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Author Topic: Joebloggs Update  (Read 38523 times)

Cheryl R

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Re: Joebloggs Update
« Reply #135 on: April 23, 2009, 06:12:19 am »
Nancy, one can have some dry eye post op without going on to have facial weakness.      I did for about 3 weeks with my surgery a year ago.      I know a non forum person who did also.                     Just all kind of happenings with this surgery!
                                                                 Cheryl R
Logged
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

joebloggs

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Re: Joebloggs Update
« Reply #136 on: April 23, 2009, 07:24:55 am »
Hi Nancy - I did have that eye that didn't close for about 6 days which came on at 12 days post op.  That's when I first noticed my eye not tearing (I think I watched a chick flick and was only crying from the non AN eye).  It hasn't started up again yet but I assume it will eventually.  It's not dry per se - it's wet enough to keep the eye covered (occaisionally I put drops in now when I've been outside for a while or whatever) but it just doesn't make big fat tears!  Weird. 

Thanks everyone for the lovely posts - I'm really feeling great.  Just have to knock this balance on the head and I'll be right as rain. 

Steve - I did have to sew the hat up... I'm not sure how to make a hat without sewing... well that's not true... I know how it's done - I just haven't tried it because it looks a bit scary... I'm still at the straight long piece of knitting stage - I don't do double ended needles or sock knitting or anything like that yet - that's all in the too hard basket! 

And Anissa - I reckon if I wasn't sans children I'd not have any time to knit either!  Ask me again in a few years (hopefully..cross fingers!!) if I've got time to knit!!  Actually ask me again after I go back to work and I'm not lazing around at my Parents' house!

x
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Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!

EJTampa

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Re: Joebloggs Update
« Reply #137 on: April 23, 2009, 01:42:56 pm »
Hi JB.
 
Just jumping in to say hi and let you know that I'm still following your posts with interest!
 
Quote from: joebloggs on April 23, 2009, 07:24:55 am
I think I watched a chick flick and was only crying from the non AN eye

Having to watch a chick flick would make me cry too :)
 
Ernie
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-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.

Seal

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Re: Joebloggs Update
« Reply #138 on: April 23, 2009, 03:40:25 pm »
Hi JB,

Great pictures and nice hat!!!     I can feel Steve turning blue with envy over that beautiful knitting work!!!      Great up the great progress as the cool weather approaches!       Here in New England, the daffodils are almost past, and the bushes and tulips are coming next.     If it was not for this crushing fatigue, I would climb out under the boat this weekend and get something constructive done, but all in due time I hope!     

Best,
Steve
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Diagnosed 1/14/09 - 2.4cm AN right side --- about 70% cycstic
Retrosigmoid wiih McKenna & Barker - total removal successful on April 13th. 
Issues: balance, facial & mouth numbness, hearing loss right side
Results:   numbness gone, balance is good, SSD right side. Great results.

stoneaxe

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Re: Joebloggs Update
« Reply #139 on: May 05, 2009, 01:01:57 pm »
OK...enough with the knitting...I'm waiting for the 1st paddleboard pics.... ;)
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Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

joebloggs

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Re: Joebloggs Update
« Reply #140 on: May 13, 2009, 08:47:37 am »
Howdy folks,

Been a while... had to head back to Melbourne to have a bit of a Neuro check up and a CT scan then ended up leaving my bloody laptop charger at my sisters so have been sans computer for a while!  Good news is the check up went great - CT showed no bleeding or anything post surgery which is good news... I would have though I'd have known about it by now though if there was a problem!!  I have to have an MRI in 6 weeks and then another Neuro consult then I'm free!!! Well at least for a year until I need another MRI!  Whoop whoop!

Sadly for Stoneaxe I'm still knitting!  I've attached a pic of some little sheep for my friend who's sheep got taken by a pack of nasty dogs the other day... not that some knitted sheep would replace them, but it's the thought that counts!  But some good news too.... my friend here in Tassie, Bryan has leant me a paddleboard and paddle for a couple of months until I'm ready to head back to the UK!!! It arrived on Monday night and I went out the next day (yesterday) and didn't fall off!!! Woo hoo!!!  My first paddle since the operation and I managed to stay on the whole hour or so. I was thrilled!  The hardest part about it was trying to get the board back up the hill from the beach to the house!  Mum and Dad have a perfect spot here for it - they can keep an eye on me from the balcony and the water in the bay isn't too deep.  I saw a stingray underneath the board at one point which was pretty exciting - it was massive!  No fish though.  They're probably hiding.  I went out today in some pretty windy weather and it was hard going.  Sad to say I did fall off, but it was right at the shore when a wave got me.  Not bad for someone who's just had their balance nerve cut!  I'm pretty happy - I wasn't sure I was going to be able to do it, but I'm proof there's life and paddling after surgery!  The plan is to try and go out every day for an hour or so unless the weather really is wretched and get the balance back.  So far so good!  Here's a little pic of me and the board about to go in - it was so windy I almost lost the board holding it up there waiting for Dad to take the picture, but managed to hold onto it... just!  Will pop a movie up on facebook soon of me in action... stay tuned!

