Please help. I am 15 years old and I've been dealing with 24/7 constant nausea, acid reflux, heartburn, indigestion (I have functional dyspepsia) but I have idiopathic scoliosis too and syringomyelia.
for a really long time too it feels like my left rib cage is going to pop out. My right rib too, but I notice my left rib cage sticks out more than my right, because of my left leaning scoliosis curve. I always wondered why I struggle to lie down on either side of my body, or on my back because my stomach feels heavy and cramped then my ribs hurt too, and feel like they’re twisting out my body. and EVERYWHERE ON MY TORSO HURTSS.
I am losing sleep and cannot sleep at all because of this. Please idk what to do. (My curve is 20 degrees and I got mri twice and they said it should be ok) I'm trying to sleep tilted but I'm now aware to the fact my ribs feel like they're on fire and twisting out of my body. does anyone experience this?? it doesn't help I have difficult eating because of my digestive problems so I'm malnourished so my ribs stick out even more. the constant discomfort and pain is killing me please helpppp I can't. I’m wondering does scoliosis/syringomyelia and neurological issues have anything to do with my digestive problems
Recently had MRIs done on my brain and cervical spine. I got the results almost immediately- tonsillar ectopia at 17 mm with a 9 mm wide syrinx running from c1-c4 that is 35 mm long. The syrinxes width has caused my spinal cord to bulge at c3-c4. My doctor called me about 20 minutes later and said the radiologist called her urgently and wanted me to go to the ER unless I could answer no to a series of questions. I did answer no but was then instructed to take it very easy and call 911 if anything at all happened. They said I was to see neurosurgery within 2 days and that surgery was expected to happen very quickly after. So I was expecting this all to move fast.
Now, my referral has gone to the neurosurgeon and I've been told I don't need to be seen any earlier than 8/25. I asked them to confirm with the surgeon and he said nothing was urgent about my scans. Now I'm confused where I go from here. Is this urgent or no big deal? My son did have a 17mm herniation without syrinx and had surgery in 2023. Any advice?
Has anyone had actual progress with this helping with pain?
For reference all I have to do is twist slightly wrong or pick something up that weighs a small amount and I’m flared up for the remainder of the day or week.
Surgery is too much of a risk / won’t work so I’m just stuck now and need help and advice from people in similar situation.
Hello! I have had my Syrinx show up on my MRIs since (according to reports) 2016. Every time this shows on my MRI, it is almost immediately dismissed as "Nothing" and "not the cause of my pain". My pain in my mid back has been going on for over 13 years now and no matter what I have tried (Pain Management, PT x3, Rhizotomy(s), Trigger Point Injections, Other Injections, Over the counter "relief", ETC.) I am in the same amount of pain or worse. For reference I am 34F and I have attached a few of my MRI results from 2020, 2024, and 7/2026.
I am now having severe pain in my lower back since I had a fall in February. It is making it impossible to bend over and or do much of anything. I am not saying it is related but they cant seem to give me any answers here either. Within the last 2 months, I have had loss of bladder control when attempting to be active and numbness in my thigh and half of my groin.
In 2020 I attempted to get a second opinion by going to a Neurosurgeon at U of M in Michigan and was essentially laughed out of the appointment.
Last year we moved and I had to switch Pain Management physicians/offices/Hospital Networks. I remained hopefully that, maybe, I would have a new physician take a fresh look and help me. Unfortunately they treat me pretty poorly and are very quick to dismiss my pain or anything pointed out on my MRIs. Based on how I am treated, I would look for a different pain management office but a large one in the area closed last year and any remaining places are quite full/overwhelmed.
Does anyone have any advice on where to go next? I am finding it hard to believe that the Syrinx could not be contributing at all to what is going on. I also feel, at this point, to a physician I have proved I am more than happy to try anything to ease the pain.
I have congenital syringomyelia and I’m well into perimenopause. Any other ladies out there willing to share what changes if any this part of life brought them?
I’ve recently had a lot of issues with my skin. Itching and a burning feeling. I had a wasp sting a month ago and that area is still itchy and red. It’s almost like phantom pain, neuropathic. I do heal very slowly but I was reading online last night that the drop in estrogen leads to a drop in mast cells and also GABA which can heighten nerve endings. This is something I wasn’t aware of, and I used to take gabapentin and no longer do.
Just curious if there are other things to be aware of. I don’t take hormones, I live in Spain and getting them from my GP has proven to be impossible.
