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It looks from the picture here that they are adjusting the head in three different planes of motion. I wonder if that is true for all patients...I am sure it depends on the measurements and what exactly is required to get to “normal.” At a minimum, it is definitely not just fixing the head in...

I actually think functional cranial settling was my diagnosis. "Functional" in medicine just means that something doesn't work properly but there is no lesion. Tethered cord syndrome, for example, is considered a functional disorder b/c there is no actual damage to the cord, it's just pulled...

Yep! And that change in BDI is I believe what is correcting the cranial settling part, in patients who have it. Note the change in BDI between supine and sitting.

Sorry that is a spelling error. It should read "dysphagia," which is difficulty swallowing. Thanks for catching that!

Ah. So in other words, traction normalities a kyphotic CXA. Great find! I've linked to this paper many times before but never thought much about the details of intraoperative traction and CXA.

Interesting. I was a 65% on that Bulbar brainstem disability index post-thyroidectomy but pre-thyroidectomy, was 50%. But there are a lot of symptoms they don’t measure. For example, after my thyroid surgery, I lost the ability to tell the temperature of water and had to always have my husband...

My simple answer is I do think traction often corrects the kyphotic CXA re: condylar screw fixation specifically, Dr. Bolognese obviously has some talks on the topic other have shared on why it is better tolerated by patients in terms of not feeling the hardware, not experience metal fatigue...

EDIT: I think I quoted the old version of your question @Trish! Re: the specifics of the occipital condyles and fixation, that is way above my pay grade. I do not know anything about the physics of various surgical techniques and how they work. Also, in this question, re: measurements and how...

Sorry. I missed this as it wasn’t the question I was responding to. With traction, they take hard bone measurements (via fluroscopy) and measure the change in your measurements (CXA, Grabb-Oakes, BDI) at progressive pounds of force. They also measure your symptomatic response to traction. I...

Please note that since tethered cord syndrome and CCI are diagnosed based on pathology, rather than symptoms, there are no required symptoms.

I think that is part of the nub here. Jeff, Julie, Karen and I, along with several others, are all here saying that we DO or DID have PEM, yet these are our diagnoses. Maybe PEM is not unique to ME. Or maybe it is hard to know if your PEM and mine are they same thing because these are...

I am not sure I understand what is confusing about what I said. Couldn't agree more that we need proper data gathering. What aspect of the anatomy does not make sense? And are you talking specifically about CCI or these neck diagnoses as a whole?

Sorry--forgive any duplicates. I have been trouble uploading photos the way mine are formatted Re: the Venn Diagrams. I want to stress that surgeons are not diagnosing primarily based on symptoms. Yet, symptoms do matter because no matter how abnormal someone's measurements, you don't operate...

EDIT: There are meant to be two images below. One does not appear on some devices. Yes, that's quite possible. Here are all the Venn Diagrams on one post. As you can see there are some symptoms like paralysis, numbness, apnea, dyspnea, vertigo, syncope, visual disturbances that are not...

If helpful, here is a DRAFT Venn diagram of symptoms from awhile back. I catalogued symptoms mentioned by Ramsay in his 1990s paper, symptoms reported in the outbreaks literature (I think it had to be mentioned in at least two papers but I forget what criteria I used), along with tethered cord...

The reason neurosurgeons do CCI surgery in ME patients is not because of their ME symptoms. Or their POTS symptoms. Or their dysautonomia. They have, however, noticed that these symptoms improve or remit in some patients following surgery. They don't know why that is and I am sure they don't...

I’ve unfortunately seen this happen in patients with CCI/AAI. I posted elsewhere about this. I believe I got worse from provactive testing (mainly turning my head rather than flexion/extension). I worry about these scans in people not planning on having surgery if they are positive. In milder...

Kaufman and Davis think they do. Hyde thinks EDS increases ME severity. I never knew anyone with EDS pre-ME days and now I know personally dozens and have encountered hundreds who have it. OK, take care everyone!

Hi folks, I am pretty sure I will get moderated as we are not supposed to talk about moderation but I realize that the level and nature of moderation on this board is just not something I am comfortable with. I have read this and other threads under the assumption that I am seeing a true and...

No I would not, for all the reasons I have previous explained: https://link.medium.com/b3DcenVE7W Yes, I do think CCI holds a key to our understanding of this disease.