Author Topic: Crazy Surgery Recovery....VERY LATE!  (Read 519 times)

Briec

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Crazy Surgery Recovery....VERY LATE!
« on: May 06, 2019, 06:20:28 pm »
I have not been here or posted for many years. My journey started nearly 10 years ago with the diagnosis and emergency surgery. I had another surgery just two years later. The tumor was so large (over 5cm!). The second surgery created the paralysis. So, I went to FOUR surgical centers over a number of years (John Hopkins, Huston Methodist, UCSF, and Mayo Clinic) trying to make the next biggest decision (fix my face). I reside in LA so, I went to a local surgeon at Facial Paralysis Institute and although nice, did not take my insurance however, may superbill some so, he may work out for you. Anyway, I ended up on my FIFTH center which was in NY. Keep in mind I had full paralysis and my eye was stuck wide open (for nearly eight years!!). No closure at all unless manually or with tape. I had tons of migraines, etc.. So, after the surgery I had very minor improvements with almost nothing recovered for more than a year and a half. Cut to two years and a few weeks. My eye closes and crazy axiom action (intense tingling for weeks throughout the days). I am not saying that my mid face is back but I feel it all working and got my first lower mouth movement this past week under the mouth and twitching on the side of the face (first major movement in nearly eight years!). I wanted to say that every single surgeon said there would be no recovery of the eye with my level of paralysis and type of surgery.
I wanted to also share with you that I have biohacked my recovery with new technologies (there is science behind them). I wanted to say that if you had a 'less invasive' facial nerve surgery (no transplants), there is hope so, be patient.Two years and nearly two months and then my eye went from no closure to complete in under two weeks from first sign of life.
Some of the things I do are intense cardio (burn over 1100 calories an hour) and 20 minutes sauna on around 122 degrees. every night (only took off four nights last year and none the year before). I also used red light. I think this one is the most beneficial and I can feel the tingling when I use it. You have to get a machine that mimics' the ones used in pt offices. Also, push for extreme cold and heat. I am going to do a two minute extreme cold plunge next week (you have to work your way up). Add intense massage. I did not go gently because I was eager for that energy. I believe in this and I had results that I was told by virtually all the best surgeons in the US and one in UK were not possible. The eye piece of the paralysis was the most difficult and challenging so, I set out to make sure I did everything possible to get the best possible outcome (or at very least make the best effort I could). I wanted to share this with you because I did not see any of this information when I began my journey (except the cardio and gentle massage of the face). I am fortunate to live in a city (LA) that has the newest technologies and come from a science background so, always reading up on new technolgies. I even called a lab that is working on a skin probe that will dissolve and generate nerve recovery that may be testing in a few years (they projected to start this in 2017 but had set backs). There are research scientists working on new treatments so, if you are not 'in' on surgery and hard work, keep a look out for new options in years to come.  I hope to learn from others on this journey with similar outcomes that employ these technologies. I do not think mine is unique and hope you can all prove me right!
I have insecurities...of course...but I don't hang out with anyone who points them out to me!

ANSydney

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Re: Crazy Surgery Recovery....VERY LATE!
« Reply #1 on: May 06, 2019, 09:55:49 pm »
Congratulations Briec. What a wonderful story. I'm sure somewhere is there is some useful information for others. If you can find someone doing research in this are (maybe at a university) they may be able to distill what you did and what is happening.

Look forward to hearing more from you.

Sanderson

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Re: Crazy Surgery Recovery....VERY LATE!
« Reply #2 on: May 06, 2019, 09:58:59 pm »
Well that is a lot to think about. I have noticed that exerting myself causes tingling in my tongue and lower jaw. I have to think the blood flow encourages nerve stimulation. Is this your belief?

Did you have nerve graft surgery or none due to insurance issues?
Sara
Acoustic Schwannoma surgery March 28, 2018
Sutter Medical Center in Sacramento
Deaf in left ear
Facial paralysis on left side
Balance is fine thanks to walking three energetic dogs everyday and yoga twice a week!

Briec

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Re: Crazy Surgery Recovery....VERY LATE!
« Reply #3 on: May 08, 2019, 03:40:24 pm »
I had a masseter graft over two years ago.
I have insecurities...of course...but I don't hang out with anyone who points them out to me!