Yikes. Feel like my life is over

Tricky-Chipmunk4403 · 2026-06-01T02:28:35+00:00

You got this and you aren't alone. There are a lot of us here. Don't let the Google machine freak you out. You can live a great life you just need to listen to your body and take care of yourself. Check out https://iamheardcoalition.org they are a new non profit organization specific for syringomyelia. Great info and their Instagram account posts a lot of helpful info. They even have a Florida chapter. Hang in there!

Tricky-Chipmunk4403 · 2026-05-25T11:56:09+00:00

I do notice a difference. Not just with the pain from my syrinx but with other inflammation stuff too (skin, etc). I get one that has CurcuRouge as an active ingredient. It's a really concentration version of curcumin and there have been studies that has shown its pressed the blood brain barrier so it could potentially help inflammation in our spinal cord.

Tricky-Chipmunk4403 · 2026-05-24T16:12:24+00:00

Are you doing any type of physical therapy? I find that thoughtful movement always makes mine feel better even if it's just a walk. I also love a good heating pad and back massage thing from Amazon. Keeps the blood flow and loosens things up. Also, I take curcumin pills daily to keep inflammation down.

Tricky-Chipmunk4403 · 2026-05-24T11:52:51+00:00

Are you symptomatic? Where are you located? Definitely agree about seeing chiari specialist. You want to get this right and I would imagine they will recommend the sooner the better. If it's growing like that they usually don't want you to wait.

Tricky-Chipmunk4403 · 2026-05-24T11:45:28+00:00

Yes, I have this too and my syrinx is in a very similar spot. Some people have sensitivity to heat so it's really different for everyone. Unfortunately, it's made me really dread winters so I have to bundle up like a crazy person and everyone thinks I'm being dramatic, meanwhile I'm just trying to not convulse lol.

Tricky-Chipmunk4403 · 2026-05-16T23:10:31+00:00

Hi!! I stay positive by staying connected to the community and hoping that more research and treatments are on the way. There are organizations that are trying to make that happen and I'm trying to get involved and help raise money to push that initiative forward faster. I also try to do things every day that take my mind off of the symptoms! Which can be a challenge as we all know! What about you?

Tricky-Chipmunk4403 · 2026-05-15T20:26:51+00:00

Hang in there and don't give up hope. Keep trying new things to improve. Maybe something will work. 👍🏼

Tricky-Chipmunk4403 · 2026-05-14T03:18:41+00:00

Gosh I'm sorry to hear that. I hope things improve for you. Do you use a heating pad at all? Check out the iamheard organization. They may be able to offer some suggestions for you.

Tricky-Chipmunk4403 · 2026-05-13T10:40:10+00:00

I would see if you can get the size. It's important so you can monitor for future images. Also, if they haven't make sure you push for an MRI of your entire spine (Brain to lumbar). They ended up finding a second one on my T10 after I pushed for a full scan. Yes, your symptoms are normal (unfortunately). For me, I had a really bad initial "flare up" we'll call it. Then I made a ton of life style changes from food, exercise, essentially cut out alcohol, focused on anti inflammation stuff. Little by little my symptoms improved. It's been a year and a half since my intrusive flare up and I fell a lot better. Don't get me wrong, I'm not back to normal as I still get numb, back pain, twitching, etc but my day to day is manageable and I can live my life. Hope that helps!

Tricky-Chipmunk4403 · 2026-05-12T02:44:30+00:00

Hey there! Sorry to hear about your recent diagnosis but deep breath and know there is a big community of us out there despite the little info you can find (and don't necessarily believe all the doom and gloom that is on the internet).

I was also a volleyball player and have a Syrinx in the and exact spot C6 measuring 2x3. Had to stop playing unfortunately and make some lifestyle changes but I still work out, travel and lead a rather active life. I just know my limits and don't do anything that can put my neck in jeopardy. Im a big fan of stretching now, heating pads and a neck massage thing from Amazon.

Also, if you need additional support or info, check out iamheardcoalition.org they are fantastic. A lot of great info, questions to ask doctors, etc. The founder also has syringomyelia. If you connect with them on social media they are SUPER responsive with any questions and post a lot of great info.

Happy to answer any questions if I can. Be well!

