Author Topic: Four week check-up  (Read 2109 times)

Sue Vogel

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Four week check-up
« on: November 14, 2008, 12:34:48 am »
It's nice to see an MRI that is tumor free.  The large blob of fat from the ear to the brain stem looks a little odd, but it's harmless.  My doctors were pleased with my recovery so far.  I've been doing some vestibular exercises and will meet with the therapist for additional assistance in 10 days.  I'm amazed at how much more energy I have at four weeks than at three weeks.  The doctors said I could drive if I was comfortable with it.  ( I actually cheated and drove down my lane last week but didn't tell my husband.)  So I drove a few miles today and was pretty nervous about it.  I don't feel very safe behind the wheel yet.  I know I can't drive at night as I'm pretty off balance in the dark.  Does any one else have this problem?

My left eye won't tear, but I have been very lucky with no other facial nerve damage.  The jaw is still pretty sore and the neck is stiff, but I'm sure that both of these will improve more in time.   It's funny how we all have our pet issues that concern us.  I'm not a food buff so my taste issues have not bothered me except that my coffee no longer appeals to me - and I really like my coffee in the morning!  My concern was the quality of sound in my good ear.  For the first two weeks, voices of familiar people did not sound right to me.  The higher notes on my grand piano sounded like they were off by half a note.  I was very disappointed.  But now, my hearing has improved and the piano sounds great!  Voices no longer sound like they are missing tones.  This is such a relief.  I still don't know if I want to pursue something like BAHA or TransEar.  So far, SSD has not been a big inconvenience for me.  My real test will be when I get back into my classroom.   

I got to color my hair today which was badly needed as my new growth was entirely gray!

It feels good to be on the other side.  I'm glad I found the AN forum. 

SUE
3 cm left side
Translab. surgery 10/13/08
Dr. Gantz/Dr. Woodson
Univ. of Iowa Hospitals and Clinics
SSD, adjusting to balance issues
BAHA surgery 1/29/10 Dr. Gantz/Dr. Woodson (dynamic duo)

kenneth_k

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Re: Four week check-up
« Reply #1 on: November 14, 2008, 04:14:45 am »
Hi Sue.

Nice to read that you are recovering so well. ;)
It's been 5 weeks since I had surgery. I also tried driving yesterday. In the dark hours. Only a short drive, but I felt a bit uneasy about it. It was like I had to concentrate a lot more than before. I guess/hope it is a psychological thing and that it will improve. Otherwise, there will be no arguments who's driving home from a party  ;D

I'm also very relieved that the SSD thing isn't that big a deal I thought it would be. But then again, I haven't tried crowded places yet. I hope it wont be to much of a problem.

Best regards, Kenneth

Omaschwannoma

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Re: Four week check-up
« Reply #2 on: November 14, 2008, 08:47:30 am »
As for the night driving I do this without problems now.  For three years after my first surgery I couldn't even ride in the passenger seat without having to close my eyes due to dizzy feeling and too much movement going on with the bumps, lights and things whizzing by the window.  Since my second surgery I am so much better. 

I now drive at night without that "sick" or "unbalanced" feeling.  It does take time for these feeling to go, but one has to practice this.  Best to have a partner in the car for the first couple of trips if your really not sure about it. 

I was forced into the situation, as I am taking evening class once a week and with time change I drive home in the dark.  I stayed in the slow lane, I concentrated on the task at hand, but stayed relaxed while doing this.  It was difficult, but after three weeks, I don't feel unsteady anymore.  Frankly, I have more difficulty going down the ramp and walking to my car in the dark than driving in the dark! 

You'll get there, just takes time and after time you still are not comfortable, then so be it.  We are not all the same here and our vestibular schwannomas are not all the same! 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Debbi

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Re: Four week check-up
« Reply #3 on: November 14, 2008, 03:24:59 pm »
Sue, Kenneth and Cheri-

You guys are all doing amazing!  Just remember to take is slow and don't push too hard (yes, sounding like a broken record!)  You'll know when you feel "safe" driving.   I still don't drive at night if I can help it, but that is mainly because I have to keep so much goo in my right eye that I can't see well with headlight glare.  Concersely, I never feel ill-at-ease during daylight hours.  It just takes a little time to start feeling "normal" behind the wheel.

Interesting about the SSD - some people are far more bothered than others by this.  For all of us, it is trying in noisy environments, but most of us can limit those environments to some extent.  Personally, I am not bothered at all in low-noise situations.  It is mildly irritating to not know where a sound is coming from, but not that bad.  Still, I am considering a TransEar, mainly so that I can hear when someone talks to me on my deaf side in a restaurant or meeting.  I think everyone has their own threshold for SSD - give yourselves time.

Sending you lots of good wishes and three big Cheers!!   8)

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Jim Scott

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Re: Four week check-up
« Reply #4 on: November 14, 2008, 04:06:04 pm »
Sue, Kenneth, Cheri:

As often happens, I pretty much agree with Debbi.  :)

I'm over two years post-op and have dealt with SSD for at least twice that long.  I've adapted out of necessity and sometimes don't even notice that I'm only hearing in one ear.  However, I understand that  folks adapt in different ways and for many, a BAHA or similar device is their best method of dealing with unilateral deafness.  That particular adaptation doesn't appeal to me but I may change my mind down the road.  Still, I think it's great that these aids exist and can offer the SSD sufferer some usable hearing in their deaf ear.  I would urge those who are newly SSD to give it some time and try to adapt.  If that doesn't work for you, definitely schedule a demonstration of a BAHA or other hearing devices now available.

