I have a syrinx and can't find a doctor that knows much about it?

@kritter19
Can you tell us when and how the diagnosis was made?
Here is a link yo the Mayo Clinic information about Syringomyelia:
https://www.mayoclinic.org/diseases-conditions/syringomyelia/diagnosis-treatment/drc-20354775
Here is a link to contact Mayo Clinics to schedule an appointment:
http://mayocl.in/1mtmR63

2021 on mri. The neurosurgeon dismissed it and neck pain has gotten worse, headaches, Nausea, so much more. It's really long, pain management doctor thinks it could be reason for symptoms getting worse?

I have 33 year old child diagnosed with syrinx at age 16 with many symptoms there is a group asap.org with lots of info and drs as well as they have yearly conferences with physicians in all modalities related to Chiari and or syringomyelia. You get to meet others in same boat. Experts are pediatric neurosurgeons even for adults. For my child it’s pain management which allows them to have a life. Best of luck

Kritter19, you need a different neurosurgeon. Where do you live? If you can travel I'd try Mayo. https://www.mayoclinic.org/diseases-conditions/syringomyelia/doctors-departments/ddc-20354778 as Sue suggests with a different link.

My grandson, now 13, had surgery for his Chiari Malformation at age 5 1/2 at Mayo. The surgery was successful but we don't know if he has lingering symptoms as it's something he was born with and knows nothing different. He also has periventricular hypertrophia (gray matter disease) that has caused many problems. He is special needs naturally and also will have surgery for uneven development in one leg in the summer of 2025. The doctors who have treated him all these years have been wonderful.

There is an organization called the Bobby jones chiari & syringomyelia foundation. They do a lot of research and r well connected with various medical doctors, neurosurgeons, etc. great resources! look them up on YouTube. They post a lot of informational helpful stuff. I also know of a few top surgeons on the east coast who specialize in syrinx of brain and spinal cord, syringomyelia, chiari and EDS. I'm about to go see Dr. Fraser C. Henderson Sr. for my atlantoaxial instability and chiari malformation and I did a ton of research before deciding on which neurosurgeons to go consult with.
There is another doctor, Dr. Paulo Bolognese in New Jersey or Rhode Island (sorry I can't recall exactly rn because he has worked in both areas) but anyway, the hospital group dr. Bolognese works with now specializes in only these exact brain/brainstem/ CSF/ spinal cord syringes, syringomyelia and syringobilbia, as well as all the usual associated comorbidities too. there is info about him and that hospital group on YouTube too. I've also heard of a Dr. Myles Koby that is well known in this field as well. hope these names help! and trust me- if you have the attention span for it, you can get excellent academic, scientific, medical information on YouTube. since it is such an underappreciated area of Neuro medicine, it's not like you'll have to sift through endless info and be forced to choose semi blindly. You can get names, contact info, and other very specific helpful info from medical doctors & other professionals on the circuit by watching a few of these doctors speak

I watch a lot of lectures from syringomyelia and chiari..... Very good information in those. That neurosurgeon that basically dismissed it.....ever since then I feel weird even mentioning it because I felt so dismissed it's sad. I wear a soft collar at home because sometimes I can barely hold my head up. I live in missouri but my dad lives in Minnesota and that's why i was asking questions about getting an apt at mayo cuz i could go see my dad and do apt at same time

I love the Bobby Jones YouTube channel!

So do you think going to one of those doctors specifically is best? I've called 2 more neurosurgeons locally and asked if they specialize in syrinx and syringomyelia and got a no not really and a well the doctor treats all things related to the spine......the lady who answered the phone had never heard of syrinx and apologized for not being of much help:(

You could have atlantoaxial or craniocervicalnonstability happening simultaneously just based on the symptoms you listed bc they r same as me and I have no syrinx but I do have atlantoaxial instability and subluxation. I believe all of this is unfortunately not covered enough in med school or something bc I had several top neurosurgeons and neurologists completely miss this for 4 years until I had to figure it all out myself. There is a Dr. Atul Goel who is rated the #1 top neurosurgeon in India and for a few years, he ranked and was awarded an award for being literally the best neurosurgeon in the world. Anyway, he also tackles the atlantoaxial instability problem and he has published many great works on the topic. I watched a lecture of his just today on atlantoaxial instability where he delved into the associated co-morbidities & related problems of this undertreated & under-recognized condition. One of his beliefs is that syringomyelia and syrinx, as well as chiari- are all not just separate "bad" clinical entities, but they are divine natural protection that our bodies create as a defense mechanism to the primary problem of atlantoaxial instability, Subluxation, or dislocation. he claims, and has the literal perfect record of his own patients' success to back his claims up- that he doesn't look at these particular presentations as malformations at all, rather the body's protective mechanisms in response to the AAI or craniocervical instability, to save us from acute sudden death or further brainstem sagging. He also claims that he has abandoned all decompression surgeries now because of this. He claims that once the spinal instability is fixed, the syrinx will go away naturally on its own without requiring any further surgery to address it.
just wanted to share this precious info in case it serves relevant to you! Don't know all your details of the situation but I can say after 4 years of me living with what I have and being gaslit by soooo many doctors simply because they don't understand enough (if anything) about this particular presentation occurring in brainstem or spinal cord