motions (with eyes open and closed).
As I got better they tried to get me to do squat type movements while staying balanced on it. (This was impossible at 4 weeks out with my eyes closed).

These exercises were only to be done when you have someone to catch you when you fall.

When I'm finally all healed up, I'm anxious to get back on my bikes. (Mtn biking and road biking). I know my stamina will be gone, but I'm curious how my balance on a bike is affected.
- Tripp
2 cm AN, translab removal 4-23-2012 @ Vanderbilt

hkelsch

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Re: 4 weeks post translab, 24 year old
« Reply #11 on: June 05, 2012, 07:25:10 pm »
hello young people!! I am 26 now, but I had two surgeries last year when I was 25. I was actually two years into medical school and had to take a whole year off when I diagnosed myself with an AN. Strange to actually have something when we are such hypochondriacs! I had two surgeries and then multiple blood clots forcing me to stay in the hospital for what seemed like eternity. I also recently had gamma knife that seemed to go well. Now I am finally getting ready to go back to school and I couldn't be more excited to be back to normal!!!!!! Well, almost. I still have facial weakness but my docs assure me that the facial nerve is anatomically and electrically intact so hopefully it'll continue to improve. I have eye ointment that helps and I have to tape my eye shut every night. Can I just say to the women out there that it sucks to have the ointment get into your eyelashes...I haven't been able to wear mascara since! I also have SSD on the R side and am hoping to get a BAHA next month.

So great to hear about other people's stories, thanks for sharing!
5cm Right side:
    retrosig June 2011
    translab October 2011
    Gamma Knife April 2012
facial weakness (nerve preserved)
balance issues
complete right sided hearing loss