Send  your Name and Email Address and receive more info on Foundation and Research info@facingfacialpain.org
   
   


The Tracy Magann Story

 

 

 

 

By Kathleen Sweeney


 

“I’ll never forget Father’s Day, June 19, 2011.” She was holding their three-year old son and trying to get her then-husband to calm down after he found out that she was ending their marriage. She had already left him two other times but he charmingly won his way back into her life by telling her he was going to change. She was still paralyzed in fear from the abuse. He had told her “I will kill you if you leave this marriage.” And she was sure he meant it. She had already set up housing for her and their two children in a townhouse. But this final day ended much differently. He suddenly slammed her into their glass front door and twisted her neck and face doing it, pushing the left side of her face against the glass. It was the last time he ever hit her but it was the most violent. It seemed to go on for so long as her five-year old daughter and the son she was holding tightly were both screaming. She also tried to scream but because of the way he had her head held she could not scream loudly. Their neighbor was outside, she saw him out of the corner of her eye through the glass but she couldn’t get his attention. It was about 9:30 in the morning. 

 

She thought to try to open the door hoping to get attention of the neighbors. She did manage to and as she did so her daughter ran out and across the street. This made him even angrier as he slammed it shut, letting go of Tracy momentarily at the same time; so she ran away from him … but not quickly enough. He kicked her on the back of the knee, that place that takes a person right down, and then he got right on top of her with their son beneath her. He then began pushing again on the right side of her head and face. The pain was really bad and she recalls feeling a loud pop in her left ear before she passed out.  

 

The next thing Tracy remembers is standing outside watching him being cuffed and arrested by the police. She thinks they said she had a concussion.  She knows they issued him a restraining order. She has no recollection of how she got outside. Her neighbor eventually came over and got her and her son from the patio.   

 

That night she and the children stayed at their new place for a quiet evening. She was still in shock and in pain. But she felt numb. When she awoke the next morning she felt like she had just gone to the dentist. Her lip felt like it had been shot with Novocain and she kept wondering about it, as “that was so strange”. But she was still really didn’t feel anything. She couldn’t go to work that day because her day was filled with going to court, getting the restraining order to take to the school on behalf of the children and seeing a lawyer.  

 

“Every time I touched my face I felt a small shock … any time something breezy went across my face I would feel a shock. I thought ‘What the hell is this going on??’ I thought it was just me. Am I tense from what happened the night before? This was all new to me. I went to the doctor the next night and she looked me over and said there were a couple of bruises on my face but they were mild and a lot of bruises to my back side from the impact of the door. There were also a lot of bruises on my hands and wrists from where he had held me in his firm grasp.   

 

“(My doctor) recommended a CAT scan because my jaw was potentially broken. That came back negative. I kept saying ‘something is wrong’ because my face and my jaw felt excruciating pain and as the days went by it got worse and worse and worse. I kept trying to deal with it. Then on Thursday I was walking through Target with the kids, pushing the shopping cart when all of the sudden I had this lightening bolt electrocution that came across my face and I yelled ‘OOOH HOLY SHIT – MOTHER F***ER!!!’ because I didn’t expect it! It caught me completely off guard. I didn’t know what the hell it was (and hey, I’ve given birth twice!) Everybody looked at me … it was completely absurd. And it was on just one side of the face. It was the side of the face that took the compression to the door and then again to the floor.”  

 

She called her primary care doctor who said the results from the CAT scan were negative. She was told to come back into the office so she could look her over again. This time she said, “I want to give you a steroid and a mild pain killer.” She thought it should help but it didn’t. Then she said “let’s send you to an oral surgeon who specializes in the jaw to make sure we aren’t missing anything in the jaw bone. And then let’s get you booked for a neurologist. You seem to have something called Trigeminal Neuralgia. It’s something of a neurological origin in the face and is basically what you seem to be describing. You do not have any breaks in your bones on the CAT scan and you’re not responding to the medication. We’re only going to know when we get you to the neurologist and an oral surgeon.”   