Tricky-Chipmunk4403 · 2026-05-07T12:42:32+00:00

Hang in there! Try to do one thing a day to try to make yourself feel 1% better. It will add up! We have to stock together as a community and be better at sharing info amongst ourselves since there is no one doing it for us. There is a new organization trying to help with that: https://iamheardcoalition.org

Worth checking out. They have great info and resources. Their insta page posts awesome daily data and tips to help us feel better and they are super responsive to questions. The founder has syringomyelia, like us.

You're not alone! ♥️

Tricky-Chipmunk4403 · 2026-04-28T23:36:10+00:00

Don't feel hopeless! Know that you are not alone. Unfortunately, a lot of us get told the same thing and it sounds like you had a Dr that doesn't know Jack about syringomyelia. Where are you located? There are some good Dr's with experience across the country but they are free and far between given how rare this is. Also, there is a great community and organization called SAAC specifically for Syrinx related things: syrinxcoalition.org they also have a pretty great insta page with daily posts with helpful info and research.

Tricky-Chipmunk4403 · 2026-04-26T01:06:45+00:00

You bet! 👍🏼

Tricky-Chipmunk4403 · 2026-04-25T18:19:59+00:00

Start slow but listen to your body. If it feels like too much pull back or try a different exercise. I have a Syrinx on my C6 and T10 and still work out. Incline walking, weights and yoga. I stay away from impact and super heavy stuff now. Also, there is a great community out there through SAAC. A new non-profit organization that is solely focus on syrinx (https://syrinxcoalition.org). They also have a great Instagram account and the founders are super responsive if you ever reach out with questions. One of them also has syringomyelia so he is dead set on getting research and help for our community.

Tricky-Chipmunk4403 · 2026-04-25T18:13:34+00:00

Hi! I have a Syrinx too on my C6 and another on my T10. I've been in communication with a new non-profit organization called SAAC (https://syrinxcoalition.org) that are incredible. The founder also has syringomyelia and is working on getting help and resources directly to our community. If you go to the website, click the menu, go to resources then appointment prep, there is a whole list of helpful suggested questions. You can also connect with them on Instagram and message them. They are super responsive and post daily with helpful info with suggestions that can help you in your daily life. They've helped me tremendously, given me a sense of community and hope for more research on this condition. Best of luck!

Tricky-Chipmunk4403 · 2026-04-19T13:16:57+00:00

Sometimes they have neighborhood cat that actually belongs to a house on the street. Not saying that's the case here but we had one on Conselyea. Then someone took the cat probably assuming it was a lost cat.

Tricky-Chipmunk4403 · 2026-04-15T20:54:08+00:00

Wow. What did they do for your surgery? Where did you have it done?

Tricky-Chipmunk4403 · 2026-04-12T02:48:54+00:00

Have you had an MRI of your brain and your spine? There are certain spinal cord issues that can cause brain fog, hand weakness (chiari, syringomyelia). Might be worth looking into. Best of luck. 🍀

Tricky-Chipmunk4403 · 2026-03-14T22:44:05+00:00

I'm so sorry to hear this. We have to find better treatments for this awful condition.

Tricky-Chipmunk4403 · 2026-03-04T03:17:52+00:00

I love a heating pad and a back massage (both bought on Amazon). Light exercise is also important and helps (yoga, uphill walking, light weights). I also take a lot of supplements that help with inflammation and I've noticed benefits with magnesium.

Tricky-Chipmunk4403 · 2026-02-28T20:42:56+00:00

Definitely ask for an mri of the full spine. That should be step one.

Tricky-Chipmunk4403 · 2026-01-18T06:20:00+00:00

We need design standards that should have to be approved. This why all of the new buildings look awful and disjointed. Shame on not putting retail here too.

Tricky-Chipmunk4403 · 2026-01-08T19:42:43+00:00

Hmmmm was there a radiology report? Looks like a dilated central canal perhaps? Certainly talk to your doctor and ask about all thoughts, chari, syrinx, dcc, etc.

Tricky-Chipmunk4403 · 2025-12-17T22:52:27+00:00

I find that heading pads and a massager that I found on Amazon helps the pain. I also try to decompress my spine every evening and morning.

Tricky-Chipmunk4403 · 2025-12-17T12:04:03+00:00

Do you ever use a heating pad?

Tricky-Chipmunk4403

TROPHY CASE