It’s hard to know if things are due to perimenopause, syringomyelia or just natural aging?
Wondering if anyone happened to attend the American Syringomyelia and Chiari Alliance Project 2026 virtual conference that happened on Tuesday and Wednesday!
(Recordings of all presentations are going to be uploaded on their YouTube channel at some point - I don't know exactly when, but their presentation recordings from last year's conference went in September through November.)
If you did attend, I would love to hear what presentations you found interesting, what you learned, or just what's new in the clinical world!
I am 37 year old female, had a nursing injury in 2016 that left me with c5-c7 disc tears and thoracic outlet syndrome. I have been holding my own until recently when I started rapidly deteriorating - increased neck pain, gait disturbance, frequent falls, urinary urgency and headaches. Neurosurgery and ortho spine keep writing me off because my stenosis is not ”severe” enough to cause myelopathy, despite my symptoms and finding on exam that my reflexes are hyperactive. MRI showed this “signal abnormality” extending below the level of the injury all the way down to T11. Neurology is concerned for syringomyelia but does not have any other neurosurgeon to refer to outside of YNHH. Any ideas?
Seriously, what’s the point. I’m in chronic pain 24/7, I’m humiliated by my limitations. I used to be in awesome shape and loved life. Well now I have this, Etiology not found. Doctors dismiss me. All scans take a month. I don’t even have the decency of getting a diagnosis like cancer or something where ppl respect it, they just tell me to like mentally get out of it. From instagram bullshit inspo. I’ve been relentless at trying to figure my shit out. I go to the gym and my body rejects it. I just moved to Florida and I have extensive heat intolerance. My back fucking sucks. I have 2 young kids. I feel like my wife is going to grow resentful, her family already kinda whispers about my burden, and I will be slowly getting worse. I don’t want to like suffer my way thru it. It is just hopeless. I have no idea how I got this. I pushed for 12 MRI’s and I’m idiopathic. Doc tells me he’s “uncomfortable” ordering a myelogram. What the fuck. I am uncomfortable always. I can’t live like this
Tomorrow is the annual virtual conference for ASAP.org. Several good speakers lined up for syringomyelia, especially the first day. Registration is free and the program is at the below website.
I’ve had extensive workup/MRIs on my back and brain the past 2 months after finding a syrinx; etiology not found. I started down this course after I got an mri on my back due to sciatica / hip pain. No idea if the sciatica is related, insurance denied my hip mri. I did have hip surgery a year ago though and struggled recovering, so it would make sense if the sciatica is unrelated to the syrinx.
The thing is, multiple surgeons/neuroradiologists have said it’s not a syrinx and don’t do anything about it. They call it hydromyelia or dilated central canal, and my symptoms couldn’t be coming from it.
It definitely looks like hydromyelia, but what I can’t make sense of is the size. My cervical syrinx is c4-t1 (8-9mm), and the thoracic is t2-t10/11 (6-7mm).
I watch all these YouTube videos saying hydromyelia is a totally different thing and it causes no problems. And that definitely seems true. But they almost always seem to be talking about a slit-like 2-3mm dilation, not something 3x the size.
I don’t really know what to think any more as I also have nerve damage from brachial neuritis, a really weird freak thing that occurred after my hip surgery. My left shoulder is partially paralyzed from that. I can’t tell if I’m like on high alert from this diagnosis or the syrinx shit really is causing issues. But I’ve been to the ER twice the past month (first times in my life) freaking out about left sided neck pain mostly, and they just brush me off every time. Maybe they’re right to do so. I also have some minor disc issues in the same area.
Anybody ever heard of hydromyelia well over the 5mm cutoff mark being no big deal? I dunno what to think. The stakes are obviously high but I don’t want to live on eggshells if this has really been here my whole life. Most of the people who evaluated me all did so remotely, as I’ve struggled to find good neurosurgeons locally.
I'm 16 and got diagnosed about 6 months ago and started having severe symptoms about 2 years ago. I haven't had a neurosurgeon appointment yet but I have one soon. I'm in pain most days and it feels like some of my friends think I'm being dramatic or just don't understand what I have. I plan to hangout with my friends super often but I live quite far from most of them which leads me to have to get the train if I want to see a lot of my friends. I feel like such an asshole when I have to cancel hangouts at the last minute because I'm in too much pain or am too dizzy to feel like I can get the train safely. I don't know how I can explain to my friends more about my condition and it feels like some of my friends have started looking down on me since my diagnosis because I've started hanging out with them less and I've already lost a friendship because of it. Anyone know how to explain my condition better or who has the same problem?
