These are my 20 year old daughter’s symptoms…
(* for symptoms which seem to support Chiari)
- Born with mild encephalopathy due to hypoxia at birth according to birth records.
- Adopted by me at 11 months old from Russia so no family medical history.
- Neuro consult at 3 yrs old because I was concerned about fetal alcohol syndrome (FAS).
- Diagnosed with *mild celebral palsy, mild encephalopathy, *sleep apnea, and ADHD. Only had Fetal Alcohol Effect, not full syndrome.
- MRI with and without contrast on 3/14/2002 showed *Borderline Cerebellar Tonsillar Ectopia.
- Sleep apnea corrected with tonsillectomy and adenoidectomy to give more breathing room in her throat which might also IMHO have helped negate any future swallowing problem.
- Diagnosed with mild *scoliosis at about 12 or 13 years old.
- Began having *afternoon headaches around 11 yrs old. Was told a result of ADHD meds. Also started being *dizzy when rising and was told it was normal at puberty and would adjust.
- At 15 had first full blown “migraine” (as was diagnosed) with dizziness, nausea, and vomiting. It lasted 2 weeks. Went back to same neurologist who saw her when was 3 yrs old. He suspected Chiari & did second MRI without contrast on 2/22/2014. MRI results read: No Chiari malformation identified. On flexion and extension and neutral position, CSF sagittal flow imaging at the foramen magnum, there appears to be CSF flow seen along the anterior and posterior margins of the foramen magnum.
- 7/9/2014 Second sleep study done. No obstructive apnea observed.
- Saw this neurologist for four visits over 8 months but then insurance changed. I just got his records this last weekend and by the last visit on 10/15/2014, he writes that even though the MRI was negative he still needs to rule out progressive Chiari.
- In next two years she would experience more low level headaches spiking to the 2-3 week migraines (as they were diagnosed). No specific meds would help, they would just end.
- 2/15/2017 she fell down steps at home hitting back of her head on the stair.
- 2/15/2017 began a headache that over two years later has never ended! Started out at pain level 5 and has to progressed to normalized pain level 7 - 8 with some weeks being 9 - 10.
- Barely finished high school in May 2017 with Hospital and Home program.
- Has bouts of *dizziness, *nausea, *vomiting, and most of time usually *fatigued. Can no longer have a social life & has basically lived in her room for two years.
- 3/01/2017 Admitted to UCSF for 5 days of DHE infusions every 8 hours - No relief.
- 4/20/2017 Occipital Nerve Block - no relief
- 5/10/2017 MRI w/o contrast read: The craniocervical junction and other midline structures demonstrate no abnormalities. It was done at the same place and compared to the 2/22/2014 MRI.
- 6/22/2017 30 Botox shots - made it much worse.
- 7/31/2017 admitted to UCSF for 5 days of Depacon infusions every 8 hours - No relief.
- 8/16/2017 saw holistic chiropractor who made a *neck adjustment that greatly relieved the pain for 2 - 3 weeks however pain came back and no further adjustments helped.
- 1/29/2018 admitted to UCSF for 5 days of Thorazine infusions every 8 hours - No relief.
- 5/2018 Transferred to UC Davis Neurology adult headache specialist. He has only prescribed different meds to try - none of which has worked.
- Bending over or laughing makes headache worse.
- Laying down does not make headache feel better. Ice to back of head soothes headache.
- Approximately 6/2018 her *left shoulder started hurting. Primary Care doctor said pulled a tendon. Has now progressed to tingling down her arm to her pinky finger.
- 6/15/2018 UC Davis doctor prescribed Aimovig which is the first migraine medicine aimed at lowering a brain chemical called CRGP which is overproduced in migraineurs. This looked like it worked because it lowered the headache for a while but over 6 months the result didn’t hold.
- Been to ER 15 times in 2 years for headache pain but minimal help with Toradol IVs.
- Saw primary care dr for *hurting left shoulder and now *tingling in both arms. She did a biceps reflex test and both arms responded too much. Dr said indicated brain overreacting. Also asked her about Chiari but she deferred to the neurologist.
Messaged UC Davis neurologist last week asking him to do an MRI to check for Chiari I and Syringomyelia in case of Chiari 0. He says because last two MRIs were negative for Chiari he will not order a new MRI (even though last MRI was a year and a half ago and headache has lasted for two years!). He says there is no Chiari 0!
Well? I felt really good when we finally discovered Chiari and felt it all falls into place! Doctor says to remember that “many symptoms are not specific and can be totally seen with migraine”. Whatever that means. Really? Is scoliosis seen with migraines? Is sleep apnea seen with migraines? Is shoulder pain and nerves tingling seen with migraines? Is NO response to an Occipital Nerve Block or Botox seen with migraine? Is no response to migraine meds seen with migraines?? NO migraine medicine has worked. NO epileptic seizure medicine has worked. NO new CRGP migraine medicine worked. NO over-the-counter pain med works and has not given my daughter any pain medicine in two years due to rebound headaches.
Sorry I’m going off the deep end here but we are pretty sick of my daughter being sick and not finding a doctor willing to go out on a limb to rule things out. Any encouragement or even discouragement of running after Chiari would be greatly appreciated.