Chiari Online Support Group

Chiari or Spinal fluid leaks? I have Ehlers Danlos/hyper Pots

I’ve been disabled for 20 years with with diagnosis of fibromyalgia chronic fatigue syndrome and Lyme disease. My 22yr old son was diagnosed with pediatric fibromyalgia at Connecticut children’s Hosp and is now disabled with intestinal issues and chronic pain, dislocations, neurological issues that go way back. (Bell’s palsy, one seizure, balance problems, ocd and eventually aspergers)

My second sons birth was awful due to a botched epidural (the guy went in 7x …nurse almost fainted and then he proceeds to argue with me whether I had back surgery or not… I’d think I’d know if I had back surgery).
I Had an epidural leak from that and it wouldn’t heal. Symptoms never really went away.
2013 I had another surprise baby, (she’s now 4 years old with dislocations, growing pains, gagging issues, reflux, double vision, headaches etc.)
I knew that the pregnancy would be the end of me and so it was. I developed hyper pots (they thought I had preeclampsia) and slowly went down hill instead of recovering.
3 yrs later, one day in Jan ‘16 I developed dry flushing, migraine, vertigo, jaw pain worse, barely could turn my head, flashing lights, a deafening ringing in my ears that won’t go away. etc.

my theory: a week before this I was backing out of a driveway and had to twist and hold my neck to watch the car passing. then got a dizzy spell. I think I blocked off my “good side “ the side that isn’t herniated as much. The bad side is pushing into the brain stem, which is pushing into pituitary gland. All ventricles on that side are nearly obliterated.

I’ve basically been bed bedridden the last two years. Seeing doctors who tell me I had thyroid cancer, carcinoid syndrome and other things that didn’t pan out.

The neurologist told me I didn’t have Pots (even though his colleague said I did) but that I had stress! Shame on those docs! They just don’t want complicated cases… it feels like that anyway.

I recently figured out my whole family has Ehlers Danlos after my 14 yr old was flagged for Marfan and pectus excavatum. It’s so obvious but we do have a geneticist appointment scheduled.

I compared the mris from 15 yrs ago and this years. I have much less csf now compared to when I had the epidural leak 15yrs ago.

So my question is:
What do you all think is causing our issues, chiari or spontaneous spinal fluid leaks, or both?

I’m searching for a specialist that can give me some hope by trying epidural patches. I can’t stand the thought of being in bed permanently.
My 4 yr old asks me if I was ever “not sick”. It breaks my heart to see my kids suffer in chronic pain.

I wonder if my kids have leaks as well because they definitely have cranial nerve compression symptoms (deviated uvulas, reflux, aspiration (my daughter had to be hospitalized to remove aspirated food. They warned me that kids who aspirate once, tend to repeat… maybe because they are the ones who have compression of their palate nerves).
They have crooked eyes (strabismus which we spent $1000’s on ineffective therapy to correct), pupils that don’t dilate properly, insensitivity to cold, the list goes on.

The pediatrician told my husband I was a “google mom and need to stop” :roll_eyes:
I wonder what she would so if her kids were sick and no one cared?

I’ve sooo had it with doctors. My primary care dr knew of all our issues and is an osteopath with 3 patients with HCTD and never thought of telling me about it? Ugh

1 Like

I am so sorry to hear of your troubles and the troubles experienced by your children. I do hope that you are able to get skilled help. I am thinking of a specialist of a specialty given the complexity. Multi pronged approach with someone skilled leading the helm. Please continue the search as you and your children are so in need. Hopefully folks here can assist in finding an organization that can help.

Thank you. Everyone thinks my kids are fine. They don’t see them at night when the pain is real. Doctors don’t take people seriously when they list so many symptoms and still look beautifully healthy.
They call it “malingering”. I’ve come to hate that word.
We are taking them to see the geneticist in May. Also they see a doctor of physical therapy at the hospital who has coordinated the care of other children with connective tissue disease.
I hope they’ll be able to refer my adult son and I to other specialists in this area.

so sorry to hear about this… please know you are not alone.

I hope you get answers and help you and your children need.

thank you, working on it

thank you