8/13/2017 0 Comments my story..sto-ry {an account of past events in someone's life or in the evolution of something} I wanted to share My story, my medical story. I keep typing this out, deleting, retyping, and deleting again.. I've been thinking about this post for months now, I think about what to type, I think about what I want to share, and what I want people to take away from my story. I think, and I think, and I think I've just been overthinking the whole thing. That my story should just be shared, plain and simple. But, that's the thing, it's not plain and simple. Preparing to write this, has brought up so many emotions, good and bad. Thinking about everything I've gone through, medically, has been so hard. It is a lot. I've been through a lot. But somehow I'm still here to tell the story.. I'm still here to let people know who I am, and what I've been through... So I guess I'll just start from the beginning.. I was born with Severe Congenital Scoliosis. I had a cute little crooked head, and at 6 months old, my family started to notice that I sat very crooked.. My mom took me in to see a pediatrician, he recommended that they rush me up to Primary Children's Hospital. After doing scans, they found that I had a severe curve in my Lumbar Spine. Starting at 6 months old I had an X-Ray and an specialist appointment, once a year. I remember being fitted for my first hard shell back brace, I was 2 years old. I went to this specialist every year, from 6 months until I was 12 years old, same specialist, same X-rays.. Every. Year. I remember hating those appointments. Not because of the usual reasons, but in elementary school I wanted the {Perfect Attendance} award, and I knew, I knew, I would never get it, because every year i would go to this appointment.. It sounds silly, but when I was young, it made me so sad that I couldn't be "normal"... I always thought these appointments were ridiculous because, I was convinced there was NOTHING wrong with me.. I remember saying, "so what? my back is a little crooked, it is NOT a big deal." "I don't even need to go to the appointment this time, I'm sure my back hasn't gotten worse." When I was 2 or 3 years old, I got my first hard shell back brace, I remember hating it.. The doctor tried to cheer me up by helping me put stickers on it, and placing hot pink Velcro straps.. My mom was always very good about having me wear it, but still, it didn't touch my curve. But, because I wasn't in pain, they just wanted to watch me with X-Rays until it got worse. The brace didn't change anything because my curve was way too low. My curve started in my sacrum and lumbar spine, then shot up, where I also have a small curvature in my thoracic spine.. I played soccer from 5 years old to 12 years old, I played until I couldn't play anymore, I loved it. I also took dance, I actually would wear my dance clothes underneath my soccer uniform so I could leave my games early to go to dance.. I also loved to ride my bike, play dodge ball, kick ball, and touch football, I loved long hikes and running. It seemed like if I wasn't on the trampoline I was doing something else outside. If I wasn't playing outside, I was playing a dance game on the x-box or running around with my Aunt's dogs.. I loved my life, I was a very happy kid.. When I turned 12, it allll changed.. I can remember the exact day I had my first episode of really bad back pain.. I decided to go on a walk with my "best friend" at the time. We walked from my house to the local High School, which was about 10 miles round trip.. I remember, on the way home, my back started to REALLY hurt, I got home and cried because it was hurting so bad, it was the first time I had ever felt back pain, and it was bad.. After this, everything went down hill, I was taking Advil everyday, I slowly quit everything. First, soccer, then dance, and everything else followed. It was very, very, hard for me to quit the things I loved most.. The pain never went away after that. Literally. When the pain began, we went to see the Pediatric Orthopedic Specialist, who had done my X-Ray appointments every year. He told my mom and I, that my curve had grown, but that he wasn't concerned. He said, if I ever did need surgery, it would be for cosmetic purposes only.. And BOY was he SO wrong!!! I would in fact need surgery, and I would need a lot of it.. After that appointment, we decided to seek help elsewhere. My mom works at our local hospital, she actually worked on the ortho surgery unit, so she knew of a surgeon who actually specialized in Scoliosis. He had an amazing record, he went to school in Wisconsin to specialize in Scoliosis, all of his patients adored him. When he looked at my scans, he immediately knew that he needed to surgically help me. My Lumbar Spine, was rubbing against my Hip Bone, I was walking crooked, I was in so much pain.. My pain started when I was 12, in November 2011 I started seeing this surgeon, In April 2012, I had my very first surgery.. Because my surgeon was an adult doctor he had to go to the hospital board and fight for me, fight for me to get the operation that I so desperately needed, by this time my curve was 90-100* .. Before I was able to have my surgery I had