This is my story about living with TN, choosing to get microvascular decompression and my surgery experiences. I could write a book on the experience but this is a shortened version. I’ve started with the most important things I’ve learned from my experience to help others learn from what I’ve gone through. If you have specific questions regarding my experiences, please contact me and I’m happy to discuss them further with you.
The most important things I have learned from my experiences:
- Everyone is different and responds to medications, treatments, etc. differently. While it is always nice to talk to others about their experiences, LISTEN TO YOUR BODY and you will find answers.
- Doctors are medical experts however, each case of TN is extremely different and TN is a very difficult disorder to diagnose and treat. Doctors don’t always have the right answer or recommendation. Do your own research. Educate yourself, your family and your friends. Don’t be afraid to ask questions or stand up to them. You know what you are feeling and experiencing each day - they don’t.
- Research. Research. Research. And realize again, nothing is the end all be all. Everyone and everything is different. Knowledge is power. Being educated is the best tool you can have in fighting this battle - while sometimes your finding will be discouraging and depressing keep researching and keep looking, it will bring confidence and reassurance in the end.
- Surround yourself with supportive family and friends. Speak up. Talk about your experiences. It’s no fun being Debbie Downer but it is important for people to realize the seriousness of TN. It is an invisible disability and nobody is going to know you are suffering unless you tell them.
- Never never never give up. Never never never lose hope. Attitude is everything. Yes, you may have the most painful disorder in the world - but it could always be worse. The glass is half full my friend. There IS light at the end of the tunnel. You just have to look for it. You have to be ready for it.
- Trust your gut and make choices with confidence. Who cares if some people wait 10 years for treatment and others only wait 10 months. Who cares if people think you are a little bit crazy. Always trust your gut because you know what you feel and what is right. Have no regrets.
- Be thankful for every pain free moment you get. Be thankful for any kind of relief you receive. Whether it’s medication, natural treatments, surgery, any way you can get it. Be thankful.
- The world doesn’t stop turning just because you are in pain. You can either sit on the sidelines and watch is pass by or you can do something about it.
- Chronic pain can change people. It can make people very ugly, grumpy, short circuited, depressed, no fun to be around, and a lot of other unappealing things. The medications don’t help. Try your hardest not to let this happen. You want people to be around you during this battle - not to chase them away.
- Life is too short to merely get by - if you are simply “surviving” rather than living life to the fullest, it’s time to make a change. Seize the day because nothing in tomorrow is promised.
I was diagnosed with Trigeminal Neuralgia in December 2009 - I suffered with TN for 9 months before getting MVD. Thankfully I was diagnosed with TN very quickly unlike some others who suffer for years and go through tons of dental work. One day I was fine and the next day I woke up to the feeling like I had been punched in the face, it escalated to a “beating in the face” with a baseball bat. Then the tingly sensations came and the wind was excruciating - I couldn’t even walk my dog. It hurt to eat, smile, laugh. It was easiest for me to get in with my family doctor instead of my dentist so I scheduled an appointment ASAP, she immediately mentioned the words Trigeminal Neuralgia and sent me to get an MRI and see a neurologist the next day.
My MRI indicated a compression - my neurologist even pointed it out to my husband and I. He referred us to a neurosurgeon for a consultation. It was a lot to swallow, one day I was a healthy 26 year old with the world at my finger tips and the next I was so crippled by pain I could barely get out of bed and I had to talk to a brain surgeon. This wasn’t exactly in my “life plan” per say but you carry on, I had to. The world wasn’t going to stop turning just because I was diagnosed with some rare pain disorder. I kept pushing forward. My neurosurgeon discussed all of the treatment options but given the risks and my age - recommended either MVD or Gamma knife. He gave us information packets, asked me to try different medications for at least 6 months and give him a call if that didn’t work.
