Worldwide Syringomyelia & Chiari Task Force Inc.

Here are 15 things people with a diagnosis of syringomyelia want you to know: 1. Syringomyelia (SM) is a disease and it can be complicated. 2. Syringomyelia can cause moderate to severe pain and it has been described this way: “I feel as if someone beat me with a baseball bat from my head down to my toes.” – SM and moderate pain-syrinxes in c-spine, t-spine, and l-spine “I feel as if I have a vice grip around my chest and it hurts.”- SM-thoracic syrinx “My head hurts so bad, I am nauseated all of the time, and my vision is affected at times.” – SM with Intracranial Hypertension “My neck and shoulders hurt.”- SM and Cape pain “I feel like my brain is being pulled out of the back of my skull…worst headache ever!”- SM and Chiari malformation I “I have whooshing in my ears so loud it keeps me awake.” – SM and papilledema with intracranial hypertension “I drop things all of the time and my arms are weak.” – SM and cervical syrinx “My heart rate skyrockets whenever I move and I have trouble catching my breath without oxygen” – SM and autonomic dysfunction with severe tachycardia. The tachycardia was left untreated and the individual developed pulmonary hypertension with heart failure. Syrinxes in the c-spine, t-spine, and l-spine. SM, syringobulbia, and Tarlov cysts in the sacrum. 3. Syringomyelia can be “invisible” to those looking from the outside in… you cannot see the cysts inside the spinal cord, or damaged spinal cord or nerves. The truth is that Syringomyelia can cause multiple physical symptoms and men, women, and children may not always use a wheelchair or medical device. 4. Syringomyelia may require many doctors and specialists to treat it including primary care/pediatrics, neurosurgery, neuro-opthalmology, neurology, pain management, autonomic nervous system specialists, pulmonology, cardiology, gastroenterology, and many more! 5. Syringomyelia can have flares and remissions. “I may be able to go to the grocery store one day and not be able to get out of bed the next day. I am ‘paying’ for the activity from the day before… it takes great sacrifice to participate in even simple activities.” “If I shop at Walgreens I can make it to the back of the store and check out OK. If I go to Costco by the time I make it to the back of the store I cannot feel my legs. I have so much sensory damage if I am on my feet too long I lose sensation from the waist down. The feeling may return after I lie flat and rest for a few hours. I am afraid one day the feeling in my legs won’t return.” 6. The truth is that there are many patients that have syringomyelia without Chiari malformation. Both syringomyelia and Chiari malformation can cause many similar symptoms independently on their own and complications may become life threatening if ignored. 7. “Complex” may mean the treatment for one complication of syringomyelia can contradict the treatment for another. 8. “Complex” may also mean that having a cervical syrinx (syringobulbia) can affect the brainstem: the brainstem controls things we don’t have to think about like breathing, heart rate, respirations, and temperature regulation. 9. Difficult means having a thoracic syrinx and here is a clear description: “Feels like you are in a vice grip or in a medieval torture device squeezing the life out of your midsection 24/7.” 10. The truth is syrinxes large and small can cause symptoms. Even if syrinxes shrink or go away the spinal cord and spinal nerve damage caused by their presence may remain. A diagnosis of syringomyelia means care is required over the person’s lifetime: close monitoring with appropriate treatment, assessment, reassessment, and ongoing multidisciplinary care are required for the best outcome and quality of life! 11. Right now in 2017 with feedback from our community, a large number of individuals living with syringomyelia have reported difficulty locating nurses, physicians, and ancillary staff that recognize the complexity of syringomyelia worldwide. This same problem has been reported with Chiari malformation. 12. The truth is that when left untreated or without appropriate medical care syringomyelia and Chiari both could lead to life-threatening complications including brain stem compression and subsequent herniation, respiratory compromise, cardiovascular abnormalities, central and obstructive sleep apneas, and paralysis to name a few but there are more. 13. The sad truth is that men, women, and children have passed away from complications connected to both SM and Chiari. In many cases early identification of the complication could have saved a life! Ongoing medical education is critical with regard to SM and Chiari. 14. We welcome physicians, nurses, and ancillary staff that would like more information about syringomyelia and Chiari from all specialties of medicine. We always love to share across all medical disciplines and we are happy to provide resources! 15. Men, women, and children with SM and Chiari deserve excellent ongoing medical care! Learn more about syringomyelia and Chiari today or contact our nurses for an educational session. We also have free educational advocacy tools available for free download on our website: www.wstfcure.org. You may also email us at wstfcure@wstfcure.org.