xxx



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Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!

cindyj

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Re: Joebloggs Update
« Reply #141 on: May 13, 2009, 09:10:36 am »
Hey, JB!!!  Those are the cutest little sheep!  You and Steve may need to set up shop together - you two are amazing.  So great that you were able to get out on the board...and not fall off!  Very impressed!  Can't believe how very long that board is - how in the world do you carry that thing?  Know Stoneaxe will be glad to see you're back on the water - as we all are!

Be careful out there, though,

Cindy
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rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

NancyMc

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Re: Joebloggs Update
« Reply #142 on: May 13, 2009, 09:38:11 am »
I was just thinking of you this morning, wondering where's JB?  Glad to have the cheery update.  That board must be the wrong size for you, no?  What a beautiful beach!  Can we come visit Mom and Dad?  ;D
Sorry for the poor taken sheep, but yours are a lovely tribute.  Put out some kibble for the dogs, and perhaps they'll leave the sheep be!?
Keep us posted on your adventures.
Missed you there for a while.
Nancy
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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

EJTampa

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Re: Joebloggs Update
« Reply #143 on: May 13, 2009, 05:46:53 pm »
Hey JB!
 
Great pics and awesome on the paddleboarding!  That board must be like 12 feet long!  I don't think I could hold it up against the wind :)
 
I wish you and Bob would stop posting such wonderful paddleboarding pics.  It's gonna make me go out and try it myself!
 
Ernie
Logged
-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.

joebloggs

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Re: Joebloggs Update
« Reply #144 on: May 13, 2009, 06:25:23 pm »
It's massive isn't it??!!  I think it's 11 foot 6, so not far off Ernie!  I think you're definitely going to have to go out and try it - if I can get out there when it's practically winter, then you can too!!  Nancy you can definitely come and visit!  It's lovely here!!!  As for carrying the board Cindy... with difficulty!  Dad helps me we grab one end each and get down the hill with it then Mum tells him when I'm coming back in and he comes down to help me up with it.  Before the op I carried one sort of half on my shoulder from the water to the car no probs - but not so much now, particularly having to haul it up a hill! 

I'll put some more photos up soon and then Ernie can start putting his up!!!!

xx
Logged
Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!

Kate B

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Re: Joebloggs Update
« Reply #145 on: May 14, 2009, 07:39:28 pm »
Great pics....
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Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

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leapyrtwins

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Re: Joebloggs Update
« Reply #146 on: May 14, 2009, 10:19:16 pm »
Wow!  That is some long board.

And the sheep are absolutely adorable  ;D

I think Steve may have some competition  ;)

Jan
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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

suboo73

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Re: Joebloggs Update
« Reply #147 on: May 15, 2009, 04:41:11 am »
Hi JB!  So glad to see more pics of you - the knitting is beautiful, and how in the world do you handle that big paddle board!!!??? 
(I see that your Dad helps!)

I am with Nancy - can we come visit, it looks lovely at your parent's home.
It doesn't matter the season, i love to travel and meet people!
So glad to read your posts and know you are doing so well!!

Please keep in touch - you, like many other post-op patients, are an inspiration to those of us yet to go thru treatment.
All my best!

Sue
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suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

stoneaxe

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Re: Joebloggs Update
« Reply #148 on: May 15, 2009, 08:26:43 pm »
Photobucket has something going on so I can't see the pics at the moment but great to hear that you're back on the water JB. You'll find it wonderful balance therapy.

I'm beginning to wonder if I'm being a bit too optomistic about recovery. I'm hoping for surgery early June and to still be able to paddle the CCBC Aug 15th. We'll see...going to give it my best.

If you're finding the boards too heavy you might consider a sling or the mule. I'm getting a mule for the beach this summer...pack a couple of boards...cooler, chairs, umbrella, on it and away you go.

http://www.muletransportsystems.com/

http://www.k5.com/getproduct.asp?p=24359&s=928&b=34

Ernie you've got no excuses...in Florida...warm year round....get paddling... ;D
« Last Edit: May 15, 2009, 08:29:32 pm by stoneaxe »
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Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

EJTampa

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Re: Joebloggs Update
« Reply #149 on: May 15, 2009, 09:20:02 pm »
My excuse is that it's too far to go (a good 20 minute drive) :)
 
Ernie
Logged
-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.
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