Author Topic: THe Carnival ride stops soon....I hope  (Read 22288 times)

Melissa778

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THe Carnival ride stops soon....I hope
« on: March 26, 2008, 06:38:39 am »
So I have scheduled my surgery with Dr. Kartush at Michigan Ear.  I am having Translab done on May 15th.  AGH!  It seems so close, yet so far away.  I'm nervous, but anxious to move forward and get this thing out of my head :)  Dr. Kartush and the team at Michingan Ear are very impressive, very informative, and very supportive.  I was highly impressed and I feel very comfortable with them, which is a huge relief as I have nto had much luck in finding a Dr. I was comfortable with.  It's unfortunate that I have to go the translab route as currently my hearing is 100% perfect in my right ear (my AN side).  But I'm having some facial distrubances and serious balance and vertigo issues. 

So now for any posties who care to share......what twas he surgery and recovery "REALLY" like?  what can I expect?  How difficult is it to get back to a "normal" routine?  What is it like waking up with SSD?  :D  Did I ask enough questiosn there or what?!?

Melissa
1.6cm X 1.6cm diagnosed Jan 30 2008
Translab Surgery scheduled for May 15th with Surgery went well, got ALMOST all of it.
GK to zap the rest on 10/22/08
2010 MRI showed no new growth tumor measuring at that time at 1.1 x .4
2011 Holding steady
2012 new growth 1.7 x .7 :( :(

Kaybo

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Re: THe Carnival ride stops soon....I hope
« Reply #1 on: March 26, 2008, 06:52:01 am »
Melissa~
Glad you got everything scheduled (& more importantly found a doc you like)!!  I would LOVE to talk to you sometim -- it is easier for me to talk than type!  PM me your phone number if you are interested (I have unlimited LD so this is not a problem)!
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!

JeWeL41

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Re: THe Carnival ride stops soon....I hope
« Reply #2 on: March 26, 2008, 10:57:41 am »
I haven't got AN but I have got sudden deafness, is there no way that your hearing can be preserved as it is perfect? If not then of course you will cope but I just know that I would love my hearing back. Loads of luck with your surgery. :)
Sudden hearing loss Nov 2006 (left), tinnitus, fullness,imbalance, left side headaches and strange sensation on that side of face - but not AN!
Diagnosis - SSHL. Bouts of spinning vertigo now!
Saw Prof Ramsden (April 08) and it may be Atypical Menieres with Migraine Syndrome!

LADavid

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Re: THe Carnival ride stops soon....I hope
« Reply #3 on: March 26, 2008, 11:09:00 am »
Hi Melissa
Congratulations on setting a date.  I got it down on my calendar -- just don't make me get out the white-out ;).  Since your AN and mine were similar in size, it's possible the we may share a lot of the same experience -- but as they say, no two are a like.  I'll write more to you as I think about it or you have questions.  But first -- the surgery -- I think the toughest part was getting out of the car and walking into the hospital.  I was first up in the morning so it was very quiet and peaceful in the waiting room.  BTW, see if you can schedule your surgery early in the day.  According to friends in the medical field, if you're early, you have less of a chance of getting bumped back by other surgeries.  And since you'll be fasting, you don't have to deal with that as long.

Make sure you have your paperwork done before you go to the hospital.  It's just a matter of handing it in and getting your wristband.  You go to a prep area where you get your hospital gown, leggings and your bed.  I think I had my IV inserted then.  After a short while, I was wheeled up to a pre-op room.  They shot me up with vallium.  I had a pleasant chat with the anesthesiologist.   They wheeled me into the operating room.  And the last thing I remember was trying to be helpful being shifted from my bed to the operating table.  The next thing I knew I was in ICU all tangled up in tubes and wires with someone waking me up. And within minutes, my daughter was next to my bed and we had a nice talk.  For me the worst thing was being thirsty -- ice chips just didn't cut it.  And I had an allergic skin reaction to the anti-bacteria scrub I had been using on my scalp for the previous two days.  I was itchy.  There was no pain around the incision -- some in my stomach incision.  As far as SSD, I was already 82% deaf on the AN side.  It really wasn't an issue.  But I don't think you'll notice it at first since you'll have a heavy dressing on the AN ear that covers the whole side of your face.  I'll see if I can find a picture of me in ICU.  Then I had top deal with two days of ice chips, constant monitoring and boredom in ICU.  But it was when the surgeons came to vist that I found out......
(to be continued)
More later
David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

Debbi

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Re: THe Carnival ride stops soon....I hope
« Reply #4 on: March 26, 2008, 02:24:05 pm »
Oh, David - that is SO not fair!  I was hanging on your every word and then ... To Be Continued!!!!???? ::)

Melissa, I hope you don't mind if I hang out on your thread.  I, too, am awaiting translab and am filled with questions.  Dont' have the final date yet - hoping for April, but more likely May. 

BTW, I tried putting a plug in my AN ear to see if I could simulate SSD - didn't really work as I could still hear stuff.  Kind of hard to imagine what that will really feel like, isn't it?

How about hair washing??  Is there any way to wash it in the hospital?

