Some info on Syringomyelia

I have had what I thought were seizures for the past 4 years. I ended up in the ER last month with symptoms and in the hospital for 4 days this month. No one has ever figured out what was going on with me all this time, until I went to my new neurologist Dr. Sayed Monis in Brawley, California. First of all I was diagnosed with Chiari in 1998 and had decompression surgery. I had a syrinx that was quite large and the surgery took care of that up until 4 years ago. They found it again in an MRI but thought nothing of it. Now, this Dr. Monis says that it is not the seizures, or that I'm even having them, but the syrinx. I have been having spasms, trouble swallowing and trouble with my tongue and weakness and numbness mostly on my left side. The info I've learned for treating the syrix is not to have surgery, but just treat it with meds. Right now I'm on steroids for swelling and Baclofen for spasms. Touching the spinal cord will only cause the syrinx to enlarge more and cause paralysis. Basically we have to live with it and do the best we can with what we have. I trust in my Savior for the rest. I have assurance that all will work out and pray for all of you that are going through all of this. I hope this info helps you in your recovery.

Hi, Sabrina.

Thanks for sharing additional information on syringomelia with our community. It seems you were fortunate to have discovered the issues with the syrinx to avoid serious injury. Hopefully, your experience and information will help others here as well.



I was having your symptoms and I had to sleep sitting up because it felt like I was gagging. My syrinx was from c2-6. I had the decompression surgery and a laminectomy. I was admitted for surgery on my consultation at UCSF. I regained some of the paralysis after the surgery and I'm no longer gagging. My syrinx has reduced to c2 only and has managed to stay that way. I'm on my second year post-op. I was informed that I have to have MRIs periodically throughout the years to monitor the syrinx and if it gets bigger then a shunt would be appropriate.

Below is where I get most of my information and it has helped me become a stronger advocate for myself because this is not an area that most physicians specialize in.