My Personal Nightmare
I am sharing my story in case you or anyone you know has similar symptoms to me and the doctor cannot figure out what is wrong.
When I was nine weeks pregnant my obgyn figured out that I had a growth on my thyroid and immediately referred me to an ENT. My ENT immediately removed the growth after it was found to by thyroid cancer. The plan was for me to find and Endocrinologist and maybe get radiation. I went to an Endocrinologist from MD Anderson because my college friend also had thyroid cancer and lived in the Houston area. This was December of 2012. In March of 2012, I was around five months pregnant and had my necked scanned. The doctor saw a lymph node that looked cancerous and decided to biopsy it. It was by my ear and jaw bone so the doctor had to get on top of me to do the biopsy. I remember the biopsy being very awkward and my neck moving. The doctor was very sweet and we were both relieved that the lymph node came back clean.
In July, I gave birth to my daughter Charlotte. My Endocrinologist told me I would have tests a month or so after she was born to determine if I would have the radiation. I was stressed because I wanted to breastfeed for a while and knew this would not be possible if I did the radiation. After Charlotte was born, I began to have a pain by my ear that would not go away. I asked my obgyn to look and see if I had an ear infection but he said my ears looked clear. The pain started to get worse and I had to sleep with a heating pad by my ear at night.
In September, I went to my Endocrinologist and was told that for the moment, I would not have to have radiation. I was thrilled. The only thing that was hanging over my head was that my ear was hurting all of the time. I mentioned it to my endocrinologist and she suggested I go back to my ENT to check it out.
I immediately went to my ENT and told him that I had a pain by my ear that would not go away. He did not see any evidence of ear infection. He told me he would order a CAT scan of my ear if the pain did not go away within the next two weeks.
When I went home, my mind started to think crazy things. I certainly must have a brain tumor. My husband said “You are worst case Christa. You do not have a brain tumor. ” All I could think of was that weird biopsy and somehow I felt that was connected to this pain.
Two weeks passed and my ear ache was not getting any better, it was actually getting worse. My ENT called in the CAT scan request to North Cypress Medical Center. My husband was going on a week long business trip to Scotland. I remember having lunch with him right before he left and crying. “I think I have a brain tumor” I said. “Stop the craziness, Christa.” “You do not have a brain tumor.” I was panicked because I had started to feel weird. My body felt off. We had lunch at a Chinese restaurant and my fortune cookie said something like “your health is going to be ok.” My husband and I looked at each other and thought, “Wow! That is God letting me know I will be ok.”
My husband flew to Scotland and my twin sister asked me to spend the night at her house to help get her daughters to school so she could take her husband to get a vasectomy. She had a baby five weeks after me and she was going to take her baby, Finley, with her. In the morning, I was getting her girls ready for school and I started to freak out because I was having a hard time buttoning Isabella’s shirt. My hands started to shake. I had a weirdness come over my body. Something was not right with me. My legs also started to feel a little slushy. I dropped my sister’s kids off at school and headed to the quick care by my house. I told the doctor that I thought maybe I had the flu. I was feeling weird and my body was feeling “slush” almost like a Jell-O feeling. The doctor did all of the tests he could possible think of (even a pregnancy test) and sent me home saying that I must have a virus.
The next morning, I went to North Cypress Medical Centerto have the CAT scan of my ear. Of course the technicians will not tell you ANYTHING. I just knew it was a brain tumor. I pleaded for them to tell me something. I had a new baby. Did I have a brain tumor? They were tight lipped. Later on that day, I called my mother in law crying my eyes out because I did not feel well, I had a three month old baby, and my husband was out of the country. She immediately said that she was on her way. I remember that I continued to feel very “off.” I remember telling her that I wanted to go and run to prove that my legs were ok because they still felt like jelly. I still felt like I had the flu and I started to feel a little dizzy. My mother in law told me to go to bed and sleep and she would take care of the baby.
On Friday, my husband came home from Scotland and found me still not feeling well. On Saturday, I attended my sister-in-law’s bridal shower. During the shower, I still felt weird. When I got home, I told my husband that I felt like I was going to pass out and asked him to bring me to the emergency room. We arrived at North Cypress Medical where I told them what was going on. I started with “Back in March, I had this biopsy that was really awkward…..then a pain by my ear that wouldn’t go away.” They pulled up the results of the CAT scan that I had earlier in the week and told me that everything looked ok. They were concerned about my dizziness feeling and did a cat scan of my head. The CAT scan came back normal. They gave me an IV of fluids and told me I must just have a virus. They sent me home and I started to feel better.
