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Carter & Cheryl Orlet

 

How Cheryl Orlet and Her Family Cope

With Trigeminal Neuralgia

 

By Kathleen Sweeney

 

Cheryl Orlet is an amazing mother of three, two boys and one girl, of which one of the boys and the girl are twins. Although she is a TN Warrior, as we call them, she still manages to attend almost all of their soccer and baseball games and competitions. Her daughter is a dancer and when she is competing Cheryl tries to fix her hair and her makeup but her hands shake too much to do it. Other mothers help out by telling her to sit down and let them get her ready. It is this kind of support that carries her through. “The noise at those competitions is just so loud! I sit there just trying to smile for her. I put on a brave face. I don’t want her to see how much pain I am in. I have amazing friends who help me out so much.” But she worries that her suffering is affecting their childhood. Her deepest concern is that she is somehow robbing them of the carefree years all children deserve. They worry that their mom isn’t feeling well and that they might be making too much noise or are disturbing her in some way, causing her pain to worsen.

It all started seven years ago in 2011. “I was having an ungodly amount of pain that I think I stayed awake with for four days straight … just crying.” She could not get relief. She went to the emergency room and they sent her to an ENT doctor who sent her to see her dentist. Everything came up clean there so they sent her to her primary physician. As she told him “… there is this invisible line drawn down the middle of my face. The right side is just – I’ve never ever felt pain like that before. Even after having gone through two C-sections and having root canals done, I’ve never been in so much pain.” He told her it sounded like Trigeminal Neuralgia and referred her to a neurologist who gave her so much medication that she couldn’t function … and he just kept upping it. So she quit him. She finally found one she really liked and he gave her trileptal, which has minimal side effects. She wasn’t as groggy and tired. It allowed her to function. As she says, “The most important part for me is, I can suffer …  and put up with a lot, but I hate anything that takes away from my kids.” She doesn’t want to miss out on anything that happens in their lives.

Cheryl is a registered nurse. “The absolute worst thing about this disease is that not a lot of people are educated on it. … When I was in nursing school we literally learned about it for five minutes. It was a paragraph in our book when we did the section on neurology.”

Whenever Cheryl has to go to the emergency room and tell them she has trigeminal neuralgia they tell her they can’t find it in their system so they put her under headache or migraine. “It’s not a migraine. It’s the most ungodly amount of pain you could ever imagine. Some of them look at you like you’re a drug seeker, just there to get a fix. I am there as a last resort!”  On one particular day there was nurse who saw her and said she had never heard of trigeminal neuralgia but had just had someone else come in with it. She said they were asking for dilaudid, an opioid, and she wondered if that was a reasonable request. Cheryl responded “This pain is real. It is real!” The nurse was just amazed that she had two patients there with TN and she had never heard of it before. It is in these situations that she tries to raise awareness. “It needs to be made more aware. I love raising awareness for it. I just hope some money starts going to it.”

After three years of living in pain she decided to try surgery. She told her husband “This is how bad this disease is. I am so desperate I am willing to go into brain surgery.” But she was excited because she thought this could be “it”! On September 15, 2014 she had micro vascular decompression surgery. They found that an artery had adhered itself to the nerve. The surgeon was able to scrape the artery off of the nerve and then he put a Teflon pad around the nerve so that another artery wouldn’t or couldn’t do the same thing. She was supposed to be there for three days but was actually in the hospital for 10 days overall (3 days in ICU) with complications.

Her children came to see her after her surgery and she was asleep when they arrived. She awoke hearing her daughter crying. She was staring at the staples in her mother’s bald head behind her right ear. She said “Mommy are you OK? Are you going to be alright?” Although they had talked about it beforehand you just can’t really prepare children for such a thing. Her oldest son didn’t know what to think about it so he wrote his story (his version of her story) for a school project, which helped him to cope. He won First Prize and his story will follow this one, for you to read. He was in fifth grade at the time.

When Cheryl got home from the hospital she had about three weeks of relief. “A little bit of relief” is how she describes it. She was highly medicated and recovery was “just awful. Every time I sat up I would throw up.” Her symptoms returned and at times she thinks her trigeminal neuralgia was worse since she had the surgery. When I asked if there were any benefits at all she responded “No.” She has Type II, which means the pain is constant. And at times it is even worse. Washing her hair, her face, combing her hair, drinking, sweating, all increase the pain. And then there’s all the medicine. She can’t eat yet it makes her gain weight. She hops on the treadmill to work out which starts her sweating and then the sweat rolls down her face.

She started taking trileptal in 2012 and it was new to her. She has had success with it but she also needs baclofen due to her inner ear pain. “The pain is just so deep. Right between my inner ear and the roof of my mouth.”

But again, what makes the pain that much worse is the way it affects her kids. They pick up on how bad she is hurting and it hurts her to know this. When it gets really bad her right eyelid swells shut. Her children will ask “Mom do you need me to get you a heat pack?” or “Can I get you something?” “Do you need anything?” The worst is when they are kids being kids. Her twins will be jumping around and all of the sudden they just stop and freeze. They turn and say “Oh mommy. Is this making your head hurt?” Or when her daughter who has asthma gets coughing hard and makes herself stop to apologize. “Mommy, I’m so sorry. Is this coughing hurting your head?” Cheryl tells her “You are a little girl with asthma. Don’t worry about me. I’m the mom. I need to be worrying about you. Don’t worry about anything you do. I’m worried about you.”

