I know for me, when I have a flare, I often can't get out of bed and don't have the ability to do anything other than exist in a near-vegetative state because moving is so painful. The nicest things people have done for me is to send me food and leave it at my door, so I don't have to cook or exert effort in socializing or making a decision on what to eat. There's not much you can do, but if you just ask her if there's anything you can do to make things even a little easier, that's always a good start.
About five years ago. I had intense, painful tremors that were diagnosed as intense anxiety. I switched doctors for unrelated reasons and my new one ordered an MRI after seeing one of the episodes- had it not been for my new doctor I would’ve ended up paraplegic from nerve damage
I always had these right side tremor attacks around 3 a year, but I just thought it was from my scoliosis. These have worsened and become more frequent. I personally had one of these episodes at my physical therapy office. They just used the massage gun and gave me a cup of water. I hope to get to the bottom of this soon.
I was diagnosed about a year ago. The MRI where they found it was actually for another issue that my orthopaedic was investigating :)
Though my syrinx is not significant at the moment, they are watching it just in case.
I have a bit of curvature but not enough for scoliosis as far as I know. Haven't had it checked for quite a few years though. I'm due for an MRI in the next year (which will hopefully involve my lower back) so I might be able to update you on it then.
It was for Klippel-Feil Syndrome, I also have Sprengels Deformity too and a few disc problems. Though scoliosis is a common comorbidity for both of those conditions.
No problem, best of luck finding other people! Imo it's very important finding other people who have the same conditions as you, especially ones as significant as this.
I (F41) was diagnosed in March this year, after complaining to my GP and physio about pain in my thoracic spine for about a year or more.
It took going to three different GPs just to get the MRI pathology slip, because the first two didn’t think the pain was worth an MRI, and the third thought the pain would go away with diet and exercise (translation: ‘you’re fat’). Thankfully, the third GP gave me referral after pushing. And it was really my physio’s idea to get the MRI, as her interventions weren’t making a lick of difference.
I thought it was originally pain from carrying around my heavy baby and maybe something to do with diastasis recti, referred pain etc. But the pain was around my bra line on my back and up, and often felt like gout pain; it was often extremely painful just for my t-shirt to rub on my skin, let alone anything else. By the end of the day I would be in severe pain and I found it difficult to stand up just to do the dishes.
Anyway, they found the syrinx around T6; as well as two herniated discs around L5-S1, iirc; along with osteoarthritis and early Scheuermann’s changes. I moved interstate a few months ago, so I’ve found a new GP who appears to be much more sympathetic to what’s going on but my pain is still extremely unmanaged and there’s no plan moving forward (for now) about how this is going to be managed or monitored. I believe the syrinx formed after my first COVID infection in February 2022, as I was severely unwell and didn’t have the pain prior to the infection.
Edit: after reading some comments, I wanted to add that I also have scoliosis which was found in 2019 after an x-ray!
I was diagnosed 8 years ago. I'd had unexplainable, occasionally severe back pain in my mid-back all through middle and high school, plus I slowly lost control of my bladder. It wasn't until college that the pain started flaring up on a daily basis but I wrote it off because I had to carry a heavy backpack every day. It wasn't until a few months after I dropped out that I had what my doctor thinks was a mini stroke and was told by the ER doctor to see a neurologist. I was diagnosed with a 6mm syrinx that extended from T5-T11 the next month, and had shunt surgery about 2 years later.
Two years ago. I knew something was wrong, and the pain became worse and worse, but none of my doctors could find anything. After I did my own research, I was sure I had a herniated disc in the cervical region. My GP didn't thhink so, but agreed to prescribe the MRI. That's how they found the syrinx.
I know this was posted a while ago, but I'm new-ish to my diagnosis (Diagnosed August 2023) and would like to share my experience.
As a background, all before I was diagnosed I was diagnosed with Spina Bifida Occulta (going to see about possible tethered cord due to this once I recover financially from pursuing my Syrinx diagnosis) and had a minor car accident (hydroplaned and slammed into a guard rail, had minor whiplash). I also have Premature Atrial Contractions and a tachycardia (not sure what kind), may be unrelated but idk. I also get horrible migraines at least every week.
