My Journey

This is the short version of my story. The full version can by found in the first several blog posts on this blog. They are in the April-July 2013 area.

I am 25 years old and just graduated from the University of Cincinnati with a masters degree in speech-language pathology. I am married to a wonderful man named Joseph and have a phenomenal service dog named Reilly.

My medical journey started when I was around 14/15 years old. The worst symptom that I had was  horrible headaches along with other debilitating neurological symptoms, such as ringing in the ears, horrible balance, blackout spells, extreme fatigue, neck pain and weakness, double/blurry vision, and many others.  I was diagnosed with a congenital brain malformation called Chiari 1 Malformation. This malformation causes the cerebellum, the back part of your brain, to descend down into the spinal canal. Luckily I was diagnosed with this very quickly. For many people with Chiari it can take years, even decades, to get an accurate diagnosis. The problem though, was how to treat the Chiari. I was scheduled for surgery in July 2010, but the surgeon ultimately canceled the surgery after deciding that the malformation was not "severe enough".

After this I was in the ER with intense abdominal pains and after months of testing we incorrectly determined this, and the rest of my gastrointestinal symptoms, to be due to IBS (irritable bowel syndrome), or so we thought for a few years at least. I was then again in the ER that December when I went into life threatening anaphylactic shock (severe allergic reaction). We still do not know what caused it, but thankfully this has not happened again.

I went on to have endoscopic sinus surgery in April of 2012 and start allergy shots in November of 2012 to try to help with my frequent sinus infections, sinus pain, ear infections, and upper respiratory infections. I have had far fewer sinus, ear, and upper respiratory infections and greatly reduced facial pain. I currently do these shots once every two weeks and they are helping tremendously! I made am able to make it through my allergy season (fall) with no issues at all.

In December of 2012 I finally had surgery for Chiari. I had the posterior fossa decompression with duraplasty. The goal of this surgery was to create more room for the cerebellum so that the flow of cerebrospinal fluid, the fluid that flows around the brain and the spinal cord, could be reestablished since the descended cerebellum blocked it. This would reduce pressure and halt the progression of neurological damage. This surgery helped slightly for a short while, but in the long run it made me feel much worse because the instability between my spine and skull, which we did not know I had at the time, was made significantly worse due to the removal of a piece of my skull during the surgery.

I was also was diagnosed with dyautonomia in February of 2013. This is when the central nervous system does not control blood pressure and heart rate adequately, particularly upon standing up, among other things. I have both POTS (postural orthostatic tachycardia syndrome) and NMH (neurally mediated hypotension). This causes my heart rate to skyrocket, into the 120’s or 130’s by simply standing up along with a dramatic blood pressure drop. This causes light-headedness, fatigue, nausea, fainting, and heart rate issues along with temperature dysregulation. This has become greatly stabilized with the use of medications, supplements, and regular IV fluids.

In May of 2013 I went to new neurologist and he diagnosed me with a connective tissue disorder called Ehler's-Danlos Syndrome. This is a condition in which the collagen (a specific protein) that makes up the connective tissue is not synthesized correctly and, therefore, is more elastic. This makes joints hyper mobile, prone to subluxation, and over all unstable. You can imagine the pain of constantly hyper extending, spraining, popping out of socket, and rolling every joint in your body. I also bruise very easily, scar poorly, and heal slowly. This condition is responsible for the torn cartilage in my knee, wrist, and hip all of which required surgery.

I then had surgery to place a central port-a-catheter into my chest at the end of November 2013. This port allows easy access to a blood supply for both blood draws and IV access. I have started on a regular dose of IV saline in order to rehydrate my body and boost my blood volume. This helps to decrease my symptoms due to the dysautonomia.  My blood pressure and heart rate have stabilized and I have  more energy and less symptoms. I can now access and deaccess my port by myself (or with the help of my husband) and manage all of my infusions independently.

I met with Dr. Rekate at The Chiari Institute in New York in December  2013. This was extremely exciting as this as they are one of the leading research and treatment institutes for Chiari and related conditions in the country. I had a cranial-cervical fusion (screwed my skull onto my spine so that it doesn't wobble anymore) during this trip. The surgery was much easier (recovery wise) than I anticipated and I am feeling so much better after having this procedure! This procedure was absolutely life altering and I am incredibly grateful that we made the hard decision to travel from Chicago to New York for this surgery! We went back about six months later in June 2014 for a tethered spinal cord release surgery. This surgery was necessary because the end of your spinal cord (in your lower back) is supposed to be free floating, but mine was attached to the spinal canal. This surgery was very easy, with the exception of a minor leak about a month after the surgery, and solved many of the issues in my lower body.

An incredibly exciting event that happened during this medical journey was the receipt of my service dog Reilly in December of 2014. Reilly is a mobility and balance service dog. He helps me to get on and off the ground, up and down stairs, out of chairs, walk up and down ramps, picks up items off of the ground for me, can get help if I need it, and can support my weight when I get dizzy or off balanced (a common occurrence!). I am so grateful to him and the organization that provided him to me. I cannot imagine my life without him and he has allowed me to become so much more independent than I was before I received him!

I was finally formally diagnosed with gastroparesis in August 2015. I failed the "traditional" medications used to treat gastroparesis, but thankfully the experts at the Cleveland Clinic were able to find non-traditional medication that has provided some relief and I was able to receive an experimental procedure called a pyloromyotomy in June 2016. In this surgery they went through my mouth and cut the muscle that acts as a sphincter at the bottom of your stomach. This compensated for my slow gastric motility and I have had great relief from my gastroparesis symptoms from this surgery.

In 2016 I developed hip pain, but we do not know how the injury occurred. Due to the Ehler's-Danlos Syndrome my joint constantly are dislocating  and sublimating (partial dislocation) and the cartilage in my hip must have been damage during one of these dislocations. I had a complete labral (cartilage) tear that required surgery to fix in May of 2016. That surgery went well and the complications have been minimal.

Overall, I am incredibly thankful for all of the answers, treatment, and support that I have received from my medical team! I have a team of doctors and therapists spread between Chicago, New York City, Cincinnati and Cleveland who are all working together in order to provide me with the very best care.  I was able to work full time, I am graduated graduate school with a degree that will allow me to get my dream job, and for the first time in nearly 8 years I feel like we have a grasp on my medical conditions and are on the way to understanding them and learning how to manage the complex mess that is my health!