One day she passed out at work, the pain was so horrible. She collapsed and they sent her to the hospital. Her neurologist thought a University doctor might see something he didn’t or have some idea of something else that might work … just to get his opinion and see if there was anything they hadn’t tried. He was good (they said the best!) but when he saw her chart he told her she was on what she needed to be. That her best bet was pain management and since there is no cure so, basically, this is your life. Just go day by day with the pain management drugs. When she went back to her neurologist because she was having more symptoms she was told she was no longer a patient since she went to another doctor (whom he recommended). That was quite a surprise to her as she found herself without a neurologist to work with. He general doctor has since taken over and doses her trileptal. He works with her; he believes her pain and he has become a good friend. But she still can’t believe the other one just let her go after all they had been through together.

For Trigeminal Neuralgia Awareness Day on October 7, 2015, the Belleville News Democrat newspaper did a story on Cheryl. It is in a bigger town next to hers. She just really wants to raise awareness! She sells shirts with Trigeminal Neuralgia on them and donates the proceeds to the Facial Pain Research Foundation. She also wears them so people will ask her what it is so she can tell them about it and that she sells them to raise funds for research. She has had people stop and say to her “I have that too.” She loves to raise awareness of it.

Her husband has been a colossal help. She hasn’t done the laundry in at least six years because it is too painful to bend over. When he would have a headache or a toothache he would ask her “Babe, how do you do this every day?” Now he just asks it out of the blue. She says “You do what you have to. It affects every single day of your life. There’s just not a day without pain. It’s ‘How bad is it going to be today?’ ‘Is it a day I can even get out of bed?’ Or is it I’m going to be in the middle of doing stuff and I just have to get through that. Luckily I have an awesome support system. … I think if it wasn’t for my family there would be a lot more days in bed.”

Although Cheryl has tried acupuncture and a number of other things, people always seem to have some advice to give of some thing new she should try. She says she is scared to try anything because she doesn’t want it to get worse. She can’t imagine being in any more pain than she is in now and she is not willing to take that chance.

She worries that she is stealing her children’s childhood; that her pain is affecting them in some negative way. “You just try to be as happy as you can and not let your kids see the tears. They worry about me so much and I don’t want them to. I want them to just be happy kids and not tell their friends when they come over to not be too loud cause ‘I don’t want to hurt my mom’s head.’ I don’t want that. I don’t want them to look back on their childhood and say ‘my gosh, mom was sick all the time.’ She never used to miss anything but this past year has gotten so bad that she had to miss things. Her children say “I get it. I get it Mom.”

“Luckily I have a job where they are understanding. I’m an administrative nurse. I do scheduling and a lot of paperwork and just make sure that all goes well. I’ve been at my job for 20 years. I started in the kitchen and I worked my way up to Nursing Director. If it wasn’t for them I wouldn’t have a job. They know when I’m not feeling good. They’ll say ‘Go home! Go work from home.’ There are some days I can’t even sit upright in a chair.” When she thinks “I can’t do this anymore” she recalls how “I busted my ass to get through nursing school. It was HARD. I haven’t been doing all this work for Trigeminal Neuralgia to rob me of my medicine career. Something I’ve been wanting to do forever.”

When asked what she would say to someone who just had that jolt of pain for the first time she said first to find a medicine regimen that works for you. Don’t be afraid to stand up to your doctor. If you can’t find agreement with him or her find a new one. Definitely join a few support groups on Facebook. Get involved and raise awareness.

“By all means possible take the negative and turn it into a positive.”

  

Carter’s First Prize Story in Fifth Grade

 

            Webster's Dictionary defines "incurable" as "not likely to be changed" but my life and my family's life (especially my mom's life) has changed in so many ways in the last 5 years. My mom has a rare and incurable disease called trigeminal neuralgia and this is her fight and our family's journey.

This all started one morning when she woke up. When she woke up she had horrible facial pain. She tried taking medicine like ibuprofen and Tylenol but nothing helped. After a couple days she still had pain so my dad took her to the ER and the doctors just didn't know what to do. They decided it would be best for my dad to take her to the ear, nose, and throat doctor. I was very confused why they weren't just taking her to another hospital. During this time I was just ... confused. I barely knew what was going on and why she was having this pain. When she came home from the doctor they said that she needs to see her dentist.

That evening she got into the dentist. After examining her he determined that there was no problem with the gums or teeth that would cause her any pain. The dentist said that she just needed to go see her doctor. She has seen him for many years and she trusts him.

