Chiari Online Support Group

Introduction - Newly Diagnosed and Overwhelmed

Hello everyone! My name is Jewel. I wanted to introduce myself and share what I’ve been going through. I’m 22 years old and I started having headaches and other symptoms I now understand could be Chiari related (occasional hearing problems, eye floaters, neck and shoulder pain) back in October with all my issues predominately affecting the right side of my body. I thought they were stemming from a combo of sinus issues and bad posture, so over the course of the last couple months I saw an ENT and went to several acupuncture sessions, a massage therapist, and a chiropractor. Nothing really seemed to help. Then I had an episode where my vision blurred, it was hard to swallow for a minute, and I couldn’t seem to talk. I tend to be a bit of a hypochondriac, and I was also under the influence of medical cannabis at the time, so I tried to write it off as paranoia, but I ended up feeling so weird about it a couple days later that I checked into the ER two days later because my right hand wouldn’t stop tingling and my balance felt off. I thought I had had a mini-stroke. After two MRIs and a CT scan they determined I have a type 1 Chiari Malformation. My chart has been given to a neurosurgeon who seems to have some experience with this condition, but I have to have my primary care doctor formally refer me to him now for insurance reasons. Now I’m hoping that process goes smoothly so I don’t get redirected to a different surgeon with less/no experience. In the mean time I’m just trying to figure out how to cope and adjust my daily life to avoid making symptoms worse. My job requires me to lean over a counter, I do a lot of housework, I had intended to help my housemates start a garden, and I was just about to think about joining a gym and starting some sort of strength training program. Does anybody have any advice for making any of those things easier on my head and neck? Having to slow down has been pretty depressing for me and I would like to find a way to stay active and hopefully not give up a job that I genuinely enjoy. Thank you all for reading and I’m so glad I found a place to turn to for support. :sparkling_heart:

Hey Dreamboxjkr,
Although my situation is not Chiari related, It certainly has similar symptoms. I have a nasty growing in the very centre of my brain. My condition prevents the natural flow of fluids within my skull and causes me sorts of ‘fun’n’games’, if you can call them that. I often try to make light of it all to others ie “…Ahh, it’ll be right…” but internally I battle each and every day. I get so sick of trying to explain it all, I can’t image how depressing it would be to others if I was honest every time some asked how I am. Some people tell me 'Ohh, you look awful" I just laugh and say “You want to have a look from this side…” What they see is a milli fraction of what I’m trying to manage or I say something silly like “Nothing a bullet wouldn’t fix” or “if you kept an animal in this state of health you’d be charged with a crime, namely animal cruelty”, then laugh. I find if I do too much today I’m paying for it tomorrow and I really do look awful.
Like you I haven’t liked the fact I need to be pacing myself, in fact I hate it. Under ‘normal’ circumstances I had 2 speeds, full throttle and stop, but I can’t be doing that any more. Something I have found since my last surgery is that if I get my head lower than my heart (ie bending at the waist) I get a pounding head, dizzy spells and eventually I pass out. I now need to use my knees, keeping my head above my heart. This helps to manage it a bit, but doesn’t resolve the situation. If I’m in the garden weeding, rather than bending, I get a bucket for the weeds, sit on my butt and weed around me, so I’m not up’n’down with each arm full of weeds. I’ve had to find other ways to do tasks.
A word of warning though, I wouldn’t be mentioning cannabis nor hypochondria to the dr’s. They will use both of those as a causative reason for your symptoms and that occurs even though you have had a medical diagnosis. Tell them of your symptoms and allow them to work a diagnosis from there. The less ammunition they have to fire back at you the better.
Please do let us know how you go with the dr’s

Merl from Moderator Support

Yoga is helpful, so is brisk walking if you can without feeling lightheaded or dizzy. Heavy weight bearing exercise might be problematic and exacerbate symptoms. Before my surgery and symptoms showed up I was a long distance runner and avid cross fit person. It was brutal having to stop both of those things in the months leading up to surgery. I am back to doing modified cross fit since surgery a year and a half ago, doing Iyengar and Bikram Yoga as well as running again.