Retroflexed Odontoid

crypt0cu1t

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I got a diagnosis of a retroflexed odontoid & EDS from Dr. Bolognese, but I didnt really buy into structural issues being a part of my illness.

However, after posting my MRI on one of @JenB Facebook groups and getting tons of opinions, I am actually starting to reconsider if this may be playing a part in my symptoms alongside my autoantibodies.

I'll attach the images below, if anyone has any input on whether this could be pathological, please let me know!
 

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JenB

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I have never seen a CXA angle that acute or that much brainstem bend. Or an odontoid that retroflexed. Just sayin’.

If you join the Beyond the Measurement group you can scour hundreds of images and compare yours to other abnormal and normal MRIs.

No one can tell you the relationship between the structural pathology and your symptoms, but traction can be a very good clue. Whether or not this is causing your symptoms, this is not a normal scan.
 

crypt0cu1t

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I have never seen a CXA angle that acute or that much brainstem bend. Or an odontoid that retroflexed. Just sayin’.

If you join the Beyond the Measurement group you can scour hundreds of images and compare yours to other abnormal and normal MRIs.

No one can tell you the relationship between the structural pathology and your symptoms, but traction can be a very good clue. Whether or not this is causing your symptoms, this is not a normal scan.
I'll have a look at that group too! I'm so glad I found your group, everyone on it has been so helpful.
 

pattismith

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You got the diagnosis from DR Bolognese, which is a wonderful news.

Did he suggest that traction could have any beneficial effect in your particular case?

Did he suggest any surgical treatment for retroflexed odontoid?
 

crypt0cu1t

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You got the diagnosis from DR Bolognese, which is a wonderful news.

Did he suggest that traction could have any beneficial effect in your particular case?

Did he suggest any surgical treatment for retroflexed odontoid?
He suggested traction with a physical therapist and he ordered an EMG of my upper extremities.
 

Gingergrrl

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I am actually starting to reconsider if this may be playing a part in my symptoms alongside my autoantibodies.
My feeling on this (in general, not just in relation to you) is that all of these illnesses are multi factorial and rarely have just one cause. My doctor felt my case was one of the most autoimmune cases he has seen but I also have structural issues with my neck. I have Autoimmune POTS but there is some percentage of my POTS which is also structural.

So many factors came together to cause my total illness (which are unique to each person). I had injuries from Levaquin that damaged my muscles and tendons combined with a neck injury from a car accident (that part not in dispute by any doctors at this point) but also severe Mono/EBV and several years exposure to toxic mold in a prior rental and workplace. Somehow all of this ended up in autoimmunity (Hashimoto's, MCAS, Autoimmune POTS, LEMS, etc). The initial triggers were multiple and varied (including structural issues with my neck) and it all ended in severe autoimmunity.

So it is very possible that you have BOTH autoimmune AND structural issues and that there is overlap between the two -- but what and how, I don't think anyone knows yet.

He suggested traction with a physical therapist and he ordered an EMG of my upper extremities.
Do you know what the EMG of your upper extremities would be looking for? Is it b/c of specific auto-antibodies and muscle weakness like in my case (when I had the EMG & nerve conduction testing in 2016)? Please keep us posted.
 

rel8ted

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Do you know what the EMG of your upper extremities would be looking for? Is it b/c of specific auto-antibodies and muscle weakness like in my case (when I had the EMG & nerve conduction testing in 2016)? Please keep us posted.

It would be to check the connection between the nerves and muscles. I've had a couple & didn't think they were as bad as people make them out to be.

Electromyography (EMG) measures muscle response or electrical activity in response to a nerve's stimulation of the muscle. The test is used to help detect neuromuscular abnormalities. During the test, one or more small needles (also called electrodes) are inserted through the skin into the muscle.
 

