What a surprise. I was reading a report written by an "Agreed Upon Medical Examiner" who saw me in his office last month for evaluation. He included pages and pages of detailed references he'd read and studied from my voluminous medical history. He caught something I never was told.
He read the report from my follow up in NY last May. I have not asked for a copy of this report, it just slipped my mind. And I have an additional diagnosis. Surprise.
"Functional Cranial Settling" per the good doctors at TCI.
So, I've done some investigation into FCS. I did not know that Cranial Settling is the same thing as Basilar Invagination. That is where the bony finger that sticks up from the C2, known as the odontoid or dens, sticks up through the foramen magnum into the brain. It's something of a big deal. I didn't realise I had this.
Here are some internet quotes I've found on FCS:
Cranial Settling The uppermost bony portion of the neck is called the dens or odontoid process. The skull rests on this process and rotates. Cranial settling occurs when this bone protrudes into the hole in the base of the skull called the foramen magnum. This can be congenital (from birth) or from conditions such as Paget's disease or arthritis. Cranial settling can cause pain in the lower part of the skull and upper neck. It may also cause compression of the spinal cord, which may cause extremity weakness and numbness. This condition can be treated by surgical removal of the dens followed by instrumented cervical fusion. http://www.bcm.edu/neurosurgery/defs/def_a-d.htm (Baylor)
tip of odontoid process, which may be expanded by surrounding pannus, is brought into contact with the cervicomedullary (brainstem) junction; http://www.wheelessonline.com/ortho/atlanto_axial_impaction_basilar_invagniation
The C-1 ring continuity prevents horizontal spreading caused by the wedging of C -1 between the occiput and C-2 and thus prevents cranial settling. www.aans.org/education/journal/neurosurgical/june99/6-6-7.asp-46k - (this shows me exactly what happened to me. I do not have C-1 ring continuity. I have a one inch gap between bone ends at one fracture site. Certainly it spread and allowed my skull to settle where it should not be.
Cranial settling is described in conjunction with rheumatoid basilar invagination and atlanto-axial instability, possibly representing the most life-threatening abnormality associated with rheumatoid arthritis. (however mine is not RA related by due to trauma) http://www.ncbi.nlm.nih.gov/pubmed/8303459
"Cranial settling, also called superior migration of the odontoid or basilar invagination"
This is something serious. I knew my skull had rotated backwards, but did not realise that I had basilar invagination, though it is something I have suspected for a couple of years. Dr. B had told me in May that my brainstem compression was due to the C1 and where the brainstem goes through it.
However, it is also GOOD in a way and I thank God I saw it. It gives me more, very clear and firm reasons to feel confident in moving forward in getting the fusion. I actually am confident now...but this just seals the deal.
3 comments:
Hi, I'm back - the woman who had a Jefferson fracture in 05 and left a comment on your blog earlier this everning . . . I am on a quest to find a. what the cause of my pain is now and b. what might alleviate it (rather than cover it up w/ pain meds)...I have been googling various topics and your blog popped up once again. I should mention that I looked up the doctor you will be seeing shortly and, while I haven't heard of him, he looked good.
If he proposes a surgery, there is probably little harm in sending your films to Dr. Ames at UCSF as well. It's possible you'll get a prompt reply - on the "plus" side, skull base surgeries are challenging and elite/top neurosurgeons tend to have more interest in them since they may well help the doctor expand/solidify his repuatation and provide fodder for journal articles...
I orginally stopped to leave a comment here saying - outrageous and maddening that you found out about your basilar invagination/cranial settling "by accident" since it's very serious and is what prompted my surgery. Apparently, many neurosurgeons who have little expertise in the skull base and atlanto-axial junction are likely to miss problems here (tho I still cannot understand why, when I pointed out that the lateral masses were splaying further and further apart as I "healed" in my very loose fitting brace that allowed a remarkable amount of movement, that the dr. kept telling me I was doing great! I had developed enough skepticism to read the basics of the raidographs by that time and knew that things looked worse to me...Made no difference since i was the patient though...
Anyway, I rather doubt you are in the mood (or have the time) to try to sue this dr., but I cannot BELIEVE he did not disclose this inforation to you. I now try to get frequent copies of my medical records to find out what is going in them - I rarely find a strong relationship between the notes and the actual appointment - I usually find that all sorts of tests, procedures and discussions have occurred that I must have slept through AGAIN! Amazing how my recall is accurate except for during appts. w/ drs when they document all sorts of things that never occurred....
