🦓 I am joining the EDS Awareness Month Challenge – May 2020.
Day 01: Meet Me! – I am Cass! I’m 27 years young, a mama to an 1.5 year old son, Griffin, and a wife (& best friend) to @calebrobnson. I live in Austin, Texas and work in a laboratory as a clinical research assistant and have spent the past month working with microbes to test the efficacy of preservatives in cosmetic products. I graduated in 2017 from Texas Tech with a degree in biology. (Wreck’ Em). My favorite past time is Netflix and Paint. I love doing custom work to create artwork for nurseries. I am a pug and sphynx mama and my fur (& furless) children bring me so much joy. My husband and I go hard at Modern Warfare (gamer tag: motherpuggy) – we play on the weekends and evening when I have energy. My favorite things besides my babies, are Diet Coke, pad thai, sour candy, burritos, tiny houses, modern interior design, tattoos, Harry Potter (and all other geeky series) and scary movies. I have Ehler’s Danlos Syndrome along with comorbidities of Chiari Malformation (brain surgery in 2015), Mast Cell Activation Disorder, and Undiagnosed GI & autonomic issues. I live with chronic debilitating pain in my neck, back, and knees and suffer from frequent dislocations. Despite my conditions and prognosis, I still have a fighting spirit and aim at being the best mom I can be. 💄
Some fun facts about me: I’ve lost about one-hundred pounds since 2013, my husband and I met and got married within two months of knowing each other, & I grew up as a military brat and lived in several different places including Cuba!
If you haven’t seen Netflix’s Diagnosis by now, you’re definitely missing out! My husband and I started watching it a few months back and we instantly were hooked. For years I have been classified as a medical mystery. So many different doctors told me: “it is in your head” or “it’s just a muscle sprain” and the occasionally “I honestly don’t know what we’re looking at.” I had shingles at seven (rare at that age) which confused a lot of medical personnel, but this was nothing that was to come.
Throughout my childhood I was seemingly healthy. I had chronic nosebleeds most summers, my ankles rolled so many times I lost feeling in them, and my knee caps started dislocating around the age of 12, but other than those issues I was pretty healthy. I had my tonsils and adenoids removed around the age of eight for chronic inflammation and I had ear tubes put in as a baby because of ear infections. Other than being overweight I looked and acted like a normal child.
It started with my ankles. From the time I could first remember I often rolled and twisted my ankles. I had such instability in my ankles that my ankle became numb from how many time I rolled them. Then fast forward to 2003. I did gymnastics and was always super flexible. I was at a K-Mart reaching up for an Easter Basket when I experienced my first knee dislocation. I’ve never experience such pain in my life. Unfortunately many more dislocations in both my knees and hips would follow.
Around sixteen my hands and feet started turning blue especially in cold environments or stressful situations. I went to the ER once for “diabetic” like symptoms in my feet (they were blue and numb) and was discharged with a migraine. My primary care physician (PCP) diagnosed me with Raynaud’s Syndrome and I was told to try to limit my extremities to cold temperatures. I bought some special gloves for when the temperature dropped, but we went forward not knowing this was a clue to the puzzle.
Around the age of twenty-two, I started having major issues. It began with an allergy problem. I would have anaphylactic reactions out of now where and to foods I have had multiple times with no problems. I lived in fear as I was terrified that whatever I ate could cause my throat to close. I had one emergency room visit where they administered epinephrine and one allergy clinic emergency where they administered it as well.
I had extensive allergy testing done and thought I had something called mass cell activation disorder. Based upon a blood study the allergy specialist said that I have higher amount of basal cells or the cells that cause a reaction to allergen. I kept Benadryl and my epi-pen on me at all times. Despite testing several allergens, no food could be pin pointed as a trigger and I was thought to be allergic to some unknown spices.
Fast forward a few more years I had a skin and bone marrow biopsy done after I went to see a dermatologist for urticaria and allergic reactions. My skin basically overreacts to stimuli. I was diagnosed with idiopathic anaphylaxis. My bone marrow biopsy came back normal, so they ruled mastocytosis out, yet I am still having allergic reactions. I was told by one doctor that I have irritable bowel syndrome and maybe that was causing these reactions, but since becoming pregnant in January 2018, I have gone into a bit of remission.