Gingergrrl

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It would be to check the connection between the nerves and muscles. I've had a couple & didn't think they were as bad as people make them out to be.
I was just curious in his specific case what Dr. Bolognese was looking for (b/c I hadn't heard of him recommending an EMG to anyone else). When I had the EMG in 2010 it was to check for damage in my arm from Levaquin injury and when I had one in 2016 it was to check for LEMS b/c of autoantibody and muscle weakness. So I was wondering if Dr. B said specifically what he was checking for? Sorry if I didn't make sense before!
 

crypt0cu1t

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Do you know what the EMG of your upper extremities would be looking for? Is it b/c of specific auto-antibodies and muscle weakness like in my case (when I had the EMG & nerve conduction testing in 2016)? Please keep us posted
He had mentioned something about bone spurs but I think he wants to do the EMG to see if my antibodies are causing my muscle weakness and fatigue (AChR)
 

Hip

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I got a diagnosis of a retroflexed odontoid & EDS from Dr. Bolognese, but I didnt really buy into structural issues being a part of my illness.

However, after posting my MRI on one of @JenB Facebook groups and getting tons of opinions, I am actually starting to reconsider if this may be playing a part in my symptoms alongside my autoantibodies.
In Dr Bolognese's report that he sent back to you, did he provide any figures for the measurements he made?

The usual CCI measurements of bone and ligament positions in the head and spine are:

Clivo-axial angle (CXA)
Grabb-Oakes measurement
Basion-axial interval (BAI)
Basion-dens interval (BDI)
Translational BAI (measured between flexion and extension head positions)
Dynamic BDI (measured when head is in traction)


The normal, borderline and pathological figures for these measurements are given in the table in this post.

Quite a few people have posted their (anonymized) neurosurgeon's report on this thread, so you can see what other's reports look like.

Did Dr B mention any other diagnoses on his report, or did he only say "retroflexed odontoid & EDS". Dr B's reports are often quite short.
 

Hip

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I found this Facebook post of someone with a retroflexed odontoid, which says:
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.


Also found this paper which discusses retroflexed odontoid, and it shows two images of a normal and pathological clivo-axial angle (CXA):

Normal CXA
Normal CXA.png

Pathological CXA (Retroflexed Odontoid)
Pathological CXA.png

In the case of the pathological CXA angle of 130º, you can see that because the angle is sharper than the normal angle of 150º, the spinal cord and brainstem are bent around, which causes strain/compression.
 

Hip

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You might find this image of the odontoid peg (also called the odontoid process, and the dens) helpful:

1562980479517.png

Interestingly, the dens (odontoid peg) comes up from the second vertebra (axis C2).


On your MRI scan below, I have indicated this same dens bone with an arrow:
20190712_134125.jpg
 

crypt0cu1t

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In the case of the pathological CXA angle of 130º, you can see that because the angle is sharper than the normal angle of 150º, the spinal cord and brainstem are bent around, which causes strain/compression.
The measurement he gave me was 120 actually which seems pretty bad if a 130 is considered pathological
 
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crypt0cu1t

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Did Dr B mention any other diagnoses on his report, or did he only say "retroflexed odontoid & EDS". Dr B's reports are often quite short.
I'll post what he stated on the report here too
Assessment:

r/o Ehlers-Danlos Syndrome (EDS)

Right temporal Arachnoid Cyst

Retroflexed Odontoid (RO)

C5-6 HNP



Plan:

We suggested the following diagnostic tests:
EMG of the UE’s
PT for core strengthening and postural exercises
Trial of Cervical Traction with PT (manual or with devices, for a total of 5-6 times) – the patient will keep a journal recording how the chief complaints are before the traction, during the traction, and in the 2-3 hours following the traction, keeping in mind that in some cases a transient rebound effect can occur after the removal of the traction – the trial should be aborted if severe pain occurs (mandible, occiput, neck)
Trial of cervical traction with a home device (12-20 lbs, 15-20 min, daily, in the evening, for 2-3 weeks) – the patient will keep a journal recording how the chief complaints are before the traction, during the traction, and in the 2-3 hours following the traction, keeping in mind that in some cases a transient rebound effect can occur after the removal of the traction – the trial should be aborted if severe pain occurs (mandible, occiput, neck)


The results of the workup and their therapeutic implications will be discussed during a follow-up visit, later on.
 

Hip

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Yes I'll attach the measurement that he gave me.
It looks like from that image that your CXA is 120º, and your Grabb-Oakes is 1 cm (10 mm), which are both in the pathological range (CXA of 135º or less is pathological, and a Grabb-Oakes of 9 mm or more is pathological).