to go through months of physical therapy, and I started taking stronger pain medication, daily. I was having horrible, daily back pain.. I was being checked out of school almost daily, because of pain. When I started this medical journey I was in 7th/8th grade, and my school didn't offer any sort of help or support.. It was basically "good luck, sorry".. I still continued to try to go to school, but, I just kept falling further behind with everything going on, PT, surgery, procedures, and appointments. The school offered an online course, after spending 6hrs+ a day, the school informed me that those credits didn't count, so that's when I was done with them, I had to drop out. I'm now, planning to take my GED. I went through some struggles with all of this, not just medically, but family struggles, school, my mental health.. It was all a mess.. After I had my 1st surgery, my "best friend" since 3rd grade, told me she couldn't hang out with me anymore, that I wasn't "normal" anymore.. She came to see me when I got home from my 1st surgery, and when I had fallen asleep, she didn't want to come back to see me.. When I never got better, we weren't friends anymore.. Our group of friends from school, they didn't want to hang out with me either.. I stopped having friends, I wasn't able to sit through church anymore.. I couldn't do anything. And it sort of broke me, I didn't know how to handle it, I was so young and it was Soo not fair.. No teen should have to live through this sort of pain. I struggled with it for a long time, "why me?", "why can't I be (normal)?", "This is all my fault, I pushed myself too hard." I remember when I first started having pain, when I took that 10 mile walk, I thought that it was my fault, that my walk damaged me.. That I deserved this.. I distinctly remember not wanting to be sad anymore, I was in pain, and I held my head up high for most of the time, but after a few years, I started to get sad and hopeless. Who deserved to live in this much pain? with no doctor in sight to help? My siblings struggled with me getting attention.. Even though it wasn't the kind of attention you would want, they struggled. People were visiting me, grieving for me, praying for me, bringing me gifts, and I never understood why my siblings were jealous. I was going through something impossible for a 12/14 year old, and they were upset I was being given, {get well} gifts. It's not like we were celebrating my birthday everyday of the year, I was in a lot of pain, and going through a lot of surgeries.. I wasn't celebrating, I was in pain.. Most of my gifts? I didn't even use or eat because I was in too much pain after surgery.. If I could trade it all to be able to be pain free, I would in a heart beat. I will never understand the hurtful words they have said to me because of my medical situation, I will never understand how they could think I'm spoiled, I will never understand why they were jealous of the attention I was getting.. But it's not for me to understand I suppose, I was really hurt by them.. When my body was hurting me physically, they were hurting me emotionally, they were hurting my heart, when I needed them the most.. They've told me that they hate me.. This life wasn't something I imagined for myself, these relationships weren't something I ever wanted for me or my siblings.. But, it is, what it is.. I never meant to pull my mom away from them for my surgeries, or so she could rush me to the ER, or so she could lay by me in my bed while I screamed in pain.. I never meant for any of it to happen, it just did. So, now that you have a bit of a back story, I will get to the medical part of it all. I did physical therapy for a long time before I had my first Spinal Fusion Surgery. A long time, being like 6 Months to 1 year. With physical therapy, we also tried different types of soft back braces, we also tried different types of massage and other therapies, like, injections. My 1st surgeon had to fight like hell with the surgical board to be able to operate on me, because, I was 13 and he performed surgeries at an Adult Hospital.. So after a year of fighting, and doing physical therapy, we were approved for surgery. April 19, 2012. By the time surgery came around, I was 14. At that age, I had no idea what surgery was like, what recovery was like, what being in the hospital was like, I had no idea what it was like to go under Anesthesia. Being that young, I remember being SO scared to die. I remember constantly crying before I had my first surgery, I didn't want to die. I wasn't ready. Of course my information of all things surgery came from television. So on Grey's Anatomy, people flat line on the OR table all of the time, and little 14 year old me didn't want to die on the table, leaving my mother and family behind. I was having bad dreams about dying in surgery, I was constantly, and I mean constantly praying to God that I would be okay, that I wouldn't flat line. In my religion, worthy Men are ordained to lay their hands upon peoples heads, and give them a blessing; give them a comforting message from God.. I received so many blessings before my surgery. I remember a couple of days before the big operation, I received a blessing from