Could these be Chiari?

Symptoms and Treatments
#1

Hi all!

I was diagnosed in June 2020 and am yet to see a neurosurgeon (Feb 2021). (Stupid Covid).

I get the what seems usual/most common symptoms headaches, dizziness and tinnitus (also on the waiting list for an ENT appointment too to see if they can help at all).

But am wondering about other things that I’ve always thought was normal as I’m so used to it now…

  1. Swallowing. I sometimes have difficulty swallowing, between forgetting how to swallow and the food feels stuck in the back of my mouth/top of my throat and sometimes it is like I can feel it traveling down my throat/chest, but also at times it hurts to swallow. Does anyone else get this?

  2. Pars Defect. Age 15 (I am now 26) after an MRI I was diagnosed with Pars Defect, from getting sciatica at such a young age they wanted to investigate. When reading through I am a little lost with the difference between Pars Defect and Spondylosis, which seems to be common amongst Chiari Sufferers. I still get the sciatica but have just learnt to put up with it, thinking that it was to do with the Pars Defect.

  3. Bone cracking. Most of my joints crack. It relieves a lot of tension and the relief I get from cracking is significant. The main areas are my neck and back. However, my hips usually crack a lot too, but recently I have been unable to and have been get a lot of stiffness and pain in them now.

  4. Sleep issues. I had colic when I was a baby, 9 month worth (sorry mum and dad!) and I have never been a good sleeper, I would sleep maybe 2/3 hours a night all through until I was about 13/14. I have also been told when sleeping in the same room as someone else, that I hold my breath in my sleep. I have noticed that I occasionally hold my breath unintentionally in the day too.

Any thoughts/experiences/information would be so appreciated, having not yet been able to speak to a neurosurgeon I don’t want to waste my time with them on things that might not be relevant.

Thank you!

Suzy

#2

Hi Suzy,

I have issues with swallowing. Sometimes it is like you describe where I can feel food traveling down my throat into my chest and it just hurts. Other times, its like I choke/gag on air. And i cough ALL THE TIME. It’s like this really annoying tickle in the back of my throat and I just have to cough to make it go away.

Your sleep issues sound to me like sleep apnea. I don’t have that but I’ve heard that it can be another symptom for people with Chiari. You should talk to your doctor about getting a sleep study done and be tested.

Good luck!

Suzie

#3

Hi Suzie!

Yes, that’s exactly it! I know exactly what you’re talking about. I’m not a huge cougher, but when I do have a weird hiccup thing after, which happens if I cough or sneeze but also just randomly too. But there was me thinking that it was normal!

Yeah, I’m definitely going to mention that when I finally get the opportunity too! Funnily enough, my dad has sleep apnea too so that thought did cross my mind to ask about it.

Thank you!!

Suzy

#4

Hi! For the bones/joints, I would look into EDS, it’s a connective tissue disorder and sometimes causes chiari/they go hand in hand.
Also, what is your dizziness like?

#5

Hey,

I shall have a read up and ask for about that definitely thank you.
I have horrendous dizziness. I’ve been put on an antihistamine for it and they seem to be helping. Not enough to completely stop it, but I have less dizzy spells now, and they are also less severe which is nice, I’m not falling over so much anymore!

Suzy

#6

Hi - I definitely have swallowing problems. It is a common symptom, especially among children. My main swallowing problem is with liquids and with initiating the swallow. I’ve always been a “slow swallower” meaning I can’t gulp down a glass of water, I have to take it mouthful by mouthful. I’ve had a swallowing study done and all they could determine is that my swallowing reflex doesn’t kick in as fast as it should. I also tend to choke more than the average person and I am forever getting tickles in my throat. All of these issues are very bothersome. But of course no one has ever connected these to chiari because I’m only borderline, therefore it’s not important. Ugh, so frustrating.

My sleep is horrendous, though I have no idea if this is chiari related or not. I wake often in the night, sometimes I’m awake from 2:00-6:00 and will then fall back asleep for an hour or two. I often wake with a terrible headache and/or neck ache which will go away after I get up and move about. I agree with the above, sounds like you may have sleep apnea. I went through a sleep study once but of course I couldn’t sleep, I got about 2 hours that night.

#7

Hi,
I have swallowing issues. It’s weird cuz it’s not all the time, it comes & goes! I swallow & it feels like my esophagus just stops working. It then hurts so bad like there’s a knife being stuck & spun into my chest. I usually have to pound on my chest to give it a kick start. Then I have an airy burp. It happens with both solids & liquids.

I have issues sleeping. I was tested for sleep apnea but again it’s something that doesn’t happen all the time. They said mine was mild.

My joints Crack but honestly I thought it was due too aging. Maybe I’ll bring that up at my next neuro appt.