What is Syringomyelia? - Living with Chronic Pain
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- Опубліковано 11 лип 2024
- I have been living with Idiopathic Syringomyelia for my entire life and it took me many years to get diagnosed. This is not a disease/illness for the faint of heart as they say. Truthfully we all make the best of a bad situation. In this video I wanted to talk about what syringomyelia is, the symptoms, and all round general living with chronic illness.
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Just want to send a thank you for posting these videos on syringomyelia. I also have idiopathic syringomyelia. I was diagnosed about 5 years ago, but have had it my whole life they believe. It seems we're probably of a similar age. It made me tear up a bit to see myself in you, and to know there is someone else my age who knows what it feels like to experience this illness. I've struggled with people not understanding the illness and not understanding how I could be in pain when I look perfectly healthy from a bystander's perspective. We have very similar symptoms. My symptoms happen on both sides, but also tend to happen more on my left than my right. So I understand the hemispherical piece you speak of. Sometimes I'll limp on my left side when my symptoms are really flaring up. But for the most part, I do my best to stay active and most people can't see that I'm limited, but I feel pain a lot, and I do restrict myself in ways people don't see in order to protect my spinal cord. There are times when I feel amazing and forget I have the condition, but then other times it's very clear that I lead a different life than most people because of the illness. Anyway, you know all of this, I'm sure. My point is - thank you. Sincerely. For reaching out to others with syringomyelia and sharing what has worked for you, and for spreading the word to those who may not know syringomyelia exists. You're a gem. If you ever feel like connecting, I'm around - across the world, but around lol
I'm so glad to hear that you were able to find something good in these videos. It is tough to make them consistently so I just do what I can when I feel like I am up to it. You are the first person to have a similar experience that has contacted me. I honestly just wanted to share some information about it and soon realised how many people out there just wanted to feel connected. I'm alwaya happy to connect. Just send me an email whenever you have the energy. I'd love to know more about you. Keep well and thank you for the comment, it is much appreciated.
Thanks for this. Please continue to do updates on this rare disease. God bless 🙏
Thank you for sharing this. The birds are trying to help at the end! 😂I will be following your journey!
Absolutely love your channel, I might be biased but still enjoying every episode.
I love that you enjoy them.
Thank you for this video…I just got diagnosed last week and am 37. This has been super helpful in understanding more… thank yiy
Just found your page , recently diagnosed.. it's from my t4-t8 still got more scans to find the cause , so scared what the future holds for me and my children.. looking for as much support and advice as I can .. your video was very informative and comforting.. thank you x
My mum got diagnosed yesterday.can i get ur suggestions
That's about where mine is. I mostly have tingling that's gotten better after having one surgery to break one arachnoid cyst. I'm scared of ending up paralysed & having to wait years to die. I'm older & alone already.
I have ideopathic syringomyelia in my thoracic spine T5 - T8 3mm
Thank you for your sharing you journey and information about syringomyelia. I have idiopathic sm, it’s hard to don’t know the cause. I hope you find cause in Italy 🍀 and I’m will stay tuned for your journey. And we can some day meet in eu, Italy isn’t that far from Czech rep.
A great idea!
I'm also South African ❤ It took me ages to get a diagnosis , because this condition is quite rare and most doctors didn't have a clue!
I hope you're able to get all the support!
I don't have chiari causes mine is from having arachnoid cysts that came from having lumbar osteomeylitis which spread to thoracic. I've already had one thoracic spine surgery but there may be more so I'm monitored. I don't have pain but I get scared of getting paralysed. I'm doing remarkably well even tho my MRI images look otherwise. My spinal cord doesn't look like much of one. I do some regular exercise to keep moving well.
Hi! Been following your channel for awhile. I have a small syrinx from C7-T1. Do you experience headaches? If so, what are they like?
Hi! Thanks for following! I do get headaches. Pretty much everyday and they are different. I experience around 15 different types of headaches and migraines.
The most common are:
- front of my head just above the eyes that feels like intense pressure
- back on the head/base of the skull going into the neck, it feels like pressure and tension in the muscles like when you cough too hard
- my whole head, it feels like there is a cement block in my head while having pressure from the outside
- ears and temples, this is more of sharp, needle like pain that spreads quickly
I have had the headaches for so long that I don't really medicate for them but migraines I will go lay down and rest. If it still doesn't pass after a few hours I will take something for the migraine.