For the next 8 months, I tried Gabapentin, Trileptol, Topamax and a combination. At one point I tried the maximum dose of gabantin, when that didn’t work I tried the maximum dose of trileptol and threw in 100mg twice a day of topamax. The medications simply helped me “survive” - I wasn’t living life anymore, I was struggling to make it through the pain each and every day. Each day it was a battle to get out of bed, to go to work, to socially interact, to eat, to do chores around the house and so on. The medications helped make the pain a bit more bearable so I was able to do these things but then I started to experience the side effects of the prescriptions. I was tired all the time, I was always sick from them, I had terrible mood swings, I lost 20 pounds that I didn‘t have to lose, I was in a fog and couldn’t think clearly.
This was no way to live. I didn’t want to simply “get by” anymore. My pain was so bad I couldn’t do the things I wanted to do anymore, then throw the medications in on top of it - it was a living hell. I was ready for a change but was encouraged to wait - maybe spring and summer time will bring relief (winter in Colorado with temperature swings, blustery winds and lots of snow made it hard on me!) They were right - warmer weather did bring some relief, but the wind still triggered the worst kind of pain. And then with warm weather I wanted to get outside and be active but anything that got my blood pumping triggered more pain as well. At this point, I refused to sit inside and waste away all summer so I maxed out my medications (with permission from my doctor) and I tried to grin and bear the pain and live.
That was great until I started getting double vision. I started blacking out. I was literally unable to function for an hour or two after I took my medication each morning. It would hit me like a brick wall. I tried taking my medication with food, I tried to make sure I took it exactly 12 hours apart from the previous dosage. It was hit or miss. Sometimes it would hit me like a brick wall , other times I was fine. It was clearly too much for my body to handle. If it hit me at home, I was fine. If it hit me at work, I would try to find work to do while completely zonked out on my meds or I would sit and stare in a daze at my computer screen hoping it would pass quickly and praying I wouldn’t have to leave my desk because I couldn’t walk a straight line to save my life - it was like I was blackout drunk. Not fun. But the worst feeling was when it hit me while driving. I was on my way to work one morning cruising down the interstate at 70mph in the left lane when it hit me and I couldn’t pull onto the left shoulder because my depth perception wasn’t good enough to safely pull over without crashing into the barrier. I don’t know how I safely managed to cross 4 lanes of buzzing traffic and pull off the next exit but I did and I knew in that moment that I could no longer but a band-aid on my pain and problems but I HAD to do something about it. I was now putting other lives at risk.
I did two things that day. I lowered my dosage of medication and I called my neurosurgeon to schedule an appointment. My family, friends and even my neurologist still weren’t completely sold on me getting MVD at this point.
Over the previous few months my neurologist was a bit flaky on whether or not he actually saw a compression, what was actually causing my neuralgia and if MVD could help me. Ironically, from the time I had been diagnosed with TN - I had also been diagnosed with shingles/herpes zoster in my left eye - the same side of the face I had facial pain on. He went back and forth on whether I had post herpetic neuralgia or trigeminal neuralgia. At this point - I told him I knew my body and I knew what I felt. Every time my heart beat harder, I felt more pain. That to me indicated that I had a compression and MVD could in fact help. He gave me his good graces and sent me on my way.
My neurosurgeon was mortified when I told him my story about driving. My appointment was on a Thursday and he asked if I wanted to come back the next week to get fixed. Unlike my neurologist, my neurosurgeon was confident in his ability to fix me. We discussed gamma knife briefly but I had done my research and knew I wanted MVD. Go big or go home, plus I wanted IMMEDIATE relief. I needed time to talk to family and work but knew I was scheduling MVD soon. The next week - I set my appointment. I kept joking “I never knew it was so easy to sign yourself up to get brain surgery.” I mean - it was easier than adopting a dog from a shelter or buying a car. This however, reassured me that I truly needed it. I had one of the best neurosurgeons in my region.