my uncle, my uncle who is so special to me and always comforts me. He said I would be okay, and that was it. I was ready. The day before, early afternoon, my dad came over to our house, my moms house. And he cooked me Shrimp and Steak, and we had ice cream. I had to stop eating at 7pm that night, so we had an early dinner. After visiting, I took a shower, my mom painted my toe nails, and we put my hair in braids. We had to be to the hospital at 3am, I didn't get much sleep. I remember the drive there, I remember everything. I don't know if that is a good thing or a bad thing, but I remember it all. I had a sick feeling in the pit of my stomach; like anyone does who is getting ready to have surgery. We met my dad at the hospital, went up to the second floor, and went straight to the surgical check-in and waiting area. I was holding my stuffed giraffe. (It has been a tradition, that for every surgery and procedure my mom has bought me a stuffed giraffe.) We checked in, filled out the paperwork, and then sat in those uncomfortable waiting room chairs. We didn't wait very long before they took me back. When they called my name, they brought me through a door, where they put me on a hospital bed, and had me change into a gown. After the gown was on they came to start an IV, I was scared, I hadn't had one before, I squeezed my moms hand so hard, and I cried. Back then I thought needles were the worst things ever, the further I've gone into my journey, the more I've realized that needles are the least of my worries. After the gown was on, and the needle was in, I got a hug and a kiss from both my mom and my dad. They put medication in my IV and I don't remember being wheeled back, the next thing I know, I was awake. I was awake, in excruciatingly bad pain. The reason I had to have the surgery, was because by that time my curve had progressed horribly. My spine was rubbing against my left hip bone, becoming arthritic. So, I went from a VERY crooked spine, to a much less crooked spine. I remember the surgeon telling my mom and I that he did everything he could to pull my spine straight, he said he tugged and he had another surgeon pushing on it at the same time, but my curve was VERY aggressive and VERY hard to move. At the time, we believed this man was the best one for the job, his techniques were a bit outdated but he was very confident and he was very well trained with scoliosis. In the surgery he used 2 rods that drilled into my hip bones, and wires that went around my vertebrae. I was in the hospital for close to 2 weeks, I was in incomprehensible pain. I was so nauseated, and vomiting a lot. I was crying a lot. I was completely miserable. I remember about day 3, the PT, my surgeon, and my nurses, came in my room to put me in this awful chair that I had to sit in. It was completely flat, they grabbed my sheet and moved me over to it, when they got me laid down on it, they raised my back up and my feet down. I SCREAMED. SO LOUD. I can still remember that chair to this day. Not even joking, for a few months after my surgery I had bad dreams about that chair. He had me sit in it and I remember getting so sweaty and pale and throwing up. It was bad. But once we were able to get me moving, I started walking the halls, I was doing good. I started my period in the hospital and I was so embarrassed. (now its not a big deal, but back then, omg.) Luckily, my mom worked as a CNA at this hospital so she was able to help me use the restroom and get clothes on, etc. They delivered my hard shell, back brace that I would have to wear for the next 11 months to my hospital room. After that, we were able to go home, and boy was I so excited that I got to go home. It was the toughest car trip I'd been on and home was only 20 minutes away. Once home, recovery was going okay, except for the vomiting, it was killing my back. I remember throwing up a few meals, and doing too many laps around the house that I threw up. We were VERY hopeful that this surgery had done it, but it hadn't. Not even close. I was still in a lot of pain, and I was still miserable. So we made the hard decision to have a 2nd surgery. November 16, 2012. It was a fairly easy operation, all they did was take out my rods, because we thought that was the source of my pain.. This hospital stay was only 2, maybe, 3 days long.. It was very easy. Nothing too eventful happened. After this surgery I returned to PT and started wearing a soft back brace. But I was still in too much pain. We started going to the Pain Management Clinic, yes, at the young age of 14 I started going to pain management. I was the youngest one in the clinic. Ever. We did injections in my SI joints, we did trigger point injections, we did injections in between vertebrae. Pretty much any kind of injection you can imagine, we tried. We tried pain creams, we tried muscle relaxers, everything. When I had my first surgery they put me on pain medication, and now, still going to the same clinic, the same doctor regulates my pain medication. We went back to PT, I tried to will myself to get better, but it just doesn't work that way. At this point, my surgeon told me he couldn't do anymore to help me, that I needed to learn to live with the