I started having gastro problems in 2014 (around 22 years of age). I had chronic diarrhea and a lot of nausea with vomiting. I lost a lot of weight unintentionally because I was so sick that summer. I had a colonoscopy done and all that was reported was inflammation. I am picky about what I eat because I am afraid of the outcome. I started cutting out heavy sugars, fats, and spicy foods. I later went on to have such bad abdominal cramping that it caused me to almost faint. I had my gallbladder taken out at seventeen from rapid weight loss and from cutting out fats from my diet that caused gallstones, so I knew it wasn’t a gallbladder issue. My PCP prescribed dicyclomine for stomach cramping and diagnosed me with what he though was irritable bowel syndrome. Another doctor I saw said he thought I had diverticulitis because of the extreme pain I was in. I remember driving to the hospital and then changing my mind and pulling over to ride the pain.
While I was ongoing my allergy and gastrointestinal issues in fall of 2014, I stood up and immediately felt faint. I went to the bathroom and I looked white as a sheet. I felt clammy and my heart felt like it was palpitating out of control.
I had previous “attacks” where my heart would beat so fast for no reason. I went to the hospital once when I was sixteen for it and they ruled it as an anxiety attack, although I disagreed at the time. I know anxiety and I was watching a movie in a hotel room complete relaxed at the time.
I felt beyond sick. I collapsed to the ground and told my boyfriend at the time I needed to go the emergency room. I felt like I might die. I began feeling nauseated and I knew it was serious. Upon arriving I told them I was having chest problems. I thought maybe it was a heart attack. I was already crying because I could feel my heart. It pounded. It felt like it would explode. They did an EKG right away and called the cardiologist on call. They said it was atrial fibrillation. The doctor had never seen someone my age with it. They tried administering drugs to get my heart back in rhythm but to no avail. I consulted with my dad (a nurse) and we agreed I had to be cardioverted back. Basically my heart need to be shocked. They put me to sleep with an anesthetic and I woke up not long after with a pain in my chest but a normal heartbeat.
I had a couple more episodes after this one but no where as severe. I was tested for POTS because of the problems I had feeling faint upon standing and I had almost passed out several time while using the toilet. Despite matching on a lot of the symptoms the test came back negative.
Muscle Pain & Weakness
This has been the most persistent symptom of them all. I have pain every day in my back and neck. I thought when I had my operation (posterior fossa decompression) that I would be better, but it’s much worse. It started in the summer of 2015. My neck and back would put me in tears it hurt so bad. My PCP at the time told me it was a muscle sprain. I tried muscle relaxers to no improvement. Doctor after doctor told me the same thing. Must be a sprain. I finally received a MRI and my doctor failed to mention that the results stated I had a cerebellar tonsil herniation. She told me that it shouldn’t affect me and basically it’s all in my head, so I fired her immediately and went to a neurosurgeon that specialized in Chiari Malformation (after doing extensive research about what cerebellar tonsil herniation meant). Combined with the other symptoms I will further talk about in this post, with the herniated tonsils was too much to “be in my head.” I continue to have major cervical instability pain that makes everyday a challenge for me, but I have great days and I have bad days and keep progressing to hopefully a manageable pain future.
In that summer of 2015 I began having severe short term memory loss. I used to have such an amazing memory and was quick to recall facts, names, etc., but now I was constantly arguing with my boyfriend at the time about things I didn’t remember. Where did I put my keys? Did I take my medicine? I couldn’t remember doing the most basic of tasks. It was terrifying. How would you feel if you couldn’t remember a good portion of your actions? I started having panic attacks because of what was happening.
Slurred Speech & Aphasia
In addition to the memory issues, my speech began to slur. I wasn’t even aware of the issue until I called my dad and he asked if I was intoxicated. I began to have difficulty speaking my thoughts. A sort of aphasia, I guess you could call it. I often confused words or had a difficult struggle in getting out my thoughts. Going from a scholar to this was extremely defeating. I was in what was supposed to be my senior year of college when this hit. It took a toll on my grades and my self-esteem. I was terrified. As we were formulating ideas (before the Chiari results of the MRI), we were thinking possible brain tumor. Was this the beginning of the end for me? I began to mourn the person I once was. I went from running 5Ks for fun to being a lifeless shell of my former self.
