Trigeminal Neuralgia

I guess I should start at what I now know was the beginning of Trigeminal Neuralgia for me. In early August of 2008 I started experiencing what I thought was the worst tooth pain I had ever felt. After my very sympathetic dentist examined me with exray after exray her diagnosis was that I had healthy teeth. She sent me home with Vicodin and a referral to an endodontist. The Endodontist couldn't see me until the next week so I continued in horrible pain even with taking 2 Vicodin every 4 hours. After almost a week of this, with Cory having to take off of work most of the time to help me out, the pain suddenly subsided. I canceled my appointment with the Endodontist and went on with life only remembering that weird experience once in a while.

Fast forward to January 2012, I had been practically living at the Dentist and Endodontist since September 2011. I had to have work done on several teeth and since I have complicated teeth with extra and curved roots it made things difficult and even more expensive than normal. In January we started work on the last 2 of 6 teeth hoping that these would give us no complications. To sum this part up, after numerous visits sometimes in the middle of the night and on weekends to the dentist, my Molar on the bottom very back of the right side of my mouth continued to cause me the most excruciating pain I had ever felt, even worse than natural child birth. On March 2nd, against my dentists wishes I insisted that he pull the tooth instead of me going to an Endodontist and having to spend more money on this. I was horrified when the morning after the Extraction I woke up in the same pain I'd been in before the Extraction. Cory insisted that afternoon that we go to the hospital to get tests done thinking that the only cause of the pain could be and infection in my jaw. While I was at the hospital they gave me a miracle drug in my IV that took the pain away. It was glorious! I had taken my share of pain killers throughout this process but nothing compared to the pain relief that I felt at that moment. After a CT scan and some blood work the doctor delivered the news that everything looked fine and there was no infection in my body at all.

After he left the room I cried not knowing what was wrong and feeling terrified that the pain would come back without any help other than to take more drugs that would merely dull it a little. I went home and continued to feel horrible having this severe pain off and on. I followed up with my doctor Tuesday who agreed with the ER doctor that I needed to see a Neurologist. I called and begged for an appointment with one of the 3 Neurologists that my doctor referred me to and managed to get an appointment the next day.

The Neurologist, who could use a lesson or two in bedside manner, mostly went over my medical history and examined me quickly. He then delivered the diagnosis of Trigeminal Neuralgia and sent me home with a medication called Lyrica and told me to follow up with him in 3 weeks. He refused to talk about long term care and didn't really give me any information about this misterious new diagnosis. He did however inform me that we pulled a healthy tooth for no reason.

I wasn't confident that any medicine would take this horrible pain away or that this guy had my diagnosis correct. I was desperate to know if he knew what he was talking about. So Cory found me a Neurosurgeon located down the street who is covered by our insurance that specializes in Trigeminal Neuralgia. His office even had an appointment the next week. Cory went to this appointment with me and we both agree that we are in love with Dr. Weiner. He was helpfull, answered all our questions, and gave us hope. What more could you ask for from your doctor. He confirmed the diagnosis of TN and after hearing about my experience in 2008 felt very confident that the diagnosis was correct. Dr, Weiner suggested staying on the Lyrica until it no longer worked or the side effects were too much to handle. At that point he wants me to go on an anticonvulsant until either of those two things happen again. At that point (within the next year) he will perform a proceedure called MVD which should fix me, maybe not for forever but for a long time.

Trimgeminal Neuralgia for me, simply put- each side of the face has a Trigeminal nerve which branches into 3 sections of nerves that cover that side of the face. The Trigeminal nerve on the right side
of my head is being pressed on by an artery. This causes sharp, electric feeling shooting pains mostly in my lower jaw, a little in my upper jaw and up the side of my face. I've never experienced pain like this in my life! This pain easily beats natural birth and incapacitates me like nothing else.


The weird news-I'm really young for having this. It's
uncommon to be diagnosed with this under the age of 50 and is more often
diagnosed in people in their 70s.

The good news-This is not life threatening!
Also, because I'm so young I will be able to have a procedure called MVD. It is
a semi risky procedure (because of it's proximity to the brain) where they drill
a whole in the skull and separate the artery from the nerve with a little pillow
like thing. They don't attempt this procedure in older people. When done
successfully the pain subsides in most people.

The bad news-This is a progressive disorder which means that
the pain will only get worse and the attacks of pain will happen more frequently
if we don't take care of it. There is also risk of recurrence sometime after
having the MVD procedure done. If that happens and I'm not a candidate for the
MVD again I would likely choose to sever the Trigeminal nerve all together,
causing some paralysis in that part of my face. I know that sounds drastic but even
after this short time that I've experienced the pain I'd be willing to do that
in a heart beat if it were my only option.

http://wwwmayfieldclinic.com/PE-TRIN.htm This is a link that I found very helpful when researching the disorder and the MVD procedure that I will be having.

As of right now I'm feeling alot of different emotions. I'm so thankful that the medication that I'm on is working. The thought of being in that pain again causes me extreme anxiety because it is that bad. Everything comes at a price with medications as I am learning and the side affects are no fun. It's really difficult knowing that I will have the surgery but that I still have to deal with things like exhaustion, weight gain, dizziness, and more due to the medication. Cory and I are at a sooner is better than later point with this surgery. Don't get me wrong, I'm not thrilled with the fact that someone is going to shave part of my hair and drill a hole in my head, let alone all the recovery time, but I know that this is inevitable and that it will mean no more meds so I'm kinda completely on board with doing it ASAP!

I know I'm going through this for a reason and that my Heavenly Father has a plan for me. This is part of my life and I know that I will be a stronger, better person for it. Right now I feel week and at the mercy of everyone but my hope is that one day I will feel strong again.