I have a 15yo daughter, diagnosed 12/15 with 3-4 mm cerebellar tonsillar ectopia, after having 24/7 frontal headaches beginning Thanksgiving week. NO med helped -- Naproxen 500, hydrocodone. Only Toradol pain shot gave relief, but only for about 6 hrs at a time. We are in Knoxville, TN. Neurosurgeon here -- Jennifer Savage -- does quite a bit of chiari surgeries, but said her best results come in patients with classic chiari headaches (back of head) and wanted to try conservative treatment with the neurologist first because surgery may not help the frontal headaches. No tethered cord or syrinx on spine MRI, btw. Pediatric neurologist was awful (wouldn't even look at the scans himself) -- MY personal neurologist agreed to see her. He feels ectopia may be even smaller after reviewing the scans.
She started Elavil 10 mg every night and has stabilized somewhat -- has mostly pain-free days for the last month with headaches occasionally spiking to 2-3 on the pain scale most days. Returned to school full time (was on half days) and playing softball, etc. She did have some weakness in her legs and hands right after starting Elavil, but the leg weakness resolved after a couple of weeks. Hand weakness is sporadic, but only when she's taking notes in class. The biggest side effect is fatigue for her.
The neurologist feels she may have had an undiagnosed concussion (she hit her chin diving for a ball in a softball tournament one month before the constant headaches started) and is now in a chronic daily headache cycle and should be doing better in a few months with medical management. I know a lot of neurologists say this. He is a great neuro (literally saved me a few years ago), BUT he said he has lots of patients who have ectopias on MRI who don't have chiari and it's just the way they're made. He said he has only a few who are true chiari patients. He is very serious and listens to every thing we tell him, takes it all in and explains everything thoroughly, so he's not blowing us off, but I'm concerned that he isn't taking the ectopia seriously enough. I would love for him to be right, but the internet and FB groups scare me about all neurologists being ignorant about chiari. Oh, and she does do headache PT and it does help her -- electro acupuncture takes all the pain away for hours after.
My question is: Does Dr. Trumble allow you to send records, symptom history, scans, etc and give an opinion via email or snail mail? I hear wonderful things about him and, while, my daughter is doing OKAY, she's still not 100%. If she needs a decompression, then, of course, we want to do that. You never want your kid to have to have surgery like this, but I also don't want her to constantly suffer. She is a very athletic, social child and every day I worry how she's going to feel and I see her working hard to be normal. We are so far away from Dr. Trumble, but in the day and age of Skype and email, I wondered if he does review things for patients in other states. (I wasn't sure if he sees kids or not)
Sorry so long!