My craniocervical instability (CCI) & chiari malformation diagnosis
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- Опубліковано 21 січ 2019
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You never cease to amaze me with what a positive attitude and how much strength you have even though you are suffering so much. I can’t imagine how overwhelming this must be, it is a very big decision. But I am praying for you always, and so are so many others. You’ve got this girl! Keep it up. 💚
Thank you for sharing all your videos. I’m 35 years old and have Chiari Malformation, DDD, cervical instability and herniated disks in my neck. I have been post posting the surgery but I have been fainting, had cardiovascular issues , palpitations and lots of vertigo. It has been progressing in ways I cannot imagine. My neurologist, PC and neurosurgeon believe all the symptoms are related to my CM and cervical instability. The surgery has to be better than what I’m going through now.
I felt strongly that I should comment. First, you broke my heart. Being so young, and I see such amazing strength in you. I too have Chiari malformation along with many other conditions. My body always feels it is fighting itself. Just now seeing an allergy/autoimmune specialist and broke down on him today. Because he understood me, he could see my suffering and acknowledged it. Now more testing and blood work. Praying, like you, for answers. Praying for you and your journey. That the doctors are able to help you in regaining some normalcy.
This is so helpful...thank you! I have hEDS POTS MCAS CFS and hemiplegic migraines. Im looking into CCI. God bless you on this journey.
i’m so glad this was helpful for you! sorry to hear you have eds too 😓 all the best to you + i hope you can get help/treatment soon!
So glad your vlogging. Thank you for keeping us updated🙏❤
Aww, thank you! 💙
so so happy that you’re getting answers - even if they’re really scary ones. always praying for you sweet girl 💚
Thank you sweet girl 💙 Always praying for you, too! #wegotdys
I've loved following you on Instagram, and am excited to see more from your UA-cam channel! I have Chiari as well. So glad that the neck brace is giving you some relief!
Aww, you are so kind, Kaitlin, thank you! 💙 I'm sorry to hear you have chiari too :(
If something like the perin technique could work I would try that. I'm super cautious in avoiding these surgeries and skeptical it is exactly correct.
I hope and pray you have a bless life.🌹🌹🌹
thank you 💚🙏🏻
@@HealingWithRachaelhii
Thank you! I just found out about CCI from one of my 36 year-old son’s doctors. After two years of feeling sick and having neurological and psychological issues among many other problems, from mold toxicity (at his dad’s house, so he’s been living here with me) and then tick-borne infections such as Lyme. After Christmas of 2021, he got Covid and developed a plethora of physical health and psychological symptoms that seemed to get “stuck” with Covid. His headaches are so excruciating, he wants to die. I’m not kidding! His entire body aches from mast cell activation, he doesn’t want to ride in the car, go outside, except to smoke (He’s quitting, and is doing well on they.), wants everything quiet, and doesn’t want to watch TV, sports, visit with friends, etc. anymore. He just lies in bed and thinks horrible thoughts about how he’s scared for his brain and life (even though he wants his life to end because of the pain) and has nightmares.
I’ve been researching this, and he has EVERY single symptom that is mentioned, including a metallic taste, thinking food doesn’t taste good, smells things that aren’t there (sensory), and every organ and cell is affected. It’s heartbreaking!!!
I think I need counseling to deal with this, and his father still works because I think he’s staying away from reality. He does take him to therapy where he gets hypnosis, a mold and Lyme specialist who is also an MD, now a chiropractor who does upper cervical and he wants to try adjustments for a few months before he gets an MRI done.
My son will be gone before then if I don’t find the right doctor.
Do you have any ideas? We live in Michigan. Thank you!!!
He probably have cronic fatigue syndrome
Hope you feel better soon. I have had two surgeries in my cervical. I feel your pain:'(:'(:'(
How are you doing now? Do you get pressure headaches?
Hi Rachael, i also have this. Was curious if you get/got many cracking sounds in your neck/skull with this condition. I do and it scares me a lot.
Hi Rachael, did you have to get the rotational cervical spine ct scan?
Do you any facility that does this test in Texas?
Thanks so much for sharing your journey so far! I found your UA-cam from following jenthehooligan on instagram and I so glad I did. I am going through this same process right now and it is helpful to not feeling so alone in it when you can see someone else working through it in real time. Wishing you the best with all of it 💜 could I ask some questions via msg, about your seizure episodes?
Hi Jenna! I'm so glad it was helpful for you 💙 I hope you find the answers you need very soon! Of course, feel free to message me on here or on instagram :)
Gone to POTS -Have you had your surgery? If so, how are you doing.....Also does upright mri indicate instability? My flexion extension x ray is fine, but when I rotate neck side to side it feels so unstable...not sure if I should see what type of doctors. Neurosurgeon or neurologist or rheumatoid docs.... what do you think? Thanks....
