SUCCESS STORIES

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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.

Comment by Riaan on January 30, 2012 at 12:52am

Thanks Crystalv,  I am very fortunate to be pain free, I feel my BLESSING every day!! 

Comment by crystalv on January 28, 2012 at 6:49pm

Riann, that is so wonderful.  I'm so glad to read you're off your meds and the MVD worked.  I wish you all the best in the future, you deserve it.  Thanks so much for sharing your story!

Comment by Riaan on January 27, 2012 at 2:06am

My story began Dec 2010 while washing my face I suddenly felt this stabbing pain in my upper jaw.  Went to the MD and send me to a dentist.  The dentist was very good and almost immediately suspect TN.  I was send to a Neuro Dr who confirmed the dentist suspicion.  I was put on Tegratol, first a light dose, but the pain only got worse and my dosage was up almost every month, till it was 1200 mg daily.  After praying about it I went for surgery (Jannetta procedure).  After the surgery I still had a little pain but it soon was gone.  It is now almost six months without any meds or pain.  I praise the Lord for my healing.  I was touched by Him to see that the pain (not only TN) within someone can be far greater than can be seen from the outside by other people.  I hope that my story will give hope to others and encourage others to never give up looking for a cure...             

Comment by Stef on April 4, 2011 at 3:36am

I believe I can safely count myself along with the other success stories now.  I hope it lasts.  I have enjoyed many days now with hardly any ATN symptoms, thanks to a Nurse Practitioner who listened, and a Pain Management doctor who seems to know what he is dealing with when it comes to my condition.

I have been to see so many doctors since 2003 now concerning my  facial pain, before and after it was diagnosed as Trigeminal Neuralgia.  I've had injections =, physical therapy, and have tried enough different medications to write an abbreviated PDR!  

The Morphine they gave me, along with Oxycodone for breakthrough pain has eliminated my need for Neurontin.

I continue on Diazepam, prescribed by my Psychologist.  I believe that it helps, but in time, I wonder if I can drop that med from my list too!  I hate dumping more chemicals into my body than necessary.

But, for the first time in years, I see hope!  The searing pain in my cheeks, pressure along the sides of my head, the aching in my jaw, the feeling that something was trying to either pull my throbbing teeth apart, or push them together, the burning in my upper palate and back of tongue - ALMOST GONE!   Breakthrough pain has been rare.  

 

I feel like I may just be able to get on with improving my life now, perhaps return to school, or to work, once my body adjusts a bit better.

 

My treatment regimen is not for everyone, but I do have faith now that I, and I never dreamed I would be, am a SUCCESS STORY!

 

Of course, I am going to get a second opinion as whether or not surgery would be of no benefit, and I am to see a Head and Face Pain Specialist.  But, for right now, I am having  DAYS WITH NO PAIN.  I am not nearly as sleepy as some of the other medications have left me.  

 

I feel very excited and blessed.  Now, perhaps, I can be more of the person my family deserves and needs me to be.  

 

I give this glory to God!

 

I just wanted to share this with all of my friends.

 

Don't you give up.  In my case, it seemed darkest just before the dawn.   I had believed, that in all actuality, I may be sidelined from thinking I could do the things I am enjoying now without pain.

 

The sometimes Lvl 9 and 10 hellish pain, which would plague me on almost a weekly basis, seems as if it may be a thing of the past, for now.  It seems almost too good to be true!  

Best wishes to all here that each of you receive informed and compassionate care.

Love and regards to all,

 

Stef

Comment by Bob Snodgrass on March 13, 2011 at 10:35pm

"SUCCESS STORIES" a work in progress...in 140? http://twitter.com/#!/dbobsnodgrass

Comment by Nanette Nix on March 1, 2011 at 8:58pm

My story started in July of 2009.  I started getting this stabbing burning pain in my right jaw.  I had been taking Actonel for osteopenia and jaw pain is a rare side affect of that horrible drug.  I stopped taking it immediately, but a month later, the pain was getting worse.  Had moved up to my cheekbone, ear, teeth, lips, the whole right side of my face.  The most excruciating pain I have ever endured! I could hardly function. If I stepped outside and the breeze hit my face, forget it.  I was down for the count.  My PC doc thought it was sinus issues, since I had them anyway. She did, however, mention a face nerve with a funny name "tic de leroux" or however it's spelled.  She ordered a CT scan of my sinuses and sent me to see a ENT doc.  He reveiwed the CT and found a couple of small polyps, but said they were completely normal.  Everyone has them and they come and go.  He gave me a nasal spray and sent me on my way.  My PC then sent me for an MRI of my brain thinking this could very well be the nerve with the funny name creating havoc or MS.  She scheduled an appt with a neurologist for me.  He quickly ruled out MS and after a thorough examination confirmed I had TN.

