Oh Mimi, I am so sorry your doctor was such a jerk. Go to (if the link doesn't show Google American Syringomyelia and Chiari Alliance Project) to get good information. You should only deal with a doctor who actually knows what Chiari is, how to deal with it, and what options to give you.

Like you, I was very symptomatic. I opted for the surgery because I couldn't deal with the symptoms anymore. The Chiari stuff was fixed, but they also discovered I had Syringomyelia and the spinal cord damage done couldn't be fixed and the syrinx just can't be fixed/changed, etc.

I'm still in the midst of waiting for testing results now. The neurologist that my neurosurgeon sent me to is extremely thorough. I've had MRIs not only on my brain and cervical spine, but on my lumbar and thoracic spinal cord as well. Plus I had the longest EEG of my life last week. LOL Now we wait to get results. My weakness is getting worse, the double vision is happening more often and everything wears me out. I'm hoping THIS time a doctor will figure something out sooner, rather than later. If it is MS they need to start me on preventative meds asap as I'm sinking fast and I don't have time for that stuff. I'm a wife, mom and artist and have far too much to do to let anything get me down.

Please make sure you go find a new doctor. The website I gave will be able to give you options in most areas of the US.

Keep me posted on how everything goes. It sometimes takes me a few days to get back here to check on things, but I will come back to see how you are.

Thanks for your help

I scheduled two appts with two different neuros for their opinions. I live in NJ. I'm going to try Philly docs (Penn and Jefferson) to hopefully get some answers. I too am a mom, and work as a nurse. I'm not sure if I should keep both appts or just pick one??

Can I ask you a question? Did your neuro see the syrinx on your MRI? There was no mention of that to me. I'm just very curious what causes my symptoms (numbness, have altered sense of temperature on some extremities, and slight dizziness at times). Would a rt sided chiari cause these symptoms or a syrinx?? That's where I get confused!

Thanks again for your help. I know I am new to this but I'm here for you if need someone to talk with

For now, I'd keep both appts. You can always cancel the 2nd one if the 1st new Neuro makes you feel comfortable with his/her level of knowledge/compassion.

My syrinx was definitely spotted on the MRI by the NeuroSURGEON. None of the Neurologists I'd seen over the years, that had MRI'd me, had seen either the Chiari Malformation OR the syrinx. And looking back at some of the older MRI's, they were definitely both there.

Since I went so long undiagnosed, it's hard to know when the Syrinx formed. There are actually two different types of pain relating to them. The Chiari always felt like I had a vice grip on my head and it was squeezing and causing migraines in the back of my head. The pain radiated to my shoulders and upper back. I was (and still am, but due to other diseases) very clumsy. Always tripping and falling and dropping things.

The Syrinx pain. Well...that feels like I'm being ice-picked in the back of my neck. I have to keep myself under tight control at all times, because even the narcotics can't get me below a 7 on the 1-10 scale. I'm always in excruciating pain. But if I keep a tight lid on it I can stay on top of the pain. I can live at a 7. At a 9 I feel like I'm going insane from the pain. The problem is that I spent a lifetime doing things that you CAN'T do if you have a syrinx. You can't do anything that causes your CSF (cerebral spinal fluid) to "surge". Like bending over and picking things up. Heavy things. Anything over 10lbs was forbidden to me after surgery. I am VERY symptomatic with the syrinx, too. Although it's hard to tell if that's it or because I also have Fibromyalgia, Osteoporosis, Reactive Hypoglycemia and Allergic Fungal Sinusitus along with this "probable" (dr's words) Multiple Sclerosis diagnosis I"m facing right now. It's what came first - chicken or egg type of deal for me.

I guess what I'm babbling like an idiot about is that some people don't even know they have these things until some trauma happens (car wreck, bad migraines, etc) and a great dr sees the Chiari and/or the Syrinx. Me? I grew up in pain, so we always knew "something" was wrong.

Your Chiari WILL cause the symptoms you are questioning for sure. Those and a "cape of pain" are all typical Chiari symptoms. I hope you can go to the website I mentioned above (but can't link as I don't have enough posts on this website yet for them to allow me link priviledges). You will get a TON of resource help there.

I hope you are having more pain free days than pain full.

Hey Mimi,

I wanted to come back and tell you that the test results came back and it wasn't MS. I have been diagnosed with Epilepsy. They also found a tiny cyst in the very center of my brain that they said is "nothing to worry about". Yeah...like I'm not gonna worry about that. LOL So now I'm on Epilepsy medicine (Keppra) and learning all I can about Epilepsy. My mom (a retired RN) says I never had anything that would make people think I had epilepsy, but I can remember in my 20s having this feeling of tensing up and tensing up and kept going til I got a POP! feeling and my entire body would do a big shake like a dog getting out of the bath. Then I'd be super tired and have to sleep for a bit. The neuro said those were seizures. I've only been on the medication for a week and last Saturday night I had a true grand mal seizure while asleep in bed. My family is a bit freaked out, as am I. The neuro said that the type of seizures I'd been having all along can easily flip to grand mal. Well, I flipped and now any seizure I have will probably be grand mal. BUT, it's just happening til my system gets enough of the meds in it, then I shouldn't have any more seizures unless I forget to take my meds. Believe me....I won't forget.

I hope you're doing well and getting answers...

(((Hugs)))