pain. So we decided to get a second opinion, we went to our Children's Hospital, there we met an AMAZING surgeon. He looked at my scans and could not believe that the last surgeon actually put wire around each of my vertebrae. It was such an old technique that didn't work. He suggested that we have another surgery, it didn't look like my spine had fused at all, and those wires were going to do more harm than good. So we did just that, July 23, 2013. With this surgery they took out the old wires (they were individually wrapped around each vertebrae), they (re)fused all of it, and they put in screws and rods. Screws and rods are what should have happened the very first time. That surgery came so quickly.. We drove to our Children's Hospital, which was 4 hours away from our house. We spent the night, played in town a little bit, we went shopping and out to dinner.. And the next morning, early morning, we went to the hospital. They put me in a gown, put in an IV, put me to sleep, it felt like 5 minutes and I was awake again.. When I woke up I was in EXTREME pain.. Not only from the actual surgery, but I had a strange NEW pain.. Shooting pain down my right leg, that started at my hip and went all the way down my leg, it was horrible.. One of the students that worked under the surgeon, came in for rounds and checked my reflexes, they push up on the bottom of your foot, left foot was totally fine, but he pushed up on my right foot... and I SCREAMED.. I screamed louder than I ever have in my life, the doctor came in, and he said it was just normal pain from the surgery.. Not only was I having this weird new pain, but when the surgeon took each of the wire off of my vertebrae he nicked my spinal cored, and fluid was leaking out, so I had to lay totally flat for 24 hours so that I didn't get a spinal headache.. Over the next few days while I was in the hospital, they upped my pain meds, they got me up and walking (barely), I was functional enough that they felt comfortable sending me home.. So they did just that, the drive home was long, especially having the new incision, the new hardware.. But we made it home, and I started the recovery process. I remember trying SO hard with recovery, I think I was trying to WILL myself to heal.. I was trying so hard to MAKE this surgery work. I wanted this to be my very last surgery.. But unfortunately, it didn't work.. From July to December I was having this horrible, shooting pain, that nobody could explain.. I went to the ER several times, we called my surgeon several times, we had several scans.. Not one person could figure it out. Not only could they not figure it out, my surgeon put me on high dose of Gabapentin, moved out of state and stopped returning our calls.. Over the months I could barely walk or move without screaming or crying.. It was the hardest thing I had ever been through.. So we took a chance and went back to our Children's Hospital, we found an AMAZING surgeon who was willing to open me up and do exploratory surgery to see what was going on.. As much pain as I was in I looked physically ill, I seriously looked so, so sick.. And nobody could figure it out.. On December 11, 2013, I would have my 4th back surgery.. Again, my mom took me shopping, we went to the hospital where they drew blood, and then we went back to our room and slept, we went to the hospital really early in the morning.. They had me go into an exam room where I cleansed my body with antibacterial wipes, and then they had a General Practitioner come in and do a quick wellness exam. After this, They put me in a gown and I sat on a hospital bed for probably 30 minutes, the anesthesiologist came and talked to me. The surgeon also came in and talked to me, we had a very serious conversation and he wanted to make sure that I knew that he might not find anything.. That there was a very real chance that this pain was just going to be apart of my life, for the rest of my life.. Hearing those words broke my heart (even though I had heard them many times, in the previous months), how was I supposed to live with this pain forever? It scared me, I could barely move without screaming and crying, most days I couldn't make it from my bedroom to the toilet, and back, without needing help. How was this pain going to be apart of my life? It just was not going to work for me. So knowing full well he may not find anything, it was time for surgery. My Mom and I hugged, she cried, and they wheeled me back to the OR. This time I wanted to actually see the OR, every other surgery I always insisted that I be put out before they wheeled me back, because I was so nervous, but this time I wanted to actually see it.. It looks exactly like movies and TV shows. All of the machines and equipment are the same. Even the whole "count backwards from 10", while the anesthesia kicks in, was the same. It was interesting to see and experience, I hadn't ever seen the OR before I was always petrified, I'm not sure why, but getting to actually see the room and the process was cool. Once we got back I chatted with the nurses, and very quickly they put meds in my IV and had me count backwards, while they put the mask on me.. Every time I've had surgery, it feels like a 5 