Hope for Erika
$17,987 of $60,000 goal
So I’m not really sure where to even begin. I have been having a lot of complications lately aside from my progressive connective tissue disease Ehlers Danlos such as severe back pain, headaches causing loss of vision due to pressure, nausea & vomiting, black outs, weakness of muscles, episodes of paralysis/numbness in muscles, hearing loss in one ear, central nervous system malfunctioning which controls the nerves that effects digestive function, sight, sensation, regulates blood flow and blood pressure, heart function etc. I was admitted into hospital/ICU because of being stuck in atrial defib with a heart rate of 140 while resting, fluctuating from 80 bpm to 130 to 140 to as high as 180 bpm. While being in hospital I had an episode of sudden paralysis, with non-epileptic seizures the doctors decided to do an MRI which came back as “normal” as well as a spinal tap. After the spinal tap (keeping in mind that I have had 2 spinal taps before) when I woke up I had a severe headache, and could not stop vomiting this continued for three days non stop, with all of my other spinal taps I never had a problem I was completely fine after previous ones but not this one. I was moved to another hospital, in which I was supposed to receive better care and have a team of neurologists on stand by. I Got switched to another hospital at 1am I was and my parents were very worried because I was very nauseas were concerned that when I got there that things wouldn’t be set up because of previous experiences with hospitals…when I got there I had to wait 10 hours until I received any of my medications, (I was told and reassured by one of the doctors at the first hospital that everything will be ready and transferred when I got there but that was not the case) my dad decided to stay the night and sleep in the chair beside me because I was in such bad shape vomiting, severe headache. Two days went by without seeing any doctors, and when I finally saw the doctors they simply told me that there nothing was wrong with me and that it was a Dysautonomia flare up, a condition in which I have where the nervous system malfunctions. I had severe headaches, nausea, had lost over 30 pounds in just a month and a half, and a resting heart rate of 140 and extremely low blood pressure 80/50 but this was “normal.” They eventually put me in a step down unit I didn’t see doctors for days at a time, and a nurse would come in maybe three times a day. This what really broke me, the doctors finally came in one day and told me all of my symptoms were mental, and they were sending in a psychiatrist. It felt like 3 years ago all over again, it was an exact repeat of what happened before. The next day a psychiatrist came in my room with her residents and she stated that my pain was all in my head in those exact words, that my connective tissue disease does not cause chronic pain, fatigue etc and its not real, she precisely stated “your illness is in your head” even though I have been diagnosed by a McMaster geneticists, and a top Ehlers Danlos geneticists in the United States, also diagnosed with Postural orthostatic tachycardia, Dysautonomia, and a clotting disorder but I really shouldn’t have to explain myself or my condition to someone to who clearly has no knowledge of, I literally felt like I was getting bullied, a 40 something year old woman standing there telling me my disease is in my head after I have suffered and suffer from it for all these years, tears rolled down my face, and I told her to leave, not only were the doctors completely insensitive and had a great lack of knowledge of my disease but the nurses were also mean and told me “you need to take your psychological needs else where.” Three days later I was sent home with severe headaches, vomiting, pain, 30 pounds of weight loss, weakness etc. My parents decided it was time to call the famous neurosurgeon who saved my life in 2012 when my artery was compressed, and brain stem was sliding down my spine to make an appointment, Appt was set for May 6th. My symptoms started to worsen from severe headaches to episodes of headaches that impaired my vision greatly and would not be able to see for periods of time, nausea constantly, chest pain, breathing problems, and circulation issues. Within the last three weeks I have several episodes a day of extreme muscle weakness and tremors, severe back pain and pain down legs, burning in my feet and hands, episodes of hearing loss in one ear, heaviness of one side of body, sky high heart rate, mixed up speech, and began to not be able to stand or walk for longer than a couple of minutes without severe pain and weakness, tenderness in spine, changing from hot to cold in the matter of minutes, black outs etc on top of the pain that is typical with my Ehlers Danlos. I was relatively stable in regards to my disease for 2 and a half years and thought that my Ehlers was just progressing further this was not the case. I went to Maryland to see my neurosurgeon, had an upright MRI and a urodynamics test, this was to test for tethered cord when going to see him I thought I would just need a small surgery for tethered cord, but my neurosurgeon noticed an abnormality in my thoracic spine just by feeling and looking it, he sent me to get an MRI on my tspine specifically because I only had gotten a cervical & lumbar MRI done. I was going to go home and try a back brace to see if support aided in my symptoms, but when I had the brace placed on I noticed something strange, when my back was straightened my whole right arm went purple and I got very dizzy, the straightening of my back caused some sort of circulation issue, afterwards I went back to the hotel and laid down while experiencing some strange symptoms such as dull pressure in back of head and cramping in the front left side of my neck. In the morning I went for my thoracic spine MRI and the technician noticed something strange he also noticed that when in certain positions my blood flow was cut off in my right arm, and was very concerned and made a notation of this to the radiologist, and neurosurgeon. We were on our way home after the MRI as we were going to get a call from the neurosurgeon on some point later on in the week, we were 3 hours into the drive when me and my mom and my boyfriend got a call from my dad saying that Dr. H (my neurosurgeon) had left an urgent message on the phone, this was only 3 hours after I had gotten the MRI and he had a very low tone in his voice, so from what I heard so far this cant be good, and its not ..my thoracic spine from t4-t9 is completely deteriorated, with fractures of the facets, and extreme herniations & dislocations compressing not only my nerves but my spinal cord, heart, and lungs, he said the surgery needs to be done within the next week especially with my rapid progressing symptoms, compression on the organs and spinal cord. When I came down I expected a small tethered cord surgery but this is currently not the case. I will be having a fusion & stabilization from t4 to t9, decompression, & open reduction, I will also have to have a bone graft used to fuse the spine which will be bone taken from my hip, as my rib was already taken for my cranial spinal fusion in 2012, this operation will be approximately 5 hours long. I find it extremely sad and disgusting that doctors (not all but most) in Canada, in my own country told me there was nothing wrong with me, and it was “in my head.” You think they would of learned from the previous mistakes they made when my connective tissue disease caused severe issues with my spine, brain, and artery and they told me it was “normal” before. Leaving this issue to long has caused further nerve damage, and compression on vital organs and my spinal cord. Now some of you may ask why does it have to be done in the states? Put yourself in my shoes would you want someone to perform a complex, extensive operation on your spine that is compressing organs, arteries, and spinal cord when they completely missed this obvious problem on your MRI, not once but TWICE and dismissed your symptoms as “mental issues” and have little to no knowledge of your complex disease. We are not sure of the over all costs yet, and did not want to make this public until all family members, and close friends were notified, as we literally found out 2 days ago that I would need this operation with very little notice or time to prepare but will give updates as much as I, or my parents can. My operation is Tuesday May 19th, I would not trust anybody other than Dr. H with my spine as he has done over 500 neurosurgery’s on Ehlers Danlos patients, and has a large amount of experience as complications can arise with my connective tissue disorder.
PS. Sorry if this is poorly written, my brains not exactly functioning at optimum level, and this was very difficult to write as i did not even know where to begin....