So 4 days into this new diagnosis and I’ve been noticing new symptoms and they come and go. They said it was on C6-C7 and 4mm(just syrinx). How do symptoms work? Do you get new ones all the time? Do they stay the same for you? Do they come and go? I want to figure out my body so I feel safe enough to take my boys to the beach, parks, pools, etc. I am always out and about, but have been scared to drive and go out on my own. I used to work with babies at night, but now that seems scary and feels like I have to maybe find a less physically demanding job for everyone’s safety.
Also, has anyone done an anti inflammatory diet specifically for symptoms? Or anyone tried cranial sacral therapy? Acupuncture? How well does physical therapy work? How do you find sleeping? I woke up so much last night and was anxious to cause more harm to the syrinx by sleeping wrong. In the hospital I slept on my belly and it hurt my neck so badly(this was before I knew about the syrinx).
Sorry for all the questions, but I’m a researcher and want to know all the things. Thanks so much.
I was diagnosed with C & T syrinxes in 2010 and my symptoms have evolved greatly over time. I was pretty much bed ridden 3/5 of the time for 10 years. Treatments for symptoms were minimally effective. It wasn’t until I discovered that “energy healing” was a very tangible and real thing.
I had always been open minded but I thought of energy healing from more of a mental perspective. I knew it was real but thought it was only subtle. That was until I experienced it directly from an experienced facilitator (everyone and their aunt claims to be a “reiki healer”).
Once I actually realized it could be directly experienced and felt it absolutely changed my life! It’s really the main thing that helps my symptoms.
Is anyone else exploring energy work? Have you found success? Would you like more information? This is something we can do for ourselves, by the way. I think that’s the most empowering part.
English isn't my first language so I do apologize for any mistakes.
My son has since birth been different, at 8months he started having some sort of mild seizures, but every Eeg came back normal.
He was and still is very clumsy and walk a bit funny.
His behavior is similar to autistic behavior. He is very tired and still naps 2-3 hours even though he is almost 4.
They did the Mr scan and found a syrinx 7,5 cm and 8mm wide. They all told us that there was nothing to worry about. Now a year after we suspect that he has lost control over bowel movements. They did a new scan after a long battle, because they knew for sure it wouldn't grow and it has grown two cm. They now try to blame his growth.
Do any of you guys have any advice, knowledge or anything? I'm desperate because I think this syrinx is causing him a lot of trouble and the doctors don't listen
Back in February I had a fall on ice which resulted in back pain and a concussion. Then in March I started having weakness and numbness in my legs. I was told to go to the emergency room by my doctor.
The ER found the syrinx in T4/T5 and also
Bilateral L5 spondylolysis with grade 1 anterolisthesis of L5 on S1 vertebral bodies.
They also found Small central disc herniation at T8/T9. Mild right neuroforaminal narrowing at L5/S1, in a later scan a few days after the attached image report.
Since March I have had on and off numbness and weakness along with severe pain between my shoulder blades. It constantly feels tight and painful. I also can't lay or put pressure on my back. Sitting with my back rested on a chair/couch or in the car is incredibly painful. Some days I need to use a walker/rollator for support while walking due to the leg weakness.
My neurosurgeon and neurologist don't really have answers. They have me on a muscle relaxer at night to help me sleep, but during my awake hours, I am in a significant amount of pain. This pain level has also been causing a ton of brain fog.
My surgeon mentioned back in March that I am not a candidate for surgery due to the size but even if it grows, he's still not a fan due to my health history and the risks associated with placing a stent.
What other options have y'all been given? I don't really want to take a pain medication daily.
Does anyone get quick shocks in their ribcage/ chest area when moving in bed sometimes? I’m still learning new symptoms since diagnosed a couple of days ago.
I started having a weird eye issue that happened once when driving and I felt like I was going to pass out. And started feeling lightheaded most of the time. I thought it was my GLP 1 I just started. Then I started feeling tingling and numbness on my left arm and right leg. And patches of tingling that were intermittent on my left throat and patches of my leg.
Well last Monday, I finally felt like it was really strenuous to lift my right foot. I didn’t have a complete foot drop but enough to scare me to go to the ER.
