Author Topic: 16 Weeks post, still progressing  (Read 1750 times)

Tod

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16 Weeks post, still progressing
« on: June 09, 2010, 05:25:03 pm »
Well, it is actually a few days past 18 weeks, and a couple days short of four months.

All is proceeding remarkably well, especially in the context of a 31-hour surgery and two weeks in ICU.

I am in my fifth week back at work. All is going well on that front, tiring, but well.

I saw my neurologist last week and he is very pleased with my progress. He wants to see again on Dec 1 to start talking seriously about BAHA. Feels I need more time to heal, especially if do end up with radio therapy of some type this summer or fall.

I have something like 70% or greater facial movement. My face is pretty symmetrical for most purposes save big looks of surprise or big smiling (which I don't don't do much of). Expressive talking will also break the symmetry.

Talking has been a serious issue as my left vocal cord is still paralyzed. I had another procedure today to inject vocal cord to plump it up an allow the right vocal cord to close against it. That was pretty successful resulting in a much improved voice and the ability to get out more than five or six syllables at a time without running out of breath. Throat is still pretty sore and will still be staying quiet a few days longer. Up until today if had to speak at length at work I would actually get lightheaded. This same procedure was done on March 3rd and my body absorbed the vocal gel fairly quickly. Today's injection should last approximately four months - hopefully the nerve will begin to get its act together by then.

Coughing still remains an issue, tied up with vocal cord paralysis, I hope this will abate some. Soon.

I can close my left eye, but still don't blink. Have to use GenTeal Severe Dry Eyes Gel and the PM version. Cornea is in pretty decent shape as of last week. The double-vision was much reduced by the first prism from a measurement of 14 to 8. The installed prism is actually a 4 in hopes of forcing the brain to the pull the image together.

Left shoulder is still weak in the extremes. Biggest problem, apart from twinges when getting dressed, is getting coins in the basket at the toll booth - it requires focus on the task.

Still no headaches. I would love to write that a thousand times, because I am aware of just how lucky I am.

Swallowing is still major challenge at times. I simply cannot be casual about eating, usual lack of saliva and no real involuntary muscular action. I have lots of coping mechanisms and so this is more of challenge than problem. The docs have also doubled my Omeprazole to twice daily to manage the stomach acid, reduce the possibiliities of reflux, etc.

Balance is pretty darn good. Not perfect by any means, but pretty good. Will try walking in the dark in a few days as guage. Six weeks ago that attempt was pretty poor in outcomes.

Overall, I feel pretty darn good about my progress.  MRI on July 12 the day after my wife and I get back from vacation. We'll see that the neurosurgeon thinks immediately following.

Life is good. Really good.

-Tod



Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

moe

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Re: 16 Weeks post, still progressing
« Reply #1 on: June 09, 2010, 10:10:16 pm »
Tod,
Thanks for the uplifting update :) You have been through soooo much and you are counting your blessings and accepting your limitations (and loss of voice) very nicely.
I am really impressed. What an inspiration. Being back at work and everything. Things will only get better.
Keep up the positive attitude and keep going forward like you are doing!
I am also thankful that I don't have headaches, because that would just make me not want to do anything. I can escape the tinnitus (somewhat)  and work on the balance, and  facial issues are moving along.

Keep in touch, let us know how you continue to recover. Awesome, I repeat awesome recovery!
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

Lizard

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Re: 16 Weeks post, still progressing
« Reply #2 on: June 10, 2010, 11:20:29 am »
You really do have a wonderfully positive attitude concerning your deficits and the whole AN process.  I admire you for this and enjoy reading positive posts. Gives others reassurance.  Enjoy your vacation! Take care
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

leapyrtwins

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Re: 16 Weeks post, still progressing
« Reply #3 on: June 10, 2010, 12:45:12 pm »
Tod -

glad to hear things are going well after that marathon surgery.

If you ever have any questions about the BAHA, don't hesitate to email or PM me - or post a thread.

Best,

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