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Author Topic: Stoneaxe's Update  (Read 48666 times)

stoneaxe

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Re: Stoneaxe's Update
« Reply #75 on: June 21, 2009, 11:07:45 pm »
Phew...long day today...tired. Makes a differnce in my face. More week tonight. Still closing eye OK though. A little blurry vision.. I've been up since 6 this morning. Mostly on the couch but some walking around too. Going to take a slow walk on the treadmill tomorrow while I do balance PT. We'll see how far I get. Going to be careful but I am planning on pushing it at least a bit.

Molly...yes Sue did say you stopped by...thanks so much!

OK...time for bed. Thanks again everyone... ;D
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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

Lilan

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Re: Stoneaxe's Update
« Reply #76 on: June 22, 2009, 06:54:37 am »
Bob, missed most of your story as I was a bit waylaid last week myself.  ;)  But seeing enough now to know you're doing great. Congrats to another member of the Class of '09!  :)
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Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!

cindyj

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Re: Stoneaxe's Update
« Reply #77 on: June 22, 2009, 07:11:06 am »
Hey, Bob!  Great to hear you're up and about - keep moving and napping, moving and napping...You will continue to progress day by day, but you may have some days that you feel like you took a step backward...that's normal and ok...I know you're going to be one of our model recoveries!

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

mk

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Re: Stoneaxe's Update
« Reply #78 on: June 22, 2009, 07:27:20 am »
Bob,

congratulations on the excellent outcome.

Did the surgeons commented at all on whether the surgery was "more difficult" given that the AN was previously radiated? Did they say anything about "stickiness" etc? It sure seems that they didn't have any problems removing it, given how well you are doing, but I was just wondering.

My best wishes for a speedy recovery.

Marianna
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GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

tsl

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Re: Stoneaxe's Update
« Reply #79 on: June 22, 2009, 07:45:14 am »
Quote from: stoneaxe on June 21, 2009, 11:07:45 pm
Phew...long day today...tired. Makes a differnce in my face. More week tonight. Still closing eye OK though. A little blurry vision.. I've been up since 6 this morning. Mostly on the couch but some walking around too. Going to take a slow walk on the treadmill tomorrow while I do balance PT. We'll see how far I get. Going to be careful but I am planning on pushing it at least a bit.

Molly...yes Sue did say you stopped by...thanks so much!

OK...time for bed. Thanks again everyone... ;D
Hi Bob and Sue (aka The Boss),
So happy for you and your family that your surgery went so well.  I have to agree with the others, Brad Pitt has nothing on you, Bob.  Not many people can look ruggedly handsome after brain surgery!

It appears that your biggest problem will be NOT PUSHING IT.  I think "The Boss" is going to have her hands full.

Again, I am so happy for you and all your family. 

Take care,
Theresa (tsl)
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AN diagnosed Dec 2006
Approx. size 9 x 6  x 4 mm
Proton Beam radiosurgery wtih Dr. Jay Loeffler (radiation oncologist) and Dr. Paul Chapman (neurosurgeon) at Mass. General on Nov.2, 2007

NancyMc

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Re: Stoneaxe's Update
« Reply #80 on: June 22, 2009, 08:07:14 am »
Bob,
Don't you get some kind of double postie status?  Is there such a rank, and how many of you are there?  Perhaps you learned something in that area pre-op or could ask the docs at your follow-ups.
I notice my facial weakness increases when I'm tired, so no worries in that department, okay?  Looks like a string of nice weather headed our way for a change, so that will be a big mental challenge.  How about a nice balance-challenging walk on the beach?
It seems like yesterday you were profoundly concerned about regrowth, and presto, it's gone!  Imagine that . . .
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

SML

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Re: Stoneaxe's Update
« Reply #81 on: June 22, 2009, 10:24:14 am »
Quote from: Jim Scott on June 17, 2009, 03:41:41 pm
Tell him he's now an 'official postie-toastie' (has undergone both surgery and radiation).  :)
Jim

I like this "postie-toastie" status! ;D

I'm glad your feeling good Bob, but... IMO... this first week... you shouldn't be pushing, even if it's just a little.  :-*

Scarlett
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SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.

