My Neck Brace Is Helping All Kinds 'o Stuff!

[mkoven]

Since getting diagnosed with cranial-cervical instability, I've been put in a hard neck brace to wear 70-80 percent of the time, cutting back a little as long as I can maintain "neutral" posture. I was skeptical, but it really helps all kinds of stuff--nausea, vertigo, blurry vision, tongue tingling, and headaches. So many symptoms that now I see were literally from my unstable neck/head. I've aborted all of these symptoms within minutes of putting the brace on, and a lot of them come back soon after I take it off. I'm trying to learn to hold my head properly, but never realized how far back your head has to be, and how "up in the air" my nose and chin are s'posed to be. Flexion brings on all kinds of disparate symptoms. Not that I want cci, but it's amazing that after multiple years, no one picked up on this!

[futurehope]

Since getting diagnosed with cranial-cervical instability, I've been put in a hard neck brace to wear 70-80 percent of the time, cutting back a little as long as I can maintain "neutral" posture. I was skeptical, but it really helps all kinds of stuff--nausea, vertigo, blurry vision, tongue tingling, and headaches. So many symptoms that now I see were literally from my unstable neck/head. I've aborted all of these symptoms within minutes of putting the brace on, and a lot of them come back soon after I take it off. I'm trying to learn to hold my head properly, but never realized how far back your head has to be, and how "up in the air" my nose and chin are s'posed to be. Flexion brings on all kinds of disparate symptoms. Not that I want cci, but it's amazing that after multiple years, no one picked up on this!

You are so blessed to have found out the cause of many of your problems. Bravo for finding the correct doctor.

[Broken_Shell]

Wow! I am happy for you. I was given a neck brace but haven't worn it yet because I am afraid it will make my neck muscle spams worse. Maybe I should give it a try after all. I just had another C-spine MRI, so we'll see what that showed. How was your CCI diagnosed? Image study or physical exam? Thanks!

~ Broken_Shell

[jjb]

Excellent!

Which brace did you get?

Since getting diagnosed with cranial-cervical instability, I've been put in a hard neck brace to wear 70-80 percent of the time, cutting back a little as long as I can maintain "neutral" posture. I was skeptical, but it really helps all kinds of stuff--nausea, vertigo, blurry vision, tongue tingling, and headaches. So many symptoms that now I see were literally from my unstable neck/head. I've aborted all of these symptoms within minutes of putting the brace on, and a lot of them come back soon after I take it off. I'm trying to learn to hold my head properly, but never realized how far back your head has to be, and how "up in the air" my nose and chin are s'posed to be. Flexion brings on all kinds of disparate symptoms. Not that I want cci, but it's amazing that after multiple years, no one picked up on this!

[mkoven]

apparently not that many docs know how to spot it, nor do radiologists. Working from the same mri, another radiologist and neurologist missed it. I saw a neurosurgeon specialized in the cranial-cervical junction. He not only examined me, but looked at specific angles on my mri. My clivo-axial angle is too acute (normal 165, me 135) and my HArris and Grabb-okes lines show instability. I have no idea what/where these are. I also have a retroflexed odontoid. I told him and showed him how much worse I feel though when I move my head around. I can bring symptoms on depending on head position. Where are you located? He gave the names of a couple other people whom he trusts.

I want to be sure not to let me neck get weak in the brace, so I take it off regularly, but as soon as I start in on my symptoms, it goes back on, because I really don't need to be pinching my brainstem. I can go for walks without it-- it is easier for me to keep good posture when I'm moving, than when I'm sitting around. My muscle spasms are better with it, as I'm not fighting so hard to keep my head up. But I am doing exercises to strengthen my lower traps (NOT upper traps, which are in spasm), and use my thoracic spine--when I flex in my upper back, my head droops. If I can extend my thorax, it's easier to keep my head erect. So I basically am trying to relearn good posture. But I have a feeling that my weak/stretched ligaments can't entirely be overcome with good mucles. Surgery may be in my future, but hopefully not any time soon. The doctor said he thinks the cci is behind a lot of my symptoms, but that I'm not bad enough yet for a fusion. I hope not to need to.

[mkoven]

Excellent!

Which brace did you get?

I got the brace he keeps in his office-- not a lot of choice. It's a Thomson, with plastic, vinyl, and metal stays. It's uncomfortable, hot, and rubs my chin, but that discomfort is not nearly so bad as they symptoms it's intended for.

[Maxine]

Mkoven, be careful with body mechanics, and don't stress other parts of your spine as your neck is being stabilized with the hard c-spine collar.

When I had my cervical spine surgery in 2002 I was given my first hard cervical spine collar.

Now I have two of them. Jerome and Aspen. I'm told to wear it in the Car at all times, but I can't when I drive unless I get special mirrors.

I did wear it when driving once, and I would twist at the waist to look in the blind spots. This is how my T-8 disc became completely desiccated.

Since then more discs have herniated, desiccated ect.

The hard collar does help with the pain, and SOME symptoms. My orthopedic surgeon said not to wear it too much, as my neck muscles will atrophy, and there will be nothing to hold my head up, as the joints and ligaments are damaged from the EDS. CRANIAL SETTLING is a risk if the neck muscles atrophy.

I also have a cervico-thoracic vest collar for extra bad days. I don't wear this often, as it rides up me if I sit on a soft cusion chair of couch. I can only sit on a hard chair with that on.

Maxine :0)

[ramakentesh]

Strange. You know I often have to hold my head with my hand all the time - its so heavy...

[mkoven]

As I write this, I just took the brace off. It's so tough to know which to do. The nsg said to wear it 80% of the time now. I do notice that I don't necessarily use the right neck muscles-- I"m trying to retrain to keep my head back and up with lower traps, rather than protruded and supported with upper traps. It feels better, but is totally different--- and unnatural. I"ve had a forward head position for so long!!! I find any flexion brings on symptoms.

Does anyone have neck-specific stabilization exercises that they like?If so, could you pm me or post a link? Mine have included thoracic strengthening, trying to activate flexors from a neutral position, and isometrics. I'm thinking of trying Alexander Therapy, as that is supposed to be all about proper head-neck relationship, easing movement. Just have to find a teacher who will respect my limitations. I"ve also switched from my walker with seat to a seat cane, as my pt pointed out that pushing the walker was really forcing/keeping me in a hunched position.

and like you, Maxine, the rest of my spine is not great either. I've had surgery on L5-S1, and have multiple herniations and bulges throughout. So yes, body mechanics are key. Can you pm me the names of surgeons you've liked in the midwest who "get" it? I don't want surgery now, but would like some more opinions and someone to check in with.