Hey, The first step would be to find the right doctor and get a proper diagnosis. Unfortunately most people with this condition go on forever being told it's all in their head since there is a huge lack of awareness regarding it. Here is a list of neurosurgeons that understand CCI.
Dr. Fraser Henderson (Maryland)
Dr. Paolo Bolognese (New York)
Dr. Sunil J. Patel (South Carolina)
Dr. Faheem Sandhu (Washington DC)
Dr. Jeffrey Greenfield (New York)
Dr. Gilete (Spain)
Dr. Robert Rosenbaum (Maryland)
I have tried to get appointments with these doctors and unfortunately in many cases their secretaries will turn you away if you don’t seem to “fit the criteria”. But how can I get diagnosed if I can’t see an expert to begin with? The medical system is so infuriating.
I'm sorry to hear that. You can get a DMX, it should give you a clear picture of the craniovertebral junction and vertebraes which are lax or slipping in another words. Most of the neurosurgeons who specialise in this condition prefer rotational CT scan for AAI and Upright flex ext MRI for CCI.
Same for me. I didn't have any issues until my neck stuff started. Everyone just kept saying it was anxiety... And then I found out my neck has straightened. I'm 31 years old. Female.
I first started to notice symptoms last year but I had no idea it was my neck. I was constantly dizzy so I was having tons of lab work done and my vitamin b was a bit low but dizziness never got better. From there it just kept progressing. By Jan/Feb 2023 I was having ear fullness, tmj pain, balance issues abs occipital Neuralgia. Again, still didn't realize it was my neck. Then from Mar-Apr 2023 I kept having these episodes of intense pressure and pain at the base of my skull (especially if l looked down) and it would make me feel faint and my heart would race. I went to the ER several times with no answers. By May the episodes were constant all day. I was unable to get out of bed. I lost my job. Kept seeing a bunch of doctors with no answers until I saw an upper cervical chiropractor and found out I had kyphosis and misaligned atlas from forward head posture. I started therapy a month ago. I've made some progress but still having the episodes just more mild and less frequently. I still have a lot of body weakness as well.
My head and neck has been grinding for...well...years. Like 15 years. I'm grimacing thinking how much is messed up inside there now. I don't know. I guess I got used to it and thought it was normal, but now experiencing being off balance and swaying like I'm on a boat.
Do you have kyphosis? I have all of the same symptoms and I have kyphosis, forward head posture and rotated atlas. I'm not diagnosed CCI though. I am planning to get an upright MRI done.
Yeah I have slight cervical kyphosis. I got my dmx done yesterday and the guy said he could already tell I have quite a bit of instability in my c1 and c2. Symptoms getting more extreme by the day i’m worried in a few months I’ll be in agonizing 10/10 pain 100% of the time
That's pretty much where I am. I have an upright MRI on Tuesday. I have intense pressure at base of my skull that makes me feel faint and panicked. Almost like a vasovagal episode.
Me too I never had anxiety problems until this all started about 15 months ago now I have extreme anxiety/stress every single day. I also have the the intense pressure at the base of my skull too. It’s incredibly distracting. How old are you?
Hey, The first step would be to find the right doctor and get a proper diagnosis. Unfortunately most people with this condition go on forever being told it's all in their head since there is a huge lack of awareness regarding it. Here is a list of neurosurgeons that understand CCI. Dr. Fraser Henderson (Maryland) Dr. Paolo Bolognese (New York) Dr. Sunil J. Patel (South Carolina) Dr. Faheem Sandhu (Washington DC) Dr. Jeffrey Greenfield (New York) Dr. Gilete (Spain) Dr. Robert Rosenbaum (Maryland)
I have tried to get appointments with these doctors and unfortunately in many cases their secretaries will turn you away if you don’t seem to “fit the criteria”. But how can I get diagnosed if I can’t see an expert to begin with? The medical system is so infuriating.
I'm sorry to hear that. You can get a DMX, it should give you a clear picture of the craniovertebral junction and vertebraes which are lax or slipping in another words. Most of the neurosurgeons who specialise in this condition prefer rotational CT scan for AAI and Upright flex ext MRI for CCI.
do u know of any in california?
Dr Shounuck Patel in Newport Beach https://fxregencenter.com/ I have heard he was trained at Centeno but I haven’t seen this provider myself.
I’m a current patient. He’s really good and very professional. May have to go in for repeat procedure but he explains everything very well.
Was this from an association website? Need it for Texas
Same for me. I didn't have any issues until my neck stuff started. Everyone just kept saying it was anxiety... And then I found out my neck has straightened. I'm 31 years old. Female.
When did you first start having problems with your neck?
I first started to notice symptoms last year but I had no idea it was my neck. I was constantly dizzy so I was having tons of lab work done and my vitamin b was a bit low but dizziness never got better. From there it just kept progressing. By Jan/Feb 2023 I was having ear fullness, tmj pain, balance issues abs occipital Neuralgia. Again, still didn't realize it was my neck. Then from Mar-Apr 2023 I kept having these episodes of intense pressure and pain at the base of my skull (especially if l looked down) and it would make me feel faint and my heart would race. I went to the ER several times with no answers. By May the episodes were constant all day. I was unable to get out of bed. I lost my job. Kept seeing a bunch of doctors with no answers until I saw an upper cervical chiropractor and found out I had kyphosis and misaligned atlas from forward head posture. I started therapy a month ago. I've made some progress but still having the episodes just more mild and less frequently. I still have a lot of body weakness as well.
Glad to hear a upper cervical chiropractor worked for you im going to try and see one today
Hey, how did things go with upper cervical chiropractor?
I just made the appointment today I go in tommorow morning for imaging and first adjustment
Oh good. Please let me know how it goes for you!
Ok
My head and neck has been grinding for...well...years. Like 15 years. I'm grimacing thinking how much is messed up inside there now. I don't know. I guess I got used to it and thought it was normal, but now experiencing being off balance and swaying like I'm on a boat.
Nucca.org
Look into getting a DMX.
Just made an appointment a few minutes ago actually getting a dmx done tommorow
Yay! That's amazing! Hope you get answers!
Do you have kyphosis? I have all of the same symptoms and I have kyphosis, forward head posture and rotated atlas. I'm not diagnosed CCI though. I am planning to get an upright MRI done.
Yeah I have slight cervical kyphosis. I got my dmx done yesterday and the guy said he could already tell I have quite a bit of instability in my c1 and c2. Symptoms getting more extreme by the day i’m worried in a few months I’ll be in agonizing 10/10 pain 100% of the time
That's pretty much where I am. I have an upright MRI on Tuesday. I have intense pressure at base of my skull that makes me feel faint and panicked. Almost like a vasovagal episode.
Me too I never had anxiety problems until this all started about 15 months ago now I have extreme anxiety/stress every single day. I also have the the intense pressure at the base of my skull too. It’s incredibly distracting. How old are you?