The migraine were extreme. I’m talking full on nausea, ocular issues, light sensitivity. I basically lied in a dark room praying for it to end. I couldn’t open my eyes. The pain shot throughout my head and felt as if it were going to explode. I began to see a neurologist. I tried several anti-migraine medications: zomig, amitriptyline, rizatriptan, and others. The migraine were almost daily. I would have to miss class and basically laid there in agony. Too sick to eat, in too much pain to move. I currently am going through a remission of this symptom ever since getting pregnant with my son. It’s been a miracle from suffering so frequently to having them so rarely and I hope it’s something that will continue this trend.
My balance was beginning to become terrifying. I would suddenly feel as if I would fall over when walking normally. I was on high alert as I was afraid I may fall at any moment. It got to be so bad I’d use a walker to make sure I didn’t fall right before my surgery. I felt like this was an all time low in my health. Here I was. I was supposed to be a healthy, happy twenty-three-year-old and I was using a walker to get to my college classes. I was humiliated, but more so terrified for what was to come.
Another symptom that appeared mysteriously was found at my eye exam. I ended up having vertical nystagmus that had previously not been seen. I later found out that it was a symptom of Chiari Malformation that had not been caught before. It was very slight, but sure enough my eyes made uncontrolled repetitive movements up and down. Nystagmus can indicate central nervous disease, so I was on high alert after I was told I had it.
With all of these symptoms coming in different waves, I knew it was time. I needed answers. I am tired; tired of the doctors juggling different diagnoses and medicines back and forth. It’s physically and mentally exhausting having to explain myself over and over and people not understanding half of what I go through; Not understanding why I can’t make it to their event and why it’s hard for me to confirm plans and how hard it is for me to put on a mask, pretending everything is okay. I’m tired of answering “I’m fine” or “I’m okay” because explaining that my chronic illness is eating away at me everyday is too long and difficult to mention. I’m tired guys.
I decided to email the doctor from Diagnosis and she led me to the online Facebook support group that aims at trying to diagnose you. And… I got my answer. All this time of not knowing and I’m fairly certain it’s correct and I mean that I am 90% certain. Ehler’s Danlos Syndrome (EDS) with Mast Cell Activation Disorder and Chiari Malformation, both side conditions of EDS. In the past I thought I might have this, but I was told there was no test for it and that is incorrect. I have all of the matching identifiers of this connective tissue disorder.
I couldn’t believe it. I had heard about EDS being in the spoonie community, but I had never really pinpointed it as the cause of my many issues. I took the Beighton Scale Test and I am a 8/9! I am making an appointment soon with a geneticist to have a blood test done and to determine what the odds would be of carrying on my Hypermobile EDS on to my son and future children. I can’t help, but feel comforted that I have a label now. Maybe the doctors will finally take my pain seriously with this diagnosis.
My future is uncertain, but I strive to be one thing: happy.
Another day, another attack. I started this past Wednesday thinking it would be an average, uneventful day, as most “hump days” are; Mid-way through my cell biology laboratory, I soon realized that this would not be the case. My episode initiated with me having an extremely difficult time concentrating: I tried my hardest to stay on task, but simply could not focus. I read the same line again and again, but couldn’t comprehend its meaning. My chin began to feel numb with a dull burning feeling (paresthesia) that quickly spread to my entire face and head. It’s relatable to the feeling I get when my foot “falls asleep.”
I went to the bathroom to examine myself, thinking it could possibly be an allergic reaction (my face sometimes feels hot and numb-ish during a reaction), but my face looked normal with some minor flushing. I became confused and tried to fight the urge to cry as anxiety flooded over me. I returned to class, asking my teacher how much time remained on our experiments. He told me that they would take the whole alotted time because we were fitting two experiments into one lab session. I expressed to him that I wasn’t feeling good and needed to make a phone call; luckily my teacher has a little knowlede about my health problems and therefore is most understanding with my condition and needing to take breaks.
I called my dad, a nurse of over twenty years of experience, and explained to him what was going on. I began to cry stating that I didn’t feel right and explaining my reoccurring symptoms. I began to feel faint. My dad thought it could be a possible allergic reaction or an anxiety attack, but I didn’t feel panicked. My breathing and pulse seemed too slow (to me), feeling as if I wasn’t receiving enough blood to my head. I splashed water on my face, took deep breaths, and went back into the laboratory to grab a snack and water from my bag. At this point I had red splotches on my face and chest from being stressed (my mast cell activation disorder causes me to break out during stressful situations and hormonal changes).
