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The Tina Johnson Story

 

 


 

By Kathleen Sweeney

 

 

 

“If there’s a day that goes by that I haven’t learned something new to better myself, well, that’s a wasted day.” What a terrific attitude! Imagine being able to feel this way even though you live with constant pain. It was to be the first anniversary the day after we spoke. Tina was out with friends for dinner but took the time to tell me her story.  

 

Tina had been suffering with chronic migraines, also on the left side of her brain, but her first “hit” was such a “terrific pain” she knew it was something else. “I couldn’t open my jaw, I couldn’t make my back teeth touch on the left side, my face sort of drooped like Bells Palsy and I had terrible face and ear pain.” She suffered through it for two days and finally at 11:30 pm the second day she went to Urgent Care. Of course they wanted to send her to the hospital, but she had to be at work in the morning and thought it might pass so she went back home, unable to sleep. She “just about” got into work when the pain knocked her to her knees. A coworker took her to the hospital where they kept her for three days and did a CT scan and an MRI. The pain was not controllable and they had her on morphine and other medications and it still didn’t help the pain! She went to a neurologist who had not yet diagnosed her with TN but put her on Dilantin.

 

She eventually went to her primary care doctor. As she described her symptoms he looked it up on a medical website from his phone and asked if she had ever heard of Trigeminal Neuralgia. She hadn’t but didn’t like the sound of it since she had a lot of nerve pain previously in her life. He told her he knows others who have this diagnosis and about how terrible it is, how it can be uncontrollably painful and that, as of now, there is no cure. “I love my primary care doctor and I thank him for sharing this with me this way because it gave me a challenge.”

 

Tina had tried three different medications and was on a pretty high dose of Trileptal because her pain was constant and in all three branches of the nerves at once. However it caused her to have a seizure and yet it wasn’t effective when they backed down on the dosage. She didn’t like the way any of the drugs made her feel. Her mouth and tongue would always be extremely numb for hours after taking the medications and she was also still in constant pain.

 

Tina lives alone and she was “completely fine” as she spoke with her mom on the phone one day. After she hung up the phone she started taking a shower and suddenly felt weird. Before she could finish and get out, she almost fainted. “The whole world was spinning so fast that I couldn’t even see out. The spinning was so extreme I couldn’t even focus on the wall. I got out of the shower and almost fell … I had to get out extremely slowly, holding on to everything and I immediately called my mom back. I sounded so drunk, inaudible as I tried to talk to her. I was like ‘mooomm, something’s wrong …’ she couldn’t even understand my words. It absolutely scared both of us. I remember I couldn’t feel anything, my arms, my hands, my legs … my face was pounding and hurting but yet it was vibrationally numb.” Her mother drove about 25 minutes to pick her up and could barely help her downstairs to drive her to the neurologist. He told her mom to take her to the ER or have her cut down on her meds. Her mother was absolutely mortified. That episode lasted probably five hours. “I just wanted the medication out of my system so I ended up not taking a few doses. I know that’s not what I’m supposed to do but I became scared of the medication.”

 

She ended up going to another neurologist who then sent her to a neurosurgeon who immediately saw the compression on her MRI. “I was at the appointment alone and wasn’t expecting to hear any dramatic news and he basically said ‘Come here, I want to show you what your MRI looks like.’ I could see a compression on there or I may not have taken him so seriously.” He told her that since she had already tried the only three medications that could help and they weren’t working she would have to have brain surgery. She thought she wasn’t hearing him correctly. He told her she needed microvascular decompression and he had an opening in two weeks.

 

“So here I was, freshly diagnosed with Trigeminal Neuralgia, I have no idea what it really is … and he said ‘I’ll have my nurse practitioner come in and talk to you about it and schedule the surgery.’ I’m sitting there just boiling thinking ‘He didn’t just say this did he??’ and ‘How can this be? I try three medications or I have brain surgery? There’s nothing in the middle?’ But I was in so much pain that I just felt like ‘I don’t care. I don’t care. Whatever it takes.’ But it still didn’t really register. I don’t even know what this is but I have to have brain surgery. As he was walking by, and since no one had come in, I stepped out and said to him ‘Can I ask you a question really quick?’ He was like ‘Sure, ok’ but it was like he was blowing me off - like just because he knows what this is I should know all about it too. ‘Did you really say Brain Surgery?? Not where you would have to shave my hair and go into my skull …’ and he said “Oh no. No. Exactly that. We’ll try and shave as little hair as possible, we make a hole in your skull and we go about three inches into your brain. It’s very much brain surgery.’ My jaw was on the ground. I said ‘Well what are the side effects? What’s the risk? Why is this my only option?’ And he said ‘The nurse practitioner can talk to you about that. Give her a call. If you have any questions just contact our medical staff.’ And like that he was gone. Once the shock wore down a little that night I began researching the surgery and recovery and all I was about to go through.  All in the name of pain relief and quality of life.