We asked our community to provide feedback to identify some things they do day to day that other people don’t realize is because they have syringomyelia (SM) or Chiari malformation. We received over 80 responses! We would like to highlight some of those responses here so that the public may better understand how syringomyelia and Chiari can affect someone. Individuals who participated gave permission for their quotes to be published on The Mighty and we thank them for their participation. 1. “I look angry all the time but I’m really just in pain, nauseous, and tired.” J.H.M 2. “I drop everything and burn my hands way too often.” R.B. 3. “We have to plead to get good medical care. Men, women, and children in our communities have passed away every single year from preventable complications that are dismissed by their medical team. When I try to take materials to my doctor they will say, “Don’t believe what you read on the internet…” Well published medical journal information authored by medical professionals who serve as experts in the field is credible information! How many have to pay the price with their lives before these diseases and their complications are taken seriously across all medical disciplines?” E.A. 4. “I don’t ever plan ahead because you never know what the day is bringing you as far as pain, etc.  I don’t drive like I used to due to awful pressure headaches. I don’t do the smallest household chores anymore due to pain and discomfort. I can’t work a 40 hour week anymore and the list goes on…” L.H. 5. “SM feels like I’m living in a violent relationship… the mental and physical abuse is a constant battle of survival, pretending to be OK when deep down we are screaming for help, the tears fall only in my head. I refuse to be a victim no matter how hard the fight. I am a survivor, I’m not going to give up! I do everything in small doses because of exhaustion and pain. If I revert back to pushing my body to do things my symptoms and pain intensify 80 percent.” J.J. 6. “Having my wife do all of our physical chores and lifting. I was raised to be a gentleman and open doors for people and offer a hand if they’re struggling to carry things. Those days are over. I have to depend on my wife to carry heavy things for me which often gets looks from strangers.” K.R. 7. “I move and walk slow because I am afraid of tripping and falling. My feet are numb a lot.” S.V. 8. “I hide the pain behind a forced smile, for the benefit of those around me. I do not want pity, I want a cure. Besides the physical pain, I feel like I have experienced a death of my old self where I could run, jump, play, dance, walk normally, the right side of my body working properly, to feel awake, not constantly be monitoring my heart rate, not having bowel and urinary incontinence issues and experiencing the emotional heartbreak of the loss of my old self to this disease.” K.S. 9. “I will be having a conversation and suddenly I can’t talk. No words at all. Other times I speak gibberish, like I’m still carrying on like I was but it’s not in English.  It’s like I’m speaking Dothraki or something… super embarrassing, thanks Chiari.”  S.G. 10. “I have difficulty walking down the stairs due to balance and dizziness problems… in public venues my husband or son casually gives me their arm to help steady me when going down the stairs.” B.M.C. 11. “What I do for SM is fake it, lie, and fake it some more.” M.M. 12. “My head feels so heavy it is so hard to be vertical without massive pain and the feeling my head will implode down my spinal cord. My days are spent more in my bed due to pain that doctors will not address these days. I really miss the old me, the me that had quality pain care.” J.W.F. 13. “I limp because of nerve damage, stare and take awhile to respond because of processing issues.  People look at me like I’m crazy because I guess I must look normal or like I shouldn’t have any problems. They can’t see all of my surgery scars. They just don’t know.” A.J.P. 14. “I try to do things but my body says no. When I sit up in bed my heart rate goes from 65 to 120 and when I stand up my heart rate goes up to 180 making me feel bad because of autonomic dysfunction with syringomyelia. I  am short of breath and nauseated most of the time on medication and I have to limit my activities. Most recently I have heart damage from the high heart rates.” E. A. 15. “I feel despair from not being heard despite my cries for help at the doctor. I was diagnosed with depression when no one could figure out my rare symptoms… I am not depressed because of my illness… I am depressed because my medical team is not listening to me or taking my real physical symptoms seriously… all the while I am being dismissed while getting worse!” Anonymous 16. “The thing that people don’t understand is that I’m at home a lot lying down because I’m in so much pain. The change in barometric pressure causes such severe pain and when that occurs when I am out, I do not say anything to anyone. I just get home as soon as I can to lie down. It is the only way to reduce the pain but it never stops unfortunately.” B.F. 17. “I’m eight months pregnant with SM. People don’t realize that this is the reason I stay in bed all the time instead of doing the usual prenatal walking exercises — they scold me to stop being lazy and move around. Also, I refuse to carry or even hold babies, not because I don’t want to (on the contrary I love children)! I’m just afraid that the sudden pain and/or paralysis in my extremities — especially my arms caused by my cervical SM would act up and I would lose control of the tiny human in my embrace.” C.E. 18. “That it takes me two hours to shower, get dressed, do my hair and makeup just so I look ‘normal’ or presentable. I’d rather stay in my PJs most days.” R.S. 19. “Walk into walls, fall over and drop things constantly. I was once nearly kicked out of a grocery store because they thought I was drunk.” C.I. 20. “I now have to think ahead on what my day has in store and prepare for the amount of pain I will feel at the end of it. Some of the most defeating moments are when I have brain fog and can’t think of simple words mid-sentence.” S.H. 21. “Just chronic spinal and neck pain, every day I stand up to it. It’s enough. Add head pressures… like rubber bands around it, fatigue, muscle weakness, numbness, off on my gait, off balance, brain fog…it’s too much… it’s enough.” V.F. 22. “My balance of off so sometimes my feet sort of wander like someone who has been drinking too much! Walking in a straight line is now out of the question. My muscles have atrophied so I cannot walk far even with  my cane or even hold something with one hand. I cannot lift up my leg more than a couple of inches so tripping and falling is a danger. Dropping things is a constant so I have learned how to adapt as best I can especially when cooking.” K.K. 23. “I spend a lot of time in bed… not sleeping but just because it’s where I’m most comfortable. I do most things very slowly because of dizziness and tremors in my legs. Sometimes I don’t sleep at all and cannot function the next day. I am constantly fatigued regardless of the amount of sleep I get.” C. H. M. 24. “We have to work harder to be understood. Syringomyelia and Chiari are invisible to the outside and since we cannot carry our radiology scans around everywhere to teach we have to explain what we are feeling to almost everyone we meet… we are judged unfairly all the time… it’s exhausting!” A.A. 25. “We love it when we find physicians and nurses who take time to listen and try to learn about the symptoms and complications of these diseases because they make us feel valued and understood.” – E.A.