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Spasmodic Torticollis is regularly misdiagnosed. With each new member we take a step toward being taken more seriously.

What Is ST?

My Story…..I Wish

My Story…..I Wish
By Tina Hartenstine
 
Sometimes when I watch TV, I see those beautiful news anchors or hosts and say to myself, wow, I wish my neck would be like that, I wish I could hold my neck straight like that and get in front of a camera. Gosh, I can’t even pose for a quick picture with my family for a second! I hate getting my picture taken. Having ST is a horrible thing to live with. People don’t understand. Why does your neck do this to you? Can’t you just wear a neck brace or something?  When did that happen? Who says that’s what you have? But why do you favor one side of your face? Did you have a stroke? A woman in a store told her little boy not to stare at people like “that”. I heard it and wanted to crawl under the counter.   Questions, questions and more questions….and the stares! Ugh! I just wish people would stop.
 
My name is Tina Hartenstine. I am from Easton, Pennsylvania and I have had ST since I was 26 yrs old. I am turning the big 50 this year. So it has been a long time and a long road. I was not diagnosed until 2001 when I turned 40. I did my own research and basically diagnosed myself. I took my research that I printed out from different websites back in 2001 to my doctor and he laughed at me! I cried. Then he said you have spasmodic torticollis! I said, yes, I know. He said, I was wondering why you always held the side of your face! …So, he referred me to a neurologist and that is when I began getting my botox injections.
 
The injections helped me about 60 to 80 %. Before my botox injections, and before I even knew what I had, I treated myself with alcohol. I was a beer and wine drinker and I felt this greatly helped my pulling and pain and tremors about 80% but caused a lot of problems in my life 100%. I became nasty, mean, bitter. Tried to just ignore what was happening to me. I woke in pain and went to bed drunk.   I worked full time, married, had 2 children, divorced, did some crazy things and functioned fully as an alcoholic. Never drank on the job. My ST worsened as the years and the problems went by.   I had a great job for our local government housing authority when my ST started. I left there because I listened to a friend and went to a manufacturing company that eventually went out of business. Big mistake. Then, I did end up getting a great job for my county’s District attorneys office in the secretarial department.
But being at the front desk, wow, with ST, and court week, and tons and tons of people coming in. Not the right job for someone with ST. But I handled it, painfully.   Until my spine slipped forward 60%... the L4, L5 vertebra. I went to see a chiropractor and he sent me directly to a neurosurgeon who threw me in surgery right away the next day diagnosing me with a grade III spondylolisthesis.   August, 2003 - 4 hr surgery inserted two rods, 6 screws, bone cement. I had some physical therapy and went home 5 days later. I was home recouping for a while when lighting bolts started shooting thru my feet! My neurosurgeon told me I was crazy and needed a psychiatrist and why was I looking to the left all the time?? I told him I had ST! It was on my medical history. Well, I was back in surgery Oct 2003- another 4 hour surgery and the screws pulled out backwards out of my spine. He inserted bigger screws and packed more bone cement around.   Back home to recoup.   Two weeks went by and I had so much pain and numbness in my legs and feet that I called my neurosurgeon and he said there cannot be anything wrong, that I really need a psychiatrist because of the way my head turned too! OMG. Well, he took a CAT scan. Sure enough….the screws took a backward withdrawal again!    Back in 5 hr surgery Nov, 2003. He took all the hardware out, packed bone cement around my now unstable spine and placed me in a plastic torso brace for 6 months and sent me on my way.   Oh, I was to lose my health insurance by the end of November too. If the first surgery worked I was to go back to work in Nov.    I was approved for disability but had a waiting period of 6 months. So, in the meantime I lost my health insurance; therefore, I could not receive my botox injections; I lost my home in January, 2004; I lost my car and my job could only be held until Feb. and I could not go back. Talk about hitting rock bottom and ST getting worse from stress and not being able to receive my injections, I just wanted to die.   I moved in with my elderly mother. She just had a mild stroke earlier in 2003. My kids ages 10 and 6 at the time, stayed with their dad, and came to see me on weekends. My aunt lived with my mother too, and she didn’t like the fact I had to stay there so I called my friend George and told him I needed a place to stay as he had extra rooms in his home. My friends couldn’t take me in as they had families and problems of their own. I didn’t want to be a burden plus they didn’t understand ST. So I moved in with him in Feb. 2004. My mother passed away April, 2004 from stroke and congestive heart failure. Could things get any worse?? George has been an angel and a godsend. He understands my ST. I received Medicare as of February, 2006 so I had a 4th reconstructive spine surgery at Thomas Jefferson University in Philadelphia in July, 2006. They had to go through the front and the back, a ten hour surgery, to repair and reconstruct my spine and fix the damage done by the previous neurosurgeon. I was in a body brace for 3 months. I had to basically walk around with a broken spine for two years waiting for Medicare. It’s a two year wait from the date you receive your first disability check. I had no health insurance for two years. I couldn’t receive any type of assistance. I was one of those that was stuck and lost in the middle. I wasn’t eligible. However, I was eligible for my botox though through The National Organization for Rare Disorders. I had to drive to the University of PA every three months, an hour and a half drive, to get my injections at the PA hospital since I had no insurance and it was medically necessary I receive these injections but it was required you go to a university hospital. So I thank God for that. I didn’t have to go the whole two years without them.
 
