Chiari Malformation and Restless Leg/weak/painful legs

I was diagnosed with Chiari Malformation Type 1 in July 2011 and had surgery that September. The surgery helped my headaches (much less intense now and not constant) and a few minor symptoms I was experiencing (frequent hiccups, hoarse voice, shaky vision), but the issue with my legs has been getting much worse. My Neurosurgeon told me it was possible the surgery could help my legs but not everyone believes it is related to Chiari.

My legs are CONSTANTLY in pain. They feel like they're burning. They are very weak, like they feel after a very vigorous workout (I can barely remember what that feels like). Steps are very hard to climb. And my legs move almost always. They shake when I sit or lay and it gets far worse when pain is high. I feel like I have to walk around often even though I'm exhausted.

I'm wondering if I should see my Neurosurgeon again to discuss this or just talk to my Neurologist about the possible link. Any input??

Thanks!

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry that u continue to have these pains and no answers....may I ask, did they rule out Syringomyelia b4 u had surgery and tethered cord?

Restless leg syndrome is related as it I had been to a sleep clinic to rule out sleep apnea and they did ask about restless leg syndrome they r related and many with Chiari have one or both of these issues.

Did u have a MRI 1 yr post op? And does ur NS know u had an increase of these issues post op?

[Blessedmomandwife]

No syringomyelia prior to surgery. I had my post op MRI but the surgeon I saw is a leading Neurosurgeon and instructor at the hospital/medical school so is very busy and only a PA spoke to me about the follow up. Because my headaches are somewhat better, they are considering the surgery a success. The NS seemed to beleive that my leg problems (they existed prior to surgery) could be a symptom of the Chiari, but wasn't sure. My regular dr sent me to Neurology to see what they think. That Neurologist actually seemed to think it could be the Chiari. He is going to do a spine MRI to check for syringomyela b/c they never checked my full spine.

I'm thinking about requesting an appt w/ Neurosurgeon again to discuss. I'm tired of my regular dr and pain mgmt dr acting like I don't have a diagnosis and therefore seem hesitant to keep giving me medication. I live in agony and just want to be able to keep up with my daughter. I hope to get them to see the relation to the Chiari.

[selmaS]

  There r several other related conditions that may be at play here too...do make sure they ruled out Ehlers-Danlos, syringomyelia, disk issues, tethered cord, ICP, POTS.....not all NS's r aware or take time to look at these and the symptoms r similar as Chiari....this is y we also rule out lymes, lupus and MS, they have similar symptoms and upon first glance can appear to be neone of them.

Keep pushing for answers <3