The next day my mom was able to get in to see him, my mom explained to him that she was in such bad pain she couldn't bear it. She described her pain to him and she said "if you drew a line down the center of my face, it's the entire right side of my face that is in horrible pain, especially the inner ear and the roof of my mouth". She then went on to tell him about how she couldn't sleep and walked around our house at night because she couldn't sleep because she was hurting so bad. He looked at her and said, "I'm afraid you have trigeminal neuralgia". They talked about different medicines she could take to reduce her symptoms, there is no cure for the disease but there are medications that can reduce some of the pain and other symptoms such as relaxing the nerve. He prescribed medicine for her that people with seizure disorders take. He told her that she should try to find a neurologist. Prior to her first visit with her new neurologist my mom was admitted to the hospital for some pain management. During her hospitalization, she was given steroids and pain medicine and she finally felt some relief.  She remained in the hospital for a few days and she was released with orders to see a neurologist.

 

Within the week my mom went to see what would be the first of 6 neurologists. All the different medicines he was trying with her made her very tired and it was hard for her to do anything and she slept most the time. Every time she told him that she was in pain he increased her medications. After going back and forth with that doctor many times and disagreeing about treatment my mom went to look for another doctor. The next doctor she saw suggested she have a treatment done called "gamma knife" this is a very precise radiation treatment that is focused on one small area. The doctor wanted to do this treatment to directly access the trigeminal nerve to attempt to numb the pain or at least decrease it. After a lot of testing they said she wasn't a candidate for the gamma knife treatment. It seemed like she would get so excited only to be disappointed, sometimes it was hard to see her so upset. This doctor referred my mom to another doctor across the river.

I remember my mom came home very upset from this appointment, the doctor was very short with her and would not listen to all of her symptoms. This doctor wouldn't give her time to tell her story and he pretty well just blew her off and wouldn't allow my mom the chance to speak. He did at least order an MRI to look for any abnormalities which came back

OK and that was frustrating also, she didn't want anything bad to show up but she did want some answers. So that was another doctor gone which left her with no doctor.

There were few other neurologists that she saw that were also one­appointment doctors. Even though all this was so frustrating she was always happy. Between Mid 2013 to August 2014 my mom was in the hospital about every other month. These times were the hardest and I would miss my mom so much. We would go to the hospital to visit and dad would say "I know this is hard guys but please don't cry in front of your mom it may upset your mom more" and when we got to the hospital we could tell mom was being strong even though I could tell she was in pain and was missing us. Mom would smile, hug us, and ask about our days and school and our activities. It was hard not to get sad or scared when I saw the IV's and monitors hooked up to her.

One good thing did come from all these times in the hospital, she found a really good neurologist and she really liked him. He helped her find new medications with few side effects which was good for us because she wasn't as tired and could do more stuff with us. After many more times in the hospital, he introduced my mom to a neurosurgeon he worked with. He was also very nice and wanted to help, the first time he met her he said, "don't cry I'm going to help you". My mom came home excited that she had found a doctor that would help. In august 2014, after being in the hospital again, she decided to go in and have brain surgery.

According to my mom what the doctor was going to do was to go into her skull and the brain and look at the nerves that come out of the spinal cord and look at the trigeminal nerve and see what was going on. The doctor would look and see if there was anything touching the nerve and if there was he would move it away so the nerve wouldn't be affected and that would hopefully stop all the pain.

The surgery was very scary for mom but just as scary for me and dad. Bradyn and Caitlyn were too young to understand. Just hearing brain surgery is scary, mom and dad tried to act like it wasn't a big deal. My mom was supposed to only be gone for three days. My brother, sister and I stayed at my grandma and grandpas house. They tried to keep things as normal as possible like there was nothing going on but we missed mom, dad, our pets and our home. Mom and dad ended up being gone for 10 days, we got to see her one time while she was at the hospital. We walked into her room and it was really scary for us, she was hooked up to all kinds of wires and tubes, they had shaved part of her hair off and there was a row of staples in her head. We were very nervous to go by the bed but so happy to see her. She was happy to see us but she was in a lot of pain. My mom's nurse and pain management doctor had heard so many stories about us that they had presents ready for us, they gave us a bag with candy and a book that had an invisible ink pen, her doctor made us balloons with smiley faces made out of the gloves that the doctors and nurses wear. I felt better about my mom being there after seeing how nice the people were that were caring for her.

When my mom came home she was having a very hard time, her pain was still very bad, she kept telling us that it was going to be okay because she was getting better. Mom spent about two weeks in bed before she could start moving around the house. It was so great having her home because even though she was in bed we could see her every day. So many people were helping us out, I couldn't believe all of the people coming by to bring us dinner and they always brought dessert too! Mom and I would watch movies in her room even when she was not feeling well, just had to make sure not to move the bed too much because it would hurt her head too much. It was a hard time but we were doing good because we were all together, we were just ready for her to feel better and get back to how she was four years ago.

I am sad to say that never happened, mom even says sometimes she thinks the surgery actually made it worse. My mom saw another neurosurgeon to see if anything else could be done and he told her there was no cure for this disease and she has a rare type of trigeminal neuralgia and all she can do is have help dealing with the pain.

My mom took this bad news and turned it into a good thing by teaching others about her disease. Last October the Belleville News Democrat put a story in their paper about my mom, they came to the house and talked to her and put it in the paper. Mom has also been raising money to give to the people that research cures. My mom makes me proud, it is hard seeing her in pain but no matter what is going on she is always there for me and my brother and sister.

 

   
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