On Sunday, I woke up and my legs felt even worse. They felt like Jell-O and although I could walk, it felt awkward. I also was feeling dizzy. My husband kept telling me that I was ok and to stop stressing. “Remember the fortune cookie? You do not have a brain tumor and you are not going to die!” I did not feel ok and was aggravated that my symptoms were getting worse. Without telling my husband, I drove myself to the North Cypress Medical Center. I told the doctors again “I am not ok. I feel like I am going to faint. I think I must have MS or ALS” My hands felt shaky and my legs felt giggly. I started the story again “I had this biopsy…..
The doctors there again were amazing. They did not treat me like I was insane. They were very compassionate. They said they were going to do an MRI of my brain. I called my husband and told him “I am at the ER and they are about to do an MRI of my brain.” He immediately woke the baby up and headed over to the hospital. The MRI came back normal. I did not have a brain tumor, MS or ALS. The doctor said “You have vertigo. It is a virus and will be gone probably in two weeks.” He gave me medicine and sent me home.
I had never been so excited to hear this news. Thank goodness they could figure out what was wrong with me! He did say, though, that he had no idea what was wrong with my ear and that I still needed to follow up with my ENT.
That next week, my dizziness was getting worse and worse. The medicine was not working at all. The ear pain became secondary to my dizziness. The dizziness did not feel like spinning. It felt like I was rocking back and forth on a boat. It felt like I was drunk all of the time. The feeling of rocking back and forth on a boat did not go away when I laid down. I only could escape it by sleeping.
I went to my ENT to discuss the ear pain and the dizziness. By this time, my uncle who is a doctor and a family friend who is a doctor in France continued to insist that the dizziness had to come from my ear.
My ENT did a vertigo test on me (they lay you down and look at your eyes). He told me “You do not have vertigo.” “I do not know what the pain is by your ear or the dizziness so I am referring you to a neurologist.”
This was very scary because I know that going to a neurologist means that the problem is serious. The neurologist that he recommended told me the soonest he could see me was in a week. I was devastated because I couldn’t imagine waiting an entire week of feeling dizzy from morning to night. By this time, I was not able to take care of my baby, Charlotte. My husband was taking off of work (or working from home), my mom came into town, and several friends offered to help (for which I will be eternally grateful for). My neighbor Carrie would call me everyday, “How do you feel and what can I do?” This was the biggest nightmare of my life. I will never forget my twin sister bringing her new baby over and making me go back to bed. Every once in a while, I would hear the two babies crying but ultimately, when I was sleeping, at least I wasn’t rocking back and forth.
I had more symptoms. My feet would vibrate for hours at a time. It felt as if I had a vibrating cell phone in my feet.
A couple days after seeing my ENT, I found another neurologist. I called her office and cried to the receptionist begging for an appointment. She felt very sorry for me and squeezed me in two days later. My mom was in town so my twin sister drove me to the appointment. The neurologist was very sweet but concluded that she had no idea what was wrong with me. She was sure that I didn’t have vertigo and didn’t know what the pain by my ear was. She ordered an MRI of my inner ear and gave me a prescription of Xanax to deal with the dizziness and the depression I was having as a result of this. I went home deflated. If the neurologist had no idea what was wrong with me, how would I ever stop being dizzy? She ordered a Lyme disease blood test in case I had Lyme disease.
The next day, I still felt horrible. I drove myself to the North Cypress Emergency Room. I was certain that at some point, I would come across a NEW doctor that I could tell my story to and they could suggest or figure out a solution. The nurse in the ER was very sweet and basically told me to stop coming there and to continue with the neurologist. There was nothing more there that they could do for me. I was desperate. Twenty four hours of dizziness was taking a tole on me. I never thought about killing myself but I now understand how people in a chronic situation can feel like that is the only answer. Going through this nightmare changed my view of lots of things. You can honestly not know what a person is going through until you have been there. Many people who I told that I was dizzy would say “Oh man, I had vertigo one time and it was the worst thing that ever happened to me.”
