Author Topic: EJTampa (Ernie's) updates  (Read 60650 times)

moe

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Re: EJTampa (Ernie's) updates
« Reply #210 on: April 23, 2009, 08:48:24 am »
Glad to hear you are "back in the groove" Ernie ;)
I think you will love your camping this weekend. The outdoor nature sounds help to squelch my "EEEEEEEEing" tinnitus, and I can't wait to go outdoors and do some gardening (actually at this point, it is called de-weeding and debulking). Have fun enjoying mother nature.

And Nancy- good that you are trying  to accept your new white noise.  :'(
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

EJTampa

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Re: EJTampa (Ernie's) updates
« Reply #211 on: April 23, 2009, 01:39:38 pm »
Thanks for the well wishes.  I talked to the wife about camping this weekend.  She said it sounds like fun, too bad we have more painting to do.  OH well.
 
Nancy,  My nerve is at least partially intact and I get the amplification, so perhaps there are other reasons for it.  Mine is already cramping my style, so I'm forced to change my style.  I will NOT be going to very many baseball games this year.  They are too loud.  I will not be going to any movies, except may the new Star Trek movie.  Yep, they are too loud.  We will still go to theme parks (we get yearly passes to Busch Gardens and Universal Studios), but I will NOT be riding all the roller coasters anymore :(.  That one is more due to my light headed issues.
 
To add insult to injury, Busch Gardens took away the free beer!  What's next!  :o ;D
 
Oh, and yes Nancy.  I have the surgery transcript(s)!  My wife is a nurse and got all that stuff for me.  Everyone in the room had to write one, so I have a few :).  Pretty interesting stuff.  They initially had trouble finding the facial nerve for some reason :)
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

anissa

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Re: EJTampa (Ernie's) updates
« Reply #212 on: April 23, 2009, 02:08:50 pm »
Ernie, I'm sorry to hear the tinnitus is getting worse.  :(  I hear you on the roller coasters, just thinking about it right now makes me want to go lay down.  Glad you are still able to get lots of walking in, it does help a lot.  Keep on keepin' on!
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

Jim Scott

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Re: EJTampa (Ernie's) updates
« Reply #213 on: April 23, 2009, 04:14:30 pm »
Ernie:

Glad to learn that your recovery is coming along so well.  Walking is good, so is working - if you can handle it, as you obviously can - with some effort, of course.  Take heart- we went to Disneyworld® last year and Ii was able to ride the infamous Space Mountain roller coaster, Test Track and a few, less rides with no problem.  Of course, this was 2 years post-op.  It takes awhile, but things do improve.  As for those surgery transcripts, I have to admit that I've never seen mine - mainly because I never asked to.  My surgery went well and frankly, I don't care to know exactly what my surgeon did, minute by minute.  He gave me a pretty good explanation ('the CSF simply poured out once we opened your skull, I had to move your brainstem - but just a tiny bit", etc).  I'm good with that.  Of course, had I not enjoyed such a good outcome, I might have been a lot more inquisitive.   Keep up the good work and you'll be back on a roller coaster in no time. 

Jim

« Last Edit: April 24, 2009, 03:07:40 pm by Jim Scott »
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.

moe

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Re: EJTampa (Ernie's) updates
« Reply #214 on: April 24, 2009, 03:03:57 pm »
]the CSF simply poured out once we opened your skull, I had to move your brainstem - but just a tiny bit"[/i], etc).  I'm good with that.  Of course, had I not enjoyed such a good outcome, I might have been a lot more inquisitive.   Jim



Wow Jim, I had no idea! You sure did have some divine intervention during that surgery!
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

EJTampa

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Re: EJTampa (Ernie's) updates
« Reply #215 on: May 18, 2009, 11:46:00 am »
First, a note to the mods.  You can move this whole topic to Post-Treatment section if you like.  I just wanted to keep my updates together.
 
As most of you suspected, I did quite well at the docs today!  I do have more issues with balance again though.  My balance over the last 2 weeks has been deteriorating.  It used to be just light-headedness, but now I even lose my footing.  Just yesterday I stumbled down two small steps in my home, dumping half a cup of coffee onto the floor.  The doctor wanted to know what I was doing walking down steps with a cup of coffee in my hand :).  He said that two things are probably causing my decrease in vestibular function.  1)  My returning to shift work is likely upsetting my sleep habit, thus keeping me more tired even if I don't notice it.  And 2)  I have stopped walking everyday since returning to work, because of the shift work, rain, and heat this time of year.
 
Along the same lines (vestibular), I mentioned to him that my up and down head motions cause some pretty intense light-headedness.  He said that's because I have not been using that motion much compared to the left to right.  I guess I need to find someone to talk to that I can agree with more often (shake head up and down like a "yes" answer) instead of someone who is always wrong ;).
 
We talked a bit about hearing.  I can hear low tones, although they have to be louder than normal.  I thought it was interesting that I could hear the high tones through my head and into my good ear :).  If I had wanted to, I could have cheated the system and shown good hearing in my AN ear :).  I pointed to my good ear each time I pushed the button to let the audiologist know where I was hearing it from.  She just smiled and said it was quite common.  Even with the static, I could hear high tones through my head and to my good ear.  Anyway, I have no useful hearing left.  Words sound like muffled vibrations in my AN ear.  Unfortunately, that does translate to interference when I'm in loud places.  That is, while I hear good in my left ear, my brain is also trying to process the muffled garbage in the AN ear.  I'll probably pick up some earplugs.  Dr. Bartels feels that my brain will eventually learn to ignore the AN ear since there is nothing useful coming from it.  I hope he's right.  He wanted me to try out the BAHA sooner than later, suggesting it's better for the device to be part of the original learning curve of the brain as opposed to adding it later after the brain has adapted.  Unfortunately, I'm not yet convinced it is necessary.  My next appointment is in 3 months, and I will decide then.
 
