Crystal is a Meningioma survivor. She writes of her personal experience, advice from medical professionals and her research.
A Little Background
Doctors visits started when I was 16 or 17. I would sleep for weeks at a time. Barely had strength to get up and eat. I thought that I pushed myself too hard, and that I was a normal teenager. A few visits to the ER every year because I can't hold myself up. Six hours, an IV bag, small ginger ale and $10,000 later, set home with a headache diagnosis. This was repeated more times than I like to admit.
I went to holistic specialists, tested for vitamin deficiencies, allergies, hyperthyroid and a few more I can't remember. I always told the same story and received the same results. My constant headaches were just allergies, my aching muscles and joints were growing pains (stopped growing when I was 14), tired because I was a teen and weak because I was dehydrated. For over 20 years I searched for an answer to what was wrong with me.
When I was 34 I began hallucinating and it got progressively worse. During presentations, job interviews, conversions with friends, I would become a shell. I would step back in my mind and become engrossed in an imaginary world I was unable to understand. I was obsessed with figuring it out, while my body with through the motions of life.
How I managed to graduate from college, find great jobs and keep them is beyond me. There are memories of me trying to stay focused on the real world, trying to fight my visions and act as normal as I could.
“Everything is perception. A hallucination is a perception of a certain reality. It is a perception of a certain state of mind.”
— Frederick Lenz
Where I Went Wrong
Here are a few things that I did wrong in my search for a cure.
1. I was not always honest.
- I was afraid to talk about my hallucinations. I didn't want to be crazy.
- I down played my pain. It was difficult for me to admit how much I hurt.
2. Not enough research about my symptoms and didn't press for more tests
3. I did not keep track of my medical records.
4. I never had a primary doctor.
5. I did not see a doctor often enough. It was frustrating not getting any answers.
6. I didn't share what I was going through with the people closest to me. I stayed strong and didn't ask for help.
7. I didn't ask questions.
8. I didn't inquire about my families medical history
It Gets Worse
For 3 months I could not get out of bed. Staying awake was not an option. I have never felt so helpless and afraid. Lucky for me, I had someone who cared for me enough to make doctors appointments and make sure I got there.
Within three weeks I saw three different doctors. The first doctor ordered tests and diagnosed me with headaches. The second doctor gave me a small book of prescriptions without any diagnosis. The third sent me into an ultrasound to see if there was anything wrong with my stomach. The wand slipped and the technician saw a little bean. I was pregnant! I had my diagnosis.
1. I was not pregnant for over 20 years, but I kept my mouth shut.
2. Everyday I look at my beautiful child and am grateful I did not fill my prescriptions.
The first trimester was awful. So sick. It got better as my baby grew. I regained some of my energy and all of my determination. I had a little one relying on me now and I was more afraid than ever. There was no way I could tell anyone about my hallucinations. I spoke as little as possible. Cut ties with most of my friends. Quit me job and blamed everything on being pregnant.
My baby was induced one week late and arrived healthy and beautiful. I am sure it was the most amazing experience. If only I could remember it.
Homecoming with my baby was wonderful. I am grateful that I was able to stay at home with her. My doctor prescribed me lots of rest and minimal movement. I help my little one all day and night for a month. We were mostly alone, so I didn't notice the hallucinations as much. My slurred speech and memory loss also wasn't an issue. Babies don't care if you can enunciate or if you make sense.
One day I started binge watching a series. I fell asleep on season 1, episode 1 and woke up at season 3, episode 18. It terrified me. Anything could have happened during that time and my baby was not safe. At that moment I made a decision to protect my baby. Even if that was against me. We went to the ER.
The Big News
It didn't take long for my ER doctor to determine that I was having seizures. He didn't know how many or how severe they were, but he ordered a CAT scan. It didn't take long for the results and it was a moment I will never forget.
The doctor walked into my room and went straight to the visitors chair. He sat down and put his head in his hands and let out a big sigh. After a moment he looked at me as asked, "Do you have anyone to take care of your baby."
He went on to tell me that I had a very large brain tumor and needed to go into surgery that evening. It took me a moment to absorb the news. What I should have felt was fear, sadness and maybe anxiety. My reaction was to smile. It was such a relief and I couldn't wait. My search was finally over and I wasn't crazy!
I didn't have surgery that night. The neurosurgeon wanted to schedule a consultation. It was a little disappointing at first. The idea that I could be fixed was more exciting than I could handle.
Common Brain Tumor Symptoms
- Pressure or headache near the tumor
- Sensory Changes: vision, smell, and/or hearing
- Personality, emotional and/or memory changes
- Frequent Nausea or vomiting
- Sleep problems
- Memory problems
- Focus issues
- Changes in ability to walk or perform daily activities
- Loss of balance and difficulty with fine motor skills
- Changes in judgment, including loss of initiative, sluggishness, and muscle weakness or paralysis
- Changes in speech patterns, tones, vocabulary
- Emotional outbursts
- Altered perception of touch or pressure, arm or leg weakness on 1 side of the body, or confusion with left and right sides of the body
If you are concerned about any changes you experience, please talk with your doctor.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2019 Clara Shorts
Lorna Lamon on August 21, 2019:
Such an interesting and moving recount of your journey Clara. I cannot imagine a brain tumor growing for 15-20 years and that you were so young when you started to experience symptoms. You have certainly faced many obstacles and come through so much. At least there appears to be a light at the end of the tunnel and hopefully the tumor will be removed. Such a beautiful baby Clara and so brave of you to share this journey.