I went to an acupuncturist and spent three hundred dollars on treatment and herbal tea. I did not see any improvement with the dizziness.
The next Wednesday came and I decided to go to the neurologist that my ENT referred me to. My husband went with me and we explained my situation. I was crying because I was so desperate. The second neurologist was super nice and looked at me very calmly and said “You have two things going on. You have clenched jaw (TMJ) and vertigo. The pain by your ear is clenched jaw and I will give you steroids that will clear it right up.” Me “Several doctors have told me I have vertigo and several have told me I do not have vertigo.” He said “You have vertigo and there are a few medicines that we can try.”
I was the happiest person ever. I couldn’t stop crying from relief on my way home. My husband and I drove to Dallas that weekend to visit our friends. I took the medicine and told them that I would be cured soon. The steroids worked immediately and the pain by my ear disappeared. However, the dizziness I felt was still there.
I called the neurologist and he increased the dose of medicine. A few days later, my dizziness was not getting any better. He changed the medicine to a different type. A few days later, my dizziness was still there. My nightmare was still there.
I finally decided that I was going to go on facebook and describe my entire situation. A few of my friend’s husbands are doctors. Several of my friends are nurses. Certainly there was SOMEONE who would see my symptoms and have an answer. My college roommate Lindsey suggested that I may have fibromyalgia. My friend Lyndsey who my sister says is the jack of all trades messaged me and said “My mom had vertigo and nothing worked. She ended up having to go to physical therapy to cure it.”
The next time I visited the neurologist, I told him I was still dizzy and I asked him if I could go to physical therapy. He wrote me a prescription for physical therapy at a balance and disorder physical therapy place. I had not idea these places existed. My insurance approved me for one hundred physical therapy sessions.
A few days later, I showed up to the balance and disorder physical therapy place. Kelly, the physical therapist listened to my story “around March I had a biopsy….” Kelly put a mirror in front of me and told me to close my eyes. She told me to then open my eyes and look in the mirror. When I opened my eyes, I noticed that my head was tilted. I immediately straightened it out. Kelly told me “Your balance is controlled by your eyes, your ears, and your neck. I think you have cervicogenic dizziness.
Basically your neck got out of alignment. This is causing chaos on the rest of your body. We need to get your neck back to the correct position.”
The problem with cervicogenic dizziness is that it is not widely known. There are not a lot of doctors that understand it. After the first physical therapy session and working on getting my neck back in alignment, my dizziness drastically decreased. It was still there but it was manageable. I felt like I could function. For the next two months, I went to physical therapy three times a week. A big part of the therapy is getting massages on your back and your neck. This also dramatically decreased the dizziness. I had to wear a laser pointer on my head and trace a bull’s eye. I had to retrain my brain where my center was. I had to do several different exercises at home. I would toss a ball back and forth between hands as I walked in order to retrain my vision and my balance. After the two months in therapy, my dizziness was gone.
My neck is still not a hundred percent better. I still have to get neck massages when I started to feel a little “off.” What caused my neck to get out of alignment? Someone suggested that it could have been the biopsy. However, it could have been the pregnancy and me having bad posture that was the tipping point. Ultimately I am very grateful for ALL of the doctors, nurses, and especially Kelly, who never gave up on me or thought I was a nut case. (Maybe they did think I was crazy but NONE of them made me feel like they did). I am sure my sweet priest, Father Orrin, was tired of me facebooking him begging for him to pray for me. I appreciate the prayers Father Orrin! I will never forget my husband, family, and friends who helped me when I was going through this nightmare. I am also thankful that my husband has great insurance. A representative from Blue Cross Blue Shield actually called me to see if I had been in an accident and maybe there was another party responsible for my ailments (I had my cancer surgery and now all of this). I told them “I am sorry to say that the answer is no.”
I feel like this situation has made me more sympathetic. If you looked at me from the outside, I looked like I was ok. However, from the inside, my body was a swinging pendulum going back and forth. Everyday I would wake up and pray that “this is going to be the day that the dizziness is gone.” Ultimately, by the grace of God, I was ok. I am thankful everyday that I got the treatment and am better now. I can now enjoy my family and my beautiful life!