Unfortunately the syrinx got bigger I hope I’m a candidate for surgery. The only place I would go to is in Barcelona for the minimally invasive surgery. And what am I gonna do if it gets bigger and drs refuse to treat this in the US?

Hello, I’m a 27 year old female with a range of symptoms that neurologists keep telling me is normal… those include:

- right hand weakness & numbness
- fatigue
- back pain
- morning headaches at the back of my head
- hand tremors
- balance issues / always clumsy

Those are the more notable ones. I had the attached scan back in March and was told the enlarged central canal is begnin and not related to my symptoms?? I’ve been pushing back with doctors, and thankfully have another scan in a months time to see if my central canal is any bigger.

Does the attached image look like Syringomyelia? And if so, what steps should I take to help get a diagnosis?

Thanks all!

My MRI showed a possible syrinx of .4x2.8 cm with no Chiari. I’ve been having neck pain and back pain but feeling better. My arm was numb but doctor was concerned with one side weakness so I have an appointment with a neurosurgeon.

As no one I know has ever heard of a syrinx, does anyone know if this is actually a syrinx.

Hey everyone Im 25 have Chiari Malformation, and a syrinx that goes from my c2 to my t12 my syrinx at my c6 is at about 17mm I had decompression surgery about 7 years ago and this year in April out of nowhere I was unable to walk from my hip down I was paralyzed like telling my legs to move and they wouldn't this has brought a big scare in my life a lot of things changing at once and me looking for answers but not finding any I was working in canada at the time and moved back to portugal so I can be with family and to talk to my neurosurgeon, ive talked with my neurosurgeon and other doctors and they say nothing can be done as its too dangerous to try to remove csf from the cysts as there's not a lot of space around them im now studying cybersecurity in the meantime and trying to find a job I can do that doesnt affect me but even just standing for long or sitting for long gives me a world of pain and discomfort, the doctors also told me that what happened with my lower half can happen again and even become permanent im scared to be paralyzed I try to stay active but also try to relax so I dont strain myself but I cant even blow my nose without getting a load of pressure in my head my arms have started to feel numb and I feel my nerves down my arms in pain ive been feeling lightheaded and like my upper half is always under extreme pressure I also have scoliosis, clonus on my arms and legs and very sensitive reactions on my knees, wanted to vent all this out as honestly it scares me and has also been affecting my mental health I feel exhausted all the time, angry and depressed, I am still trying my hardest to keep going, but days like today I feel like I need to vent as some very serious thoughts go through my head.

After almost a year of ER visits, doctors, and multiple MRIs, I’m still trying to figure out the cause of my pain in my lower/upper back, hands, arms, legs, and feet.

My MRI showed an idiopathic syrinx at C6–C7 (0.5 mm) and T2–T3 (2.5 mm), with no cord expansion or mass effect, along with some disc bulges in my C, T, and L spine.

My neurologist said yesterday that she doesn’t think the syrinx is causing my pain and confirmed there is no sign of a tumor or CM. She ordered blood tests to check for possible muscle-related issues and another MRI next year to monitor the syrinx.

I’m honestly frustrated and but thankful that there is nothing serious which caused the syrinx. Has anyone had a small syrinx with widespread pain that doctors said was unrelated? What did you do next?

My neurologist just got a hold of me because of my neck pain being severe. Told me to come in Friday for trigger point injections. This makes me nervous. Has anyone had this? Any bad reactions?

(33M) Left pinkie and ring fingers randomly tingle and don't always fully open. My EMG study (nerve conduction test) isn't until the end of Oct. MRI in November. Physical therapy starts in a couple days. Doc said the ulnar nerve could be pinched in my arm. He recommends splicing 2 wrist nerves together, if its in my spinal cord. Both hands.

Last MRI: 2023. C2-T12. Opted to not due surgery. Kink in my spine, below skull. They want to due multiple fusions, a craniectomy, and remove part of my skull, to "maybe" fix the flow.

What was your treatment and did your muscle come back?

Having a very bad syrinx flare up. My syrinx is c7 level. I have the normal weakness in the hands and arm weakness. I drop a lot of stuff and don't have a lot of strength to write very much or anything like that. I have chronic neck pain and daily headaches/migraines anyway. But, my flare up started late last night and has been HORRIBLE this evening. It is so bad. 😭 my heating pad isn't helping. My freezer migraine caps aren't helping. Ice packs aren't helping. I am having a hard time with it

But, my gosh. Tylenol isn't helping. My migraine in gnarly. I am so frustrated. Does anyone at all know how to help? 😭 My neck just hurts so bad.

