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Retroflexed Odontoid
Hi all, anyone with experience with a retroflexed odontoid? I have posted a pic from my latest MRI (MRI laying down) on my profile. It just doesn't look right to me but I am not a radiologist or NS.
I had decompression surgery in Nov. 2011, some of my chiari symptoms got better for a while, I have had persistent neck pain and nerve pain that was never really relieved and intermittent headaches the whole time. (I've attributed that to disk herniation at c5/6 and 6/7 which I get regular steroid injections for). When I would still get headaches, though and felt like they were made worse when the neck would be flared up real bad. At any rate, headaches started getting worse and lasting longer about 4 months ago. I've had a six week headache that Fiorecet isn't touching. Nerve pain and neck pain have been really bad, occasional visible fluid build up in my neck near my skull, choking when swallowing (actually lost the ability to swallow altogether after one of my last steroid injections for like 10 minutes), ringing in my ears that is so bad that I've contemplated shoving a pencil in my ears (not really, just being descriptive), dizzy, almost passing out but haven't, heart palpatations, exhausted all the time.... So, in the middle of the last round of steroid injections I thought this is certainly more than my disks and scheduled with my NS. He sent me for MRI (picture I am referring to) and then I saw him today.
He doesn't think my symptoms are related to my Chiari, he said that the flow looks good around the tonsils. Prior to my appointment I had been doing a lot of research and it seems like there is much more information now than when I had surgery. I asked him about conditions related to Chiari like EDS, POTS, retroflexed odontoid. He said he was pretty certain I didn't have EDS and then looked at my image and said that the odontoid looked perfect. Later he said that people who had issues with that had much more pronounced and it causes more of a curve or impingement in the spinal cord. I asked him if he felt like an MRI sitting or standing would show more of what it's normally like (I don't see how it can't since I don't live my life laying down...but not a doctor) and he said no. (I'd asked him when I was in almost 2 years ago to send me for one. Aside from gravity, it feels like the sheer weight of my head would have an impact).
Just wanting some insight and trying to plan what to do next.. I am so frustrated and so tired of being in pain. I do not take pain killers, except neurontin for nerve pain.
The NS referred me today to a Neurologist, after I kept listing fluid symptoms, he said he would send me for a CINE, but acted like he doesn't expect anything from that and an Xray with my head in flexion? to look at the odontoid I guess.
I had decompression surgery in Nov. 2011, some of my chiari symptoms got better for a while, I have had persistent neck pain and nerve pain that was never really relieved and intermittent headaches the whole time. (I've attributed that to disk herniation at c5/6 and 6/7 which I get regular steroid injections for). When I would still get headaches, though and felt like they were made worse when the neck would be flared up real bad. At any rate, headaches started getting worse and lasting longer about 4 months ago. I've had a six week headache that Fiorecet isn't touching. Nerve pain and neck pain have been really bad, occasional visible fluid build up in my neck near my skull, choking when swallowing (actually lost the ability to swallow altogether after one of my last steroid injections for like 10 minutes), ringing in my ears that is so bad that I've contemplated shoving a pencil in my ears (not really, just being descriptive), dizzy, almost passing out but haven't, heart palpatations, exhausted all the time.... So, in the middle of the last round of steroid injections I thought this is certainly more than my disks and scheduled with my NS. He sent me for MRI (picture I am referring to) and then I saw him today.
He doesn't think my symptoms are related to my Chiari, he said that the flow looks good around the tonsils. Prior to my appointment I had been doing a lot of research and it seems like there is much more information now than when I had surgery. I asked him about conditions related to Chiari like EDS, POTS, retroflexed odontoid. He said he was pretty certain I didn't have EDS and then looked at my image and said that the odontoid looked perfect. Later he said that people who had issues with that had much more pronounced and it causes more of a curve or impingement in the spinal cord. I asked him if he felt like an MRI sitting or standing would show more of what it's normally like (I don't see how it can't since I don't live my life laying down...but not a doctor) and he said no. (I'd asked him when I was in almost 2 years ago to send me for one. Aside from gravity, it feels like the sheer weight of my head would have an impact).
Just wanting some insight and trying to plan what to do next.. I am so frustrated and so tired of being in pain. I do not take pain killers, except neurontin for nerve pain.
The NS referred me today to a Neurologist, after I kept listing fluid symptoms, he said he would send me for a CINE, but acted like he doesn't expect anything from that and an Xray with my head in flexion? to look at the odontoid I guess.
COMMUNITY LEADER
No worries,...most will want to review ur records b4 they will make an appointment...but if u get an appointment they feel they can help u.
Thank you Selma! I hadn't thought about sending my MRI's to a specialist, I kinda figured I needed an appointment.
Take care!
Take care!
COMMUNITY LEADER
Hi...I posted a link to a normal brain MRI ....urs does look very cramped...not being a medical professional I can not say what is going on..,.my odontoid is partially retroflexed....but I can not say what is going on with u other then it looks cramped.
If ur NS is not willing to look into this further a NL that is well informed on all the conditions u listed may be of help, ...u may also want to send a copy of ur MRI to a Chiari specialist for review some will do this free of charge...while others may charge a nominal fee,
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