I apparently looked unwell as I was greeted with a face of concern. I felt like I was going to pass out and told my instructor. He instantly became worried and left the lab with me, asking me to sit down while he called the principal of our campus. He asked me if I needed an ambulance and I told him no, although now I wish I had just gone to the emergency room, given the insight I have now. He didn’t know what to do and was told to call campus police so that they could make sure I was okay and help escort me. I had called my mom and asked her to come get me, although I was hesitant because I didn’t know if this was going to pass soon or not and I hate to miss out on classes and labs. The police were most kind; they got my information, talked to my mom on the phone, giving her directions, and they escorted me to the lower level of the building, carrying my bags. I continued to have a hard time concentrating and I was taking awhile to answer easy questions, as my thoughts slowly gathered. I began having an intense pain at the base of my skull, almost as if I had a headache or migraine in that location, and prayed that this episode would pass soon.
My mom was finally able to pick me up and drop me off at her house (I live an hour and a half away) making sure I had lunch, a drink, and comfort before heading back to work. I continued to feel strange until I fell asleep; when I awoke an hour later I felt better, but pretty drowsy and fatigued, exhausted from this ordeal. I fell back asleep for another couple of hours until my mom came home from work and drove me back up to the campus to retrieve my car and drive home. This attack was similar to my episode a couple of weeks ago, except my heart felt like it was beaming and operating too slowly, instead of rapidly. I am puzzled as to what the source of these episodes is.
I wrote a message to my primary doctor the following morning describing my strange and frightening day. He returned my phone call a couple hours later, expressing the upmost concern. Firstly, after I explained everything, he has become increasingly convinced these attacks are related to some type of heart arrhythmia or malfunction. I have contacted cardiology and have an appointment to be fitted to wear a heart monitor for a couple of weeks in hopes of “catching” one of these episodes. The hope is that we can identify what’s triggering these symptoms I’m feeling and how we can manage them. He then proceeded to inform me that my stool sample results came back and indicated a high level of lymphocytes (white blood cells) in my stool with negative cultures, an indication of many different things that need to be addressed urgently. He advised me to schedule a gastrointerogy appointment as soon as possible to have some more testing.
It’s been a hectic couple of weeks with the girls (Mavis & Eleven) and myself being sick. I’m praying that things improve and that I can get some answers to this challenging puzzle! I additionally met with my new allergy specialist on Thursday afernoon, who ordered an array of blood tests to see what my mast cell levels looked like and if I have a spice-related allergens. He scheduled me to return to have a skin test performed that indicates whether I have an allergy to certain foods. He wants to test for mastocytosis and create a more efficient treatment plan (clearly what I’m doing currently is NOT working). In addition to my appointment with cardiology next week, I also meet with my new pain management specialist with hopes of managing my increasing nerve pain.
I was so excited to receive my box on Monday night full of wonderful spoon approved goods! As promised I made this cute little display to show off what’s in my Be Kind To One Another Box from Cass! This box of gifts made its way all the way from Australia and includes:
I have tried a few products already including the mineral blush, Brazilian Beauty body lotion, Argan Oil, lip balm, and Face Cream and all of it is so wonderful. I felt like I million bucks last night pampering in my goodies. I can’t wait to try out the rest and I am so grateful for being nominated and chosen for one of these amazing boxes.
I have a picture in the side bar that links right to Cass’s Youcaring page for donations if you are interested.
Well I’ve been a busy busy busy bee! First of all I started back to school and that has occupied all my free time. I’m taking five classes for my last fall semester in college: Organic Chemistry, Exercise Physiology, Biology Seminar, Pathophysiology, and Abnormal Psychology. So far I’m doing relatively well for such a full load, but chemistry will always be my down fall. I have to focus and buckle down to get ahead.
Other news, I got engaged! The man of my dreams got down on one knee on October 7th and I say yes without hesitation. Caleb is my best friend and my soulmate. I knew pretty quickly that he was the one for me. If you haven’t found your significant other yet, let me tell you, love at first sight is possible because it happened for us. I can’t write enough to explain my absolute admiration for this man. His soul, his humor, his smile, his eyes, his everything… I love it. He’s the reason I wake up with a smile and go to bed with sweet dreams. Having a long distance relationship is difficult, but it has been well worth it and I will be moving mid October to join his side.