Deb - hangin' in NJ
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

LADavid

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Re: THe Carnival ride stops soon....I hope
« Reply #5 on: March 26, 2008, 04:32:54 pm »
Hey Debbie and Melissa

Sorry to leave you cliff-hanging.  A friend came over to go for a hike and that looked like a good opportunity to break away.

I'll write more about it tomorrow but what the surgeons said was that "the surgery was successful, the tumor was out and it was benign, but (smiles masking something) we had to stretch the facial muscle nerve in removing it.  You'll be fine."  Tune in tomorrow to find out what "fine" meant.

Hey I'm a actor/writer.

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

Debbi

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Re: THe Carnival ride stops soon....I hope
« Reply #6 on: March 26, 2008, 05:01:08 pm »
David, you have all the qualities of a best selling author...  I'm on the edge of my seat.  Oh, wait, I just lost my balance and fell off...  ;D

Deb - hangin' on  Melissa's thread...
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

leapyrtwins

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Re: THe Carnival ride stops soon....I hope
« Reply #7 on: March 26, 2008, 05:03:36 pm »
Deb -

hair washing - or lack of it - is generally one of the worst parts of post op recovery.  I couldn't shampoo until the stitches were removed from my head - about 9 days post op.  I think that's pretty standard procedure with AN surgery.

I actually felt sorry for the doc, my head was so gooped up with bacitracin at that point.  Grizzly.

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

Melissa778

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Re: THe Carnival ride stops soon....I hope
« Reply #8 on: March 27, 2008, 06:08:26 am »
The not washing the hair sounds pretty yucky.......I know there are dry shampoo products out there.....Anyone ever try anything like that?

David......I just love the way you keep us hanging.....like reading a good book you cant' put down.....And then something interrupts and you can't wait to get back to it :)

Deb, What are your most bothersome symptoms now?  I know the hearing loss for me is going to be rough as I have 2 small children......

My main worry right now is the facial nerve......While my AN is only 1.7cm.....I have lots of facial twitching.....so I'm really nervous about that.

Kinda off subject......but has anyone heard from there doc or read anything anywhere that these stinkers seem to grow faster the younger you are and they have a higher growth rate in pre-menopausal women?  Something to do with Estrogen I guess....just wondered if anyone else had heard or read anything about that.  I trust my doc, he is very well versed and one of the best.  I had just never read or heard that about AN growth.

Have a wonderful day all......Supposed to snow here (Toledo, OH) again today and tomorrow.....looking at possibly 3 inches of snow coming my way?  Where is the SUNSHINE??  :)

Melissa


1.6cm X 1.6cm diagnosed Jan 30 2008
Translab Surgery scheduled for May 15th with Surgery went well, got ALMOST all of it.
GK to zap the rest on 10/22/08
2010 MRI showed no new growth tumor measuring at that time at 1.1 x .4
2011 Holding steady
2012 new growth 1.7 x .7 :( :(

leapyrtwins

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Re: THe Carnival ride stops soon....I hope
« Reply #9 on: March 27, 2008, 08:14:57 am »
Melissa -

The not washing the hair part is yucky, but I don't think dry shampoo is recommended - it can flake off and get inside the incision.

I've read that there is speculation that the hormones related to pregnancy and menopause can increase AN growth, but I don't think anything has ever been proven.  Plus it wouldn't explain all the men with ANs.  Another theory is cell phone use, but it's never been proven either. 

I can understand your concern about your facial nerve, but the size of your AN doesn't necessarily dictate whether or not you'll have damage.  My AN was 2.5+ cm and I don't have facial nerve damage; there are others like me also.

And, where is David?  I stopped in specifically this morning to continue reading his story; I'm hanging by a thread here  ;D

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

Debbi

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Re: THe Carnival ride stops soon....I hope
« Reply #10 on: March 27, 2008, 12:50:49 pm »
Hi again-

On the shampoo front - I just talked to MaryMomof3 who is a week and a day post op.  She sounds fabulous!  She reported that she was able to shampoo her hair (with baby shampoo) the day she got home!  Good news indeed.  Don't know if this relates to the procedure or not, though.

Melissa, the only really noticable symptom I have is the hearing loss in my AN ear (speech discrim is about 75%).  I had some tinnitis last year, but it went away and never came back.  I also have, apparently, gradually lost much of my balance but my trusty brain seems to have compensated well.  It's pretty weird that you could have a thing growing in your head and not have any more symptoms than that, isnt it? 

David, where are you - we're all on the edge of our seats (which may be dangerous for some, given the whole balance thing!)

Deb - still waiting for my date...
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

Glenda

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Re: THe Carnival ride stops soon....I hope
« Reply #11 on: March 27, 2008, 01:20:01 pm »
David,

Come on back...poor Debbi is out there hanging by this thread....Please rescue her ;D  Boy can you tell he's an actor/writer or what?since the stike is over he had to find some way to keep us hanging ;)
You guys are so much fun....

I guess I have all the probables for having an AN.  Menopausal and a cell phone user.   ::)

I too am watching this thread since somewhere in the future I am facing surgery too.  Next MRI in July. 

