LOL! I guess I’m just so anxious to get her out of pain I’m overthinking it. When I look at her meds that she has been prescribed I do see Toradol and morphine for pain relief. Neither really helped. In two years these are the meds three neuros have thrown at her and NO relief: Sumatriptan, Naratriptan, Rizatriptan, DHE IV for 5 days in hospital, Thorazine IV for 5 days in hospital, Depacon IV for 5 days in hospital, Propranol, Neurontin, Aimovig monthly injection for 6 months, Gabapentin, Namenda, 30 Botox shots that made her headache worse, Benadryl with Compazine, Tylenol, Ibuprofen, Diclofenac, Venlafaxine, Depakote, Toradol IV in ER, Toradol oral at home, Zomig, Imitrex, Ketoralac in ER, Morphine IV in ER, Decadron, Thorazine oral, and Nambumeton, Zofran and Compazine for vomiting. Are any of these drugs typically prescribed for those with Chiari I?
Thank you for the suggestions of graded motor imagery and neurodynamic exercises. I will start looking in to them.
UPDATE TO THIS POST: I should have said that she has seen 4 neuros in the last two years and these neuros ALL said she had a migraine. ONE continual migraine for the last two years with never one day without a “migraine”. They have each prescribed the list of meds. I was only listing what I thought were the migraine specific meds but in addition to that they send her to psychiatrists because they say she’s depressed. Hello, she’s lived the last two years of her life in her room, lost friends because she couldn’t be relied on, lost out on going away to college and sits in her room taking online courses!
So…the list of meds actually goes on! I forgot her latest prescribed about 3 months ago for her “migraine”…Verapamil, and for depression: Elavil and Celexa together. Earlier anti-depressants were Effexor, Paxil, and other earlier meds: Tramadol (made her confused), Fluoxetine for anxiety, Phenergan for nausea, Concerta, or Ritalin for ADHD, Melatonin for sleep, and Riboflavin and Magnesium.
Yes, over the course of two years my daughter and I have been concerned with liver damage but “they” keep prescribing. We went to UCSF Children’s hospital for 1 1/2 years where they hospitalized her three times, botox, nerve block, and then when she turned 19 she was transferred to UC Davis seeing her current neurologist. I finally threw up my arms last month and said this can’t go on! It can’t be migraine every day for now 25 months and got into her medical records. I asked him to schedule an MRI for Chiari and he did so immediately but then when I pushed it and asked him to look for Syringomyelia he said “He would be glad to treat Nadia for migraine but if you want to explore Syringomyelia then you need to go to your PC.” Well then!
So, because her MRI notated 3.8 and 4.4 herniation we are just in the process of being referred to a neurosurgeon at UC Davis. I feel this is a good neurosurgeon because I accidentally got to talk to a neurosurgeon who recommended the UC Davis neurosurgeon for Chiari. How cool is that!..a neurosurgeon answered her phone and talked to me!!! She is not practicing anymore but recommended Dr. Lee at UC Davis so that is who the PC is referring us to.
My only last question is kind of answered by azurelle in the next post telling me to drop this neurologist. Gladly! I’ve just been thinking over the last few days that I didn’t need him now that we are being referred to the NS. We have an appointment next Tuesday that I want to go to though to see if he will eat crow pie!! Pretty for sure he won’t but I would like to see if he will order an upright flexion/ extension MRI and a rotational ct scan just to get a jump on things for the neurosurgeon. And, to cancel the spinal tap he wanted to do next month as I point out to him that spinal taps are counterindicated with Chiari. If he wants to just maintain the migraine story then we are out of there. If he wants to support us in the Chiari quest then I will consider rescheduling but we don’t need him, right?
My last real question if anyone knows is…can a neurosurgeon look at a CD with the MRI images on it and measure a 2014 and 2017 MRI for the tonsillar herniation because it was apparently under 5 mm and the radiologist didn’t measure it?