FWIW:  I was fortunate to be able to drive within a few weeks of my surgery but, between you and me, I didn't feel confident driving at night (and avoided it whenever possible) for close to a year.  I'm good now.
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.

Dog Lover

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Re: Four week check-up
« Reply #5 on: November 14, 2008, 06:44:44 pm »
Hooray!!!! I probably already told you this, but I found that after I did the vestibular exercises for a week and then tried driving again, it was like night and day. MUCH easier.  ;D

Cathy
« Last Edit: November 14, 2008, 06:52:21 pm by Dog Lover »
Cathy
9mm x 3mm Left Side AN
Mid Fossa Aug. 21, 2008
Dr. Gantz / Dr. Woodson
Univ. of Iowa Hospitals and Clinics
No facial issues, hearing saved, I keep active and feel back to normal.

sgerrard

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Re: Four week check-up
« Reply #6 on: November 14, 2008, 09:20:34 pm »
Sue, Kenneth, Cheri, Cathy, Debbi, Karen, Jim:

I have nothing in particular to add to this discussion, I just like the idea of building up a really long address line. You are all doing marvelously. ;D

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Dog Lover

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Re: Four week check-up
« Reply #7 on: November 15, 2008, 06:44:22 pm »
Cheri,

Did the side to side thing looking a something in front of me, and looking side to side and then up and down while walking. I never did the finger thing. By then I had started back to work, and figured there was enough brain stimulus there and it was hard to do it 3 x a day. (sounds wimpy, but I was soooo tired.) Then when I did try to do it, I wasn't used to it, and like it was when I first started, felt a bit worse. I should have kept up, but at that point, I had had enough of feeling worse.

I got me a Wii and Wii Fit instead. Still have to take it real easy on that. If I overdue I pay. Baby steps, you know? But overall, think I'm making great progress. You too!

And Sue, and Kenneth and Debbi and Karen and Jim and Steve!  ;)

Cathy
Cathy
9mm x 3mm Left Side AN
Mid Fossa Aug. 21, 2008
Dr. Gantz / Dr. Woodson
Univ. of Iowa Hospitals and Clinics
No facial issues, hearing saved, I keep active and feel back to normal.

Omaschwannoma

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Re: Four week check-up
« Reply #8 on: November 18, 2008, 10:47:39 am »
Steve,

....on the floor rolling around laughing

Who's making this post long for no good reason now?!
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

wendysig

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Re: Four week check-up
« Reply #9 on: November 18, 2008, 01:09:13 pm »
Sue, Cheri and Kenneth,
You do all sound like you are doing amazingly well.  As far as driving in the dark  goes, I have to agree with Karen -- I just started driving at night recently (I'm 3 1/2 months post-op) and although the first couple of times were a little nerve wracking I did the same thing, I stayed in the right lane and drove a little slower. I don't need ot drive at night often, but now I know I can, if necessary.  Now I feel much steadier driving in the dark than walking in the dark, and that has also improved.

Wishing you all speedy recoveries,,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Dog Lover

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Re: Four week check-up
« Reply #10 on: November 18, 2008, 09:36:45 pm »
Cheri,

The step thing is my favorite. I did some Yoga stuff tonight and I did the Hula Hoop when my daughter was here a few weekends ago. I kicked her butt! LOL. But, then as I always tend to do...I over did it that night. Now I am more careful. I only do about 10 -15 min on it at a time right now. I feel like a wimp only doing that much, but between driving to and from work each day, and work and keeping up the house and taking care of my pups...well, I can only handle so much and I guess I gotta give myself a break sometimes.  ;)

I miss walking outside. Too too cold this past week.

Cathy
Cathy
9mm x 3mm Left Side AN
Mid Fossa Aug. 21, 2008
Dr. Gantz / Dr. Woodson
Univ. of Iowa Hospitals and Clinics
No facial issues, hearing saved, I keep active and feel back to normal.

Dog Lover

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Re: Four week check-up
« Reply #11 on: November 21, 2008, 04:49:43 pm »
Cheri,

That's what happens to me. Totally tired, and my head feels just a bit wonky when I over do it. Getting better though.

I miss Colorado. It is FREEZING here!!!

Cathy
Cathy
9mm x 3mm Left Side AN
Mid Fossa Aug. 21, 2008
Dr. Gantz / Dr. Woodson
Univ. of Iowa Hospitals and Clinics
No facial issues, hearing saved, I keep active and feel back to normal.

Debbi

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Re: Four week check-up
« Reply #12 on: November 21, 2008, 05:43:14 pm »
I'm so inspired by the WiiFit stories that I decided that was going Willie's and my Christmas present to ourselves this year!  We're going to go out and look at the Wii units tomorrow.  of course, I'll wrap it all up and put it under the tree until the Big Day ...  Meanwhile, I am doing the old-fashioned self-managed yoga...

Debbi, getting ready to Wii
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com