I’m so entirely excited for our upcoming plans: house decorating, furniture shopping, wedding plans! I’m ready to spend the rest of my life with him! Caleb, Mavis, and Oliver, my little family is perfect! I’ve never been so happy in my life. That explains my absence! My goals are to survive this semester and prep for my last one in the spring, plan an amazing wedding with my fiancé, get in shape with my honey for our big day, get married to Caleb in front of God, my family, and friends, and graduate with my bachelors in Biology and a minor health professions.
As far as my spoonie situation, things have gotten worse. I had a pain management appointment back in late August where I received six large injections in my back with the hopes of relieving my pain. I was numb with a pinching for less than 24 hours. My back has been excruciating. I went to the doctors and almost passed out in the clinic from the severe pain. I received a renewal on my pain medication (luckily, because I was petrified I would not get refill), a muscle relaxer prescription, and a shot of toridol. My mother had to pick me up and I slept as soon as I got home for a solid two or three hours until Mavis demanded my attention. I’m becoming less hopeful about my situation with my back, but hopefully I’ll be receiving better medical care here in the near future. I’m constantly praying that my back will become manageable and that I can live without being dependent on pain meds. Thank you to all that continue to follow my difficult but lovely journey. To all my spoonies, don’t give up. You do have a purpose; if I have one (I want to be a great wife), you surely do too.
Follow me on snapchat (@cassandrasheab), Pinterest (@cassrobnson), instagram (@cassrobnson) for more of Caleb’s, Cass’s, and Mavis’s adventures!
Rollercoaster. That’s what my life has become. So many ups and downs. I had an amazing trip to Galveston. I stayed with my best friend, Dianne for a glorious week by the beach! The water was amazing and the weather, so pleasant! I took Mavis along with me and she got to enjoy her very first beach list and could not get enough. She officially loves sand: eating it, tossing it, and covering her bitty body with it! She also is a professional seashell collector and bird chaser. Galveston is such a dog friendly area and I was imagining my future along the coast with my curly-tailed babe. I collected so many sea shells and enjoyed hours at a time on the shore.
Along with the much needed and wonderful getaway, I started talking to a certain someone. At first it was friendly hellos and cute little questionnaires. What started as an interesting chat became so much more. I have found my soulmate. I know this seems sudden and completely out of the blue, but I think when you know, you know and well, I know, at least I’m fairly certain. This man treats me so incredibly and accepts me for all that I am. I’m not an easy package and I know this. How do I say, “Hey, I have a chronic illness and bunch of issues, and I’m sorry, but this is who I am”, and expect another to say “okay, I want you regardless.” Not an easy task to take on and it makes opening up hard, but I did and to my surprise, I was accepted. Chivalry is not dead, I know this to be true now. Caleb treats me with the upmost respect and I feel at peace around him. I think we just connected right away and we have so much in common. I think all my praying and hoping has finally paid off. I’m passionate about our relationship. I think it’s easy to say that this is the one for me. C is already my best friend and I’m not one that easily trusts others, but yet, it’s so natural for me to trust him.
With joy comes pain. My pain has been unbearable lately. The past three days I have basically been bed ridden with severe back pain, debating whether or not to make he emergency room trip. I constantly worry that this is what my life will become: Days at a time suffering. Tomorrow I have a pain clinic appointment to hopefully get this under control. I also got news that I cannot be genetically tested through my health network because they don’t do that type of testing. I basically have to research on my own to get my diagnoses, but I just don’t have the energy or time right now and it’s just a label, isn’t it? If this pain doesn’t subside, I don’t know what I’ll do. I need tomorrow to come so I can see if this pain relief will come.
In other bad news, my finances are quickly diminishing. My parents are divorcing and so their finances are suffering too. I don’t have enough money for classes or even enough to live on hardly. I’m so stressed. I don’t know if I will be able to graduate this May after all, if I don’t have enough money for it. I wish I could change so many things, so many stupid decisions. I have blown through my money. I’m the typical dumb young person. I thought I was ahead by having a savings account, but that can only go so far. I finally was able to make a payment while awaiting my loan to go through, thanks to my dad
One last thing! I’m hosting a fundraiser to help support my living and medical bills. Bravelets are wonderful little bracelets in all different styles that say ‘brave’ to support a cause. They come in a number of different colors, but the featured are some of my favorites: glacier blue, pink, and silver. I hope you love them as much as I do!
