My EDS is always two steps forward and five steps back

Posted March 24, 2021

Alyssa on her wedding day leaned over and kissing her husband

Hello, my name is Alyssa Kelly, and I was formally diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) by a geneticist when I was 21. My mother knew something was wrong from the day I was born prematurely. 

From that day forward it started, I had five sets of tubes from age 6 months to 5 years.  

I started to experience constant headaches that were only relieved by a dark room and ice packs when I was 3 years old. Then, I was always sitting inches from the television and never answering my parents when my back was towards them: when I was 5 years old we found out I had cookiebite hearing loss. 

My parents then took me to a dentist and they noticed that my mouth was too small for all my baby teeth and surgically removed fifteen teeth. Once my adult teeth grew in I needed braces in third grade to fix my teeth. Despite all of this I was a very happy kid!   

I started gymnastics in third grade and I was very good at it because I was very flexible, everyone was amazed. I broke the growth plate in my left knee and ankle, and then learned I have apophysitis of both heels and was told I have arthritis as bad as an old lady in my toes. Even though gymnastics caused a lot of problems for me it was an outlet for my frustration and anxiety; it was the only constant in my life at that time.  

Despite all of the issues I had I still went to technical school for nursing and graduated with an LPN certificate. During this time, I started passing out randomly with no known cause and developed extreme fatigue/brain fog. School became extremely hard and I even failed my NCLEX the first time due to these issues, but I pushed on and studied hard and passed my test in 2018. I have been working as a nurse full time, 40 hours a week, since then.  

In 2019 I started to develop double vision, tinnitus, whooshing in my ears, extreme pressure headaches. I found out that I had intracranial hypertension and papilledema. At this point, I needed a diagnostic lumbar puncture, which was positive. At the same time, I was peeing my pants and had lots of numbness/tingling from the waist down; I was falling over a lot. I was then diagnosed with neurogenic bladder and tethered spinal cord. I went and saw a doctor in New York who detethered my spinal cord and I had a lot of issues. I got an infection, syringomyelia, CSF leak, and my incision opened up. Honestly, it was hell I became super depressed. Medical PTSD is real especially for people like us, causing lots of anxiety when we have to go back into the hospital.  

My boyfriend had to wash and dress me. But then I married my high school sweetheart at the end of 2019 and it was the most magical day of my life, we bought a house and got another dog and cat. That year was a good year symptomwise and everything was manageable. This disease is all about two steps forward five steps back. 

By the beginning of 2020, all my symptoms returned one by one. I saw another surgeon in New Jersey via Zoom call due to COVID-19; he determined I was retethered. I had to wait a whole year in order to get treated because we are in the middle of a pandemic and they had to shut down the hospital. I started working as a travel nurse in nursing homes.  

Fast forward to the beginning of 2021 the hospital reopened and my surgery for tethered spinal cord number three was February 9, 2021. I had to go by myself and no visitors were allowed and was in the hospital for six days. I became good friends with my roommate and we are still in connection. It’s all about the way you look at things. I have found trying to be very positive has helped bring out the good things that the bad brings. I also had to get a venogram and ICP bolt placement. This discovery that the intracranial hypertension was due to narrowing at the base of my right jugular vein and venous sinus stenosis.  

I will now have to go to California as he is the only surgeon who can put in a stent in someone with EDS around me and he was recommended by my surgeon. Despite everything that has happened I have an amazing support system and wonderful job and I couldn’t be more grateful. 

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