Retroflexed Odontoid (RO)
What is the odontoid? The spine is made of vertebrae and cartilage discs in between those vertebrae. At the top, cervical (neck) vertebrae number 2 has a portion of bone that points upward. This "bony prominance" is called the odontoid process and it sits inside the first cervical vertebrae, which is more of a ringed structure than the other vertebrae. That joint between C1 and C2 is called the atlanto-axial joint. The head sits very nicely on top of C1 and this joint is what allows the head to shake yes and no, look side to side. It's a pretty important joint in the body, and usually doesn't cause many problems except in some disorders. But, as you could imagine, a joint with the spinal cord and so close to the brain could really cause issues...
So first, a retroflexed or retroverted odontoid process is one that does not stand nice and straight, but rather presses backwards. RO can cause the cerebral spinal fluid (CSF) to be blocked, or can press into the brain stem, which is where the spinal cord connects with the brain.
The odontoid is held in place by a ligament called the transverse ligament. In Ehlers-Danlos Syndrome the ligaments and tendons tend to be lax from missing collagen in connnective tissue. You can imagine where this might cause a problem.
Basilar Invagination is when the skull has "settled" from loose ligaments farther onto the spine than it is supposed to and the result is the odontoid process pushes up into the "foramen magnum". The foramen magnum is the hole at the base of the skull where the spine travels.
By extending up into that hole the odontoid further presses on the brainstem, and causes serious blocking of the CSF.
A pannus build up is the result of the odontoid process being more mobile than it was designed to be. It rubs and wears on the surrounding tissue and creates a build up.
I guess in essence it would be like trying to balance a bowling ball on a rubber stick. There's not enough support for the weight of the head with loose joints. The ligaments holding the head to the spine are lax, which means the head settles.
Symptoms-- headache, neck pain, visual disturbances...... etc etc etc. My gosh, it's near the brain, every symptom starts out in the brain...
Keep in mind that I am NOT a doctor, this is purely for information for those who are curious, and with as much research as I have done, I still run the risk of being wrong! hahaha. =)
I have this problem too but so far no one has done anything for it. I just have to live with the popping, spasming and fluid buildup! Stretching my neck helps somewhat. Thanks for explaining it :)
ReplyDeleteHi, my name is Kari. I am also a mother and a nurse. I have been diagnosed with fibromuscular dysplasia with connective tissue features of EDS. I was told I have a retroflexed odontoid with pannus, never really understood what this meant. Thank you for your blog, it is very helpful.
ReplyDeleteI WAS DIAGNOSED WHEN I WAS 16 YEARS OLD WITH NO ODONTOID PROCESS DUE TO LOTS OF NECK PAIN. NOW I AM 42 YEARS OLD AND DOING QUIT WELL. STILL HAVE SOME PAIN BUT FOR THE MOST PART I LIVE MY LIFE AS NORMALLY AS POSSIBLE.
ReplyDeleteI have suffered for so long with these same symptoms. I also have an acoustic neuroma tumor on my left. I was told by a neurologist to do the best I can to manage my sever headaches. I have not had success in finding a doctor to help me in getting any relief. I live in Cincinnati Ohio, anyone know of a good specialist? Thanks. I will keep each of you in my prayers.
ReplyDeleteDr. Scott Rosa in Rock Hill New York is an expert in detecting and treating individuals with craniocervical malformations and managing symptoms.
DeleteI was watching Mystery Diagnosis and this young woman had a life so similar to mine I felt as though she was living in my pocket. I am an 19 yr old female and have had 2 Chiari Decompression surgeries with dura invasion. But nothing has helped still. Ive been diagnosed with only Chiari. Everything you are describing is text book to myself. I am going to get an MRI tomorrow, and will also be bringing these diseases up to my physician. I can't begin to thank you for this blog. You may have just changed my life. I may be able to finish college now.
ReplyDeleteDr. Henderson in Maryland is the best in the country about this. People all over the world are going to him. I have symptoms of connective tissue disorder and I have been treated terribly by most docs. They do not understand. You need someone who understands. Dr. Henderson will. Before you embark on anything else in life, look him up. He also helps with failed surgeries. (((Hugs)))
DeleteHi i have just set up a facebook page for people with/people living with those who have basilar invagination so that we can share stories and discuss this rare condition - please come and join: - https://www.facebook.com/groups/367318306656106/members/#!/groups/367318306656106/
ReplyDeletethanks
I am thankful for your information as I just got this diagnosis myself. I am what they call borderline for having EDS. I also have occult tethered spinal cord and Chiari Malformation. I had a decompression surgery that failed a few years ago, and so mine is called acquired Odontoid basilar invagination. Does anyone else here have Chiari too? I found a specialist who treats all of these disorders including EDS at the chiari institute in Great Neck ( Long Island New York) The surgeon is Dr. Bolognese. They have done over 2000 almost 3000 sugeries. I hope this information can help someone find a doctor that they need. I traveled from Ohio to see them. It was well worth it despite my complications.
ReplyDeleteWe need to be able to read the document on the RO. This page is not viewing properly. Is there any way to fix it? Thank you.
ReplyDeleteI don't have any problem seeing this page; it's probably a problem with the browser you're using. Try visiting this webpage from a different computer or device (smartphone browser, tablet). Sometimes browser settings can interfere with the way a website loads, so it won't display right. Hope this helps.
DeleteI don't have any problem seeing this page; it's probably a problem with the browser you're using. Try visiting this webpage from a different computer or device (smartphone browser, tablet). Sometimes browser settings can interfere with the way a website loads, so it won't display right. Hope this helps.
DeleteCan you look at my upright mri and see if anything pops up?
ReplyDelete