@@alisa1741 Hope you have been finding more answers! I'm in similar boat as you... I *know* I've got cervical instability (and I don't want that to be the issue, but... Yeah, I'm trying to not ramble too much hehe), but my flexion extension upright mri didn't show instability (it was back in 2017 so I wonder if it would now or not)
Anyways, I just wanted to pass along the limited knowledge I've come across in my many hours of researching, trying to figure things out for myself, lol.
I think the imaging for side to side instability (I'm not sure, that may be the AAI while CCI is up/down, I'm not positive about that though, and I think both of those refer specifically to c1-c2... I'm not totally positive on that, though) but the imaging that's recommended (only basing this off of what I've learned from Dr. Google, lol, so I'm not sure), but I think rotational CT or I think the other one was dynamic x ray... I might be off on terminology, though, I've learned to Google to learn about what testing to request etc (my neurologist at least agrees that something is wrong, though she's been passive about figuring it out, but at least she'll order the tests that I want her to usually)
@@alisa1741 I *think* the type of doctor you'd want to see for diagnosis is neurosurgeon, though I've had, uh... Not great luck in finding any local ones to even be willing to consider that cervical instability could cause neurological problems, which... Is a whole other rant of its own, haha... Seriously drives me batty, cause I *know* I'm not as smart as a brain surgeon, I don't feel the need to be, either (especially since, ya know...neurological problems make thinking and learning way harder haha)... But I keep having TIAs (aka "mini stroke", it's not something that shows on imaging, only an actual stroke would show, and I'm super thankful I've not had a full on stroke, but it's beyond frustrating to just be told time and time again that I'm only 30 so I'm not having a stroke... I never said I was, anyways! But I agree, I don't think I'm having any typical stroke issues from blood clot or artery tear etc, and I'm thankful for that, I just wish they'd consider other things, like positional vertebral artery compression, which is my best guess at what's going on there)... But yeah, just... I think neurosurgeon is the type of doctor that would typically be the one diagnose, just don't let them get to ya too much if you're meet with ignorance and lack of critical thinking skills from many doctors.
Sorry I'm super hard to focus at the moment, but I hope I was able to give you some help finding answers!
I'd imagine any doctor who is willing to learn and can order imaging to help figure out what may be going on is the most helpful thing, though I hope you find some good help in finding answers!
Being a zebra has so many challenges and challenging decisions. Sigh and hugs.
it sure does! sending hugs back 🦓
How did you find your doctors? Do you know of a good resource to search for doctors who are specialized in CCI?
I'm very skeptical of correct diagnosis and surgery.
You look very beautiful in a neck brace when you smile ---now I 've got a thing for girls in neck braces--stay happy !!!!
Where is your EDS seen?
What age did all of these medical problems start? Did you always have seizures?
Hi there. What Aspen Vista do you use?
Emily Olsen Hi emily!! i used the TX 😊
@@HealingWithRachael Love your videos....Keep them coming. Informative with lots of hope...Blessings to you and your Fam. :)
Thank you so much Emily :) You're so kind. All the best to you!
How did they discovered instability? All my flexion extension is normal, but when I turned right or left I feel it’s so unstable and it feels like it’s moving too much.....
My CCI was found on an upright MRI with flexion/extension, but could be seen on supine too. Judging by those symptoms, you might want to look into AAI (atlantoaxial instability) of c1-c2. This was diagnosed for me with a rotational CT scan (looking left and right).
Gone to POTS -Hi I did the rotational CT for blood vessels cuz I been getting body numbness and the doctors order for them to have me rotate neck as far as I could. They had a pillow restricting me to only 20-30 degree... stupid me I didn’t realized it until I walked out of there and went home. The radiologist read it as “ Normal” but when this muscle is relax enough ( I also have arthritis) but when it want to rotate left or right I feel the instability like the the upper neck don’t want to connect with the rest of the lower cervical spine. Also with rotation it sometimes sit in different position. When it does this my jaw bite also get out of alignment.... many docs just want to give me a prescriptions.....so I’m still seeing different docs, to get answers. So frustrating.... Hope you are doing well and able to drive and shop and do what normal people can do... I can’t do any of it, due to pain and dizziness..etc... life is hell right now, I hope to get better cuz I don’t want to relied on my parents. Feel like a burden to them....
Make sure it's upright
Oh my gosh. You live in Utah? I am struggling so much with POTS, MCAS, and suspected EDS. I’m experiencing severe neck pain and I’m trying to find someone in Utah to help me with an EDS diagnosis. May I ask who you see?
I’m sorry to hear you’re struggling to find help! Unfortunately almost all my doctors/surgeons are on the East Coast 🙁 I’ve heard Dr. Jared Bunch in SLC is good for POTS! He’s a colleague of Dr. Coleby (who I hear is amazing but is not taking new eds/pots patients)
Gone to POTS Oh okay! That is really good to know! Thank you so much. Wow, do you travel to see your doctors every time?
@@forestque1531 most of us urschel even no money
You have red hair? So many with Dysautonomia seem to have it.
I don't n ihave it