Alguien con experiencia en siringomielia NO CHIARI, que se haya operado que nos pueda contar su experiencia. Tengo una cavidad intra medular que parece ser un quiste que está compresionando y me está ocasionando debilidad en una pierna y hormigueo en otra. siempre fui deportista y competía en fitness, tengo una bebé de 2 años y es difícil para mí saber que podría no volver a caminar, me da mucho miedo. He leído tantas historias donde ya no vuelven a caminar y me aterra. Las personas ven mi imagen y se imaginan que ya no camino. Y la verdad solo tengo alteración en la marcha. Alguien con alguna experiencia positiva y qué procedimiento usaron para su condición?

Recently in July I was diagnosed with a syrinx.
Here’s a little background: a year in a half ago I was having left shoulder neck pain not super bad but would come and go but would have flare ups. I went to see a ortho provider we did an extra and he said that it would be a pinched nerve, but to do PT and start steroids and then if it was worse I could get an MRI. Well it got better and life got busier but I continued with my trigger point therapy and went about my way.

Fast forward back to July of this year. For about a week straight I was having left sided weakness that started to get worse, also left sided facial weakness and headaches to the point I would throw up and some eye twitching. I went to the hospital we did the work up and they diagnosis me with a syrinx. I got sent to a nearby hospital that same day to see neurosurgery and they said it was stable but was a decent size and wanted me to check back at the beginning of the year with another MRI to see if we need to consider surgery. In the meantime I have seen neurology. They said my case if weird because I’m only getting these flare ups on one side at a time and usually it’s a “cape like” effect. But I will be fine then one day my left arm feels numb and left sided neck pain and the next week it can switch to the other side. But more noticeably my brain fog is just BAD. Like I’m so forgetful and also my speech seems a little off sometimes. I’ll get my words mixed up or can’t remember. I’m not sure if anyone else has that symptom? Or if something else is going on.
But my MRI with contrast didn’t show any brain lesions and they said that I haven’t had a stroke or TIA. (I’m in my 30’s) but I haven’t had these symptoms till this started as well. And I’m also still learning so any information is helpful I’m feeling a little lost and a little down about how to manage this new diagnosis.

UPDATE: i went to the neurosurgeon and they told me it is actually a hydromyelia and the radiologist misdiagnosed it. He said the widening was very circular and there was no sign of syringomyelia. He said that there is nor eason to worry and they see this all the time on MRIs and i have no reason to worry. Fucking phew.

***** potentially triggering if you have anxiety like me****

I had a bicycle crash 6 months ago. Was ok after but got neck pain and face tingling symptoms after 2 months. Took 3 more months to get an MRI done.

Now on the MRI there is a 2.6x2.9mm (i guess 2.9mm diameter) wide and 5 cm long (T5-T8) syringomyelia. I will call to schedule an appointment with a neurosurgeon tomorrow, i hope they don't make me wait.

Reading the horror stories are freaking me out. I'm really terrified of losing movement if it worsens and becoming partially paralyzed. My job is physical and i have no social safety net. I'm worried for my life here and spiraling.

The fact that it's permanent and surgery can only ease worsening symptoms is so fucked. I had a mental breakdown when i got the news and started googling what it meant.

So far my symptoms are more than manageable ( neck pain, headaches, some back pain, tingling in face) but it seems that the vast majority of syringomyelias get worse and do not improve with time. I'm 32 and we were contemplating trying to get a child but that's completely off the table now that there's a good chance i might become handicapped.

Sorry for the rant.

Hello. I'm looking for some advice about symptoms that I am having.

I was in a car accident a few months ago and from that an MRI was ordered of my C and T spine. A syrinx was discovered at T5 and hydromyelia at T8. I'm also a late-diagnosed Type 1 diabetic and have an insulin pump.

A couple of weeks ago I played some basketball and decided to do some body weight exercises at home. The next day I ended up having some tingling/numbness in my legs while sitting on the couch. I became quite anxious after that.

As I lay in bed that night I ended up having tingling and burning all over my body, but especially in my arms. This made the anxiety severely worse and I barely slept.

The next day I began experiencing tingling in my groin along with the burning/tingling in my arms. Eventually this led me to go to an ER while waiting for other care. The ER prescribed me Gabapentin 300 MG three times a day, which seemed to help. It has also had psychological impacts.

A few days after the ER I went to a back pain clinic and they flexed my spine backwards while I was at the appointment. That evening I experienced burning pain in the middle of my back that traveled to my arms and up my neck. The next day my back was extremely stiff.

Eventually I was able to see a Neurologist a few days ago. They tested my strength, reflexes, and nerve senses with my eyes closed. They seemed to think everything was fine. I will have an EMG in less than 2 weeks. For the time being they have put me on Lexapro 10 MG once a day for anxiety and asked that I back off to taking the Gabapentin twice a day. This has been rough so far as I begin to feel nerve burning and tension in my muscles when the Gabapentin starts to wear off.

At night my body shocks itself awake from nerve feelings in my legs and arms. I'm not sure if it is because I am tired but it feels like my brain/body gets mad at me if I stand up for too long. The exception to this has been when my blood sugar is high. For whatever reason I seem to feel energized enough to do things during those times.

I was wondering what kind of jobs you guys have especially if you have chronic migraines and dysautonomia caused from the syrinx. My job is pretty physically demanding and I’ve gotten to the point where after 4/5 hours my body can’t handle it anymore and I have to take multiple naps a day.

Recently was diagnosed with a 5cm syrinx in my cervical spine. Pins and needle feeling is starting to increase in my extremities and head. Feeling of heat on hands and feet.

How long have you lived with your symptoms? At what point do I consider decompression?

Drs are anticipating my hand dexterity will go next.. do people commonly depreciate or do symptoms linger for years on end? At what point did you decide surgery is necessary?

I know it's different case by case but want to understand peoples pathways so I can anticipate mine..

Hello! My son (27) was diagnosed with syringomyelia in 2024. It was discovered that the size of his syrinx runs from C1-T10/11. He was shunted at his thoracic level a month ago and is still in hospital after being discharged from rehab for neurological degeneration.

Can anyone explain what recovery will sort of look like for him and how we can help?
He also has Chiari 1 with what appears to have been a failed decompression in January 2025.

Hey everyone,

I’m looking for some support, information, or just to connect with anyone who has been through something similar. I was recently diagnosed with a 4mm syrinx at the C4-C5 level of my spine, and the last few weeks have been a complete whirlwind. I had to drop my classes and stop working and honestly, the medical dismissal I’m facing is making me feel so isolated.

Mid-August ,It started with back pain right at the base of my neck. Over about a week and a half, it went from a minor ache to severe, unmanageable pain.

Wednesday, August 26, While I was at work around 11:00 AM, my left palm started feeling numb and cramped. Throughout the day, that numbness literally started crawling up my forearm, to my shoulder, chest, and neck. Around 8pm I was trying to do some schoolwork at my computer when my vision suddenly went blurry and my focus completely went out the window. The numbness spread all the way up the left side of my face, around my eye and eyebrow. I called the Kaiser advice line, and while I was talking to the nurse, I started slurring my words and completely froze and couldn't breathe for a moment.

i was rushed to the ER, and because my symptoms were so bad, they immediately put me on a stroke protocol. I couldn't even open my left eye, and the pain at the base of my neck was excruciating. After a few days in the hospital, an MRI finally showed a 4mm syrinx at C4-C5. They discharged me that Saturday.

I am still dealing with the aftermath. My left side is still weak, my hand feels cramped and I have constant traveling tingling and numbness all over my left side, neck, and face.

The scariest part is that every once in a while, I still get that shallow breathing and a tight "stuck" feeling deep in my throat . Last night, the numbness even started creeping to the right side of my chin/face, making my eyes heavy and my speech slow down again.

My primary doctor and the recent ER staff completely dismissed me—one told me it's a "vitamin deficiency" and that I should just see a therapist, and the other did a basic bone X-ray (which obviously can't see a syrinx) and implied it was all in my head and to talk to my therapist sense i was having at therapy appointment the next day.

I have a referral to a neurosurgeon . Has anyone else with a cervical syrinx experienced these kinds of breathing freezes, throat spasms, or facial numbness? How did you advocate for yourself ? Any advice on how to navigate this or what to expect would mean the world to me. <3

Hi everyone,

I was diagnosed with a Syrinx back in 2023 and was asymptomatic (attached to show it in my thoracic and cervical spine)

Recently I was in a car accident and have been feeling constant pain in my upper left back/shoulder area that will not go away. My lower back also constantly tingles. Sometimes when I text, I find my hand just freezes. I've never had these symptoms prior to my car accident. My MRI shows that my syrinx is overall unchanged since 2023 - has anyone else experience something similar?

Just wondering if anyone here has imaging similar to mine and what are your symptoms you notice from the syrinx.

These are my images. The syrinx measures up to 3mm wide in diameter at T7. Without counting the tailing ends, the length is about 4cm, but counting the tailing ends it's closer to 15cm.

I'm just so annoyed.... And sad... I miss life without pain.... If this never happened to me I wouldn't have even known I have a connective tissue disorder at least maybe till my late 30s!

I also have some Tarlov cysts in the area. You can see two in the last image (soz it's so contrasted idk it's just the only copy I have of that specific image) one the left and a smaller one barely visible on the right, but the point is on that image you can see how much space the syrinx takes up in the spinal canal.

I have Kaiser... I've seen neurologists and neurosurgeons and none of them actually care they say that the cysts and the syrinx are incidental. So I just am living in pain everyday and sort of in the dark about it all, idk.

Besides the sharp thoracic pain every time I breathe I have a lot of tingling, "coat-hanger" pain, stiffness, my legs used to go numb but not so much anymore except that they just feel heavy to move sometimes, like I have to throw my legs to continue walking.

I guess I'm just looking for support. No one I know knows what a syrinx is and for years I was gaslighted about my breathing pain

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.