To date, I have screws and rods in my spine that stayed in! Since 2006 I still remain on disability for my ST and spondylolisthesis as I have nerve damage from all 4 surgeries. My left leg and foot are numb and tingly and I still get low back pain; some days are worse than others. As for my ST I receive my botox every three months but I feel as if botox is not working as well as it used to… not lasting as long. I go to Allentown Pain Center for my jaw also has been pulling to the left for so many years and has affected my left jaw, so I was fitted with a night guard to wear at night.  This does help my headaches. I have noticed if I fall asleep without wearing it my headaches are more severe the next day. Also, I receive sugar water and lydocaine injections in the back of my neck below my skull bone in between botox injections to help lessen the pain from pulling. Dr. Barry Glassman, DMD specializes in facial/cranial problems and he when he sees me he just makes me feel like he wants to fix me today, straighten my head now, but he can’t. He does everything he can to lessen the pain. My neurologist, Dr. Peter Barbour, at Lehigh Valley Hospital, is wonderful. He jokes and laughs with me and makes me feel better, that I’m not alone with this.  He was even backing me when I tried to get a support group together in my area where no one showed up which was very discouraging and disappointing. My therapist, Beth Halenar, MA, LPC of Lehigh Valley Health Network, helps me to live each day with this horrible disability. There are days I feel like a monster and don‘t even want to go out of my house. It’s great to have her to talk to when the people closest to you, your friends, just don’t understand. They don’t understand the pain that goes with it. The everyday pain STr’s endure. I wish I could just switch bodies just one day with people that ask questions, that stare, that just don’t understand…….just one day. Then they would understand.  
 
 
I am still with George. We bought a beautiful home together. My son is now 17 and going off to college in August for industrial engineering. My daughter is 13 and in middle school. I am truly blessed to have such great kids. They have endured a lot too with their mother going thru 4 spine surgeries and having embarrassment with my ST. My daughter is scared she’s going to get it and every time she gets a kink in her neck, she freaks out. But I reassure her that she won’t. I pray everyday to the Good Lord my children will never ever get this horrible, horrible painful disorder. I try to recall how my ST could have been triggered. I was in a car crash with 7 other kids when I was 15 yrs old. We were banged up but ok as we all cushioned one another. I am told I was born with a spine deformity at L4, L5 and that is why it slipped forward like it did. Maybe that triggered ST. I was with a guy that had a nasty temper when I was 18 thru 25 yrs old and he used to get physical with me, beat me I should say. Jacked me up against the wall by the neck. Did that trigger my ST? I wish I had the answer. I wish there was a cure. Wish people would understand more. People understand Parkinson’s, MS, but when you mention ST, they look at you funny.     So I just don’t even talk about it.
 
I would like to thank Howard and staff for all they do with the Magazine and brochures. And I just received my “Im Alive, I’m Awake and I Feel Great” book. How wonderful it is! I don’t know what I would do without you Howard! Thank you so much for everything. It is a lonely thing to have and having you and your website and reading others’ stories is truly a blessing for all of us. 
 
I would like to share with everyone the one thing that has really helped me is watching Joyce Meyer Enjoying Everyday Life program. She is one of the world’s leading practical Bible teachers. She is funny, to the point she’s on the discovery channel and others. And has many books. She has helped me get up and out of some of my lowest points. Her website is www.joycemeyer.org
 
God Bless,
 
Tina Hartenstine
tah2514@rcn.com
610-438-3490