So a lot, and I mean a lot, has happened over the past two to three weeks. My life has decided to completely fall apart leaving me in many severed pieces. First off, I’m newly single. Almost a two-year relationship over. I’m a little broken inside, but I will move on. I will find the man of my dreams, who will treat me with the respect and love I deserve. So I moved in with my mom. Lots of boxes, lots of arguing, lots of pain (physical and emotional). My life continues to shred: my computer crapped out, I quit my job due to pain and school, and I had a visit with two doctors, who basically are predicting I will be in pain for the rest of my life. Real peachy, right? So I’m a broken pathetic mess. My hair is now blonde and I’d like to go icy blonde. After your heart is torn into pieces, all you can think about is changing your physical appearance and yourself, so that’s what I’m doing. I have more posts planned, but with no computer and my lovely life, things are a bit delayed. All I can say is in the Fall Out’s likeness, please stand by.
Some of my past readers may have noticed that I “revamped” my blog and change a few thing around, but that doesn’t change the fact that this my personal blog and I use it to talk about my struggles with severe depression and anxiety, my Chiari Malformation diagnosis. I think most people are terrified that they are alone and so if this can give my readers a sense of unification or understanding, then my job is done.
So many things have occurred since I last chimed in. First of all, I have a “new” position at the same job as a dog bather. I basically wash and deshed (which is a number of hair removing techniques), brush teeth, clean ears, brush out, remove mats, and give pawdicures to lovely (mostly, although some are plain assholes) little and HUGE doggies. I like this position better because I don’t have to put as much stress on my neck and back as I did as a playroom attendant. I also feel like my job does have purpose. I got to make an adoptee Dalmatian mix all pretty in hopes of getting adopted and a freshly adopted Chow mix a deshed and brush after being severely neglected. My shift hours are also amazing for my chronic pain. I work 10 am – 3:30/4pm, which gives me enough time to sleep in and prepare myself for the shift and also allows me to have time to relax and unwind when I get home. I usually come home and lay on my heat pad for a couple hours. I work Monday-Friday, which is great, as well, because I get the weekend off to spend with my mom, but also having a schedule is good for my depression and anxiety.
I have slacked off a bit in Mav’s training, but we have come LEAPS and BOUNDS since my last post. I had a severe major depression episode and was completely upset after having some really hard personal news hit. I was shaking and wishing that I was not here. I finally let Mavis out and she immediately came over and laid on my upper arm by my face and just stayed still. I didn’t teach this to her at all, but she knew that her mom needed her help. She did so amazing and I felt like all my training had been justified. I also took her with me to a psychologist appointment and she did wonderful! She remembered her blanket commands and sat on her blanket and ignored the door opening! She had little slip ups in the hour long appointment: barking at a plant, falling asleep, and being a little restless. She tooted and snored in the room and my therapist couldn’t help but laugh.
I’ve been trying to cope recently with my chronic pain and anxiety. Today was very difficult in terms of pain. The back of my head had a weird pressure feeling right where my cerebral tonsils are (where my surgical incision is). I also had bad neck and back pain and weird muscle cramping. I thought about asking to go home early, but stuck it out. I got home and used my heat pad for about two hours straight. Tomorrow I am heading to Lubbock for my cousin’s wedding and will be taking my best little pug with me. She won’t be going to the actual wedding because she isn’t that ready to be in public. I get very anxious around event like these. A lot of people make me extremely anxious and then also being judged around family is a worrisome of mine. Hopefully all goes well.