My family and friends warmed up to the idea as they learned how informed I was. I had been living with this pain for 8 months and every spare second of my time I was on the computer researching TN, the causes, the cures, MVD, doctors, anything and everything. If they had a question - I had an answer for them. I wasn’t taking this lightly and I wanted them to be as informed as possible as well. I was confident in my choice. My family and friends would cry and get scared when I told them - that effected me emotionally. It upset me too and initially made me have second guesses. On my good pain days I thought - do I really need this surgery, can I just keep living with the pain, what if something goes terribly wrong. I even created a bucket list. But as the time passed, I started a countdown until my surgery. I saw hope - light at the end of the tunnel. I focused on all the positive and possibilities that I could wake up to a pain free life. I tried all the medications with no relief, I needed to try a new option and I could hardly remember what life without pain and meds was like. My family and friends began focusing on the positive too. Everyone became very excited for me and the possibilities as the time passed and my surgery got closer.
I had a pre-op appointment to ensure I was healthy enough to go through with the surgery. Fine time to check things out - a week before my scheduled MVD when I already had family flying 2000 miles to come take care of me. Luckily everything checked out just fine and I was ready to go.
The day of the surgery I checked into the hospital at 9:30 for an 11:30 surgery. My parents, husband and good friend all came along with me. They immediately took me back, got me into a gown and the pre-op nurses got to work. Once they had me all set up on my IV and monitors, my support crew was allowed back until surgery time. I think I was the calmest person in the room. I was mentally prepared - it was all in at this point. No second thoughts, no regrets. I was ready to take my life back, I was ready to be pain free. I almost wondered if something was wrong with me - not having an ounce of fear. I was more scared to get my knee surgery the year before. I’m more scared to walk my dog alone at night. Nonetheless - it was go time. The surgeon and anesthesiologist all came in and talked with us. Asked health questions, explained the procedure and the risks. Soon enough 11:30 arrived and it was surgery time. I thought it was a little odd though that they started wheeling me back to the operating room without giving me anything though. When I had knee surgery, they gave me some sort of “happy juice” before they even started wheeling me on back.
My anesthesiologist met me in the hallway right before the OR with my “happy juice” - I remember the OR but it didn’t take long for me to pass out. Next thing I know, I awake to a massive migraine, beeping, nurses and lots of movement around me. It was over. That was the quickest 4 hours of my life.
The surgery took every bit of 4 hours - 4 torturous hours for my family and friends all waiting on pins and needles. Every time some sort of alarm or alert went off in the hospital - my mom had a bit of a panic attack. Nonetheless, the surgery was a success and my neurosurgeon found more than what my MRI even showed!
My nerve was compressed on both sides - one side with a vein and the other with my artery in a way that every time my heart beat the two pressed together into the nerve. The nerve had nowhere to go.
As soon as I woke up in recovery, they asked me what my pain level was - at that point all I could feel was the migraine. The lights and noises were making me so nauseous. They immediately gave me morphine and anti-nausea medicine. I was also so very thirsty and they gave me ice chips as well. They wheeled me on over to ICU and my family came in to visit. Apparently I kept telling them “I told you so - I told you I wasn’t crazy, I told you there was something really wrong with me” in reference to what the surgeon had found. I knew what I was feeling prior to my surgery, I knew to trust my gut and I knew my surgeon would find something.
I actually felt great - great because my facial pain was gone. I would take this surgery pain any day over the TN pain. I did have headaches, nausea from an anesthesia and my neck was terribly stiff from the incision and how they had it twisted for surgery but who cared - my face felt better! I stayed in ICU overnight and the nurses gave me morphine and anti-nausea medication as frequently as possible to keep me comfortable - I told them they could wake me up as many times as they wanted as long as they kept my pain away. At this point I kept rating my pain between a 4-6. Much better than my TN pain I rated at 100. I didn’t sleep well because of the frequent check ups, terrible hospital bed and my neck pain.
I had assigned my friend to be my PIO - public information officer. She was in charge of contacting my friends and work to let them know my status. She also updated my social network sites for me. My parents made sure the whole family knew I was OK. This kept my phone from ringing off the hook.