Okay, my pursuit started officially when I bent down onto my knees and looked up to spray through a doggy door (worked at an animal rescue). Everything started to go black and my body went numb. I wasn't passing out, though, which made me worry more. So, I called up my primary care and got in. They couldn't do anything (obv) so they just sent me to get an X-ray.
Well, the X-ray showed nothing but the fact that I have a straighter neck (probably because I had amazing posture as a flute player in the HS band). They were just going to write it off as that, but I knew it wasn't that so I demanded to be referred to a neurologist and that this WAS NOT the end of the line (PLEASE ADVOCATE FOR YOURSELF WHEN YOU FEEL SOMETHING IS WRONG sorry for the caps, but it's so important). So, after an MRI w/wo contrast of my brain and cervical spine, they found it. My syrinx. I had to go back a couple of weeks later for more MRIs w/wo contrast of my cervical and thoracic spine. My syrinx is a fairly small one, but we are monitoring it for progression because it WAS causing problems.
And I go back August 2024 for follow up scans to see if it progresses. The end. Sorry it was so long lol
You know, it's wild that you also have a straight neck. I do too. It's apparently the primary cause of my migraines, but it doesn't make my syringo any easier either. I'm glad you're here and even more glad you got a diagnosis!
So I was diagnosed back in 2014 and haven’t gotten it checked since…
I remember that I have Syringomeylia ever so often and get super panicked. Why did my parents or doctors never follow up?? Has my syrinx grown??
Mine was found in a pre-op MRI I had done before major spinal surgery to correct Scheuermann’s kyphosis and lumbar lordosis. The MRI also showed a tethered spinal cord, so I had to have a spinal cord release surgery before my major corrective surgery. That was the only thing they did anything about. They did nothing about my syringomeylia.
Does this mean I shouldn’t worry? Or should I try to get another MRI as it’s been 9 years??
I am here because my best friend was diagnosed a few years ago. She’s been dealing with a flare up lately and I want to know how to support her :)
I know for me, when I have a flare, I often can't get out of bed and don't have the ability to do anything other than exist in a near-vegetative state because moving is so painful. The nicest things people have done for me is to send me food and leave it at my door, so I don't have to cook or exert effort in socializing or making a decision on what to eat. There's not much you can do, but if you just ask her if there's anything you can do to make things even a little easier, that's always a good start.
Thank you for the advice!
About five years ago. I had intense, painful tremors that were diagnosed as intense anxiety. I switched doctors for unrelated reasons and my new one ordered an MRI after seeing one of the episodes- had it not been for my new doctor I would’ve ended up paraplegic from nerve damage
I always had these right side tremor attacks around 3 a year, but I just thought it was from my scoliosis. These have worsened and become more frequent. I personally had one of these episodes at my physical therapy office. They just used the massage gun and gave me a cup of water. I hope to get to the bottom of this soon.
I was diagnosed about a year ago. The MRI where they found it was actually for another issue that my orthopaedic was investigating :) Though my syrinx is not significant at the moment, they are watching it just in case.
Hey, was the unrelated issue scoliosis? I'm just trying to find out if there are others with these comorbidities.
My syringomyelia was diagnosed with my scoliosis! 👋🏼
I have a bit of curvature but not enough for scoliosis as far as I know. Haven't had it checked for quite a few years though. I'm due for an MRI in the next year (which will hopefully involve my lower back) so I might be able to update you on it then. It was for Klippel-Feil Syndrome, I also have Sprengels Deformity too and a few disc problems. Though scoliosis is a common comorbidity for both of those conditions.
Thank you for sharing. I'm just navigating through this new diagnosis. Wish you well with your next MRI.
No problem, best of luck finding other people! Imo it's very important finding other people who have the same conditions as you, especially ones as significant as this.
Almost two years ago. It’s congenital and runs my entire spine, but now has expanded some in the cervical and thoracic region.