Three and a half days in the hospital, five IV pokes, and an arterial line: I had brain surgery and survived. We headed to Houston on Tuesday, December 8th to give us plenty of time to plan for the bumpy road ahead, staying the night with my Aunt Babette and my Uncle Daniel in Katy, about a 45 minute trip down the road. The day before surgery I could hardly eat. I was so nervous and had absolutely no appetite. I got a call around four pm and was told to be at the hospital bright and early at six in the morning. I knew this would be a hard time for all of us because it meant us leaving around 4 am the morning of and hardly no sleep the night before. I took an ambien the night before in order to drift off to sleep and before I knew it, it was 3:30 am, meaning I had to get up and shower with surgical scrub again and wake my mother up. Once we finally made it to the hospital, the staff made no hesitation in getting me changed into their specialized “Bair Paws” gowns that allows hot or cold air to flow through the gown to keep the patient at a desired temperature. Once I was all dressed and had socks on, the nurse asked if I had used the surgical scrub everywhere. I told her I had not, that I only used it on the back of my head and left thigh. Embarrassment pursued as they made me throw away my gown, change my linen, and rewash with their specialized hot rags. Eventually I got settled down into my new gown and was categorized as a fall risk, so I got new socks and a fancy yellow wrist band. The nurse went over all my information several times to make sure they got every single thing wrong with me: my cell mast activation disorder, tegaderm allergy, my four previous surgeries, etc. etc. etc. I had my IV put in and met with the anesthesiologist. She told me she would monitor me under anesthesia and make sure that all my vitals were fine. She informed me that another IV would be put in while I was under and that I would be given something to relax before they wheeled me back. Amazingly, I was not nervous. I was ready. I met with Doctor Parrish and the operating room nurse before they wheeled me off. I said goodbye to my mom, dad, Aunt Cindy, and boyfriend after they gave me the drugs and took me to the operating room. I arrived to the sacred cold sterile room and the anesthesiologist told me she was going to put me to sleep now. I told her “okay,” and on we proceeded.
I woke up four hours later in the Post Anesthesia Care Unit (PACU) with a smile on my face. I asked nurse Julia, who was awesome at what she does, if I was alive. She laughed and told me that was the first time she had ever heard that one. I couldn’t believe that I made it through and I was awake and feeling relatively great. My mom and my boyfriend were the first to see me with a smile on my face (top left circle) and I told them I loved them and that I was completely alright. Nurse Julia was wonderful and got me about nine different cups of water (thank goodness I had a catheter in) and ice chips as they had no beds in the intensive care unit opened. My dad and Aunt Cindy snuck back in the PACU to see me. My dad previously worked in PACU and as an OR nurse for many, many years, so it felt quite natural to invade any hospital’s “PERSONNEL ONLY” signs and see me, since the lady letting visitors in rudely told my mom that my dad and aunt could not see me. Nurse Julia was able to give me a lot of pain medicines because I began feeling it badly. The shearing pain of my incision in my neck. The cut-muscles, burning. The sting. My leg where my dura patch was taken from began hurting and I was wailing in pain, but content because she was so nice and helping me with my requests. I kept thanking her and telling her she was so nice and that I would leave feedback for her. I got her whole name because I wanted to tell the head people that she was so wonderful. It means so much when people are nice to you, especially when recovering from neurosurgery. I was in the PACU for several hours until a bed opened in ICU and off I went.
My first night there was rough, I started feeling the affects and my tears got the best of me. My throat was on fire and I was told I couldn’t drink any more water (after drinking about 15 cups) because it could mess up my sodium levels (my dad told me this was BS. He said I was young person, not some seventy-year-old). I was not allowed to have as many meds as I did in PACU because apparently that is the “trial” period where they determine which drugs work best for you. The night I arrived I had a young nurse named Brittany helping me and she was teaching a student. I had no idea what the student’s name was, all I knew is she was not well informed about any medications I was on and believe me, trying to explain to the nurse-in-training that you need your prescribed muscle relaxer, but she has no inclination to look in the record at what you’re taking or what you needed, is beyond frustrating. I told her I needed my muscle relaxer about ten times and she began shooting off anti-anxiety meds: klonipin? xanax? NO, I NEED MY MUSCLE RELAXER MY SURGON ORDERED, NOT AN ANTI-ANXIETY. A blank look. Ok, let me check. She said dilauded about fifty times in confusion as to what muscle relaxer I needed, again WRONG medication CLASS. She asked do you know what you took? I said “Don’t you have that in the chart?” I mean I hate to be rude, but really. I am in ICU, INTENSIVE CARE, and you are not knowledgeable enough to check the chart and see what my Doctor had prescribed or what pain medicines I received before in PACU that worked. I JUST HAD BRAIN SURGERY. I began crying and paging the front to please send in Brittany. I explained to Brittany what I needed and she took care of it right away. I was given morphine (which I had a mild reaction to top bottom right photo of burning and inflammation [they dosed me with benadryl and boom out like a light], but who cares, it was well worth it and I hid it from the neuroward staff every time, in fear they would say I couldn’t have anymore) and I fell asleep and was woken up around 2am for a CT scan. I was in and out the whole night so I don’t even recall waking up from the CT scan. I recall them taking me back to my room and telling me my scan looked good and that I just had air built up behind my incision. I drifted off to sleep and awoke to a new nurse, Kevin. Kevin was so awesome. I told him about the difficulties I had the night before and he got the nursing manager to take down my comments and concerns. Kevin took out my arterial line, catheter, extra I.V., and got me walking with the help of a wonderful physical therapist. He even hooked me up with delicious hot chocolate and told me I am one of the few patients who admit the like the hot cocoa. I loved it and drank probably four cups in the morning’s span!