 

“My father had lung cancer. We almost lost him a few times. He’s been cancer free for three years or so now. So I sat there and I thought about all of the strength and the determination to not give up and the will of my father making sure that he was going to fight and beat the cancer … I call my dad Superman. I’d go to the hospital every day and stay with him there every night that I could and I’d say ‘You know daddy, you got this! Superman, I’m not letting you give up.’ To this day everyone I know doesn’t call him by his name. They call him Superman.

 

“I made the decision right then that I was getting through this. This wasn’t going to stop me. I told my parents about the surgery and you could kind of see the jolt in my father and he said ‘You know, you didn’t give up on me, I’m not giving up on you. You were there to cheer me on the whole time. I’m sure gonna’ be your cheerleader! God and I are going to have many, many talks. You’re going to be absolutely fine.’ I already knew it but with those words, my strength was there. I knew that this wasn’t going to get me.”

 

Tina had two weeks to either worry and freak out about it or face it and be confident about it. She also knew that this was something that had to be done; she was in so much pain and this was not how she was going to live her life. She met up with a number of friends and made sure that she had left nothing undone, that there was no one with any unresolved issue or anyone upset with her about anything. It wasn’t that she had any bad relationships really … if you met her you would understand why. She just wanted to be sure there were no negative vibrations in her thoughts or energy field. She says “I won’t say I wasn’t ever a little scared but I knew that there was a reason that I got this.

 

“It was awful. I won’t lie about that. I don’t remember a lot, a LOT of things. But my mom ended up having to come over and stay with me for a month and a half maybe. I would just cry all the time. ‘It’s not getting any better. It hurts so badly. When is it going to stop? When is it going to end?’ I would have bowl-filling nosebleeds that would come from nowhere and would just pour (out). I would throw up a lot. I would go days without a sip of anything staying down. When my mom would call the doctor on my behalf it was always ‘Take her to the ER.’ It was an extremely frustrating time. …I do remember thinking ‘Am I ever going to be able to live again? I can’t do this. I can’t do this mom!’ She would tell I would say these things in exhaustion and desperation. I don’t try to remember a lot of it.

 

“Recovery was hard on more levels than just the pain… my boyfriend at the time left me when I was still in the ICU. Then I got let go from my job … I lost the job that I had been at for five years even though I was out on FMLA leave because I couldn’t return back at the end of my 90 days. Trying to give myself strength and keep my head above water by holding on the hope this will all end soon and I will live a fun, positive, abundant, and pain-free life was so taxing. It was a complete compilation of emotional and physical trauma … then one day I said to myself ‘You know what, Tina? Enough of this, get up! We’re gonna get better and we’re gonna do it right now!’ So I got up, got dressed and finally went back to the gym and (I continued to go) to the gym twice a day for 30 days straight. I missed being active, cycling and working out, that one way or another “I was gonna get my energy back and really work on my brain and my attitude. I’m gonna make it!’”

 

Tina thought after the surgery she would be off the meds. After all, she thought that was the whole point!  When she had her post surgical follow up with the neurosurgeon she asked, “So now can we start weaning me off the meds?” The reply was shocking. “No. You’ll probably be on this medication the rest of your life.” “What?? I had brain surgery so I would be pain free and not have to be on the medication. I have the brain surgery and I still have to be on the meds??? So now, that is my goal. I have gone down a lot on the Trileptal. I found that when I cut down on the medication the pain is stronger. But after working with myself and thinking a different way I have been able to lower the dose a little. So that is my goal. I am not going to give a time frame on it, but that is my goal. To eventually be off any medications for this. I am optimistic. It doesn’t mean that it isn’t a process. As long as you are determined and focused on a goal you have something to reach, something to meet.

 

“So in reality, sure, I hurt. But when I do I don’t focus on that … you would be amazed how many days I am hurting but I have a different attitude about it and in no way does it last as long as it used to. Because I always know if I get frustrated or I get mad or I get excited in a negative way, that, in my brain and in my ear it will just feel like someone is hammering a frozen pitchfork way deep into my ear, chiseling at my brain and my face will explode into extreme pain. And once the pain starts, nothing makes it better. No pain pills … nothing! So the only thing that typically will make it better is what I do have control over - calming down and focusing on the relief and eventually that pressure in my head subsides and it gets better. I also started meditating. I never realized the power of quieting your mind before. Sometimes that’s all my brain wants anyways. And it’s amazing. And yoga? It’s wonderful. (My dad used to call it yogurt.) I just started doing more and new things that would make my body and my mind healthier. I began researching and reading a lot and watching YouTube videos on topics like brain health, cutting out processed foods, belief systems ... anything that fed my mind.