minute nap and then I wake up.. My mom has reassured me that it is in fact, NOT 5 minutes.. On the waiting end of things, it feels like 10 hours.. I've never been on the waiting end, but my Mom has, every. Single. Time. My mom has been waiting for me.. She's amazing.. I woke up from this surgery feeling instant relief, and even better, THEY FOUND WHAT WAS CAUSING MY PAIN. I cried tears of relief, I KNEW something was wrong. I just KNEW it was not normal to be in THAT much pain. So, when they told me that they found something and that it was serious, I was relieved, but kind of sad at the same time. I was scared that they weren't going to find anything, I knew what chronic pain felt like, but this was MUCH, MUCH more extreme, than regular back pain.. {graphic description ahead} My surgeon explained the procedure to me. He made the initial incision, and when he peeled back my skin there were Nerves stuck to the scar tissue. He took out half of my hardware, and when taking it out, there were Nerves wrapped around screws, and there were screws going directly through the Nerves. NO WONDER MY PAIN WAS SO EXTREMELY HORRIBLE. For MONTHS I was told by multiple doctors and professionals that this was normal and they could not see anything abnormal, I did physical therapy and injections, and NOTHING touched this pain. For months I cried, and I limped. It was a pain like nothing before. From my right hip down to my knee and sometimes my foot, it was like stabbing, shooting, horrible, horrible pain. I have no clue how to even begin to describe it. After this surgery it got better, much better. But, again, My Nerves are damaged forever, and they always will be. Some days the Nerve pain is worse than others, but I'll deal with this for the rest of my life, I will take Gabapentin 800mg 3x a day, because the surgeon didn't fix me properly, and the other numerous doctors couldn't find a problem. I don't hold a grudge though, honestly, I feel like everything happens for a reason. Though, this reason, I'm not quite sure of yet. After this 4th surgery, things got better, but they still weren't 100%. I wanted to feel better, it wasn't even my hip that was bothering me the most, it was my upper T-Spine. After so many scans, so many tests, SO many ER visits and Specialist's appointments, I'm "fine". Although my Orthopedic surgeon, told me that the way my spine is fused causes everything else to offset, one leg is longer, my body is tilted to the side, it's so bad.. So, he told me it would be best to unfuse parts of my fusion, and then fuse parts of my upper spine to center everything out. So this was the plan, because my case is "complex" we came up with this plan.. My doctor gave me a couple of months to think about this surgery, about the risks and implications of another spinal surgery. So, I did, I thought about everything. I thought about how much pain I was in, that I needed to take a chance, it was worth it just to TRY to get out of pain. When I went back to discuss pre-op, it was just after my 18th birthday.. And the doctor, he acted like he NEVER said ANY of that. He acted as if he didn't tell me he would do the surgery.. He acted as if he didn't explain to me how complex my case was. So, I left that pre-op appointment being advised to go to a counselor, because it was depression, because my mind was making up this pain. And just 3 months prior to my 18th birthday, at a different appointment, he was telling me it was real and complex, that he had a plan. I don't even NEED/WANT a fix, I just WANT relief. To say I left that appointment disappointed would be an extreme understatement. I left feeling insane, and hurt. Like I was crazy, I was making it all up. The appointment, the pain, the surgical plan, everything. While I was very grateful for the things he had done to help me, I was extremely hurt by the way he treated me, his bedside manner just wasn't okay.. He told me "I was in a car accident when I was in med school, had to have a bunch of surgeries, and got really depressed, and once I figured out that I wasn't going to get better until I WANTED to get better, things changed for me. You seem like a genuinely sad person to me, if you changed your attitude about things, I think it would help your pain just that much more." I understand what he was trying to say. I get it, the mind is a powerful thing. I also know for a fact that being happy makes you feel good. I KNNNOOOWWW all that. What he does NOT know: >A good attitude is NOT going to make this extreme pain go away< >He got better, HE HEALED from his accident. That will never happen with me.< >I live in pain. every. single. day. EVERY DAY; you should be concerned if I'm NOT sad.< >I know what my body is telling me. It hurts. Something is wrong.< >Don't YOU DARE try to make me feel like I don't know what I'm talking about when it comes to my physical pain and my emotional pain.< >I HURT. I'm sad because I PHYSICALLY HURT. If I didn't hurt, I wouldn't be sad.