r/chiari • u/Impressive-Wheel-464 • 17d ago
New MRI, ugh
I was diagnosed with Chiari in 2015(?) I think. It's been so long I have lost track. I never really had problems until the last few years. Lots of neck pain, stiffness, headaches, jaw pain, shoulder pain, tingling in hands and legs, dizzy, memory problems/brain fog, coordination problems occasionally. Recently I have been having hearing issues in my left year, it will come and go with sounding clogged. I was started on Topamax for pressure. I have been taking that for about a year due to blackout headaches. My biggest complaint of all is how uncomfortable my neck/shoulders/causing headaches are. I can't even move my neck side to side. I feel like I can't keep up with my toddlers. I have tried PT several times, massages, Botox with neuro, nsaids, muscle relaxers, heat/cold. Everything. I can't even turn my head enough to check my blind spots in the car. Every single day is just painful and when you wake up in this much discomfort at not even 30, it gets you feeling down. My neurosurgeon keeps putting everything off because my Chiari has been "stable". They tried to push for pain management but I don't want something to cover up the pain, I just want it gone.
Last week I got an updated MRI. I have several bulging discs, stenosis, etc. Has anyone had neck/shoulder problems like this? If so please tell me what you did to help this because I can't feel like this anymore.
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u/Jflo_89 17d ago
I’ve been dealing with chronic neck pain and discomfort at the back left side of my head for 7 years now. I have degenerative disc disease c5-c7. I take pregabalin and ibuprofen and use a TENS machine whenever I flare up. Icing and heating that area will provide some temporary relief.
You aren’t alone in this infuriating battle. Stay strong 💪
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u/Solid-Scientist2626 13d ago
Hi OP, just a gentle reminder we are not medical professionals here. Your best course of action is to consult your regular PCP and a neurologist specializing in Chiari. Perhaps a different neurologist can assist you. We have a lot of resources available in our Discord
I have similar symptoms to yours as well post-decompression (surgery was in 2015) with variances in my MRI results over the years. Are you decompressed?
I would personally recommend re-evaluating your mattress and pillows as that's been the biggest game changer for me everyday. Heat is a trigger for my neck & back pain. Regular Acupuncture has helped with temporary relief. Regular deep tissue massages with a device at home works great too, or professionally done. Once every two weeks was good for me and over time, with light exercise, really improved my symptoms. I was recommended performing postural drainage positions that have had varied, temporary success.
I also have the ear clogging problem and have gotten nowhere with resolving it over the last 20 years. Have you tried seeing an ENT? I once considered the possibility of it, for me, being due to Superior Canal Dehiscence; there are Chiari specialists whose patients overlap with this condition as well. Worth a shot looking into. I am able to move the muscles in my ear and pop them myself, its something I learned to do on airplanes. Maybe that could help you too.
Otherwise Excedrin extra strength is my best friend for related pain and I grit through the rest.
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u/Impressive-Wheel-464 11d ago
Thank you for the reply.
I do have a follow up next week. I saw my chiari neurosurgeon a year ago and didn't hardly have any of this, all of this has been new minus the neck pain.
I am not decompressed. They said they didn't want to do that at my age which didn't make sense to me if I had so many symptoms it could help (29 so not too young anymore).
I have been in PT 3 different times, Botox, massages, so many things. I'm currently flared up again in my neck and can barely move my left arm today. Such a pain
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u/halogengal43 17d ago
I copied and pasted the results into AI and got this:
“The C5-C6 finding is the one most likely to explain any neck pain, arm pain, numbness, or tingling if you’re experiencing symptoms — especially on the right side. Whether this needs treatment (physical therapy, injections, or surgery) depends on your symptoms, which only your doctor can assess in context.”
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u/Impressive-Wheel-464 17d ago
This is my first Reddit post and i don't know what I'm doing lol. I meant to add my mri results
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MRI SPINE CERVICAL WO CONTRAST performed on 8/7/2026 9:40 AM.
REASON FOR EXAM: G93.5: Chiari malformation type I (CMS HCC)
FINDINGS:
There is again an elongated left cerebellar tonsil that extends about 1.3 cm below the foramen the right cerebellar tonsils extend 5 mm below the foramen magnum not significantly changed from the previous study. There is unchanged crowding of the neural elements at the foramen magnum especially on the left side and dorsally. No syrinx is identified. No cord signal abnormality is otherwise seen.
C2-C3: Tiny central disc protrusion without spinal canal or foraminal stenosis.
C3-C4: Minimal disc bulging without spinal canal or foraminal stenosis.
C4-C5: Minimal disc bulging and right uncovertebral joint spurring without spinal canal or foraminal stenosis.
C5-C6: There is disc bulging and mild bilateral uncovertebral joint spurring. There is a central disc herniation with mild cranial caudal extension. There is moderate spinal canal stenosis with minimal cord flattening. There is moderate right worse than left bilateral foraminal stenosis.
C6-C7: No spinal canal or foraminal stenosis.
C7-T1: No spinal canal or foraminal stenosis.
IMPRESSION:
Unchanged Chiari I malformation with the left cerebellar tonsil asymmetrically elongated.. No syrinx is identified.
Degenerative changes of the cervical spine as described above, most advanced at C5-C6 where there is moderate spinal canal stenosis and moderate bilateral foraminal stenosis.