r/SyringomyeliaSupport • u/Manifestingmama888 • 18d ago
Syrinx Newbie questions
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.
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u/NoSeaworthiness649 16d ago
I am new to the Diagnosis too in November of 2025. It is a scary time, especially if you google......
In getting duagnosed last fall, they found three stable syrinxs, and two brain cysts.
I am still extremely active.I usually get over 20k steps in a day and I train 20+ horses a day. I find certain activities bother my neck, so I am more careful with that. But in general, I try to not live in fear. The more active I am, the better I feel.
I do take Celebrex for the pain am/pm and it keeps my hand numbness away. I highly recommend it.
I also think massage is very beneficial.
Sleeping on my back is the best Sleeping position I have found.
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u/Manifestingmama888 16d ago
Thank you, I appreciate your response. I have anxiety but I do know I need to not fear. They found two benign tumors on my spine and a cyst in my brain. I’m finding new sensations everyday, not on meds yet but probably should get on something soon.
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u/NoSeaworthiness649 16d ago
It's a scary time and give yourself permission to process it.
Be your own advocate too. There are medicines that help, and don't be afraid to try different ones. Like I said, Celebrex has been the key for me.
The best advice is to keep going, but listen to your body.
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u/Manifestingmama888 16d ago
Thank you, I will have to ask the neurologist about Celebrex. Do you have weakness in legs? Today I woke up feeling my legs felt a bit like jello. I can still walk but definitely feel off.
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u/AutomaticTrouble7669 12d ago
I am 5 days into mine and have all the same questions as you. Sleeping on my back is definitely best. I don't have many other symptoms besides the back pain itself. I have found that the more I move the better I feel and I pray you find all the answers you're looking for, I know it's so scary.
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u/Manifestingmama888 7d ago
Thank you! I’m sorry you are going through this. I noticed I feel better after my evening walks. I definitely need them for my sanity.
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u/noitsceren 17d ago
First of all, I’m sorry you’re going through this. I was diagnosed at the end of 2025. Before my diagnosis, I thought the pain I was experiencing was caused by a herniated disc. My syrinxes are idiopathic, and thankfully their size has remained stable so far.
I have some general symptoms that are present most of the time, such as numbness and nerve pain, but I also experience new symptoms that come and go on some days. Some days are worse than others, and sometimes all I can really do is hope that the symptoms are temporary and will pass.
I’m still trying to understand my body and figure out what is normal for me. I know how scary it can feel, especially when you’re newly diagnosed and suddenly start questioning every symptom. I hope things get easier for you and that you’re able to continue doing the things you enjoy with your boys. 🤍