What Caused My Chiari Malformation Type 1 to be "Activated":
When I went into early labor with my second son at 37 weeks, my contractions were two minutes apart, we rushed to the hospital. My doctor decided to induce me and asked if I wanted an epidural. Due to past traumatic birth experiences, I was really on the fence about getting an epidural. However, I decided to get the epidural without realizing it would alter the course of my life.
How I Received My First Diagnosis:
A few weeks later, I began physical therapy for what I assumed was back pain from giving birth. However, not only did I fail to improve, but my condition worsened and the pain increased in intensity. My spine and neck were on fire, and I had a piercing burning pain at the base of my skull. After being told that I shouldn’t be in as much pain as I was, and struggling to be heard by my spinal doctor, I advocated for myself and asked for an MRI of my neck and back. When I got my results, the doctor asked if I’d ever been diagnosed with Chiari malformation. I never heard of it, She referred me to a neurologist.
As I walked to my car in agonizing pain, I realized that this was just the beginning; now I had to make another appointment and wait even longer. feeling discouraged and lost, I did what anyone else would do without medical knowledge: research it online
What is Chiari Malformation Type 1:
Chiari Malformation Type 1 is a congenital defect in the cerebellum. The cerebellum sits at the base of the skull and when it descends lower than it should, it puts pressure on the spinal cord. This can cause a variety of symptoms, including migraines, neck pain, dizziness, nausea, and fatigue. For some people, Chiari can also cause problems with speech, swallowing, and breathing. Chiari Malformation is a spectrum disorder, which means that there is a wide range of symptoms and severity levels. It’s incurable and requires brain decompression surgery, also known as Decompressive Craniopathy. Yeah, I googled that term as well. Yikes.
My drive home was blurred by tears and full-body panic. I was diagnosed with generalized anxiety when I was very young. As well as panic disorder. As you can imagine the years of therapy and coping mechanisms went out that car window. My grounding techniques often became completely forgotten while I was going through my hardest most painful days in the first year.
Building The Right Team For Yourself When You Are Diagnosed With Chiari Malformation Type 1 Is Imperative:
Familiarity with Chiari Malformation is important when finding a team of specialists because many doctors lack knowledge about the condition. This can make it difficult for them to understand your symptoms and how to properly treat them. When you’re first diagnosed, it can be overwhelming trying to figure out who to see and what treatments to pursue. I recommend asking for recommendations from other Chiari patients, as they can often provide valuable insights. You can also search online for specialists in your area.
The Next Steps After Being Diagnosed With
Chiari Malformation Type 1:
Make your appointments and while you wait, start tracking your symptoms! It is important to keep a record of everything related to your Chiari Malformation Type 1, migraines, including symptoms, medications that are taken, what works what does not work, side effects, and visits to the emergency room.
The next step is to meet with a neurosurgeon to discuss your treatment options. Surgery is the only way to correct Chiari Malformation, and it’s important to find a surgeon who has experience performing this type of procedure. If you’re considering surgery, I recommend getting a second opinion to make sure it’s the right decision for you. Patients who have chosen surgery may provide you with crucial information. Reach out to online support groups, and ask all the questions you might have the community is amazing.
I was terrified when I learned that brain surgery could be in my future. At the time, I had an infant who was breastfeeding and a toddler to care for. My condition left no room for me to have surgery. I returned home and sobbed to my spouse. We’ve gone through a series of distressing events as a couple. Events that have had irreversible consequences for us both. So when he went into complete denial, I wasn’t shocked. He wanted a second opinion, and I gave it to him. A neurologist and a neurosurgeon were scheduled for appointments.
My first appointment was with a brilliant neurosurgeon who specialized in Chiari Malformation in my region. I found her by asking my wonderful friend in the medical field. She told me to see a neurologist so that I could begin medication and therapy, as well as to postpone any surgery until after I had gone through all the rounds of medications and treatment options. Hearing this news was a relief.