The next morning in ICU the nurses encouraged me to order some breakfast. Following their orders I picked up the phone to my left ear but no dial tone - complete silence. I hit the clicker a few times. Right as I was about to buzz the nurse about my broken phone I put it on my right ear and it worked fine. I switched it over to my left again, silence. I was hearing out of my left ear the night before - muffled but I could hear. And now it was completely gone. Dead. Silent. Well - ok fine. I could live with that as long as my pain stayed away. I was sure to tell my doc though and he scheduled an MRI to check things out.
Before I left ICU that morning the nurses took my catheter out which I was extremely thankful for. Talk about uncomfortable. I got up out of bed for the first time and washed my face, brushed my teeth, etc. I looked in the mirror for the first time - I had a turbine on my head, all wrapped up but you could still see part of my incision. I was glad to see all of my teeth too - my anesthesiologist warned me of a small risk of chipped or broken teeth from the breathing tube - luckily, I had neither.
Day two in the hospital was in a regular room. I started to get my appetite back. I still had headaches though. I was encouraged to get up and out of bed, sit in my chair, move around etc. I was weak and my hearing loss really threw my balance off. At first I didn’t want to move around but I realized sitting up really made me feel better.
Day three I had my MRI in the morning. Results showed nothing that would cause permanent hearing loss and the doctor concluded it was mostly fluid and impaction from the surgery and thought it would come back with time. It was still completely gone though. They took my turbine off and I saw my incision for the first time, it was about 4 inches long - from my behind my ear to about two inches below it - down my neck a little. It was puffy and swollen, but it looked pretty good. I also had a scab right in the middle of the top of my forehead from the halo. I probably looked like hell but I felt like a rockstar. I took a shower and I was released that afternoon and sent home.
I was thankful to have family and friends around the first few days to help refill my drinks, bring me food and help me out. The first few days at home I was still really weak and lacked energy. It was also helpful to have someone help keep track of when you can take your medications. The first few days, I relied heavily on the pain killers for my headaches, neck and incision pain. This got better over time. The first few days I was still really out of balance as well. I was pushed myself to go on short walks to the park and such though.
Five days out of surgery I was left on my own. My family flew home and my husband went back to work. I was able to make it just fine getting things around the house.
A week out of surgery I stopped taking the pain pills. My headaches went away and my neck started to loosen up. I could feel tightness on the incision though when I turned my head too much or something. The incision started to get itchy - it was all I could do to leave it alone. I also had two other sore spots on my head with small scabs from the halo they put on my head during surgery. My hearing also slowly started to come back. Not all the way - but muffled. Like waterlogged. A good sign nonetheless.
Two weeks out from surgery and I’m still feeling great. I’m getting more and more energy back each day. I try to push myself - go on long walks and do lots around the house but my body tells me when I need rest. I get fatigued easily and sometimes still need naps. I feel incision pain sometimes but don’t take pain meds.
My hearing still isn’t back completely but it’s getting there. My doc was right - it must of just been fluid from him being so close in there. It was a price I was 100% willing to pay to feel the way I feel today. I still have a tiny bit of a deep ache underneath my cheek bone - it reminds me of the initial feeling I had when this all started. It hurts more when I yawn, sometimes chew or press on it and I get a bit of a pinching feeling under my eye. Maybe it’s healing, maybe it’s a little bit of pain left over but if you ask me - my MVD was very successful. This is a million gazillion times better than what I felt two weeks ago and I have no regrets whatsoever. I am not over drugged on a million medications, I can think clearly, I am refreshed to wake up and not have to face the intense pain I was in for 9 long months, I actually want to get out of bed in the morning, I can walk outside and face the wind without wincing in pain, I can sit in my house with the ceiling fan on, I have a renewed energy to live life - I actually can now and I will. I have been given a second chance, a second lease on life - and in the end, that’s all I truly wanted. I’ll take what I can get.
I hope that you or your loved one too has or will someday find relief from their pain.