The Boss

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Re: Stoneaxe's Update
« Reply #82 on: June 22, 2009, 11:10:41 am »
Hi everyone,  I hope you were all getting Bob's updates.  Nicole was sending them. she is a much better writer than myself so she was in charge...  I have a question.. Has anyone expereinced severe headaches when coming off of steroids?  Bob is now down to 1 steroid and he feels awful today.. headaches, he says he feels like his face is drooping more, etc. I have been giving him the oxycodone for the pain but he seems to be really suffering.  Any replies are greatly appreciated.  Sue
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moe

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Re: Stoneaxe's Update
« Reply #83 on: June 22, 2009, 01:24:15 pm »
Glad to see Bob is home now, I'm late!
The headaches could be due to the steroids or just more likely brain surgery. Don't be shy on the oxycodone. If he needs it, he needs it. I had headaches for 6 weeks, (which did go away.). Tylenol is good too, if it is not mixed with the oxycodone.
And cold press on the head. All those little extra special touches help.

Recovery is so different for everyone. I read something about the treadmill on a recent post????? Maybe should hold off on that.
How about nice quiet walks around the neighborhood?!

So make sure he doesn't overdo it, Boss!
Rest, walk, sleep, eat, rest, walk, sleep, eat, should be the order of the day for at least a week post op :) ;)

So glad to hear all is well. He just needs reminding that he just had brain surgery.
I knew he would rock it. :)
Maureen
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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

stoneaxe

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Re: Stoneaxe's Update
« Reply #84 on: June 22, 2009, 03:19:14 pm »
Thanks everybody...yeah...I think I might have been a bit optimistic about the treadmill... ::). The boss has clamped down a bit on me too. I thought I was cruising on Saturday...must have been the feeling of coming home. I feel like I ran into a wall today.

I like the "postie-toastie" status..... ;D

Marianna....I didn't ask that question directly but will do so next week when I see Dr McKenna. The fact that it went "smoothly" and was quicker than anticipated would make me believe it wasn't that sticky but I'll find out.



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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

NancyMc

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Re: Stoneaxe's Update
« Reply #85 on: June 22, 2009, 05:36:07 pm »
Bob,
As you may painfully recall, I was very high on the steroids post-op.  I had a prolonged regimen due to delayed facial weakness.  Your quicker tapering schedule may be allowing the masked symptoms to rear their ugly heads.  I became tired and without energy or motivation.  You may simply have to treat each symptom as necessary until it resolves.
Wishing you free of pain,
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

SML

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Re: Stoneaxe's Update
« Reply #86 on: June 22, 2009, 06:41:11 pm »
Hi Bob,

Sorry to hear your having headaches. I had only one day of steroids left to take when I got home, but I had severe headaches (especially during REM sleep) for the first three weeks every night. :(  I felt like my head was going to explode! I found a Percocet and a Valium took care of the pain within half an hour or so. To this day I still get the severe headaches at night, but thankfully they are getting further and further apart. The ones I get during the day are controlled with Tylenol or Ibuprofen.
I hope your headaches don’t take that long to go away.

Scarlett
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SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.

sgerrard

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Re: Stoneaxe's Update
« Reply #87 on: June 22, 2009, 08:55:13 pm »
Quote from: stoneaxe on June 22, 2009, 03:19:14 pm
The fact that it went "smoothly" and was quicker than anticipated would make me believe it wasn't that sticky but I'll find out.

Actually if it went smoothly and was quicker than anticipated, it doesn't really matter if it was sticky. :)  The real question is whether it made a difference in the outcome, which it appears it did not.

Sorry to hear about the headaches, though. I wonder if you came off the steroids too quickly? I had steroids before I was diagnosed, and they were certainly weird, anyway. I would be happy to attribute all sorts of powers to them, including the transformation of Nancy into the Energizer Bunny.

I think you are still in the "things can change day to day" stage, so it may not take long to get past this and on to the next thing. I hope so.

Steve
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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.

joebloggs

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Re: Stoneaxe's Update
« Reply #88 on: June 23, 2009, 01:11:29 am »
Hey Bob,

Hope the headaches bugger off soon - I didn't have any and wasn't on any steroids when I first left hospital so can't really help.  I can tell you I had a lot of rest when I got back from hospital - I was having a 2-3 hour nap in the afternoon every day for about a week after coming out then after that maybe an hour or so for a week.  Occasionally I still have a little nap.  Hope you're feeling a better soon,

take it easy

JB 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!

Tumbleweed

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Re: Stoneaxe's Update
« Reply #89 on: June 23, 2009, 01:19:08 am »
Bob, I hope you feel better soon!!!

Best wishes,
TW
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L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08
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