- Posted September 8, 2013 by
This iReport is part of an assignment:
First Person: Your essays
My Trigeminal Neuralgia Story
She started having symptoms in 1998, but it was five years of struggle before she was diagnosed with Trigeminal Neuralgia in 2003. SanFilippo has undergone multiple procedures and surgeries to treat the disorder, like Gamma Knife Radiosurgery in 2008 and Balloon Needle Rhizotomy in 2010, but none have helped ease her facial pain. Read more about those procedures on the Mayo Clinic’s Trigeminal Neuralgia page.
“A typical day in my life knows no real time and follows no structure. Pain wins over all else and many days are spent in bed. Rainy days, windy days, cold days are usually the worst times but there have been many beautiful and sunny days that I have missed completely, too. … I have missed many family functions, important birthdays and reunions with friends because the pain won on those days,” she said.
- zdan, CNN iReport producer
I am a Trigeminal Neuralgia Warrior, I call myself a warrior because surviving this horrendous pain, the harsh medications and lack of awareness in the medical community has truly made me fight for help and understanding as I continue my search for pain relief.
My journey began in 1998 when a sudden, stabbing, horrific pain shot across my face from just below my eye down to my jaw. As I made my way to the closest mirror, I was afraid of what I was going to see since surely something that painful must have left a mark. There was no mark, no evidence at all to show what I had felt and would feel to this day. I have suffered from chronic migraines for many, many years but had never had a pain in my face before. I saw my family doctor and tried to explain what was happening but I know that I sounded like a lunatic.
It wasn’t until one day when I was having a very strong episode and I called for an emergency appointment that by a fluke, I was seen by another physician in the practice. Within moments, he told me he had a very good idea of what was going on...Trigeminal Neuralgia. It was now 2003, it had taken five years to get diagnosed appropriately.
I was sent to a Neurologist and a Neurosurgeon and first was treated with numerous harsh anti-seizure and narcotic medications, none of which worked completely and I was told none probably ever would. There is no specific medication for TN so it is a “hit and miss” cocktail of medications to try and survive it all while dealing with their very harsh side effects.
In 2006, I was pulling my car out the driveway and when I turned my head to look behind me, the world just went away. I crawled out of the car and held on to the walls of the house to get back in. It took what seemed like a lifetime to get the door open. I was brought to the ER and then transferred to another hospital by ambulance. I was admitted for a TIA – Transient Ischemic Attack (mini-stroke). I believe whole heartedly that my medications were so powerful that my body just couldn’t take it. I was found to have hypothyroidism (underactive thyroid) and take daily medications ever since.
When I was seen by the Neurosurgeon, I was told that since I was only in my 30’s, I should try to cope with the meds since the complications of Micro Vascular Decompression (MVD) brain surgery can be very risky. In 2008, I opted to travel a few hours away and have a Gamma Knife Radiosurgery non-invasive procedure. This failed to relieve the pain and made my situation just seem that more dire and depressing.
In 2010, I travelled a few hours from home to have a Balloon Rhizotomy performed in hopes of damaging the nerve to ease the pain. This failed to work as well. I continue to have unbearable pain on a daily basis. Therefore, I decided that the pros outweighed the cons for brain surgery, I saw that first Neurosurgeon again. This time, he told me that since I have had the two previous procedures done, (even though non-invasive)I have scar tissue and such that would make it much more difficult to reach success with the MVD now. I think this may have been the straw that broke the camel’s back, so to speak, but I don’t know how I was able to leave the office without completely falling apart. There have been many moments since this all began that I do indeed believe that I’ve reached a very scary place, a very desperate for relief and sad place.
While all of this was going on, I must mention that although the physical aspects of Trigeminal Neuralgia are truly harsh, the emotional rollercoaster is extremely daunting. I tried covering my time off of work with Family Medical Leave but even ended up depleting that. I was told, over the phone, not to return to work. I had no job; no benefits, no money coming in and I truly realized just how easy people end up homeless. When I applied for disability, I was rejected immediately. Upon appeal, having done my homework, I was awarded my Social Security. I brought handouts explaining Trigeminal Neuralgia, pain logs and also my own words which in turn convinced the appeal board and judge that I could not work due to my medical nightmare.
All aspects of my life and those within it, have changed forever since that first painful morning.
Physically, emotionally and mentally it has been and still is a very long and hard road. To be in my 30’s and become physically disabled with a condition no one can see or feel except me and lose my livelihood, my home and ability to function as I once did has all been an incredibly painful and life changing process.
My saving grace in all of this has been the understanding and love I have received (and given) in the Trigeminal Neuralgia Support groups. When I found people who really knew what I was going through, it made my situation less bleak and in doing so, made me feel less alone and desperate. There is power in numbers, they say, so I am proud to be a part of any group that works for awareness so further research can be done so that a cure can be found.
I am also extremely fortunate to a very understanding and supportive partner who has literally watched me suffer with this condition known as the “Suicide Disease”. She has been there from the start and I honestly don’t know how I would survive without her.
Just as I could not see any evidence of why I was feeling such horrific pain that first day when I looked in the mirror, this condition is “out of sight” and therefore remains “out of mind”. Hopefully, your coverage will help to raise awareness to assist us all who remain fighting in pain to survive waiting for a cure. Thank you CNN.
A special thank you goes out to Nikki Samuel, a fellow Warrior, who has been tirelessly working for TN awareness. Please join us on October 7, 2013 as we ring in the very first International Trigeminal Neuralgia Awareness Day. Please help support the Research Foundation and learn more by visiting: www.facingfacialpain.org.