 

The oral surgeon said “No, this girl is fine. It’s either that she is a teeth grinder or it is neurological. I would guess that it is probably neurological.” She couldn’t get in to see the neurologist until September. That was the first available appointment for a new patient at this recommended neurologist.   

 

She waited out the entire summer. “I remember crying in excruciating pain any time I would eat something that required any type of chewing. I would just cry. I had to switch my entire diet. I had to eat mashed potatoes, ice cream and lots of soup. I was losing weight. I dropped 12 pounds in one month due to the way I was eating. I basically couldn’t eat. I was in excruciating pain whenever my gums were ‘hit’. I was getting electrocuted all the time.” When she finally saw the neurologist he said “It sounds to me like you have post traumatic neuropathic facial pain.” He wanted her to have an MRI because it is more detailed than a CAT scan. But first he put her on Effexor. It doesn’t have a lot of side effects. He told her it‘s probably not going to give her a lot of pain relief but it will give her some relief. “You may be able to resume some quality of life.”  

 

So she started out on the lowest dose and finally by 150 mg she got some relief. She said “Oh, okay … I could chew somewhat again but I still couldn’t experience the things that I like. Pizza or sandwiches, steak … anything that would require chewing, I was like ‘nope – get me away from that food!’ Apples, carrots … foods I used to love. Things that made me feel like everybody else in the world, suddenly I was looking at and saying ‘I can’t eat that because it will set my mouth, my face off.’ It made me feel like a freak because I couldn’t explain that to anybody. I didn’t know anyone else with the condition. In addition to struggling to eat, brushing my teeth was pure agony; I could no longer tell bedtime stories to my children without the nightly set off in my mouth. I hated the sight of gum and make up which seemed too difficult to apply consistent and evenly." This was 2011 and although she looked it up on the Internet, she found no support out there. She says maybe she was looking with the wrong key words but it took two more years before she found “her people”.  

 

Although the Effexor helped, it wasn’t enough. She was still in a lot of pain. She wasn’t able to sleep. Being a single mom going through a divorce at this time was ugly and she was miserable in pain from trying to adapt to the shocks. Every time she went to the neurologist she told him her jaw was in so much pain it’s cracking. “I go outside and it’s windy and I feel like my face is getting struck by lightning bolts. I’m getting what feels like a serrated butter knife attacking the inside of my ear. What am I going to do about this?” He finally agreed to put her on Tegretol in Feb 2012. “That made such a difference for my pain levels. It really made a big, big difference.” She’s at 600 mg right now and sometimes 800 mg. She can actually have pizza again but the drug has really strong side effects.  

 

Tracy had started working again as a CPA for the same company that she had worked for before the incident, in the audit department. But they were not tolerant of the fact that she had now apparently lost her brain! “They were looking at me like ‘What happened to this girl who used to be this great auditor? What happened to her?’ I used to be on the partner track. They used to tell me to do something that would take people 30 minutes and I’d get it done in 20. And now it would take me an hour! They were looking at me like ‘What’s the problem?’ and I’m feeling ‘Do you know how hard it is?’  It was the medication. I was tired, I couldn’t stay focused, I’d have a pain attack at work and also I was in denial! I didn’t understand what the illness was doing to me and I couldn’t grasp that this was not a place for me to be.” Instead of going to HR the company put her on a performance review plan and said she needed to improve and get better … they put her in a corner. She tried but soon started looking for another job because she was bored sitting in a corner. That was their way of dealing with her. Then she did find a different job, closer to home and thought she was doing the right thing. She was totally in denial.   

 

This time when the same thing happened again they were not lenient at all. She was there for three months and they started to write her up. They said she kept asking the same questions over and over. “I said ‘This is my disability. You don’t know how tough this is for me to be sick.’ I was going back and forth to the bathroom, throwing up from the nausea from the medication. And then I was being called names like ‘retard’ because of all my questions. The Director of Human Resources was cruel when I attempted to request accommodations to stay in the workforce. Together with my doctors, I was denied 6 of the 8 I had requested. I was also told I had to limit my ice pack breaks (to my face) to 2 per day. It is so hard because you can’t see that something is wrong with us!  That’s where I say ‘How much longer does this have to go on for us?’ People don’t understand our pain.” So eventually she went on leave because her therapist said “I’m taking you out. You are not going to be called a retard at work. This is bull.”  