Next up was my neurologist appointment, he agreed with the neurosurgeon’s notes and diagnosis. He ordered another MRI with a contrast of my brain. To ensure that there was no “possible tumor pushing my brain down,” the doctor wanted a full picture of my brain. Another thing for me to worry about. I’m sure I convinced myself numerous times while waiting for the results that they’d show that I needed surgery or worse and that the test results would necessitate surgery or other treatments.
I was relieved to hear that my flow wasn’t disrupted and it wasn’t an emergency. The doctor then prescribed medications and injection treatments to try and get my chronic migraines under control. I had a plan and I was ready to put it into action. I was willing to try anything and everything to avoid brain surgery. I have found that medication, massage therapy, and hypnosis therapy have all helped manage my symptoms. However, every case is different and this is my personal experience.
The Difficulty of Living With Chronic Migraines:
Chronic migraines are extremely debilitating. They have a profound effect on every aspect of your life. Too often, I have to miss out on fun activities because my pain is too debilitating. I have missed out on so many special moments with my family and friends because of my migraines. When I have a migraine, my husband has to take care of all house and child care since I can’t always do it. This put a strain on our relationship. It might be difficult for family and friends to comprehend how serious your symptoms are. Setting limits for yourself and being truthful with others around you will assist you in educating others and developing your support system.
Parenting is extremely difficult when you have chronic migraines. It is hard to be present for your children when you are in so much pain. Since I know when a migraine is approaching, and I need my children to assist themselves with my supervision while I’m alone with them during an episode, I’ve instilled in them the value of being self-reliant. This is a positive I like to focus on.
It’s difficult to work when you’re in pain. My migraine attacks have caused me to miss work on several occasions, and it has been difficult to keep up with my job. I’ve had to alter my career course as a result of my migraines. This is how I became interested in website design and blogging.
How to Handle Being Diagnosed With a Chronic Illness:
It is important to find a support system when you are dealing with a chronic illness. On Facebook, I found it beneficial to join a Chiari Malformation support group. I don’t think I would have made it through the most difficult days without it. This has been an excellent method for me to interact with individuals who understand what I’m going through. I’ve also found it beneficial to keep consulting with my therapist and psychiatrist, as well. This has aided me in dealing with the emotional aspects of living with a chronic illness.
Treatments Associated With Chiari Malformation Type 1:
There is no cure for Chiari Malformation, but there are treatments that can help alleviate some of the symptoms. Surgery is an option for some people with Chiari Malformation. This can help to decompress the brain and relieve pressure on the spinal cord. Physical therapy can also help manage symptoms. It is crucial to educate yourself in postural misalignment, stretching methods, and nerve compression to comprehend various Chiari Malformation Type 1 treatment options.
After trial and error with many medications and injections every two weeks, I was starting to get breaks in between my migraines. However, with the breaks, I was still having over 20 migraine days a month. To this day I have at least one week a month that I am trapped in a migraine. I’ve had Aura Migraines, I have lost my vision temporarily, lost control over my speech and slurred my words, and my memory has taken a beating. I’ve had trouble thinking and moving and walking. I’ve ended up in the ER numerous times due to never-ending pain. The most dreadful migraine attack I ever had was a Hemiplegic Migraine. All the symptoms of a stroke presented themselves, except no actual stroke occurred. Unfortunately, the recovery process took much longer than we initially thought.
The unknown and uncertainty of it all took its toll on my mental and physical health. I had to work hard to reach old methods of handling trauma. I had fallen so far away from my inner light as a result of a series of traumatic events. Then this diagnosis. After seeing the error of my ways, I learned how to regain my light. I set out to look for the tiniest silver linings in the clouds and concentrate on gratitude. To rewire my mind. our minds are powerful tools. Once you understand the concept of retraining your brain’s processing system, you can take back control of your life.
Chiari Malformation Type 1 is a relatively unknown condition that is often misunderstood. I hope that by sharing my story, I can help raise awareness and understanding of this condition. If you have any questions or would like to share your story, please feel free to contact me. I am happy to help however I can.
If you would like to learn more about Chiari Malformation, please check out the following resources:
American Association of Neurological Surgeons
The Mayo Clinic: Chiari Malformation
The National Institute of Neurological Disorders and Stroke: Chiari Malformation Fact Sheet