Melissa,  I know you are so glad you at least have a date.  It's wonderful that you are so comfortable with your doctors!  Got you on my calendar.  Praying for you! Will be watching your progress.

Glenda

Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

LADavid

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Re: THe Carnival ride stops soon....I hope
« Reply #12 on: March 27, 2008, 01:21:10 pm »
You were waiting for me????  Opps.  It's my birthday and I slept in.  Ahhhh.

So where did I leave off?  In the St Joseph's hospital ICU.  So there I was lying in a tangle of wires and tubes with boots that compressed my legs every minute while being poked and probed and tested every 15 minutes or so whether I needed it or not.  It was pretty boring.  The ice chips were a blessing.  I found out though what a stretched facial muscle nerve means -- temporary facial paralysis on my AN side.  The "temporary" - according to the surgeons -- was a month or two.  Which was great.  I get to hang out in bed doing nothing until the writer's strike was over and then back to work. "Hmmm," Dave hmmmed to himself,"I wonder what could go wrong?"
It was the second day in the ICU that I was introduced to the "Moisture Chamber" -- I'm sure that sounds more ominous than it is.  The chamber is a plastic patch with padding around the edges that fits over your eye.  One of the many downsides of facial palsy (paralysis) is that you can't close your eye.  Not a good thing.  An eye that doesn't close gets very dry and painful.  It needs a constant dose of liquid goop (Refresh Drops) to keep it moist.  I was getting eye drops a lot when I was in ICU.  And of course as I mentioned before, I had an allergic skin reaction to the anti-bacteria soap.  And there was the removal of the catheter.  I cringe today at the thought. One saving grace through all that was painkillers on demand.  So there I lay in a semi-euphoric state hooked up to machines with my scratchy eye and itchy skin.  What wasn't an issue though, was the the surgery incision.  Other than the head bandage I barely noticed it.  But I was ready to get out of there and eat something more than ice chips.
The evening of the second day in ICU I was finally moved to my room.  And I had my first "meal" -- jello and juice.  It tasted great!  During the first night in my room, my eye was the biggest issue -- and a slight headache toward the back of my head.  Wednesday, an opthomologist showed up to check out my eye and to put an extended wear contact over my eye to protect the cornea.  And my daughter and friends stopped by -- it made the time pass easily.  I couldn't really read because of my eye -- too much of a strain.  But what I could do was watch TV.  What I remember most was the Pizza ads.  I developed a craving.  The hospital food was hospital food.  It tasted odd.  That afternoon, with the help of my daughter, I took my first walk in the hallway.  I felt fine.  It's sort of like walking on the deck of a rolling ship.  But I did notice other AN patients walking around with walkers.  I don't know why I was so spry -- at first.  I think a lot of it had to do with pre-surgery physical conditioning.  The day before my surgery, I hiked up a local canyon and I had been doing a lot of kayaking.  Debbie and Melissa, I don't know if it makes a difference, but you might want to consider bike riding or other balance exercises that you are able to do.
Thursday was more of the same.  Eye goop.  Odd tasting food.  Bandages came off.  Hall walks.  Visitors.  Eye patch.  Junk food craving.  I was ready to get out of there.  Finally, on Friday (4 days after surgery) I was cleared to go home stack of prescriptions in hand for every known (and some unknown) malady.  My daughter was on hand to wheel me out and take me home.  It was the first time she mentioned that I looked like a pirate.  That wasn't the last time I heard it. As you will see on this board, it's a common theme. Capt Deb commands the ship here.
So I got home and the first thing I wanted to eat -- Nachos.  Something that tasted.  But there was something odd about them.  I couldn't taste them.  Nada on the Nachos.  All of a sudden, I realized my taste was gone.  Today, four months later, it still isn't there completely.  I found the only food I could actually taste was Greek food -- especially Domades (grape leaf wraps).  Why I don't know.  I'm having Greek food for my birthday dinner.  So I was finally at home with a scratchy eye, half a smile, and not taste.  It wasn't until Monday when I friend took me to the eye doctor that I discovered something else....
(to be continued)
Have a great day!
David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

Glenda

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Re: THe Carnival ride stops soon....I hope
« Reply #13 on: March 27, 2008, 01:55:40 pm »
Happy Birthday David!!!!  ;D

I was really getting into the read again and there goes the writer in you leaving us on a cliff again!  Poor Deb.....just as she was climbing up there you go and (to be continued)   Hang on Debbi............ ;)

OK David, we'll let you off this time, I mean since it's your birthday and all :D
Hope you have a wonderful time at your birthday dinner.  My birthday wish for you is that your taste comes back , your (temporary facial paralysis) is gone and that you no longer are required to wear the eye patch.  You can keep it to wear only because you want to, when you are on your pirate duties ;D Aaaarrrrrr...........

Glenda



Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

LADavid

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Re: THe Carnival ride stops soon....I hope
« Reply #14 on: March 27, 2008, 02:22:54 pm »
Hope
I should have included you too in the advice on the balance stuff since you're up first.  How are you doing?

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments