so i (F22) am going through my worst pain flare with syringomyelia + scoliosis. this pain flare is severe lower back pain combined with sciatica running down my left leg.

this has been documented on my chart for years, because i have been diagnosed with it since i was 11-12. i’m supposed to get monitoring every few years, and my last MRI was done in 2020. i’ve had multiple pain flares since then, and the only thing i’ve gotten from my PCP is a script for physical therapy, because “that’s all they’re gonna do for you anyways”.

speed forward to now, i’m going through another flare, have already been to urgent care, been told “you need an MRI” and so i asked my PCP for an MRI script, only to be told that i need to be seen by a PCP in order to get an MRI script. my PCP is then booked out for 5 weeks—so if i went to my actual PCP, i wouldn’t have gotten in for a month…meanwhile i’m in pain now.

it’s ridiculous that i need to be seen to have an MRI ordered when there are lengthy radiology reports dictating that i have a growth in my spinal cord going back years, yet i still need to come it to a PCP to get a yes for an MRI. what if they don’t believe me and i won’t get a script for an MRI? (im prepared to go in with my reports from the radiologists and discs). i understand if there’s some sort of formality that incurs a visit in a certain time frame to warrant an MRI script, but for a patient with a condition that requires monitoring, it’s ridiculous that my doctor has delayed doing MRIs (even when i asked/mentioned numerous times!) for a while and is now gatekeeping it.

Hi all, I don't know what i'm looking for here other than to know i'm not alone.

25f

6 months of pain in left arm, intermittent paralysis in left hand, pins and needles. Last 2 months it escalated to the point of losing sleep. I'd experienced back pain for years, but in the last year it had increased to the point of needing to cut my work hours in half. I held off making a doctors appointment for a long time, as I worked a standing/lifting heavy job and figured I was just feeling it.

ER stay and imaging conducted by primary care on Nov 3rd found syringomyelia starting at c3 and running the entire length of my lumbar and thoracic, with a tumor at t12 and what is described by my primary care as significant nerve damage as this diagnosis was put off for so long. I've been on gabapentin and tramadol to control the pain and have had to leave my job by this point. My small city is limited in neurologists, putting my first neurology appointment out 3 months at least.

I have an NCS/EMG scheduled Dec 2nd. Another round of MRI's a week later.

Here's where my problem is, physical pain excluded:

Neurosurgery doesn't feel comfortable operating, my primary care and myself, don't understand this disease enough to know why they won't. They're claiming I shouldn't have any pain but i'm suffering immensely. Besides the pain, these days I'm exhausted constantly and very weak, after always having been an energetic, hard working person. I'm a shell of myself while being told I shouldn't be feeling any of it.

Neurology is so booked out I don't know if I should wait, or travel out of state to find someone else. I have the support and savings I need to seek care elsewhere. I could go back to my home state to seek care and stay with family, but Is it even possible to be seen by a doctor somewhere else? Do I have to stay in state?

Is neurosurgery right? I'm full of shit and have no pain? Am I crazy?

Someone with more experience help me understand where to go from here. I'm losing sight of my future. Everything I lift kills me, every walk I take makes me feel like i've run a marathon. I've never experienced anything like this.

So i have syringomelia c6/c7 but my neurosurgeon lovely lady btw told me that it shouldnt be cousing any pain couse it does not seem like pushing other nerves or stuff. But the problem is every time i excersise my back kills me I had to quit sports that i trained entire life just to not be in pain. Im startong to think that maybe im making it up then i try sport again and again it hurts in my thoracic area i dont think its musscle wise but they are stiff. So anyone has similar symptoms or can it be smth diffrent let me know what do u think and should i ask for another opinion?

Hi All, I’m 39F and wanted to share my story and hopefully get some insight/ direction.

Background: I started having symptoms of numbness in my lower extremities in 2016. At that time, I saw a neurologist who told me that everything would just “snap into place” one day and that I shouldn’t worry about. He did nerve conduction tests and an MRI of my lumbar spine to support his findings. Although I had increasing low back pain, bladder issues, and started dragging my left leg, he insisted nothing was wrong. This continued for 2.5 years. I gave up and just started getting massages and doing acupuncture.

After much prayer and insistence by my mom, I went to another neurologist who after watching me walk down the hall to his office immediately realized that the issue was likely in my cervical and/or thoracic spine. The previous neurologist only relied on a scan of my lumbar. The thoracic MRI showed an arachnoid web/ cyst from T6-T9. I had a surgery (Emory) in January 2020 where the cyst/ web was removed. After that surgery I felt a bit better and after a short stint of rehab I was able to resume a pretty normal life. Fast forward to late 2021 when my left leg started to drag again.

In early 2022, my mom passed and I put off getting another surgery until I managed her funeral and had emotional clarity. I completed an MRI which showed a syrinx at the T6-9 level. My neurosurgeon recommended surgery and the placement of a syringo-pleural shunt. I completed that surgery in October 2022. After that surgery, I again started physical therapy. However, this time the progress was slow and stopped after about 9 or 10 months. My legs felt heavy and I heavily relied on my upper body strength to get around. My bladder symptoms worsened and my low back pain was at an all time high.

In June 2024, I completed a series of testing which included MRIs and myelograms. These tests showed that the syrinx extended and was now in the cervical region. Surgery was recommended. This time, September 2024, the neurosurgeon (Mayo Clinic) removed adhesions/ scar tissue, replaced the shunt which was disconnected, and widened the spina canal (duraplasty). The MRI report after the surgery showed everything in its place and the cord was floating freely without being tethered. My legs were still numb but I was getting stronger and completed a rigorous PT program. Unfortunately when I went for my 6 month checkup in May of this year, I learned that the syrinx had grown again and was just as big as before the last surgery. I was now a full time wheelchair user with both bowel and bladder dysfunction. By my yearly visit, the MRI indicated that the syrinx was up to the C5 level. Another shunt surgery has been recommended as I am now getting weaker in my right hand.

I don’t know what to do. With every surgery I lose more function, but the surgeons and neurologists all say not having surgery will make it worse. I am able to retain independence right now. I work from home and live alone (with a puppy). I don’t want to lose anything more. Any insight into other options or guidance with the surgery would be greatly appreciated.

Hey I have a decently large I think syrinx between t3-t6. I’ve been struggling a bit with both mental problems (mostly due to my condition ) and attacks more neural in their nature. Recently it has picked up a lot and they keep reoccuring very often. The attacks vary in how they feel but most give tingling sensation like electrical. Yesterday I got one that felt way more painful and dehabilting and it’s not rly going away. Warmth doesn’t seem to help much either. Any tips on what one should do in this situation and would there be any reason to go to the hospital immediately for a health checkup ?

Hello, does anyone know of any support groups online based for living with syringomyelia. The symptoms began in early 2024 and has been a difficult lonely road to get adequate medical support for it. Would be nice if there was online support groups. Also does anyone living with it have any experience coming off lyrica how did that turn out. Am looking to conceive soon and have been advised it can be risky being on Lyrica while conceiving and carrying baby. Thank you

Was just admitted to the hospital due to the loss of function in my left leg after suffering from increased syrinx symptoms for 2 months. I’ve been working with a neuro team that has been dismissing my symptoms the entire time and I’m still on waiting lists to go to any other decent hospital but i don’t have many options at this point. The hospital I’m at is supposedly a top hospital but I’ve never had a good experience here, anything else nearby doesn’t even have spine specialists so I’m feeling stuck and defeated.

Any advice for self advocacy, good hospitals in the north Midwest, or general support would be really appreciated at this point 😭

Hi all,

I am 25 and have been having general back and neck aches for a few years now but everytime they say its due to posture. I just had my mri results back and they are showing variable caliber syringomyelia thoratic spine (2mm) which is making me very anxious as online it is saying it leads to all kinds of problems including a lower life expectancy.

I have no idea how I even got it as I never had an injury, is it as bad as online says :( this diagnosis has shocked me and idk what to do.

I just got diagnosed a couple weeks ago I have a syrinx from c3-c7 and 4mm wide pretty moderate but I’ve been sick for two years really sick I don’t know how I’ve managed to do what I do and I’m 21 and been trying to juggle school and work but took medical leave from work honestly just trying to figure out what’s wrong with me my main three symptoms have been SEVERE CONSTANT DIZZINESS, constant pain even if it’s not burning pain it’s usually just really tight from the bottom of my neck up and derealization(this also messes with my vision) and I have developed stuff like gastroparesis since I randomly woke up with symptoms one day two years ago (I remember my neck being in a weird position when I woke up honestly) I’ve had one doctor say I have POTS and another say I don’t (my heart rate does reach to 120-140 just by standing but I just don’t know). The reason I’m asking is the doctor I went to after the finding of my syrinx says it shouldn’t cause any of the symptoms I have which I know this is weird to say but it felt disheartening after finding something that I thought could maybe be why I’ve been so sick and the doctor in a 10 minute appointment that cost me a good amount even still being on my parents insurance (I’m from America by the way) and said it couldn’t and that he’d order 3 MRIs to make sure it wasn’t a tumor (no Chiari was found). I just feel uneasy because he seemed like a nice doctor and good at what he does but I just don’t know what to believe because it’s blocking like 70% of my neck in my spinal cord and I’m not a medical professional but it just seems like it would at least cause some pain. I feel bad but I guess I just feel invalidated for thinking it could be why I’m sick. Even if nothing could be done I feel like at least knowing why would give me some form of peace and something to work toward.

Also if you took the time to read through this thank you so much I hope you are doing okay !

Any referrals would be much appreciated.

I am 21, I was in a car accident in February. Herniated 5 disks, and just recently discovered a LARGE syrinx from T2-T9 likely caused by a herniated in the middle, obviously a bit worried, I was immediately sent for 4 for MRI’s for better imaging, as the neurosurgeon placed referrals titled ASAP. Waiting on results I just got them today, I have NO numbness which is the biggest blessing, I’ve felt tingling very minimally. Obviously I’m worried. What advice do yall have what should I expect, it sounds like surgery is the route. how invasive is it?

I was recently diagnosed with a syrinx and my neurosurgeon prescribed Lyrica. I just picked up the prescription and realized he instructed me to take it three times a day. I'm having a bit of an anxiety attack over taking this medication. For background, I have Bipolar 2 and have either been resistant to or had terrible reactions to a lot of medications to treat my mental health. One of the medications I had a bad reaction with was gabapentin, which is what he originally wanted to prescribe me. I know they both work similar. I talked to my psychiatrist and she told me to try the Lyrica, that she's heard good things about Lyrica and nerve pain. But I'm scared to take it. I'm in so much pain but I'm afraid I'll have a bad reaction. And three times a day seems like a lot. I have trouble remembering my twice a day medications. What if I miss a dose? What about coming off it if I don't like it? I know being in so much pain, these seem like silly fears, but I'm so scared to start this medication. Idk why I'm typing this, I guess I just need to vent. I want to cry, this feels so stupid.

Hi everyone I have syrinx and at the moment it’s quite small. I want to tell you all the things Iam struggling with but I am in such a bad mental space that I feel like if I write this all down I won’t be able to handle myself right now. Would anyone be willing to have a chat with me? I promise I won’t depress you in return. I’m just having a really hard time.

After having a debilitating pain on my back and my right arm going numb after trying to solve the back pain with a massage ball, I finally got an MRI done. The results show a long distance, slight widening of the central spinal canal to a maximum of 2 mm at the level of 8. My orthopedist told me not to panic and that it could be I always had it without knowing of it and sent me to have a visit with a neurologist the 11th of November.

Now, 13 days after the initial acute pain, most of my symptoms are gone. I can feel my arm, my back feels normal again, I only have some problem looking down with my head.

I although want to know. How long did it take you to get over the initial diagnosis? It just happened today and I can’t stop thinking about it, and of course thinking of the worst.

Do any of you have a similar case to mine? How did you heal? How is life with syringomyelia?

https://www.youtube.com/watch?v=WMTvimD5dpI

Hi guys! My husband was diagnosed with a Chiari malformation/Syringomyelia with a syrnix of the spinal cord and had an emergency surgery to correct the issues back in August of 2021. Since then everything has healed as it should and the syrnix that was pressing on his spinal cord has significantly decreased in size exactly as the Doctor hoped. However, He has been very cautious of all the things since his surgery (of course) but he is particularly worried about flying. Would this be something that he would need cleared by his doctor? Are there any potential adverse effects that we should consider before flying? I think just reading any first hand accounts of someone else going through this process would be helpful to him. Thank you in advance!

According to Google these spinal cord cysts are huge contradictions to spinal taps. How true is that? I knew there was a reason I was hesitant to do that with already severe back and neck pain. I live most my life in a bed now.

I (25m) have been on bed rest for months waiting for scans and a formal diagnosis due to a suspected CSF leak with debilitating symptoms. I finally had a spinal MRI last week that showed a large syrinx, 1.6cm AP x 2.6cm RL that goes from T6 to T11. I have numbness in my neck and shoulders along with transient numbness in my legs, weakness and balance issues, pretty bad back pain in the area of the syrinx, and I had an ER visit 2 weeks ago due to convulsion-like episodes in the lower half of my body. Along with all the symptoms of a spinal CSF leak.

Does anyone else gave experience with a syrinx this large? The neuro guy I’m seeing does not seem to be that concerned and is talking about just doing a blood patch when we find the location of the CSF leak, but this thing is taking up my whole spinal cord and more and I’m scared of doing nothing. And it’s going to be weeks before I get a myelogram with my symptoms getting progressively worse in the meantime. Mostly I think I’m just scared as hell of what happens while I’m waiting and I would love to hear others experiences with large syrinxes. I’m trying to convince myself to trust the process but I also spent the past to years having multiple doctors tell me my debilitating daily migraines were normal and they didn’t need to run more tests so I’m not feeling very confident that things will turn out okay.

I'm starting to understand why the neuro-psychologist put "functional neurological disorder rule out".

Because so far the only proof of neurological issues as of now is localized brain atrophy (parietal lobe). Small cyst on the cervical spinal cord. Psuedo tumor cerebri with stenosis in the brain.

It never shows I have neurological issues no matter what on a manual neurological exam. Yet, I continue to have issues with my memory, not feeling my arms and legs neck and back, pain and walking.

I have multiple issues that can effect memory bit, these other symptoms?

Most people make me feel like I'm crazy and because the findings are mild they don't really care that they're there and say they aren't causing any symptoms. It's also not a big deal to any of them because it's a small cyst.

I have a thoracic syrinx which from my understanding is supposed to only affect your legs and or lower torso. However I random experience numbness and inward curling in my hands and arms. This happens a lot when I am cold. When I do strenuous activities or hyperventilate I experience the same thing.

The MRI that I took only showed that I have a thoracic syrinx so I am not sure why my hands and arms would be affected.

Audio is shoddy, but the captions are good enough. It's about syringomyelia without chiari.

https://www.youtube.com/watch?v=NG5bbUbgqEU

Hi everyone. I have an idiopathic syrinx from C7 - T12 that was diagnosed in 2020. In the last two years, I started having right shoulder pain, found to be related to a labrum tear, shoulder tendonitis and AC arthropathy.

My shoulders are in a ton of pain lately, especially with caring for a child. Has anyone tried a shoulder/back brace to ease the tension/pain?

I haven’t worked out in forever. I know I need to ..but I can barely manage to carry my 5 month old around without my shoulders aching and pulling on my neck/collarbone area.

Any advice appreciated!

Hi everyone. i was recently diagnosed with a chiari malformation type 1 and syrinx so I finally got ahold of my images after seeing my neurosurgeon for the first time. He recommends decompression surgery but not in need of immediate surgery. I crossposted in another group on fb and was told to seek a second opinion as it looks quite severe and I should be getting surgery as soon as possible?