ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Tod on February 10, 2013, 09:05:25 am
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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
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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
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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.
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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
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Love your attitude of gratitude, Tod. You're a tough dude. Stay strong, bro!
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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
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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
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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