I must say during the interim of all this waiting and scheduling to see doctors, I was dying.  I spent the whole month of October in bed.  I couldn't move.  I couldn't sleep.  I would pace the floor at night mumbling to myself or sit on the bathroom floor rocking and crying and begging for God to take me.  My pain felt like someone had stabbed me in the face and then lit a torch to it. The burning was unbearable.  The ice pick pain was unbearable. I was depressed. I had lost myself and my family was worried about me.I had narcotics, for neck issues, that I took and they didn't touch the pain.  Little did I know at the time, this was a telling sign, as narcotics don't touch nerve pain.

I went through months of adjusting meds and adding new ones until we finally got a combination that worked. I remember the pain lessoning day by day until I had a day without any pain. I was thrilled and yet scared to death it wouldn't last.  I have now been 11 months pain free and I'm actually cutting back on my Carbatrol...YAY!  I've gone from 900mg a day to 200mg a day.  I'm still on 2 other meds along with it, but baby steps.  I have had a couple of times where I felt a "minute" dash of pain, but it could be allergies or I could be in denial.  I choose the allergies!  Today, I walked 3 miles in the wind.  I couldn't have walked 3 steps in a breeze before.  There were times I NEVER thought I'd see or feel a pain free day.  So, my message to you is NEVER give up the fight or the hope.  I was very close to giving into the Gamma Knife procedure.  I'm so blessed that I didn't have to.

 

I pray all of you will have a success story to tell one of these days... soon. That is my wish...my hope...and my prayer.

 

Comment by Tina on March 1, 2011 at 8:39pm

I have a long story that starts back in 1999. I was stopped in a school x-ing zone behind others cars as people were crossing with the guard in middle who had all traffic stopped. Then a semi trailer truck hit me from behind going 45. I got pretty messed up. But dont want to go into deep detail . My lower jaw was broken on both sides. I was wired up for 16 weeks. After wires came off and my jaw was free from its steel cage. The pain never went away it grew bigger and meaner . After 4 months went to dentist The x ray of my mouth when at visit showed my jaw was still broken on both sides . So bone graft steel plates and some shaving of jaw was done wired up again for 26 weeks. Long story short I ended up with A.D. As the nerve on lower right ( v-3 ) got snapped during accident and the plate on that side is very close to the snapped nerve. I Couldn't kiss, brush teeth ,eat or drink hot or cold things. Moving air , my tongue touching my lower lip, or tongue touching inside of mouth the teeth and gums on that right side chewing food on the inside of mouth on the bad side . Meds meds meds combos nothing helped I was suicidal . Then at last in 2002 I was the first or I was told at time and have not found anyone before me.. and boy God how I tried to find someone else who had it before me. It would have helped so much to connect with someone before I had it. The PNS implant.
It gave me my life back saved my life. It has taken me quite a bit of time to accept this monster and talk about it ,share. I got pretty low I couldn't watch t.v. Because everyone's mouth and face worked they could smile kiss talk drink without effort or pain. I hated my body for betraying me and not healing or working the way it used to. The zombie fog of the meds. Kept me from being a mother and a wife and a human being for that matter.. yeah pretty damn dark that place can be. Anyways I have my pain managed by my PNS I have picture of myself right after surgery on my members page .
I have been trying to help others who are approved for this option. I started a thread about it at another forum so maybe someone has seen it . Right now I am in contact with 2 that are approved and going threw the process and one trying to get approved. But I have helped others . And that seems to be my duty. Pay back from gaining some control. Sharing so perhaps someone else can knock the pain back a few steps and get some of their life back like I have done. I think I have the link to my thread on my members page also . If anyone wants to talk or has questions. I would be glad talk and make some new pals also help if I can.
Hope is out there. Low pain wishes to all !
PEACE
Tina

Comment by Richard A. "Red" Lawhern on March 1, 2011 at 6:58pm

Fire when ready,Gridley.  Post to the wall.

 

Regards, Red

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