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Hi, my name is Coco33. I'm here because
I have been Diagnosed with Arnold Chiari Malformation.#MightyTogether #Anxiety #Migraine
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Arnold-Chiari Malformation
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Arnold-Chiari Malformation
Arnold-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
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Would anyone watch YouTube videos
Hey everyone, I have been thinking about starting a YouTube channel, mainly to make videos about hacks and tips to living with a Chronic illnesses, but also thinking about doing some vlogging as well To show what it’s really like to be chronically I’ll , would anyone be interested in watching? Or have any video ideas? Would really like to start it but I am scared that no one will watch haha, any thoughts are welcome😊😊 #EhlersDanlosSyndrome #ArnoldChiariMalformation #Syringomyelia #Gastroparesis #ChronicVestibularMigraine #Dysautonomia #AutonomicDysfunction #Anxiety #Spoonie #Vlog #spoonielife #PelvicOrganProlapse #ChronicPain #Hope
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What’s on your wishlist?
#EhlersDanlosSyndrome #chronicillnesseds
#AutonomicDysfunction #dysautonomia
#PosturalOrthostaticTachycardiaSyndrome
#chiarimalformation
#arnoldchiarimalformation #chroniclllness
#spoonie #invisiblelllness #anxiety
#chronicvestibularmigraine #gastroparesis
#syringomyelia #scoliosis #mightybookclub #PosturalOrthostaticTachycardiaSyndrome #MastCellActivationDisorder #AutoimmuneDisease
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Test result Tuesday #SpoonieProblems
I hope this little joke brightens your day✨
#EhlersDanlosSyndrome #ChronicIllnessEDS #AutonomicDysfunction #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #ChiariMalformation #ArnoldChiariMalformation #ChronicIllness #Spoonie #InvisibleIllness #Anxiety #ChronicVestibularMigraine #Gastroparesis #Syringomyelia #Scoliosis #MightyBookClub #ChronicPain
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I started a group! #mightygroup
I started a group for Chiari Malformation sufferers. Join me! #ArnoldChiariMalformation #Chiari #ChiariMalformation Chiari Malformation
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Feeling run down
How do you stop worrying about how everything is feeling and focus on your own mental health? I’m not in a good place. I’m constantly worried about every person in my life and feeling like I have to tiptoe around everyone. I can’t just let people feel their feelings because I don’t want them to be upset or sad but yet for some reason it’s ok for me to feel that way constantly. I haven’t been able to go to counseling in almost a month because of life. I have an appt next week but even then I feel like we talk more about how she can relate to me and things her kids have been through. Then I leave there feeling like I didn’t get anywhere. I’m in pain physically constantly and can’t get in to see a dr until November to get shots in my head. Physically and mentally I just feel worn out and don’t want to do it anymore but I keep doing it for my kids. I’m just so tired of everyone’s shit when I can’t even take care of myself. #Depression #ChronicPain #OccipitalNeuralgia #Anxiety #ArnoldChiariMalformation #IntracranialHypertension #Tremors
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Chairi Malformation Diagnosis
I’ve been dealing with undiagnosed issues for all my life but no one could ever figure out why I would pass out. For eleven years I had ever test except a ct and mri of my brain. Yesterday I went to the ER after passing out for the first time since being away at college. They did a CT and MRI, turns out I have Chairi Malformation.
As much as that’s great to finally know what’s wrong, it’s also horrible news. I was essentially told I need decompression surgery but my parents won’t pay for it until I get a second opinion.
I want surgery just for the slim chance of decreasing the severity of my symptoms but it’s also terrifying. There are so many things that could go wrong.
I’m also having to rethink so many things and I’m going to have to put my life on hold for surgery. I just started college, I don’t want to have to take a semester off. I may also never be a surgeon because I can barely stand for more than two minutes without passing out, I won’t make it as a surgeon.
I’m so scared of everything and I have zero support. No one in my life understands what I am going through physically and mentally.
#ArnoldChiariMalformation #ChiariMalformation #Chiari #chiari1
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This topic will not leave the front of my thoughts lately. It’s a daily struggle. #ChronicPain #ChronicIllness #chronicpainjourney
I have been on a self education journey about my Chiari malformation and the reality of my diagnosis and what I could be facing can be terrifying. But I don’t want to decide that I’m not going to improve or I’m not going to find a medication balance that might work for me. How do you find the balance between reality and hopefulness?? #ChiariMalformation #ArnoldChiariMalformation #ChronicPain
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