 

After 5 weeks, she returned to work and was determined to prove she could keep her career going. This time, the people she worked with were just as aggressive in the name calling. She was assigned to projects far from home to keep her from having any chance of success. But when she was working on jobs far from the local office she was given good praise! Even so, Human Resources offered her a demotion although she had been there only 5 months when it was time to do career analysis. The stress of a potential demotion and pay cut was too much stress so she went out on leave again. And while she was out on leave this time they fired her. 


She was advised to apply for disability. The process was hard as it took 2.5 years to get a hearing and the only way she was able to do that was by enlisting the help of a senator! He stepped in and was able to get her a court date before the judge in October 2015. She was awarded permanent and total disability from the judge because of the amount of work she missed due to her vertigo. There was a Social Security Disability rule she met that helped her to qualify. “I believe the pain from TN plus being fired from my last job made it more understandable that I was struggling in the workforce. But the wait was long! I finally got the payments in December 2015. The financial mess those 2 years though … I still don't know how we survived with so little, aside from my sense of humor. It's so upsetting to me because many of the TN warriors wait years like I did & it's completely unjust.” She also received a disability tag for her car, quite easily, but only temporary even though her doctor had requested a permanent one. She feels she was discriminated against because of her young age. They figure she will “get over it”. Little do they realize that it gets worse with age.  

 

While she was still working Tracy took her ex-husband to court for the damages he caused her. It was two weeks of her life that were “just awful”. Just as she feared, the jury couldn’t “see” Trigeminal Neuralgia! His lawyers really hammered on that and her lawyer wasn’t prepared to deal with it even though she had warned him “You need to be ready for people coming at you with this being an invisible illness.” His belief was that the bottom line is “it’s okay to hit your spouse” and that is the way the jury looked at it. When the first three counts came in as being “not guilty” everybody present in the courtroom let out a sound indicating it was a shocking verdict and “are you serious? How can it be that he got away with it?” sounds. They did find him guilty on the fourth count, which was “cruel and unusual treatment of a person for the entire duration of the marriage”, which was 12 years! They said he treated her worse than a dog. “I wanted to run out of the courtroom.”  

 

“I did get child support and I got a very, very nice settlement so I was able to buy my own place in New York. It’s nice because the kids and I have a nice little townhouse with great neighbors. We are close enough but also he’s far enough away.” He still “acts like a creep” to her. The two-year restraining order from the Integrated Domestic Violence Supreme Court ended in 2014 and as long as her ex is a “good boy” he won’t get another one. “He has been naughty and there have been times when I look at him and think to myself ‘what is he doing’? But when you’re sick you have to sort of pick and choose your battles and my biggest battle with him is that he is still in denial that I am sick and he played a very major role in this.” He has a live in girlfriend but the children don’t like her. Even she has left him once. What Tracy hadn’t known before the trial is that he was abusive to his girlfriend previous to her. She knows that he has hit the kids. “I know that at some time the kids will say to me “Mommy, we no longer wish to go to him”. I asked if she felt like they were safe with him and she replied that she didn’t feel that they were as safe as they feel with her; that they have a different kind of safeness in her house. An emotional safety. Like getting their needs met. Being fed if they are hungry. She may have to ask three times what they just said because of the Topamax brain thing going on or “what did you just ask for? What did you ask me to get you to drink?”  

 

But she was not awarded alimony because she was still working at the time. She pays all of the out of pocket medical costs. Tracy expressed her disbelief at the exorbitant fees this illness carries with it due to it being so rare. “That to me is terrible. If I could see reform on that, that is one thing that would tickle me in my heart because along with all of our suffering we shouldn’t have to pay so much for medical care. It’s craziness!”   

