We are patients living with Trigeminal Neuralgia, here for your support.
A forum to share your sucess stories on any number of TN related issues, such as MVD, Gamma Knife, medications or alternative therapies, etc., to give the rest of us ideas and hope for the future.
Location: subject-specific group
Latest Activity: Mar 3
Started by Kate Cotter. Last reply by Nanette Nix Mar 1, 2011.
Just to get us started, here is a small piece I wrote about my TN success story. (I know it's been posted on this site a few times already, so I'm sorry if you've read it before!) I do plan on adding…Continue
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
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!
I also love to read these happy happy stories xx
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)
Congrats Patti, what a relief when the pain leaves. Thanks for sharing.
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.
Welcome toTrigeminal Neuralgia (TN) - Online Support Group
Sign Upor Sign In
Or sign in with:
This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Acute Disseminated Encephalomyelitis (ADEM)
Arteriovenous Malformation (AVM)
Atrial Septal Defect
Charcot Marie Tooth (CMT)
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Guillain-Barre Syndrome (GBS)
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Traumatic Brain Injury (TBI)
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
© 2013 Created by BensFriends.org
Report an Issue |
Terms of Service
Please check your browser settings or contact your system administrator.