Personally I have adverse reactions medication and so I try to avoid it when I can.
I hope this information helps you and please do not hesitate to ask more. You can also email me at Hello@urbanyolk.ch with more detailed questions if you like.
Keep well!
I have a it in my thoracic area with scoliosis and no chiari malformation. I sometimes get backaches in the thoracic area, but mainly in the low lumbar area from arthritis. I had no symptoms and it was found during a MRI for something totally different. They have found quite a few anomalies with scans, enlarged adrenal gland, plaque build up of the arteries and kidney stones.
Goodness, quite the find. I'm glad that they were able to find these issues. Helps to know as much as possible o be address things early on. I hope yoir treatment is going well!
I have sm in two parts of my back. I can't sdi anything anymore and have several other diagnosis now.
I'm sorry to hear that you have to deal with other conditions on top of sm. It is already a troublesome disease. I hope you are able to find stability.
Thank you for explaining this. I was recently told I have an enlarged syrinx in my spine. Will need to do another MRI with contrast for more clarity. If you don't mind, how do you sleep? I'm always worried about how it affects my back. Do you use a specific pillow?
I'm glad that the video helped. I have struggled with sleep most of my life and have narrowed it down to a few main aspects. First, I try my best to stick to a routine by going to bed between 10 and 11 pm then wake up between 5 and 6 am. That is the time frame that works for me specifically but a routine is a great idea. It helps your body better know what to do next on auto pilot if you have increased pain. For the position while sleeping, try a few out and but not on your stomach. I find the best is on my left side with my hips adjusted parallel. A pregnancy pillow works really well to lie with on my side for me. Good luck with the MRI and this new journey. One piece of advice, it may be tough but there is a chance for a stable and purposeful life.
@@urbanyolk Thank you so much for your reply. I will try these tips out. It definitely has taken a toll especially because it's so new to me and not many people understand. Hoping for the best. Newly subscribed and will be following you on your journey as well.
@@urbanyolk Hi Again. Hope you don't mind. I wanted to know if you've every experienced a high pulse rate from the syrinx? My heart rate is constantly high and I'm wondering if that's the cause and should I be concerned. I did two ECGs and chest X rays and there was no abnormality.
@@nickya6905 hi! No problem at all. I have had heart palpitations for over a decade. It happens particularly when I am not feeling well. I know that others with a syrinx also get it. It can be overwhelming. The best thing to do is stay calm and whatever you are doing stop it safely and allow your body to come to a rest. Focus on breathing in deeply and pushing the air out all the way, slowly. This will help bring your heart rate done.
Whenever you experience a symptom you can't explain the best thing to do is take a step back and keep your breathing steady. Sometimes that is not possible and that's fine too. Panicking can imcrease the severity of the symptom so it is more about mitigating the aftermath.
@@urbanyolk Thank you again! I've gone to the Emergency room so many times about it but then I realize it might be because my syrinx is located at c5-c7 which is associated with heart rate. I'll work on it now I know It could be related.
I have an idiopathic syrinx in my thoracic region. I'm currently waiting to hear back from the University of Washington in Seattle to see what my options are for treatment. I've been in chronic pain since I was 28 and I'm 46. I'm hoping they can figure it out.
I hope they are able to give you some answers soon. This journey can be so daunting. Wishing you all the best!
Mem syrinx surgery success full help me
Hi chiari type2 syringomyelia sufferer...I get massive weakness, pain headaches. Paralysis and seizures. Currently going thru a fresh cycle leaving me bed and chair bound. Waiting on MRI and blood results to see where to go from here
Forgot to mention, syrinx runs from chiari to s1
Goodness... That is quite severe. That truly sucks man. I hope ypi get results you can work with to create a treatment plan. Wishing you all the best in this time!
🙏🏻Hello madam 🙏🏻 I had syrinx now go away and I have burning pain in my left hand and Arm Please suggest me medicine for stop burning pain completely 🙏🏻
I heard CBD oil helps.
What is fullform of CBD Oil
I have a syrink from L2 and runs up all the way up t spine I have not had c spine MRI yet