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Chiari, cci and feeling hopeless

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Posted 10/5/2021 2:48 PM (GMT 0)
My mri showed that I have chiari and straightening of spine/neck. Still waiting on official word on whether I also have craniocervical instability. I’m confused about how you can have both chiari and cci but treatment options seem very different and sometimes opposed. Honestly I’m feeling rather hopeless. I know people said cci can lead to mcas, but does chiari also lead to it? Can cci cause chiari? If we correct straightening it neck/spine with physical therapy will it fix cci and chiari? Given all this we’re trying to get evaluated for Ehlers danlos syndrome too but who knows when I’ll get in with them.
Posted 10/5/2021 3:09 PM (GMT 0)
All the tests sound exhausting! If you have any of those things, though, it will be really good to know and be able to deal with it. I have a good friend with EDS, and she and I are dealing with all the same stuff, so it's not surprising that Lyme and EDS can be confused for each other, and I've also heard suspicions that tick-borne disease (or other systemic insults) can cause the Ehlers-Danlos symptoms to manifest in people for whom they had been very mild previously. An infectious disease doctor who felt that my Lyme tests were insufficiently positive (eye roll) told me I probably had Ehlers-Danlos instead.

Are you familiar with filmmaker Jennifer Brea? She made the award-winning documentary Unrest about her experience with CFS/ME, and more recently her symptoms resolved following surgery for CCI. (CCI can cause MCAS, and also all the other debilitating symptoms of CFS/ME.) There are lots of articles about her online because she's so famous in the chronic illness community. It's weird to say that I'm excited for you to find out if you have CCI, but if you do, then you have a shot at maybe getting better fast.

At the same time, finding out new stuff that's wrong with you feels awful. I hope that having some answers will feel at least a little bit helpful! But I know it's a lot to deal with.
Posted 10/5/2021 3:13 PM (GMT 0)
I had mris to check for Chiari - was told I didn’t have it - but had the straightening of the cervical spine.

I see an Upper Cervical chiropractor once every two months.
I would consider going to one for an evaluation

It’s gentle - no jarring twisting of the head/neck.
Posted 10/5/2021 3:33 PM (GMT 0)
Thanks Sarah and girlie. If I had found this out 10 years ago I would have been scared but excited. Now I’m just spent exhausted and want to give up… though my mind is pretty confused about what I means by give up….

Yeah I had heard of Jen brea. I’m wondering if I have tethered cord like her too.. Right now I mostly am wishing I had like 10 super moms and I could just turn into an inconsolable toddler till they fixed everything… oddly my wish doesn’t appear to be coming true. 😭
Posted 10/5/2021 8:25 PM (GMT 0)
lol Bailey I want the moms, too! I have had that same thought. This stuff can be SO much to carry sometimes.
Posted 10/8/2021 1:52 PM (GMT 0)
What are the treatment options they suggest for those two conditions and do the risks outweigh symptoms of the disease themselves? The one person I know who had surgery for chiari malformation had a neck shunt put in to try and improve her significant slurring of the speech.
Posted 10/8/2021 3:54 PM (GMT 0)

Brandiwine said...
What are the treatment options they suggest for those two conditions and do the risks outweigh symptoms of the disease themselves? The one person I know who had surgery for chiari malformation had a neck shunt put in to try and improve her significant slurring of the speech.

I’m not sure exactly, I haven’t had my appointment with the ordering doc yet nor have made an appointment with someone who specializes in either. Online it looks like chiari is just treated by surgery. I’m rather terrified given I relapse with no abx for 36 hrs about doing brain surgery snd have doubts about whether I’d survive or recover. We called one famous neurosurgeons office who treats this is my area. His office had one of those we never pick up the phone and we’ll call you back if we feel like it. It did not inspire confidence in something as terrifying as brain surgery.
Posted 10/8/2021 4:21 PM (GMT 0)
Please make sure surgery is the only option before getting it done.
I believe they remove part of the bone.


Have you suffered from symptoms due to Chiari for many years - or just since Lyme and CO’s?

Also - have you been to an Upper Cervical chiropractor ?
I would have a consult with one first.
Posted 10/8/2021 5:19 PM (GMT 0)
Yeah see I can’t figure out online if the chiropractors treat chiari or just cci. The only,local atlas chiro was totally confused about what chiari is though they knew what Lyme and cci were.

My guess is I’ve always suffered from from chiari even when I didn’t qualify a decade ago.

Post Edited (Bailey) : 10/8/2021 11:23:07 AM (GMT-6)

Posted 10/8/2021 6:20 PM (GMT 0)

Bailey said...
Yeah see I can’t figure out online if the chiropractors treat chiari or just cci. The only,local atlas chiro was totally confused about what chiari is though they knew what Lyme and cci were.

My guess is I’ve always suffered from from chiari even when I didn’t qualify a decade ago.

Hmmm - can you find another NUCCA practitioner? Mine knows about Chiari - in fact when I was wondering if I had it - I was getting adjustments with my chiro.
Posted 10/8/2021 6:22 PM (GMT 0)
Take a look

https://drdrewhall.com/blog/post/chiari-malformation-causes-can-neck-injury-be-a-causative-agent

And this;

https://ucstudies.wordpress.com/tag/chiari-malformation/
Posted 10/8/2021 9:45 PM (GMT 0)
Wow those are super helpful I’ll need to read them in more detail later. Thanks girlie! Yeah I suspect there were a couple incidents that might have messed up my neck a bit.
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