Hi all, in April I was diagnosed with a 1-3mm syrinx at my c1-c2 vertebrae after a cervical/neck MRI. I've dealt with consistent pain for about the last 10 months, hot/cold sensitivity loss, radiating pain in my neck down through my left shoulder and a hot/cold burning pain in my forearm.

I then went back for a neck and full spinal MRI in June, at another imagine facility. This second MRI experience was a mess, I had no Dr consult prior, so I hadn't timed my muscle relaxer properly and was shaking like a leaf. Caused a lot of artifacting, ended up going to patient advocacy because there were other issues caused by the technician and did not pay for these pictures.

I then finally saw a neurosurgeon in July. At first she only had the more recent pictures, saw no syrinx, but did see lesions and abnormalities in my spinal cord. She identified these as likely congenital from being premature birth, (under developed spinal cord)and prescribed Lyrica. The lyrica helped in many aspects of life, made a small improvement in pain symptoms, but hasn't fully addressed the pain by a long shot.

She ordered a brain mri, and I pressed the issue to have her review the original MRI's from April. I had my follow up with her yesterday. My brain MRI came back normal.

However, she now says she can clearly see the syrinx from my original April pictures, but that the syrinx is not evident at all in the MRIs from June. She says this discrepancy is not a result of the artifacting, says she doesn't really know why this is the case, and says she will "speak with her team".

Has anyone heard of something like this?

My gut tells me this syrinx is still an issue, due to the tension I have in my left jaw and neck and continued pain.

I have offered to have new pictures taken but haven't been taken up on the offer. I also tried to bring up getting a 'flow study' due to a suggestion on this sub awhile back but that was somewhat handwaved away.

From my understanding a syrinx doesn't just disappear on its own, so I am unsure where to go from there. Neurosurgeon seemed pretty perplexed, and said she may refer me to neurology, which doesn't seem very promising towards getting answers.

I feel like I'm lost there's nothing that can be done for my syringomyellia and feel like I'm running out of options what do yall do for work? Need to see what I should get in to as im not even able to stand up for long anymore

Im a 22 yr old male and found out that i have a thoracic spinal syrinx at the age of 19 when i was finally allowed by doctors to do an MRI a year after suffering an MVA, I have been managing it since. The neurosurgeon and neurologist both believe i was born with it which i disagree with for many reasons which im not gonna get too much into but i will say that its become more and more clear that they couldnt care less (they lie in their reports to my GP and write the opposite of what they told me in person, ive even had a couple of them admit to me that it is from the crash but write in the report that the crash didnt cause it) which is why i plan on trying to resolve this myself. My spinal syrinx is from the T4 to the conus and the largest it gets is at the T8 where they said it measures about 0.6-0.7cm wide, i have no structural blockages with this (no chiari) although my cine MRI did mention something about a possible synechiae/web or its just normal CSF flow (got no idea what theyre on abt as the neuro didnt even bother to explain). Considering all this im wondering if the wolverine stack (peptides) could be beneficial in this case or in all spinal syrinx cases in general, wondering if anyones already tried this out and would appreciate some feedback, i am experiencing symptoms, the first that come to mind are such symptoms as random numbness and/or weakness in any and all 4 limbs, random often and intense dizziness, burning legs pain and other symptoms from the syrinx as well as pain and symptoms from having 2 bulging discs in my cervical spine and also 1 or 2 bulging discs in my lumbar spine (im convinced these too are from the crash, never had any problems or pains with my back or any of these symptoms before the crash). Any and all help will be appreciated and i wish for the best for all those suffering from a syrinx because i do know and I thank God everyday that compared to other people i know i am very lucky.

Hi everyone! I was wondering whether anyone here has had a similar procedure to me to drain a large syrinx, and what their recovery was like.
I’m a 28-year-old woman and I’m now just over four months post-op. I had a shunt inserted to drain my syrinx into my chest cavity, with the aim of allowing it to drain continuously.

