Question Re Symptoms

I am 62 years old. My MRI demonstrates a 14mm herniation of the cerebellar tonsils through the foramen magnum. This is a relatively large Chiari I. I have no syrinx.

The malformation was discovered in 2008, with my only symptom being double vision, for a few minutes, on a few occasions. From 2008 until March 2012, I had no symptoms, not even a headache. There appears to be no change in my MRI from 2008 and 2012.

Suddenly, now, I have daily attacks consisting of panic, dizziness, some difficulty walking, an odd sensation in my thighs (slight muscle tension or a feeling of fullness), and neck pain without any headache. The neck pain began upon waking up in the hospital and consisted of severe spasm pain when I rotated my head at all. Now, after a week with a cervical collar it is improved, but still present.

Questions: Have any of you had neck pain without headache. I am suspicious that this is not Chiairi related? Do any of you have my constellation of symptoms? If so, what has helped, if anything.

Whether the neck pain is related or not, I can't tell you. I CAN tell you that was what sent me in for my first DR appt for a headache in YEARS was the associated neck pain. It was excruciating...just remembering it now makes me sick to my stomache. If my head moved at ALL, the pain took my breath away, I felt sick, and my headache spiked. My head felt like it was actually going to fall off my neck. Sounds overdramatic but it felt that weak and unstable, throw in the pain and I was a wreck. Freaked me out so bad, I made an appt, it had been there for 2 days and I had hoped it was just a migraine but it didn't get better and the neck pain was nothing I had experienced before, not at that level, not even close. I went for my first CT that day and they found the Chiari. I have never used a cervical collar, apparently they were supposed to put me in a soft collar when I left the hospital after surgery but the NS nurse didn't ask me about it until about 3 months after surgery when I was still reporting problems. Turns out, may have been a good thing, my PT says it would have weakened my neck muscles further and delayed my recovery. I assume it is different for different patients, differences in muscle/bone issues etc. I still have issues with my neck and 7 mos post-op have yet to recover full range of motion.

Thank you for the reply. As I understand it, you always had headache when you had neck pain.



REX said:

Thank you for the reply. As I understand it, you always had headache when you had neck pain.

Well, kinda. I started having migraines when I was a teenager. They usually presented the same way, that's how I knew it was going to be a migraine and not just a regular headache. I would get this...twinge in my neck, always started there if it was going to be a bad one. It would progress to the base of my skull, hang out there usually, if it really lasted a while, say more than 8-10 hours, it would then go up top the top of my head. So, place an imaginary steel band starting 2-3 inches behind your forehead and extend it over the back, to the base of your skull, and tighten it viciously at the very top of your neck like a collar. Viola, that was my headaches, they just started at the bottom and moved up. The neck pain associated with "The" headache, was more...seperate? It was part of the headache, but if I held COMPLETELY still, the headache would ease and my neck wouldn't hurt. Any movement at all hurt. A cough made me think I was going to die. Maybe not really DIE...but I wondered. Now, since surgery, it is a seperate animal indeed. Threw me off for a while, never saw my migraines coming because they presented different after decompression.

Rex,

I am so happy for you that you don't have headaches with a 14mm herniation. Your body has handled it well going this long without dibilitating symptoms. That's awesome. That being said your symptoms of dizzyness, difficulty walking, neck pain, thigh issues are all Chiari symptoms. 14mm is pretty significant and like Razzle said it doesn't get better on it's own.

Wendy

Did any of you have the surgery? Was it helpful?