Pardon my own rant. At least the neurosurgeon (who yelled at me when I cried after he told me he was surpsised I wasn't dead and would have to have surgery), made a very very big deal out of the possible basilar invagination and cranial settling he saw...I can think of NO excuse for not discussing this with you. I am very sorry, and happy you are going to see someone well qualified..I imagine you would get a 2nd opinion (and perhaps a 3rd) before moving ahead with a recommended surgery. I realize you are losing function quickly and time is impt - all the more reason to send your films out to several doctors NOW, so that you can act when the comes....Suggest someone at Barrows Neurological --- Dickman reattched internal decapitation as well ...there are other exceptional surgeons at Barrows as well. I just heard the most about Dickman, and you can only select one....
No insults intended - I'm sure you know 99.9% of what I'm telling you. unfortunately, I didn't have a clue how to proceed when I broke my neck - grea idea to create a blog!
Best, Diana
You might look at Ames abstacts to see
2nd try. . .
Hi, I'm back - the woman who had a Jefferson fracture (+C2) 4 years ago and left a comment on your blog earlier this evening . . .I have been googling various topics and your blog popped up once again. I should mention that I looked up the doctor you will be seeing shortly and, while I haven't heard of him, he looked good.
If he proposes a surgery, there is probably little harm in sending your films to a couple other neurosurgeons(suggest Ames at UCSF, Dickman @ Barrows, and perhaps a skull base surgeon at Cleveland Clinic, Mass General or Docter's in NYC... It's possible you'll get a prompt reply and have another opinion to consider before moving ahead with a serious surgery.
I originally stopped to leave a comment here saying that I found it outrageous that you found out about your basilar invagination/cranial settling "by accident" since it's very serious and is what prompted my surgery (though there was considerable disagreement among the surgeons about whether or not I actually *had* basilar invagination or if I was just at very high risk (an MRI is needed to show if the "signals" are ?wrong (I'm sorry, it's been a while and I don't recall some of the specifics now.) I'm impressed you have taken such a positive attitude in the face of a difficult situation, and that you lept into action quickly.
Apparently, many neurosurgeons who have little expertise in the skull base and atlanto-axial junction are likely to miss problems here (tho I still cannot understand why, for example, when I pointed out that the lateral masses were splaying further and further apart as I "healed" in my very loose fitting brace that allowed a remarkable amount of movement, that the dr.I was seeing at the time kept telling me I was doing great and that the healing was coming along nicely . .
I had developed enough skepticism by the time I saw him (the 3rd neuro to review my case) to read the basics of the radiographs by that time and knew that things looked worse to me...Made little difference since i was the patient though...
Anyway, I rather doubt you are in the mood (or have the time) to try to sue this dr., but I cannot BELIEVE he did not disclose this inforation to you. I now try to get frequent copies of my medical records to find out what is going in them - I rarely find a strong relationship between the notes and the actual appointment - I usually find that all sorts of tests, procedures and discussions have occurred that I must have slept through AGAIN! Amazing how my recall is accurate except for during appts. w/ drs when they document all sorts of things that never occurred....
Pardon my own rant. At least the neurosurgeon (who yelled at me when I cried after he told me he was surpsised I wasn't dead and would have to have surgery), made a very very big deal out of the possible basilar invagination and cranial settling he saw...
I can think of NO excuse for not discussing this with you. I am very sorry, and happy you are going to see someone well qualified..I imagine you would get a 2nd opinion (and perhaps a 3rd) before moving ahead with a recommended surgery. I realize you feel you may be losing function quickly and time is impt - IMHO, this is all the more reason to send your films out to several doctors NOW, so that you can act when the time comes....I'm again suggesting someone at Barrows NeurologicalInsitute in Phonnix (though, as I mentioned in my earlier comment, there are some very good doctors at Doctor's Hospital in NYC --- Dickman reattched an internal decapitation as well and is considered something of a miracle worker...
I just heard the most about Dickman, and you can only select one....
I'm sure you know 99.9% of what I have written here. I figured no harm in repeating so that you have the additional 1% you may not be familiar with yet... I didn't have a clue how to proceed when I broke the atlas and axis, and wish I could have spoken w/ someone else at the time -- great idea to create a blog!
Best, Diana
sorry my reply went in twice! I was afraid that might happen - i was trying to edit my first post...
Oh well . . . Best wishes...
Diana
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