Where I’m At and How I Got Here

I was diagnosed with Chiari Malformation at 12 years old and had decompression surgery not long after. In high school I had recurrent symptoms. Headaches came back, dizziness, bladder spasms. We went back to my neurosurgery and had more MRI’s done. Everything looked normal, so nothing to worry about. Symptoms were occurring less frequently than before surgery and intracranial and spinal cord pressure was released. The surgery was successful. Maybe this was just a new normal for me.

After my second baby was born I began to have spells of severe dizziness. I would be able to move without falling. My mouth wouldn’t work. I would be thinking clearly but would be unable to call out for help.

We went to a neurologist who ordered an EEG to determine if I was having seizures. The EEG results looked normal. I was Diagnosed with atypical migraines. Migraines didn’t seem right to me, but again I figured everything looked normal- no big deal- maybe this is my new normal.

Over the next few years, symptoms progressed and became more pronounced.  I was exhausted all the time. I couldn’t keep my eyes open during the day. I couldn’t sleep at night. I was prescribed anti-depressants and mega-doses of vitamin D to boost my critically low levels.  I was told time and again that I just needed to rest more.

It was impossible to rest more. I barely had the energy to get up from the couch to use the bathroom. All I did was rest.

This could not be my new normal. Something was wrong in me, but I was having a hard time conveying to doctors the severity of what I was feeling.

I began to research common comorbidities of Chiari and found that many patients also suffer from Postural Orthostatic Tachycardia Syndrome (POTS) and Ehlers Danlos Syndrome (EDS). With the help of my trusty iphone and a heart monitor app I was able to conclude fairly quickly that I do have POTS. I also met the the diagnostic criteria for EDS.

Armed with my new found information and a print out packet from the Ehlers Danlos Society I went back to the doctor and explained what I had learned and what I suspected. He ignored the resources I brought and told me Ehlers Danlos Syndrome is rare and unlikely, all while commenting on the extensive stretchmarks covering my body and asking if I was nervous because my heart rate was very high.

He told me there was nothing he could do for POTS, which he agreed seemed like a possibility but didn’t see a need to test for.  He would not send me to a specialist.

Thankfully, I have a friend from church camp as a teen who also has POTS and she was able to recommend a  cardiologist to me who will see patients without a referral.

My first appointment in their office was one of the most healing moments in my life.

The intake is thorough. Question after question until they are satisfied that they have a full understanding our all of your symptoms. I was close to forty five minutes of questions and answers and them typing everything out. They placed electrodes on my chest and measured my heart rate while laying down. They placed a monitor on my finger and a blood pressure cuff on my arm and for 10 minutes I stood while they took my vitals at intervals, all the while continuing to ask how I was feeling each moment and documenting each number and symptom.

I was unprepared for how long the appointment would be. As my body felt ready to give out, the nurses brought me salty snacks and a big cup of water. Having your need known and met without having to give them voice is something really special. To be understood and VALIDATED is healing.

When the doctor finally came in the room she greeted me as a human, rather than a number to pass on the way to the end of her work day. She asked how I was, how I was feeling. About my life. My children. She held my hands in hers and noticed things about me no other doctor had and even thing I myself hadn’t noticed.

She felt my clammy  palms and frozen feet. She noticed the pink rash and little bumps that ordain my upper arms and thighs. She ran her fingers over the atrophic scarring on my forearm. She noticed my swollen toes and mottled skin from blood pooling in my legs.  She gingerly palpitated my abdomen and made sure to note that those stretch marks are from fragile tissue not excess weight gain in pregnancy.

She told me I am not crazy. It’s not in my head. I am sick. I need help. They can help me. They believe me.

After a week of nerve conduction, tilt table, echocardiogram, Valsalva Maneuver, and stress testing, I was diagnosed with POTS, Ehlers Danlos Syndrome and Mast Cell Activation Syndrome (the Trifecta).

I’ve been receiving treatment for just under a year now from my cardiologist. I still don’t feel well most days, but I do have good days!

Right now life consists of a lot of physical therapy, and getting an accurate idea of what is happening in my body so we can determine what is more important to treat next. I recently had an endoscopy/colonoscopy done to see if there is an obvious structural reason as to why I vomit so often and why there is so much bloating and pain in the lower gi tract. Apart from some discoloration most likely caused my acid damage, everything looks good in that regard,  so I foresee a gastric emptying test sometime in my future.

This weekend I have brain and spinal MRI’s to evaluate for craniocervical instability and tethered spinal cord.

Also on the list of next steps is finding and orthotist. Wish me luck!

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