SUCCESS STORIES

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Comment by mrl on January 1, 2013 at 10:25am

on Dec 15, 2011, my journey with pain began. it took 5 months to get a diagnosis, and my life was devastated. this past year I've lost a job, a significant other, and 30 lbs of weight. so why am I posting here? as fall approached, I was beginning to despair of life getting anything but worse. I actually printed up a success story from this site & kept reading it periodically to keep hope alive. while I am not pain-free, I am finally getting some significant relief from a new drug combo, and have hope of being able to live with this ATN. on Dec 15, 2012, I was at a military conference & happened across a device for chronic pain. I talked them into letting me try it for a few days, & got more pain relief. it's called the P-Stim. (there was also an "Alpha Stim" device that I did not try). I am scheduling an appt with my pain doc to see if she will allow me to continue treatment. so my message for everyone: there are new things coming up all the time, so never ever give up hope!. keep trying. there is help for most.

wishing a happy & better new year for all on this site.

Moderator Comment by Richard A. "Red" Lawhern on December 31, 2012 at 3:49pm

Kate... yours is a message that others need to hear as well.  Thanks for sharing it with us. 

Regards and best,

Red Lawhern, Ph.D.

Resident Research Analyst, LwTN

Moderator Comment by Mimi on December 31, 2012 at 2:34pm

Thank you Kate, it brought tears to my eyes! Happy New Year!
((( hugs ))) Mimi

Comment by Kate Cotter on December 31, 2012 at 2:04pm

Hi everyone,

I'm posting a blog entry I wrote here. It is from over a year ago now, and is more of a community success, rather than a physical success. But it shows how we really can help each other beat this awful disease. Here's to an amazing 2013 and all the success it can bring!

http://smatteringofcookies.blogspot.com/2011/11/amazing-cookies-gra...

xox

Kate

Comment by mrl on October 5, 2012 at 1:01pm

agree with Albee. when the pain is bad & I feel there is no hope (& we all know where that leads...) this helps me to keep trying stuff & to believe there may still be hope of a life

Comment by elstep on October 4, 2012 at 4:13pm

I also love to read these happy happy stories   xx

Comment by Albee on October 4, 2012 at 3:33pm

I love you for starting this. On my worst days, THIS is what I need the most and THIS will help me find HOPE (which is very very very tough on some days)

Comment by tiffanie on October 4, 2012 at 3:02pm

It is uplifting to hear successes! I think that everyone here knows that no two face pain cases are the same. But all the brainstorming, and research the thoughts are important.
I'be had type 1 TN for about 4 years. I am desperate to stop taking cabamezepene. So I am trying acupuncture, and after 5 sessions, I am feeling improvements, while I have lowered meds a bit. My Neuro laughed at the idea of acupuncture. Only time will tell! I am also eating huge amounts of vit b1. In addition to 500 mg of b1 supplements, Per my Neuro. Good luck everyone! Continue the good feelings!! Also noticed my pain breakthroughs were timed with stressfull times in my life. Take care, everyone!

Comment by Jerry Parker on February 1, 2012 at 8:29pm

Congrats Patti, what a relief when the pain leaves. Thanks for sharing.

Comment by patti on February 1, 2012 at 4:38pm

Hi All, 

To share my story; TN for past 5 years. Began with trileptal 2oomg twice a day and it worked for about a year. Symptoms returned, Dr upped doasage to 300mg twice a day. Next year (always in Sept??) symptoms returned. Dr. added Neurontin to the trileptal and upped that to 600mg twice a day.Worked for another year. Symptoms returned. Dr. added Lyrica to the mix just at bedtime. Did not help. He said it was time to consider other options - gamma knife, glycerol injection, or MVD.

   He referred me to a neurosurgeon at U of P hospital (Phila). I went. He explained everything - of course I had already researched it all. I got a second opinion 2 days later at Jefferson Hospital for Neuroscience (phila.) I chose Dr Moshell at Jefferson. He spent more time showing me the MRI and reassuring me that I was a great candidate for the surgery; young enough (age 60), in great health, and no previous nerve damaging treatment for TN (such as glycerol or laser). Jefferson also replaces the hole with your own removed circle of bone; Penn would have used titanium plate. Dr Moshell had done a Fellowship in MVD surgery and had already performed close to 400 when he came to Jefferson last August. He feels that MVD is more of a "cure" while the others are more a "treatment".

    In the last month I had lost 15 lbs. because all I could eat was soft food - couldn't chew. Writing notes because I could not talk. Avoiding dentist for a year (although he is actually the one who diagnosed it and referrred me to neurologist in the first place). Brushing teeth only on left side and very gently using Q-tip on right side. When it became painful to swallow even water, I knew I had to do something fast. Thankfully the surgery had been scheduled 3 days after that.

    Went in 5:30 am. Surgery around 8am, 3 hours later in recovery. Spent the night in ICU. Got up in the am and they brought bkfst. I looked at the toast and thought "I can't chew this". Began to break it into little pieces and remembered I had the surgery so I tried chewing. Heaven!!!! I could chew with no pain. Nurse brought me toothbrush, etc - it felt sooooo good. Put me in step-down unit and I came home on the third day. Staples/scar nice and neat, no pain. A little headachy. 

   Dr's are coordinating to wean me off the meds although he warned that I may not be able to be totally med. free. Funny, my jaw gets fatigued when I eat meat - haven't chewed in so long. 

I am deliriously happy with results. Was very scared but believe me, the prayers of my family, friends, and church miraculously gave me an incredible peace the day before I went in which stayed with me. I thank God for His hand in my healing and for sending Dr Moshell to Jefferson at the time I needed him.

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