After I was up and walking, they determined I was functioning properly and I was moved to the neuroward on the same floor, but down the hall. I spent two more nights in the regular hospital recovering. I could not get my pain management under control for quite awhile and was nauseated the first two days, vomiting my meals up, soon after consumption. My boyfriend stayed with me in the hospital every night, insuring I had the proper treatment throughout the night and to provide company, of course. He laid in the bed with me as we watched movies together, a.k.a he watched and I fell asleep about ten-twenty minutes later. My baby helped me through so much. Anytime I needed to go to the bathroom he was there helping me to the toilet. My mother also helped me enormously in the hospital and took me for outings to the lobby to see the Christmas tree and lights and the gift shop. I would either fall asleep or get nauseated and we would return about ten minutes later to my room. She ensured I had a meal three times a day, despite my lack of interest, and called the nurse when I needed pain medicine. She showered me and walked me around with my walker several times. My dad and Aunt Cindy only were there the first day in ICU and said goodbye once I made it to the main ward. I was happy that they both came out to make sure I was well taken care of and made it through my surgery. My dad later returned to drive me from the hospital.
After I left the hospital we stayed at a hotel for one day to make sure that I was out of trouble. I had continued problems: several fits of vomiting and a hard time with pain management. I later found out that this surgery (brain surgery) is one of the most painful recoveries out of almost all surgeries. My mom brought me Starbucks Frappucinos, the un-caffeinated Vanilla Bean, to keep me happy and we even had Chinese food delivered to our room! My mom was so thoughtful to provide all these arrangements for my boyfriend and I.
I now have been home since last Sunday, almost a week, and my mother has taken care of me. Through my tears and pain she has been by my side. I gave my boyfriend some “time off” to catch up on sleep, but he visits me daily. I slept over at my house one night and my “ambien hallucinations” were too much for him to handle so I decided to stay with my mother until Monday. I am getting stronger a bit more each day and going longer without my pain medication and muscle relaxers, but it has been extremely hard. I luckily have not had an infection or any severe problems yet. I have noticed a few sensations that worried me, but I’m giving it time until I see Dr. Parrish in January. I had half of my staples removed yesterday thanks to my boyfriend (one had to be removed on Wednesday because it was literally pinching me and burning). I will have the rest removed (again by my boyfriend who learned via youtube and thanks to Dr. Parrish’s (have to go on vacation) staple remover kit) on this upcoming Wednesday, which will mark a full two weeks! The pain is still there, though, and I can’t believe it’s been less than two weeks. I have been using ice packs and heat pads on my neck and leg and have been relying heavily on my mother to help me. I am, however, feeling better. My pain in my back is finally relieved, my hands and feet have feeling to them, and my spirits are uplifted. I hope to be closer to God and that I can heal through this, work out my other disorders and be tested, and that I can become healthier and happier.
I had a MRI on Sunday as ordered by my neurosurgeon, Dr. Parrish and they found two tumors on my thoracic spine (T7 and T9). These are cavernous hemangioma, benign collection of blood vessels, that are pressing against my spinal cord.A cavernoma is a blood filled raspberry. As it bleeds it causes damage to various parts of the nerves. When they bleed they reattach and get bigger. If it is inside the cord it does permanent damage as it damages the spinal cord.
Hemangioma occurs most often in the thoracic spine. These Tumours affect adults and are known to be progressive vascular masses that can cause vertebral collapse and paraparesis (slight paralysis). -back.com
Treatment depends on the severity. I have had extreme lower back pain, numbness, and tingling. With this being said, I do not know how to differentiate what is being caused by the chiari malformation and what is being caused by the tumors. They can either try medication, embolization (Stop blood flow), use radiation therapy (which I do not want), or surgically remove the tumors. This is not related to Chiari at all and having them on the spine is extremely rare. I will most likely have to have these removed in addition to my decompression surgery
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