 

“I watched the The Secret and started listening to The Law of Attraction type things on a daily basis. At night I would put earphones in and listen to binaural beats that would help with things like memory, nerve regeneration, and strengthening your brain. I wake up in the morning and some times I will pull up the picture of the scar from my surgery and say to myself ‘You know what Tina? Get out there. What could you possibly be afraid of today? You’re a warrior.’ I wake up with the attitude that today is going to be the best day ever and I really don’t let things affect me the way that they used to. I don’t hold grudges and I try not to ever really get mad. I have learned to laugh things off (figuratively speaking)… I just kind of chuckle if I’m starting to have a bad day because I feel like if you play into having a bad day you’re more likely to continue having one.                                                                                                

 

 “I believe our thoughts are powerful. While I am hoping and waiting for a cure, I am doing for myself what I can personally do. What I want people to know is, while your brain hurts you can still use it. BELIEVE in yourself and the power we all have. I refuse to sit back and not try to remind other warriors, everyone, that we are powerful beings. None of us are doomed. I just don't want the underlying thought to be ... well, there's a cure coming hopefully, so just give money, stay miserable, and hold on to the misery. No. You absolutely CAN make your life what you want it to be. That’s my process. That’s my journey. I’m still on it. As long as I am here on this earth I will always be on it.  

 

“I tried for a long time to find someone who even knew of someone else who had TN. Then one night two or three months after my surgery I stopped into an establishment to see my nephew and a friend of mine was there who was with Sanford’s mayor, Jeff Triplett. My friend hadn’t seen me in a while so he asked to see my scar and I said you can’t see it much any more because my hair is growing back. So I pulled my hair to the side and Jeff said ‘What did you do?’ I said I had a surgery. I don’t try to upsell it or even say what it is when people ask me because they usually have no clue what I’m saying. He said ‘well what for?’ and I said I have a rare brain condition not a lot of people have heard of it … Trigeminal ... And he said ‘Neuralgia?’ I was shocked and said ‘you’ve heard of it?!’ He turned his head and I saw his scar and he said ‘I’ve had MVD twice’. I said ‘Oh my God!’ So we just sat and talked about our experiences - excited to finally be able to talk to another person who ‘gets it’.”  

 

Tina and Jeff discovered they had the same brain surgeon and Jeff had been told exactly what Tina had been told; that he had a vein wrapped around a blood vessel and the nerve and it had to be cauterized and rerouted. Tina had been told she could have had an aneurism and died, also. And that her nerve was compressed in not just one place but three! That is probably why her scar is so large (She says it is the biggest one she has seen!) “And they make it sound like a quick, painless, standard surgery.”

 

Jeff shared with her that not many people even know that he has this type of pain. He’s been the mayor for seven or eight years now and he has tried to keep it out of public knowledge for a very long time. He didn’t think it was anything that was significant. Then when Tina decided to host the first fundraiser for the Facial Pain Research Foundation she told him that she was going to have it at the Sanford Memorial stadium, where he is very involved due to his children playing baseball. So she asked him “Would you mind helping? Would you like to be a part of it?” He replied back “Yes. Of course!” So he became involved with the Foundation and the fundraisers with her and helped to make them a success.

 

So now months later, “I just knew that once I got through this and I was able that I wanted to start a support group in my area. I knew how desperately I wanted answers and wanted to talk to others in my area without a blank stare of confusion when I would try to explain TN. I now know the need for a group like this. I’ve had some people reach out to me through Facebook and the FPRF who said ‘I have this and I don’t have any doctors and I am in so much pain I just want to die. I just want to give up’ and I reply back and my very first words are ‘Nope. Not on my watch. What is it you need? If you need me to research doctors in your area I will.  Here is how you can also contact the Facial Pain Research Foundation and the Facial Pain Association. One way or another I’m sure someone can help you.’ Because when you’re in that (much) pain you shut down. Your brain doesn’t want to turn. You don’t have motivation to do anything about it. All you know is that you hurt so bad you can’t think. You’re so hungry but the pain is so strong that you don’t want to eat or you can’t keep it down. And you just end up losing every aspect of strength. You lose it all. That is why I decided that day that I wasn’t ever going to be weak again. So I just want wouldn’t have a to be able to help others. TN isn’t easy to face, especially not alone.”

 

Recently, Tina feels she was hugely blessed by the Orlando Regional Medical Center who has agreed to host her Central Florida area Trigeminal Neuralgia Support Group at one of their locations. The first meeting will be held on January 25, 2017 at ORMC in Orlando, Florida. (You can contact Tina by email This email address is being protected from spambots. You need JavaScript enabled to view it..) The purpose is for others to not feel alone in their struggle and to help them to know where or how to find support, resources and doctors in her area. “We (TN patients) are so small in number but so large in obstacles. We are a family of people that do not even know of each other yet, but know exactly what we all live with. We need a platform to be able to help each other and help ourselves and to show the world that we are warriors.” And Tina is an amazing example; showing them how to change their way of looking at their life and dealing with the horrific challenge they live with. 

 

 

   
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