Author Topic: Semi-Obligatory Three-year Update  (Read 3339 times)

Tod

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Semi-Obligatory Three-year Update
« on: February 10, 2013, 09:05:25 am »
Hey everybody. I don't post much these days because I am so very busy, but I do check in regularly to see what is going on. I also have very little to say about my situation.

Short update: All is good, I am awesome.  ;D

For those that don't know my story, I had a short time between initial diagnosis, MRI, more consults, and finally surgery. Largish, golf ball-sized meningioma in left CPA, choking off the brain stem and extending into the ear canal. Was told I had three to six months to deal with this before really bad things start to happen. On February 12th we began what was to be a 14-18 hour surgery. Location, stickiness, the amount of tumor attached to the artery, and the dogged determination of the surgical team, surgery extended to 32 hours. I spent six days being intubated and a total of 13 days in ICU. The rehab team wanted me to stay in hospital at least two more weeks but my surgeons said I could go home, and I did. I then spent three months at home recovering until I go back to work. They estimated they had gotten about 90% or so of the tumor,

The left side of my face was paralyzed but had returned to at least 90% in 90 days. The left vocal fold was paralyzed and trauma to the 12th nerve also left me with swallowing difficulties. Multiple laryngoplasties were performed over a year to give me a voice. At the first anniversary of my surgery we decided my voice was finally starting to recover.

That first year I was still "sick" but I didn't realize how much so until the second year and how much better I was doing physically.

I had MRIs every six months. In fact, I have had so many in the last three years that I have lost count. I think my next will 13 or 14. Anyhow, in October of 2011 we determined that the tumor was indeed growing, and growing more rapidly than was good and in January of 2012 I went through six weeks of radiation at the same hospital. While others have no issues with FSR, I did and it wasn't awful, but it simply wasn't pleasant.

Next MRI is in May, probably won't know anything substantive than, other than the fact the tumor is swelling.

I still have some swallowing problems, and my speech is not fully recovered. It is good enough for most things, but sometimes public-speaking is a challenge - and I do a pretty fair amount of that. The difficulties I have are similar to spasmodic dysphonia in that stressful situations cause the left vocal fold to become somewhat unresponsive. The swallowing problems also play a role since it can be next to impossible at times to clear my throat. There are few other speech issues, but these are the substantive ones. Even with them, I do pretty darn well.

I still have hemifacial spasms. Sometimes it is uncomfortable - more annoying than the tinnitus. In the second year I had noticed that my left nostril had partially collapsed. Now it is noticeable to me, and perhaps to professionals, that my entire nose is angled a bit left. I suspect that once the swelling of the tumor starts to dissipate, I may have something done about this, but until then I see no reason to interfere.

All things considered, Life is good. Nothing to really complain about. I have the energy and focus to work incredibly long hours and hopefully in another six months I can go back to more normal schedule. I am having the time of my life right now and my wife and I are closer than ever.

Like I said, I am awesome.


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.

jaylogs

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Re: Semi-Obligatory Three-year Update
« Reply #1 on: February 10, 2013, 09:56:55 am »
Hey Tod, good to see you!! You sound like a glass half full kind of guy, and its that kind of positive outlook that will serve you well!  IT's also a great inspiration for all those who come after us who may be feeling down in the dumps.  Reading your story can only be nothing short of encouraging.  Take care and congrats on the three year ANniversary!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

LakeErie

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Re: Semi-Obligatory Three-year Update
« Reply #2 on: February 10, 2013, 10:50:15 am »
Hi Tod. Glad to hear from you again. I used your experience with vocal cord and swallowing problems as a template for my own recovery in those areas. I, too, improve slowly. The coughing when talking, yawning, or swallowing is the most persistent issue, but I can speak almost normally and swallowing food is much easier though a glass of water is never far.
I can appreciate how time alleviates so many symptoms as your situation demonstrates. And by time I don't mean weeks or even months. Your example showed me what patience really is. It does pay off. Good luck with your MRI in May. I hope you continue to recover in even just small ways, and also hope you will continue to check in here when possible.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

Jim Scott

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Re: Semi-Obligatory Three-year Update
« Reply #3 on: February 10, 2013, 01:48:13 pm »
Tod ~

Thanks for your 'semi-obligatory three-year update'.  :)

You are, indeed, awesome.  Congratulations on a protracted, somewhat complicated recovery that, despite setbacks, seems to be heading for a very positive conclusion  Well done!

Jim

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.

Big Steve

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Re: Semi-Obligatory Three-year Update
« Reply #4 on: February 10, 2013, 06:25:00 pm »
Love your attitude of gratitude, Tod.  You're a tough dude.  Stay strong, bro!
« Last Edit: February 10, 2013, 06:27:33 pm by Big Steve »
Sudden SSD (right side) 11/08 (erroneously diagnosed as caused by virus)
Chronic vertigo commenced 10/12
Intracochlear neuroma diagnosed via MRI 12/2012
Neuroma and right side cochlea/vestibular mechanism removed 01/15/13 via translabrynthine approach

It is what it is

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Re: Semi-Obligatory Three-year Update
« Reply #5 on: March 16, 2013, 09:37:09 am »
Tod, you are definitely an inspiration to me.  What a ride you have been on and yet, you have created a quality life for yourself regardless of the challenges.  Thanks for sharing.

 Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Tod

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Re: Semi-Obligatory Three-year Update
« Reply #6 on: March 16, 2013, 05:59:25 pm »
Karen,  (and everyone else)
Thank you for the kind words. I simply have been fortunate enough to not suffer the real hardships that others face.

-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.

It is what it is

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Re: Semi-Obligatory Three-year Update
« Reply #7 on: March 16, 2013, 10:15:23 pm »
Everyone has their unique journeys with individual challenges.  I am fascinated by hearing about the courage and tenacity displayed by you and so many others on this list. 

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.