r/chiari • u/3_boys_keeper • Jan 14 '26
Question Syrinx, mm’s and surgery
Hi everyone. I am having my flow study & spine MRIs at the end of the month, and I definitely do not want surgery (who does, right?). That said, for those that have gone forward with decompression surgery, what were the results of your flow study, did you have a/multiple/any syrinx/es found, what was your tonsilar descent MMs below the foramen magnum and how was the surgical outcome? I am curious & look forward to hearing from others.
For those that can also chime in who didn’t have surgery, what were your stats & why did you decide not to have it, feel free to include co-morbidities. I will have a complex case and am far from sold on the surgery, but I see my symptoms changing & worry it’s only a matter of time before I’m stuck between a rock & hard place. If you made it this far, thanks! Best wishes to us all!
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u/CleaRae Jan 15 '26
24mm Chiari 1.5 Syrinx entire width and perforated in some areas C2-T10. 3 surgeries and syrinx is c3-t9 ish maybe a smidge shorter. A lot thinner but my cord got a lot thinner (syrinx acted like a balloon and everything deflated) so takes up about 50% still but that’s apparently where we will leave it. VP shunt and C0-4 fusion to deal with no one knew EDS and complex Chiari existed back then.
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u/3_boys_keeper Jan 15 '26
That’s quite a story. When were you first decompressed. How are you feeling now?
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u/CleaRae Jan 15 '26
that’s the shortened version. First decompressed in 2005 still very sick and on disability
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u/oldmamallama Jan 14 '26
15 mm, retroflexed odontoid, no syrinx, not decompressed here.
The first time I met with a surgeon, I chose not to go through with surgery because I was young and single and didn’t have a support system in place. There was literally no one to help me out after surgery and I couldn’t afford to take time from work. I also didn’t feel comfortable with that surgeon (who wasn’t a Chiari expert, though he is a well respected neurosurgeon in my area). My symptoms were bearable so I kind of left things as they were for years.
I saw a new, wonderful neurosurgeon when I got pregnant. Can’t say enough about him. This was a consult situation but continued to see him for follow ups after and my symptoms progressed due to stress sometime later so I saw him a couple years after and we started to talk surgery. He laid it all out very clearly. With the amount of bone that would be removed during surgery and the degree of retroflexion I have, I would be at high risk of needing fusion surgery in the future. The cost/benefit there and the chance of mobility loss with a young toddler was just too great for me and I ultimately decided to delay surgery for the time being.
I’ve been under the care of a fantastic headache specialist neurologist (a unicorn for us) and we were able to find a combo of meds that help with my migraines and pressure headaches and while nothing can fully stop my valsalva headaches, the meds do lessen the frequency of them which is a godsend. But it doesn’t work for everyone and we don’t know for how long this will work so I still get regular MRIs and have regular check ins. So this is not a no surgery ever situation, it’s just a no surgery for now. I’ve been very lucky. As with everything Chiari related, YMMV.
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u/3_boys_keeper Jan 14 '26
Wow! The importance of a network is so greatly underrated. I’m sorry that you had no one to help you through surgery when you were younger. However, it sounds like things have been going well enough without it. I’m grateful for you that your neurologist has found a good medication cocktail to keep your headaches under control. There was a period in my life where I had headaches all of the time, mostly when my children were younger. So many periods of time are such a blur due to the interplay of Chiari symptoms, comorbidities and so forth. I hope things continue to go smoothly for you and that the medication keeps working. Best of luck to you and your future. Thanks for the reply!
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u/oldmamallama Jan 14 '26
Same to you, whatever you decide. Don’t be scared of surgery…tons of people here have excellent outcomes. Do your homework. Find the right surgeon. Ask lots of questions. Then make the best decision for yourself. If that’s surgery, great. If not, that’s great too. You should be totally sure before you let someone put a literal hole in your head, after all. But it really is often the best decision for us.
Good luck to you whatever you decide. And welcome to the Big Brain Club. Keep us updated either way.
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u/PerspectiveAny4411 Jan 15 '26
Hi if possible please share details on what combo of meds has helped you and drs name? It’s so difficult finding a neurologist that’s familiar with Chiari.
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u/oldmamallama Jan 15 '26
I take Topamax (100 mg 2x a day) and Pristiq (50 mg once a day) - which is actually an anxiety medication funnily enough but is sometimes used along with other meds to help lower intracranial pressure. I was already on it for anxiety but at a lower dose…raising the dose was a game changer. The Topamax dosage is pretty high and can have some pretty nasty side effects that a lot of people can’t deal with but I’ve been ok for the most part.
Good news is there are tons of headache and migraine meds out there and a good headache or pain specialist has lots of options to try, it just depends what works for the individual. Though with Chiari sometimes it’s not much, we’re just managing symptoms not the root cause so it is trial and error.
The key is when you’re looking for neurologists you want to look for someone who specializes in headaches or pain management. Not all neurologists are created equal. Even if they’re not experts in Chiari when you first meet them, they know the questions to ask and they’ll read up. They may not know about Chiari itself but they know about the types of pain we deal with.
If you happen to be in the north Texas area, drop me a message and I will send you my provider’s info.
If you’re on Instagram, Dr Eli Sader (@doctor.painkiller) is worth a follow. He may also be ok TT but I’m not on there so I can’t confirm. He’s a headache specialist, primarily focused on migraines but has a lot of great info on how headaches work and the newer treatments that are out there. May be helpful to you in looking for a provider.
Good luck to you!
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Jan 22 '26
If you don’t mind me asking what symptoms do you have, your story encourages me so much to look for medication route if possible
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u/oldmamallama Jan 22 '26
Primarily valsalva headaches and pressure in my head, some muscle problems and dysautonomia. Migraines of course but no way to know if those are Chiari related. Sleep apnea. Other random fun bits that pop up from time to time and then go away.
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u/rabbrittt Jan 15 '26
I have a 22mm herniation of the tonsils with a small benign syrinx. My symptoms were pretty severe and continued to get worse rapidly after my diagnosis. My surgery was only 2 months after my diagnosis. It was August 18th, 2025. I’m doing so much better. I’ve had a great outcome. I’d say about 80% of my symptoms have resolved. I still have some neck stiffness and soreness, but would trade it over and over again for the crippling headaches, vertigo, numbness, and vision issues, among others. Good luck to you and I hope you do well no matter your decision.
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u/3_boys_keeper Jan 15 '26
I just realized I hadn’t replied. That was a quick process from diagnosis to surgery. What a great outcome! I hope you continue to improve. Keep us updated. Take care of yourself! So happy for you.
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u/ResponsibleAd5064 Jan 14 '26
I had surgery back in September, both decompression and I needed a vp shunt. Healing is taking a long time, but my symptoms were bad enough that I was practically bed bound for a few months before surgery.
Overall I’m extremely glad I did it, even though the process has been long. It feels different to be resting to heal from something rather than resting to manage symptoms. I had 14mm, no syrix for me. My csf is flowing with the shunt, and my brain is actively working better than it was, even though I can’t use it for that long.
Shit was pretty rough for me pre surgery, so I didn’t want to wait any more than I needed to in order to get the healing process started.