Chiari Malformation

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Dental Care and Chiari Malformation

I always dreaded the dentist. See, I don't tolerate novicaine well and for me, it usually requires many shots to numb me up. Even then, there are side effects. Rise in blood pressure from anesthesia, anxiety, jitters, pain, aches. The dentist hasn't even been to see me since trying to numb me up, other than I can hear them yell from another room - "Is she numb yet?" So by now I can't feel most of my face, I'm excessively drooling, I've lost my time slot for care, and I have the jitters (all of which I am desperately trying to control). Stressed and more anxious. I dread the dentist.

Two years ago I had a cracked molar which needed extraction and an implant. I was stressed about it, my pain level had been in total B!tch gear for over a year putting it off, and I was trying to conjure ways to avoid that day. Well, one week after this horrible experience of oral jackhammering, I developed a chronic case of vertigo. At the three month mark I just couldn't take it anymore and my PCP sent me for my first Brain MRI. "You have Chiari Malformation, do you know what that is?" "No, I'm not familiar with that, should I be?" And my journey has begun...

Dental context: I have known for 10+ years that I also suffer from TMJ and so I frequently ask the dental staff for breaks or to use a bite block to take pressure off of my jaw muscles. Only that day, because of the procedure and it being the back molar, I had to keep my mouth open further and longer AND my head was way back. This lasted for approximately 4 hours. My current team of doctors believe this was the 'perfect storm' to reveal my CMI condition. Now please understand I have suffered for more than 20 years with odd symptoms that no doctor was able to define. This one day was my curse and blessing. I finally was able to hold on to a symptom long enough to acquire a positive test result, and finally put a name to the condition(s) I have suffered with for so long.

Be your own advocate, speak up for yourself. Think about the cause and effect of actions. Little did I think that laying back in a chair so I could have my teeth cleaned and repaired would result in the scariest news of my life. I now remind the dentist/hygenist each and every time what my challenges are and that if I should need to speak up, there is no negotiating - I must take a break.

Do you have a similar experience? Please share your thoughts and ways in which you cope with dental examinations/procedures.

#ChiariMalformation #ArnoldChiariMalformation #ChronicPain #EhlersDanlosSyndrome #TemporomandibularJointDisorders


I'm new here!

Hi, my name is Dreah21. I'm here because I recently found out that i have or might have chiari malformation as I read all you guys stories my symptoms are starting to make sense. I have really s***** insurance so I'm on a waiting list to see neurologist I've been dealing with head pressure for a little over a year and that is what got me concerned. I wake up with head pressure and it's there all day and when I go to sleep but I also have the tingling in my arms and legs the whooshing sound when I lay down the heaviness in my head when I go on rides or bend over I even experienced the situation the lady explained while she was pooping. I'm just here to learn more and be in contact with people who are struggling with the same issues as I. Praying for God to heal us all and sending positive vibes to each one of you.

#MightyTogether #ChiariMalformation

2 reactions 1 comment

Hi I’m new here!

Recently diagnosed with Chiari 1 malformation and Syringomyelia (so recent I’m struggling to pronounce them 😂) here to learn from others and try to understand what my future holds #Syringomyelia #ChiariMalformation

3 reactions

I'm new here!

Hi, my name is Khaleesi22. I'm here because my daughter was just diagnosed with Chiari Malformation 1 and has a very small syringomyelia. Life has been very hard these last few months but my daughter is getting back to herself. I'm here to learn. Thank you


5 reactions 2 comments

I'm new here!

Hi, my name is Amanda_42. I'm here because I have just recently been diagnosed with Chiari 1 Malformation/Syringomelia.

I am trying to learn a little about the conditions without going down a vicious rabbit hole. I have been struggling with focus and concentration for quite some time now and it's really affecting my job! I have not been able to be productive, both at work and at home. I am just curious, for others with these conditions, do you struggle with focus and concentration?

Thank you so much; I'm really happy to have found this group!
Much love and support,

#MightyTogether #Anxiety #Depression #ChiariMalformation #Syringomyelia

9 reactions 2 comments