Otherwise, the appointment was pretty uneventful!  I'm back to doing everything I was before surgery, except riding roller coasters.  I did forget to ask him if I was completely off restrictions though.  I'll have to shoot him an email.
 
Thanks for reading, and I sure hope others can enjoy as quick and complete of a recovery as I have been blessed with.
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

NancyMc

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Re: EJTampa (Ernie's) updates
« Reply #216 on: May 18, 2009, 11:59:11 am »
Well, that's good news, Ernie, except for the carpet stain.
I'll be considering the BAHA as well at some point in the future, so we can ride that roller coaster together.
Be careful out there.
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

ppearl214

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Re: EJTampa (Ernie's) updates
« Reply #217 on: May 18, 2009, 12:26:17 pm »
First, a note to the mods.  You can move this whole topic to Post-Treatment section if you like.  I just wanted to keep my updates together.

hey ernie...er... Jan... will keep it here and for the future, should be posted in Post-Treatment forum.  :)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

ppearl214

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Re: EJTampa (Ernie's) updates
« Reply #218 on: May 18, 2009, 12:28:38 pm »
Hey Ernie,

Congrats on "uneventful"... it does sound like you are doing well and other than coffee spills due to trip-ups, you sound great! Sending wishes for continued wellness.. and GoSox! :)  (ok, Papi needs some help... send some good vibes....)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

wendysig

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Re: EJTampa (Ernie's) updates
« Reply #219 on: May 18, 2009, 02:35:23 pm »
Hi Ernie,

I'm glad your checkup went well.  Did you doc suggest going to a physical therapist for vestibular rehab?  That would help your balance problems and possibly your lightheadedness and bobbleheadedness too.  They will give you specific exercises to do that will help improve all of these problems if you do them religously.  I still have some balance minor problems, but they are much better than they were post-op and I owe that to my physical therapist and my daughthers' ballet teacher.  the bobbleheadedness (aka wonky head) gets better with time, as my doc predicted it would but has not gone away completely.  I'm not sure it will.  If I have to live with it, it'snot the worst thing in the world.  Keep us posted on how you're doing.

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!

LisaP

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Re: EJTampa (Ernie's) updates
« Reply #220 on: May 19, 2009, 05:10:34 am »
Ernie,

It sounds like your recovery is still going well, please continue to keep us posted.

LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

moe

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Re: EJTampa (Ernie's) updates
« Reply #221 on: May 19, 2009, 09:33:38 am »
Good hearing from you Ernie, but sorry to hear about your decrease balance issues.
Yep the body does tell you when you are overdoing it or not doing something right.
Hopefully you can make it a priority to get some vestibular training going in a nice air conditioned setting, and hopefully insurance will cover it!
Definitely is a must.
Hang tough, and don't walk down the stairs with a cup of coffee! ??? (Also don't breathe, or read the paper with your cup of coffee :D :D)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

EJTampa

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Re: EJTampa (Ernie's) updates
« Reply #222 on: February 24, 2010, 11:56:45 pm »
Warning: this topic has not been posted in for at least 120 days.
Unless you're sure you want to reply, please consider starting a new topic.

 
Ok, so it's been a few days since I've updated this post :)
 
First, if you have been through the surgery, through the recovery, and entered the "I'll post in another month or so" mode, let me recommend that you read your ENTIRE post-surgery thread again!  I just did that, and I think I've read some posts for the first time!  Probably not, but lots of those posts I read were under the influence of controlled substances :)
 
Elsewhere in the forums I posted about how I was getting daily headaches 3 to 6 months out of surgery.  I was concerned about having to take pain meds for the rest of my life.  Well, good news.  I probably only take OTC's now about once a week! 
 
Believe it or not, I am 1 week away from my 1 year anniversary!  No, I haven't scheduled my 1 year MRI yet, but I feel good and am blessed to have had the support from all my good friends here in the forums!  I will try to post on or near my 1 year anniversary, but wanted to get a post in before it passed :) 
 
I'm going to keep this on the short side and save some bandwidth for my real 1 year update, but suffice to say that if I've been away from the boards too long, it's because you all prayed too hard and put my life back together in record pace!
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

ppearl214

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Re: EJTampa (Ernie's) updates
« Reply #223 on: February 25, 2010, 07:17:29 am »
well, now that the site has hand-slapped you for not updating this thread in over 120 days..... 'nuff said!  ;D

CONGRATS Ernie on wellness well done!  I can't believe it's a year already and ...... me thinks you need to come to Boston for the brunch in April so we can celebrate this terrific news with you!

Yes, you have been missed! :)

Congrats again on this great news! :)
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kathy M

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Re: EJTampa (Ernie's) updates
« Reply #224 on: February 25, 2010, 09:33:48 am »
Good news is always so nice to read, Ernie!!!!  I was wondering how you were doing.  Looking forward to a report for your one-year anniversary.

Kathy
AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!