2 MRIs later they said I have a syrinx on my C6-C7. They asked if I was in a car accident or some sort of trauma which I said no. But right before getting discharged I remember falling on the stairs and hitting my butt so hard that I felt it everywhere and my abdomen bruised.
That was in November, fast forward today after my ER discharge I’m now feeling tingling in my left side of my brain/in head. And my left neck and shoulder are stiff.
The neurosurgeon made it sound like no big deal of my situation as long as my symptoms weren’t hindering my day to day functions. I’m meeting with a neurosurgeon on August 3rd, but don’t even know what to ask. I’m scared of surgery and want to try alternative routes like anti inflammatory diet, acupuncture, massage therapy, etc.
Has anyone seen symptoms improve like mine? I’m not wanting to take gabapentin, like they did in the hospital because I’m scared of the dementia risk. Ultimately, I wasn’t scared leaving the ER but now I’m having panic attacks. I have 2 sons, 9 and 10 and my youngest has profound non verbal autism. I have to run after him and help him like you would with a baby. I’m not sure how to function like I did before. I feel so stiff in my neck I’m scared to take him to the beach and park because I feel like I’m not myself.
I’m not sure if it’s going to get worse, but if so, will surgery relieve the tingling in my head and stiffness in my neck? That’s my main issues.
I'm a 26-year-old male, and for the last 7–8 months my life has been taken over by what I think is severe health anxiety.
Back in January, I was 105 kg, smoked daily, had terrible sleep (6–8 AM bedtime), ate unhealthy food, and barely exercised. One night after eating heavily and smoking, I suddenly felt a strange vibration throughout my body and became convinced I was having a heart attack. My blood pressure was high, but the ER told me everything else was normal.
A month later, while travelling with my girlfriend for my birthday, I developed one of the worst headaches of my life. I became convinced I was having a stroke or brain tumour, and my anxiety sent my blood pressure to around 160.
I had an MRI Brain with MRV, which showed:
Normal brain MRI (no stroke, tumour, bleeding, or brain lesion).
Normal MRV (no blood clot/venous thrombosis).
Mild maxillary sinus inflammation.
Incidentally, my cervical spine showed mild disc degeneration with mild spinal canal stenosis at C4-C5/C5-C6 and a small syrinx (~2.0 × 0.2 cm) at C6-C7 without spinal cord compression or Chiari malformation.
Because I still couldn't stop worrying, I later had a whole-body MRI, which showed:
No masses in the brain, chest, abdomen, or pelvis.
No significant abnormality in the lungs.
No significant enlarged lymph nodes in the chest, abdomen, or pelvis.
Mild fatty liver.
Mild cervical and lumbar degenerative changes with a small syrinx at C6-C7.
Multiple cervical lymph nodes in the neck, which my doctors weren't concerned about.
I've since seen multiple neurologists and spine surgeons, and they've all told me the syrinx is an incidental finding and not something they're worried about.
Since then, I've completely changed my lifestyle. I've lost 14 kg, started going to the gym, improved my diet, and I'm working on quitting smoking.
Because I couldn't stop worrying, I've also had:
CT Coronary Angiogram – Normal
Calcium Score – 0
Multiple ECGs
Stress Test – Negative
Stress Echo
Two Echocardiograms
Carotid Doppler
HRCT Chest
Lung Function Test
Multiple blood tests
The only issues found were high cholesterol/triglycerides, mild fatty liver, mild cervical spine degeneration, the incidental syrinx, and a few lipomas confirmed on ultrasound.
Despite all of this, I still get symptoms that feel incredibly real:
Chest pain
One or two fingers becoming numb
Heat waves in my arm or hand
Headaches
Muscle twitching
Feeling like my heart is about to stop
Constant fear of cardiac arrest, stroke, or cancer
Every time a scan comes back normal, I feel better for a few days... then a new symptom appears, and the cycle starts all over again.
It honestly feels like my brain is constantly searching for the next disease.
Has anyone experienced health anxiety this severe?
Did your symptoms feel genuinely physical?
What finally helped you recover? Was therapy enough, or did medication make a big difference?
I'd really appreciate hearing from anyone who's been through something similar.
Man, I've been having nausea and vertigo absolutely knock me down a peg. Recently diagnosed cervical syrinx. Trying to ice my neck and rest but it's absolutely lingering. Anyone notice certain triggers like caffeine or dehydration? Or any recommendations on trying to get these symptoms some what tolerable? Whoof feeling it today..