 

In 2013 when she lost her job and had moved into the townhouse she had bought, she started to have vertigo and didn’t really know why. At times she couldn’t stand up. She would be “sucked to the ground” and she’d get a bad headache. She was like “What? Now what’s going on?” She had gone to a few specialists and her neurologist kept saying it was occipital neuralgia because she also got burning all over her scalp. (Primarily on the left side.) And she would get strikes inside her eardrum as well. But then she’d have these vertigo attacks with migraines that would knock her to the floor and she couldn’t move and she’d be vomiting for seven days at a time. She couldn’t get up. After she’d been whisked to the hospital a couple of times with this and was suffering from severe dehydration, her primary care physician said “Let’s find out if there is something else going on.” She went to a neurologist and she did another CAT scan and balance testing and said that based on the results she thought Tracy had vestibular migraine disorder. This means the vertigo is the result of the migraines. That you can have an eight-day migraine attack that presents in the form of vertigo instead of a headache. She asked if Tracy ever had migraines with light sensitivity after it is all over and Tracy shook her head "yes". That got added to the list of possible issues that she now has. The doctor said it is probably all related to the trauma to her head. That was in 2014 after the trial. She tried acupuncture, an ENT and then this year, in 2016, because she was throwing up so much and getting vertigo so often and dropping weight so fast, her doctor wanted her to go to a gastro doctor and get checked out. It was a different issue in itself but is not related to her neurological stuff. He had seen the erosion in Tracy’s throat and stomach from all the chronic vomiting but there was nothing wrong with her that would cause her to be throwing up all the time from a gastro perspective. So the vomiting was blamed on the headaches too.   

 

So she has basically crossed everything off except that she hasn’t gone to a trauma clinic, hasn’t seen Dr. Brown, one of the TN specialists, and also hasn’t gone for a microvascular decompression or MVD.  Nor has she had any of the other operations TN warriors have tried. “I’m too chicken to do it. I know the side effects.” she says. “Once someone cuts into your head you are in a position that can’t be reversed.” So she figures she will live with it the best she can, which some days she can’t, “it really does suck!”  

 

Tracy says “I have four doctors I love. I have my therapist, my primary care doctor, my neurologist and I’m missing one. But my neurologist is so sweet, he’s probably been practicing for thirty years, and every time I get upset and I start crying he goes ‘I’m just so glad that you make it each day to still be able to be here to tell your story.’”  Her response is that “Doctor, I can’t cry any more” because it is humbling to her when he says that to her since it is so true. She was in his office this past February because he suggested she get another MRI as well as an MRA (which is a magnetic resonance angiography. It studies the blood vessels and provides better imaging in blood vessel issues specifically to the brain and ear, which her neurologist was focusing on.) She says it is the loudest scan she has ever had. “Why do they ask you if you want music? You can’t hear a thing. It sounds like sound is coming at you in a hundred different ways. You are so deep into the machine and they tell you ‘don’t move’ … but you can’t. There’s no possible way to move.” Afterwards he showed her the close ups of the trigeminal nerve. He said “We can see there is compression there.” “He is trying to get up the nerve to tell me that in my inner ear, my inner nerve, he sees damage to the arteries. The part that communicates balance … your eighth cranial nerve is responsible for your balance and something else. “Those are damaged so they are getting the wrong signal. That is why you drop for no rhyme or reason and for sometimes days at a time and sometimes for hours at a time.” At this point in the interview, I just had to ask what she does with the children when this happens and she replied they have to go to their father since her family all lives on the West coast. “It’s really hard. It’s really, really hard. It’s a good thing they are older (11 and 8 now) and a little more self-sufficient. They can stay here, but I’m vomiting and not able to stand up at all. It’s scary for me. I sometimes can’t even get to my medications. The neighbors have to come in to help me. Thankfully I do live in a townhouse development and thank God for really good neighbors.”   

