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dan8819 07-15-2012 01:13 PM

Does this sound like Chiari symptoms?
Hi everyone, I'm a 24 year old male who has recently started having some strange symptoms. It started out of the blue, really, a few weeks ago. I noticed a growing sensation of pressure in my head, mostly around my right eyebrow and surrounding area. It would only become evident in the late afternoon and later. For a week or so, the symptoms remained; then they started getting worse. The pressure sensation intensified. The area affected seemed a bit larger. My face felt even a bit numb, or something--the sensation is hard to describe. I started feeling like my neck was a bit sore too. I chalked it up to sinus issues (this was all during a bad heat wave, and sinus issues were pretty bad for everyone).

I saw my family doctor, who did a sinus scan, which showed minimal sinus inflammation, if any. We did an MRI, which saw only minimal sinus inflammation as well as the Chiari-1 Malformation (about 5 mm), which had been just a "by-the-way" type finding identified about 6 months back (well before these symptoms) during an MRI. My neurologist told me, 6 months ago, that the Chiari was nothing to worry about.

Well, with these symptoms setting in, I'm growing nervous. I'm starting to feel more soreness/pain in my neck as well as a weird pressure-type sensation in the center of the back of my head, right at the base of the skull. The symptoms are bad enough that I haven't worked or driven anywhere for a week.

My next appointment is with a neurologist, but it's a month away. None of the doctors I've talked to so far have any idea what's causing the symptoms.

One other note: about 5 days before my symptoms began, I started taking Lamictal, as an adjunct for depression. Initially, I thought the Lamictal was responsible for the symptoms, so we decided to stop that medication after I was on it for just a week. It's been two weeks now since I stopped the Lamictal. Maybe it's related, but I'm not sure.

Other than the depression, and some mild allergies, I'm healthy. Any ideas? Could this be related to Chiari after all?

I posted this in Spinal Cord Disorders as well--I'm not sure the most appropriate category for this question. Thanks in advance!

ljt77 07-17-2012 09:54 AM

Re: Does this sound like Chiari symptoms?

I have Chiari and was decompressed in January 2012. My symptoms were similar to yours and went undiagnosed for many years.

It's very important that you try to get in to see a neurosurgeon (not neurologist) who specializes in Chiari Malformation. Neurologists tend to want to manage pain and are not very well versed in Chiari. The only real treatment for Chiari is surgery, and only a NS with experience treating Chiari can tell you if you're a candidate.

Some things to ask for are a full spine MRI to rule out syrinx and tethered cord. You can also request a CINE MRI to assess whether your CSF fluid is being blocked by your cerebeller tonsils. The blockage of CSF is one of the criteria for recommending surgery and was the reason I had surgery (no syrinx or tethered cord in my case). I did not have to have a duraplasty because the decompression of the bones and ligaments produced a dramatic change and my CSF flow began to correct itself immediately.

I still get occasional symptoms, particularly with changes in the barometric pressure. However, I would say that the surgery resulted in about a 90% improvement for me so it was completely worth it.

Hope this is helpful and let me know if you have more questions - good luck!

dan8819 07-18-2012 12:16 PM

Re: Does this sound like Chiari symptoms?
Hey, thanks for the post. It's good to hear someone else's story. Any recommendations for a good doctor or clinic that specializes in Chiari? I live in the Midwest, and though my city isn't that small, it doesn't have a very good base of neurologists in general, and none that my family doctor knows of that is familiar with Chiari. I'm assuming the neurosurgeons here are similarly scarce. The closest clinic I can find is either the one in Cincinnati or one up in Wisconsin. I'm hesitant to leave all of my care in the hands of a local neurologist who is unfamiliar with the condition. Any suggestions?

ljt77 07-18-2012 12:59 PM

Re: Does this sound like Chiari symptoms?
I am in the northeast, in Albany NY,so I don't have much to offer regarding specialists in the midwest, though I have read on other sites about Dr. Oro who is in Colorado...there is a Chiari Institue in New York as well. Many people find that they end up having to travel for the surgery and some are able to work with their insurance providers to get out of network coverage. I was lucky to find a specialist in my city who took my insurance, that's pretty rare from what I have seen. So if it boils down to a NS who isn't an expert versus going out of town and dealing with some potential hassle, I would say take the second option.

One of the things I really liked about my surgeon is that he took a conservative approach and did not decide ahead of time about doing a duraplasty. For some people it's truly necessary, but he was willing to wait to see what happened when he removed the bone and ligament tissue. What ended up happening is that my dura "outpouched" so dramatically as soon as he removed the ligament that there was no need to cut and patch the dura. There is some possibility of cranial settling in the future, but the complication rate is lower without duraplasty and my recovery was pretty swift. Everyone is different of course, and the fact that I did not have a syrinx or tethered cord made my surgery pretty straightforward. I was released after 2 nights in the hospital with 16 staples in my head and neck. They came out after about 3 weeks and I was able to return to work after four weeks.

I tell you all of this because Chiari is one of those diagnoses that can be pretty frightening, but can be successfully treated. There is no true cure, as I said I may have issues in the future with cranial settling, but for me, I would say the surgery was an absolute success. One symptom that you mention, neck pain, is one I had for years and didn't even realize it was Chiari related until after the surgery, because it went away!

bestoldies04 09-06-2013 12:34 PM

Re: Does this sound like Chiari symptoms?
The symptoms of pressure in the back of the head at the base of the skull, discomfort on the lower left and right side and pain in the back of the neck is very common with Chiari. You need to see a Neurosurgeon specialist that specializes in Chiai, a Neurologist should be able to refer you to one. Good luck.

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