A personal account of my dealings with progressive multiple sclerosis. And my battle with trigeminal neuralgia and the brain surgery that stopped the pain!

Sunday, September 14, 2008

Hurricane winds on the way home from conference

Wow.. our ride home was eventful. We've never experienced a hurricane in Indiana. This was remnants from Ike... but man oh man we couldn't believe it. We took a side ride to the overlook at Leavenworth, Indiana. And I shot this video of Tommy during a huge gust. We later saw that the eye held together all the way into Michigan! WOW:

Our room at the Dearborn Inn

Thought I'd post some pictures of the awesome room we had at the historic Dearborn Inn:

Final thoughts

This was a great conference. Going to post a bunch of pictures. Sorry they weren't of great quality as I used my iphone so I wouldn't disturb with the flash. TNA had a professional photographer there so I am sure the website will have great pics!

If you ever have a chance to attend a regional conference or a national one.. do it! This is important to meet others who have TN or atypical face pain. You get 1 on 1 time to talk with some of the world's most skilled Neurosurgeons and researchers.

We'll never regret a moment. And have met some friends we'll have for life! (I pray for eternity)

Saturday, September 13, 2008

Spoke to fellow TN suffer's

Early in today's sessions we listened to a Pharmacist discuss the pharmaceutical approaches to treating neuropathic pain. And the routes particular chemicals must take to hinder this pain. It is always amazing that opiates aren't particularly helpful in treating this pain. And TN pain responds to different anti epileptic drugs than say diabetes neuroptic pain. We heard about the types of drugs normally used and how they work and which ones have more adverse side effects than others.

I found it interesting in a summary that only 5% of patients find any long term good quality of life by treating their TN pain with medications.

And 70-90% find long term improvement from surgical intervention.

Today was especially interesting at the conference if someone was interested in surgical techniques for dealing with TN.

MVD (the surgery I had) is proven to be the most effective surgical approach. Less problems with lasting issues after surgery. But of course it is the most dangerous of the surgical approaches because it is the most invasive. There was some disagreement regarding the mortality from MVD but it was pretty much around 1 in 1000. (some said more.. some said way less) Dr. Janetta said that no one had died as a result of this surgery since 1979.. I am not sure if these are worldwide statics or US alone.

They ask for volunteers who've had surgical procedures and were pain free since. So I got to share my story this afternoon along with 6 others. In this group of people.. most are in pain and this is why they are here. Not many people continue their involvement with TNA once they've stopped having pain. So I hope we were encouraging to some considering their options. Mostly I hope I was able to promote the Lord Jesus and my trust in Him.

Tonight will be the gala and the end of the conference.

There was a really bad hurricane (Ike) in Texas last night.. and our travels will be affected by the aftermath tomorrow.

Friday, September 12, 2008

Watched 3-D MVD with inventor commenting

Today was exciting as I watched a 3-D video of microvascular decompression surgeries with Dr. Peter Janetta (among others)! What a remarkable man. He invented the surgical technique that stops TN pain in its tracks for 90% of people!

Here is the link to the book written about him: Working in a very small place

I shed a tear thinking of the awesomeness of the surgery I endured just a year and a half ago! And how very thankful I am to have had success!

Anyway Dr. Janetta is convinced that hypertension, diabetes, and even Parkinson's disease are all caused by vessels compressing cranial nerves. Amazingly he said that he has already treated these conditions with MVD surgeries. WOW Fascinating for sure.

Tommy and I met so many folks today who have dealt with this monster and more. Some have had more than one MVD. Some have had other procedures including Gamma Knife surgery, balloon compression, radio frequency surgery and glycerol in injections. Others have found relief from complimentary medicines and procedures. One topic discussed today was Acupuncture for TN. We met a lady who is wearing a trial electric stimulation device which sends an electrical pulse to her neck and head when she begins to feel the pain of TN.

We've met many people who have had their lives nearly destroyed from the pain or from the "cure", the anti seizure medications that are supposed to dull the horrible TN jabs yet often dull one's entire mind in the process.

Then this evening the conference hosted a reception. The food was fabulous. I experienced my first chocolate fountain! Yummiest with pineapple!

Well exhausted and more updates and pictures coming tomorrow.

TNA Conference

Scoop straight from the conference

After introductions we had a very detailed, (not laymens terms) discussion on the science of pain from
Dr. Manfrrd Zimmerman who is from Germany.

Here for TNA's 7th national conference!

We've enjoyed our trip to Michigan for the conference. Visited with friends in Cincinnati and stayed there one night then got here to Dearborn yesterday.

Registration for the conference begins in 1/2 hour!!!

I will try to post important news and maybe some pictures.

Sunday, September 7, 2008

Heading to TNA national conference

Well we're getting ready to pack up and go to the TNA national conference

This conference will be in Dearborn Michigan. We've attended the regional conference in Nashville previously. But never the national one.

I've ask people to pray as I consider this an opportunity to minister. So many folks who deal with unspeakable pain. Desperate and suffering alone. When they come together with others who have experienced this monster hopefully they feel less alone.

Some have considered ending their fleshly lives because they aren't able to tolerate this hell any longer. Some have lost marriages, friends, all of their hopes and dreams because of their intimate connection with trigeminal neuralgia.

So my desire is to be available for anyone who needs hope in the midst of their pain. I cannot stop their pain; but I can lead them to someone who can promise to walk through it with them and give them a future and a hope. I can be a living resource of hope for those whom MVD surgery is an option. They can ask questions about the surgery. And know first hand that someone has found relief via major surgery.

Tommy and I don't get many trips alone. We've been blessed with the Florida trip (a gift from precious friends); but we've most often got family traveling with us on that trip.

So we also look forward to the long road trip together. I'll pile up good podcasts and a few audiobooks and some music. We'll enjoy traveling together.

Our plan is to stop half way and visit with some friends who live in Cincinnati. Then spend the night there and head the rest the way to Dearborn the following day.

The conference was provided as a scholarship from the TNA. So we only need to provide our travel expenses and our room. We could not have afforded this otherwise. The hotel looks wonderful. Most meals will be provided.

I'll post more about the conference and some pictures soon.

Blog Archive

About Me

My photo

Love Jesus! Mac Enthusiast! Love all things tech!

Married to high school sweetheart for 42 years! 
Multiple Sclerosis tries to get me down. 
Previous Trigeminal Neuralgia sufferer-successful MVD in Nov of 2006. 
Mother of 2 grown sons. GrandMother
Gardener, Twittering Lady.
Podcast lover. Previous fitness instructor.. previous Childbirth educator, previous school bus driver, previous racewalker.

Lots of previous.. but unending future! Gifts: encouragement, helps, discernment. Lover of People.

Recently my youngest son 33yrs old- (now 37)  was  diagnosed with early onset Parkinson's disease- this is the toughest road yet. But by God's divine hand- we'll survive. 


I am exceedingly humbled that He knows me by name and actually died that I might live. And then He sought me out! This is joy unspeakable.


Did I mention that I had an uncle named Steve ?