Diagnosis Pt. II

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Conquer Chiari Walk Across America

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.

Dislocations

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.

Raynaud’s

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.

Idiopathic Anaphylaxis 

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.

Gastrointestinal 

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.

Atrial Fibrillation 

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.

Memory Loss

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.

Migraines

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.

Balance

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.

Nystagmus

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.

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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.

Here’s to 2020; the year of knowing.

Happy New Year.

xoxo, Cass

WIMB?

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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.

xo,

Cass

Decompressed.

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.

With much love,

Cass

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