< There is just soooo much I could say on this topic - especially with this doctor. The most frustrating part for me is that, EVERY ONE OF MY DOCTORS, knows that I am Complex, They can look at scans and see exactly why I'm in pain, They have repeatedly (2 different doctors, who have never spoken to each other.) told me how they would go about operating on my back, what they would need to do in a surgery like that. Even my physical therapist has explained to me that my body is going to have a lot of issues because of the way they fused me, that it needs to be corrected. But they are all so scared to touch me, so I get to live like this. As they like to tell me "Learn to live with the pain, and it won't be so bad." After this whole fiasco of "I'm going to operate, I just need you to think about it and understand before I do" to "What are you talking about? I never said I would operate?!?!" My mom and I decided to get a second opinion. After Months and Months of extreme pain we decided to see an Adult Spine Surgeon. Who basically told me to "quit crying" and my back wouldn't hurt so bad. After being defeated by him, I started getting extremely bad headaches, and neck pain. My right side was going numb, right arm and leg. Occasionally my left side would go numb as well, but usually it was just the right side.
It was getting difficult for me to walk because my legs were numb and 'heavy'.. Over the course of about 6 or 8 months, I went back to my orthopedic doctor at the Children's Hospital, he told me that the headaches were from the depression, and once I learned how to be happy they would subside. Any counselor I have ever been to have always told me the same thing "if you're sad because you hurt so much physically, that's understandable, If my body hurt that bad I would feel pretty sad and defeated too. It's normal." So, I never thought much of it, I was sad because my physical pain and symptoms are REAL. After leaving the appointment with my orthopedic doctor, I again, felt so defeated. I decided I wasn't going to try to find anyone to help me, I was going to learn how to live this way. Until, I ended up in the ER because It was hard for me to walk, I was in extreme pain. I probably went to the ER 3 or 4 times for the same issue, until finally, they did scans. They called in the neurosurgeon who was on call. They saw something. Somebody, FINALLY saw SOMETHING. When we were in the hospital room, in the late hours of the night, waiting for the neurosurgeon, I had feelings of sadness, fear, and relief, all at the same time. I was finally getting an answer, but I was terrified as to what this answer was going to be, what it would entail. Why they had to bring in the neurosurgeon to explain the answer they had found? After waiting, (I mostly slept through the wait), the Neurosurgeon came in and explained to me my new diagnoses.. I was diagnosed with Complex Chiari Malformation, and Klippel-Feil Syndrome. Both being very rare. Chiari Malformation - A condition in which brain tissue extends into the spinal canal, present at birth. It occurs when part of the skull is abnormally small or misshapen. They added the complex on to the diagnosis for me, because it was sooo complicated. Not only was my skull too small and my brain tissue in my spinal canal, but another part of my skull was not formed properly, making it complicated for me to have the surgery, there was a chance that the surgery would make things worse, and my brain tissue would fall even further than it was, it was dangerous. You're typically diagnosed at birth.. But nobody saw mine until I was 18, and I started showing signs and symptoms. But even the symptoms I was presenting with were rare, numbness, pain, weakness, headaches, etc.. Along with the Complex Chiari Malformation diagnosis, I was diagnosed with the very rare Klippel - Feil Syndrome. Klippel-Feil Syndrome basically means that 2 or more of the vertebrae in my neck were fused naturally from birth. In my case, 4 of the vertebrae in my neck were fused! Typical age to diagnose, is at birth, they didn't notice this until I was 18. The nickname for this syndrome is "Short Neck Syndrome", because the bones are fused, my neck is kind of smashed down and I don't have much of a neck! This Neurosurgeon at our local hospital, wanted us to go back to our Children's Hospital to see the Neurosurgeon there because he was supposed to be absolutely amazing. And boy, was he! Still one of my favorite doctors I've had! He looked at the scans, a Neurosurgeon who is known for his knowledge on Chiari Malformation, and said "wow, you are really complex" he explained the situation to us, went a little more in depth with the diagnosis and we scheduled surgery for 10 days later! It was definitely all kind of a blur, because after MONTHS of nobody believing me, somebody FINALLY found SOMETHING. AND he was going to do something about it! While I was definitely grateful and feeling blessed for the answers, I was scared out of my mind to have brain surgery. Major brain surgery. When you get a scary brain diagnosis, definitely DO NOT google ANY of it! Not pictures, surgery, scars, ANYTHING. It will scare the shit out of you. Before I had the surgery, (this is going to sound vain), I was scared they were going to shave all of my hair off. When I read about it on the internet, most surgeons shave it all, some surgeons partially shave it, and some don't shave anything (ew. super unsanitary). Now that I've had the