 

“(My ex-husband) has to see me going through that but yet he still sits here and denies what happened to my face. He doesn’t want to admit he did it. He is still in denial.” He was tried for the facial pain but not for the inner ear damage.  

 

Tracy finally found support groups on Facebook and after watching how other people felt who were communicating there she discovered that others felt the same way she did.  She was surprised to know that she wasn’t crazy - that she isn’t the only one who struggles every day to brush her teeth. Not the only one in the morning “trying to put makeup on my face but I can’t because my face is going wild. Some days I give up. The hell with it. Or I’m drinking coffee but without the sensation in my lips the coffee will go straight down my blouse. I’m pretty good at laughing it off now. But (at first) it was really hard to deal with.”   

 

So FB is where she met Rebecca Thorpe and found her to be really supportive. “Meeting Rebecca changed me. She made me feel like I had to go on and she got me to do a lot of advocating.” Rebecca was coming to NJ, an hour and a half from her place so “I thought I should go meet her. If I know I am having a good day I can drive.” (She had just gotten her handicap-parking pass the day we spoke). She went and met Rebecca, Abigail (a 16 year old) and Alphonse. She saw the “no big deal, we can do this” smile on Rebecca’s face and she thought if she’s going to live her life with this illness she needs to surround herself with people like her, the TN warriors. So she tries to keep in contact with Rebecca and has since created a network with some other girls over the course of the year. She also made other friends at the Facial Pain conference and also at Amanda Young’s “amazing, amazing fitness thing. I was so touched by it because I am a fitness girl myself.” She asked Amanda if she could do anything to help with that event since she had already reached out to her in another support group. She did help out with the silent auction table and got to meet many others. It was such a happy event. “Everyone down there was in such a good mood talking about TN. It was lively, warm, and happy.” She felt honored to be invited to be there and got to be in a video with Amanda and go on the news. She learned from Rebecca that there needs to be a lot more funding to the foundation to find a cure. People don’t realize that.   

 

After speaking with Michael Pasternak about it she knew she needed to raise awareness through fundraisers. She reached out to friends who donated their commission from selling jewelry products and home products and it has been successful. One friend who works for the home products company Scensty has donated her commissions and items from multiple online fundraising parties. Another woman from KEEP Collective donated her commissions as well as jewelry from fundraisers that are going on all year long to support the foundation. She is excited about the bracelets by KEEP Collective that are customizable. She had one made that says “I run for TN”. She found the site trying to distract herself from her pain one day. Another fundraiser she has done is through trendy jewelry company Stella & Dot.  She has also done fundraising through the shoe charm company Beecausecharms. She remains dedicated to fundraising, advocacy, and awareness for facial pain.  

 

My story is sad and its tragic. But what could be better than if I take it and make it into a triumphant story? I could make it into a positive story of inspiration and hope that would make other TNers say I can get up and live my life with this brutal illness too.And that has been my goal in doing the fundraisers. I do a lot of running for awareness. I got into the Falmouth road race, which is a HUGE road race up in Cape Cod. I ran in my TN shirt that says racing for a cure, running for TNand everybody in the whole race was calling out You go! Win! Running for a cure!People stopped me and asked me what is TN? Tell me about it.I just love telling the story (not about my ex husband or those details as I don’t want people to run away from me … but a short version of living with a very painful face condition or chronic pain condition while being a single mom with two children). Many people use sports to raise awareness for their cause. And Im so surprised at how many people turn around and say You know thats funny. My sister has a rare disease too.’  Then they tell me about that. And then they say ‘I’m so sorry that you have it but I applaud you for being out here and telling me about it.’ I just want to get the message out there so that some day, hopefully, were not RARE. There are times where I am in so much pain that I feel badly but I want to inspire others. You dont have to be as good as before but I want people to know that you can still go on." 

 

 

   
Copyright © 2018 The Facial Pain Research Foundation. All Rights Reserved.
Joomla! is Free Software released under the GNU General Public License.
Marocjoomla