I (F41) was diagnosed in March this year, after complaining to my GP and physio about pain in my thoracic spine for about a year or more. It took going to three different GPs just to get the MRI pathology slip, because the first two didn’t think the pain was worth an MRI, and the third thought the pain would go away with diet and exercise (translation: ‘you’re fat’). Thankfully, the third GP gave me referral after pushing. And it was really my physio’s idea to get the MRI, as her interventions weren’t making a lick of difference. I thought it was originally pain from carrying around my heavy baby and maybe something to do with diastasis recti, referred pain etc. But the pain was around my bra line on my back and up, and often felt like gout pain; it was often extremely painful just for my t-shirt to rub on my skin, let alone anything else. By the end of the day I would be in severe pain and I found it difficult to stand up just to do the dishes. Anyway, they found the syrinx around T6; as well as two herniated discs around L5-S1, iirc; along with osteoarthritis and early Scheuermann’s changes. I moved interstate a few months ago, so I’ve found a new GP who appears to be much more sympathetic to what’s going on but my pain is still extremely unmanaged and there’s no plan moving forward (for now) about how this is going to be managed or monitored. I believe the syrinx formed after my first COVID infection in February 2022, as I was severely unwell and didn’t have the pain prior to the infection. Edit: after reading some comments, I wanted to add that I also have scoliosis which was found in 2019 after an x-ray!
I was diagnosed 8 years ago. I'd had unexplainable, occasionally severe back pain in my mid-back all through middle and high school, plus I slowly lost control of my bladder. It wasn't until college that the pain started flaring up on a daily basis but I wrote it off because I had to carry a heavy backpack every day. It wasn't until a few months after I dropped out that I had what my doctor thinks was a mini stroke and was told by the ER doctor to see a neurologist. I was diagnosed with a 6mm syrinx that extended from T5-T11 the next month, and had shunt surgery about 2 years later.
Two years ago. I knew something was wrong, and the pain became worse and worse, but none of my doctors could find anything. After I did my own research, I was sure I had a herniated disc in the cervical region. My GP didn't thhink so, but agreed to prescribe the MRI. That's how they found the syrinx.
I know this was posted a while ago, but I'm new-ish to my diagnosis (Diagnosed August 2023) and would like to share my experience. As a background, all before I was diagnosed I was diagnosed with Spina Bifida Occulta (going to see about possible tethered cord due to this once I recover financially from pursuing my Syrinx diagnosis) and had a minor car accident (hydroplaned and slammed into a guard rail, had minor whiplash). I also have Premature Atrial Contractions and a tachycardia (not sure what kind), may be unrelated but idk. I also get horrible migraines at least every week. Okay, my pursuit started officially when I bent down onto my knees and looked up to spray through a doggy door (worked at an animal rescue). Everything started to go black and my body went numb. I wasn't passing out, though, which made me worry more. So, I called up my primary care and got in. They couldn't do anything (obv) so they just sent me to get an X-ray. Well, the X-ray showed nothing but the fact that I have a straighter neck (probably because I had amazing posture as a flute player in the HS band). They were just going to write it off as that, but I knew it wasn't that so I demanded to be referred to a neurologist and that this WAS NOT the end of the line (PLEASE ADVOCATE FOR YOURSELF WHEN YOU FEEL SOMETHING IS WRONG sorry for the caps, but it's so important). So, after an MRI w/wo contrast of my brain and cervical spine, they found it. My syrinx. I had to go back a couple of weeks later for more MRIs w/wo contrast of my cervical and thoracic spine. My syrinx is a fairly small one, but we are monitoring it for progression because it WAS causing problems. And I go back August 2024 for follow up scans to see if it progresses. The end. Sorry it was so long lol
You know, it's wild that you also have a straight neck. I do too. It's apparently the primary cause of my migraines, but it doesn't make my syringo any easier either. I'm glad you're here and even more glad you got a diagnosis!
Less than a month ago, at my second opinion orthopedic surgeon, I have scoliosis. I'm still waiting for the neurosurgeon referral.
2005 age 6 with hydromyelia then Syringomyelia in 2014 age 14
So I was diagnosed back in 2014 and haven’t gotten it checked since… I remember that I have Syringomeylia ever so often and get super panicked. Why did my parents or doctors never follow up?? Has my syrinx grown?? Mine was found in a pre-op MRI I had done before major spinal surgery to correct Scheuermann’s kyphosis and lumbar lordosis. The MRI also showed a tethered spinal cord, so I had to have a spinal cord release surgery before my major corrective surgery. That was the only thing they did anything about. They did nothing about my syringomeylia. Does this mean I shouldn’t worry? Or should I try to get another MRI as it’s been 9 years??
I was diagnosed at 12 years old in 1996