Tuesday, September 11, 2012

Trigeminal Neuralgia

This is the machine that is going to save my life. It's called Perfexion.

After 2 1/2 years of hearing things like "we can't see anything wrong", "everything looks great", "you have a perfectly normal looking ear/tooth/neck/face/gum/MRI/CT/X-Ray etc. etc.", "your symptoms are atypical so I am not convinced it's...", "is it possible that this is mental/environmental/stress related/exaggerated etc. etc.", ETC. ETC. I FINALLY have a scan in my hand that shows with 100% certainty that I have Trigeminal Neuralgia. It's there. It has finally showed its face on a scan! The main artery which feeds the brain is pushing on the middle branch of the trigeminal nerve. In essence, strangling it. I can see it. But better yet, the Neurosurgeon can see it! I AM NOT CRAZY!!! There is, and has been for a VERY LONG TIME, something wrong with me!!!! The elation I have at this news is impossible to put into words. This beast has been elusive, sneaky, and manipulative but I am going to beat it!

In the coming weeks I will have Gamma Knife surgery, the least invasive of two surgeries for this disorder. I have an amazing Neurosurgeon who is nationally known as a the leading specialist in this procedure. I swear, if my daughter hadn't been in the room, I would have jumped out of my chair and kissed him all over his face when he told me the news. It's no longer "atypical Trigeminal Neuralgia pending further testing". It's just Trigeminal Neuralgia. And he can fix it!

The risks are minimal, and the procedure is relatively pain free. My biggest risk is from the anestesia, which is not required, but there is no way I can tolerate being strapped in that machine with a box over my head for an hour and a half, so yeah...knock me out. The odds are really in my favor. 3% chance of some facial numbness. 0% chance of paralysisis or deminished movement in my face (my two big concerns). 80% chance the pain will be gone forever. 20% chance that it will return in 3-20 years, most likely on the higher end, at which time my children will be older and we can investigate the more invasive, more painful, riskier, Vascular Decompression, or do this again...the choice is mine. That's IF I'm in the 20%...which I REFUSE TO BE!!!

And he said the magic words..."This is how I would treat my wife." Anything that is good enough for a Neurosurgeon's wife is good enough for me! Sign me up!

So just for fun, let's break it down by the numbers.

2 1/2 years of continual (24/7) pain in the gums, ear, head, neck, shoulder and now elbow. Hearing loss in right ear.

3 crowns, 1 root canal, 2 dentists and 4 endodontists exploring every possible dental reason for the pain.

I have seen a General Practiotioner, ENT, Neurologist, Oral Facil Pain Specialist, 2 Neurosurgeons, 2 Accupuncturists, an Herbalist, a Chiropractor, and even someone who does Reiki. Most of those with multiple visits.

Hundreds of hours at appointments. $1,000's spent in co-pays, out of pocket expenses for second/third/fourth opinions, prescriptions, & parking.

1 Sinus CT, 2 Brain CT's (one with contrast, one with Iodine), a brain MRI, a Cervical MRI.

12 medications, most of them with side effects. Most frustrating being, short term memory loss, apathy, depression, weight gain, fatigue, confusion, inexplicable crying.

I have cancelled many social events due to lack of energy, interest or confidence. But most of them because it's hard to put on a smile when you have chronic pain. I didn't even go to my high school reunion.

I have missed hundreds of hours with my husband and my kids. I have spent many nights crying myself to sleep. I have been irritable, cranky, lethargic, moody, strange, all around pain in the neck to live with. There were months that I spent more money than we make, all on medical bills. I miss my family. I miss my friends. I miss my life. It's time to take it back! Let's do this.