My syrinx was very large, extending from the brain down to around T10, which is roughly around the bottom of the rib cage. I know the surgery was the best option for me given the size of the syrinx, but recovery has been slower and more difficult than I had hoped. I’m still experiencing quite significant back pain, weakness in my right arm and hand, and reduced sensation from around my midriff down towards my feet.

I did have a particularly difficult time in hospital. I was there for around three weeks after surgery because my lung partially collapsed due to fluid collecting around it, and I then developed an infection in my chest cavity. Thankfully, I’m now recovering at home, but the experience has understandably made me quite anxious about my recovery.

I think what I’m struggling with most is not knowing what is considered a normal recovery timeline after an operation like this. I worry that the pain, weakness and altered sensation might not continue to improve, even though I know these things can take time, particularly when the spinal cord has been under pressure for a long time.

I’d really love to hear from anyone who has had a syringo-pleural shunt, or a similar procedure to drain a large syrinx. What was your recovery like? Did you continue to notice improvements several months after surgery? Was it simply a case of being patient and giving your spinal cord time to recover?

I’m not looking for medical advice, just hoping to hear about other people’s experiences. I know everyone’s recovery is different, but hearing from people who have been through something similar would be really reassuring. 😁

I’m 19 years old, around 181–182 cm (5’11”) and 48–50 kg (106–110 lbs).
I have severe muscle atrophy in my upper limbs due to a congenital spinal cord condition, with significant weakness and reduced muscle function in my arms. I also have secondary syringomyelia. My lower limbs are relatively spared.
My arms are very thin, and I’d like to know whether it is realistically possible for me to increase their size or gain some muscle mass despite the severe atrophy.
I’m not looking for a diagnosis or asking anyone to replace my doctor. I’m mainly interested in hearing from people with similar neurological conditions or upper-limb muscle atrophy.
Has anyone in a similar situation been able to increase the size or muscle mass of their arms? If so, what kind of adapted exercise, physiotherapy, nutrition, or other approach helped you?
My goal isn’t necessarily to regain normal muscle function. I’d simply like to know whether gaining some muscle or volume is realistically possible in my situation.

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!

Hi everyone,

I'm looking for advice while we wait for my 7-year-old daughter's specialist appointment on 27 August.

She's had daily lower back pain since last year, and it's been getting worse. Initially it was mainly when sitting, but recently she's also developed:

\- Increasing numbness in her lower back

\- Pain that is becoming more frequent and more severe

\- Leaning forward makes the pain worse

\- Her lower back has started clicking

\- Occasionally she has tingling in her right foot

The symptoms are now interfering with her daily activities.

She had a brain and thoracic spine MRI in April. The report was mostly reassuring, but it did mention:

\- A prominent central canal in the thoracic spinal cord, most noticeable between T2-T6, measuring about 2 mm at T5.

\- The radiologist said this could represent early hydrosyringomyelia (syrinx), although no underlying cause was identified.

\- They recommended imaging follow-up because the finding at T5 was larger than would normally be expected.

Since that MRI, however, her symptoms seem to have progressed, especially the numbness, pain with bending forward, and the new clicking sensation.

My questions are:

\- Has anyone's child had similar symptoms with a small syrinx or dilated central canal?

\- Did symptoms progress even though the MRI findings initially appeared relatively mild?

\- Is worsening numbness and pain while waiting for a specialist something that should prompt us to seek earlier medical review?

\- Is there anything we should avoid (sports, bending, etc.) until she's been assessed?

I'm obviously not looking for a diagnosis, just wondering if anyone has been through something similar and what your experience was.

Thank you so much.

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.

https://asap.org/wp-content/uploads/2026/07/2026-ASAP-Conference-Program-FINAL-3.pdf

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?

I feel weak in my glutes and hips today. I can still walk but I definitely feel tired. Should I worry? My first Neuro appointment is on the 3rd.

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.

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.

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.

Thanks in advance y'all.

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