surgery, I wished I would have just shaved it, or at least cut my hair really short. When I went into surgery my hair went almost down to my waist, it was so long! When I woke up from surgery they had shaved the area that they opened up, and GLUED my hair up out of the way, 3 days later when I was able to shower; boy did it feel good, because that glue was soo uncomfortable. Recovery in the hospital was a bit rough, the first day was good.. The next 2 days after that, I vomited: HARD. With an incision on the back of your head, you can imagine how painful throwing up would be. But overall, it was okay.. My nurses were amazing, my surgeon was amazing, and I couldn't be more grateful. My recovery at home, it went well, as well as we could expect. They wouldn't discharge me from the hospital until my headaches and my throwing up toned down a bit.. I think I was in the hospital 5 days. Once I got home, I was doing well, I had a bit of a set back and had to be put back on steroids to reduce swelling because my headaches were getting really bad again.. But as a whole, recovery at home went well. About 1 week into recovery, I went to the salon and had allll of my long hair cut off! My hair was driving me nuts, itchy & heavy & pulling on my incision.. It was 6 months after my surgery, I went to see my Neurosurgeon, and was totally blind sided by new diagnoses. I remember sitting down on the exam table I had my hands palm down on the table, sort of holding myself up, but my fingers bent really far, my doctor noticed me doing this and said "I think you have Ehlers-Danlos syndrome, this could be why you're always in so much pain." He continued to give my mom and I, a brief description of what Ehlers-Danlos syndrome was. He gave us the name of the ONLY Ehlers-Danlos or (EDS) specialist in Utah, where I live. When we went to see him, he diagnosed me with a rare form of Ehlers-Danlos Syndrome, he also diagnosed me with Postural-Orthostatic Tachycardia Syndrome aka (POTS), & Dysautonomia. When he started talking to my mom and I about EDS & POTS, all of my symptoms, pains, and deformities fit, it all started coming together and making sense. It is very bittersweet to get answers. Sweet - because it all starts to make sense. Bitter - because nobody wants diseases or deformities. I remember I used to read through instagram and think "wow, it would be so horrible to have EDS and POTS" and I'd never really done my own research to see if it was something I could have.. My heart just ached for the people enduring such hard Illnesses... Then I was diagnosed... and it all made sense.. and now I think my heart has been aching for myself, it's hard to explain the feelings you go through when being chronically ill.. but they're not easy.. So after being formally diagnosed, I started going back to physical therapy, doing Iron and Saline infusions weekly, and taking heart medications, adrenal medications, and a bunch of other medications.. But for the most part I can keep my POTS under control, I still have Flare Ups, but usually I can manage it! I think I can say I've done much better since meeting my POTS/EDS specialist. I'm definitely not 100% or even 70% functional, but I am better.. EDS can cause a whole list of issues, but one that I've dealt with recently is my sinuses. Because EDS effects the make up of collagen in your body, it effected the way my sinuses developed, I had a bone spur shaved down, I also had all of my sinuses cleaned out and opened up, I've dealt with sinus and ear infections my entire life, but never had an answer as to why, until I was diagnosed with EDS. I deal with Chronic Conditions, Extreme Chronic Pain in my back, and all over chronic pain. I've had 6 Surgeries, and too many scans and procedures to count. I have stomach problems and nausea. I take 15+ pills a day, I have to stay active everyday, for the rest of my life. I have to decide what I'm going to do with my day, everyday, I have to decide what to spend my energy on. For example, I wake up, I can spend energy curling my hair OR just put it in a ponytail. I can spend energy making myself breakfast or just grab a yogurt. I can spend energy showering, I can spend energy going out to lunch, I can spend energy walking the dogs, I can spend energy doing my laundry, etc etc. Everything takes and uses energy, and I have to DECIDE what I want to do, when the average person can just do what they want, they can do all of it if they want to and that blows my mind. To have enough strength and pain free moments to do everything that you want? It's fascinating. Its not an easy life to live, most days I'm fed up. But personally, I believe that everything happens for a reason, I believe I have this life, and this story for a reason.. Even if that reason is just to share my journey and experiences with everybody.. Thank You for Reading, Supporting, and Sharing my Story. It means more to me then you will ever know. Thank You. Below I've added some pictures from this incredibly long and hard journey.
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AuthorMy name is Madison, I have quite a few rare diseases and chronic illnesses. Archives
July 2019
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