The brainstem compression diagnosis, how to do it?

pattismith

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Brainstem compression seems to be a potent trigger for ME/CFS.

It can be a consequence of several pathologic processes:

-Cranio-cervical instability
-Chiari
-Retroflexed Odontoid
-thickening of the transverse ligament (even pseudo-tumoral lesions)
-various tumors in the brainstem area, or bone proliferation.

On the other hand, symptoms of brainstem compression seem to be hard to access when the compression is not severe and does not involve a strong spinal cord compression.

From the neurosurgeons specialized in Elher Danlos and cranio-cervical instability practice, we can see that they don't do specific testing for the brainstem compression diagnosis, I mean no other testing than removing the instability (by traction) to see if the symptoms resolve.

If we compare practices for other type of brainstem compression, we may learn other test that could bring some interest.

The first test that came during my researches is the Brainstem auditory evoked potential used in Chiari, and the Auditory brainstem response,

@jeff_w and @JenB did you have any brainstem function testing like these before your surgery?
 
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Sidny

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Very interesting @pattismith I didn’t realize there were other diagnostics besides traction and imaging. Maybe those auditory tests can be used to check for other types of instability and brain stem compression.
 
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@pattismith You are one of my favorite posters. Always making me think and when it comes to auditory function I’ve noticed that my
Hearing in my left ear, especially with an in-ear headphone, I can tell that my resting posture to my consciously pulling my posture into alignment changes the way I hear out of that ear. I can sense bass and other sounds better in the “perfect” posture I can’t maintain for very long. I likely have some EDS or something but my diagnosed condition is scoliosis and cervical straightening.
 

pattismith

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@pattismith You are one of my favorite posters. Always making me think and when it comes to auditory function I’ve noticed that my
Hearing in my left ear, especially with an in-ear headphone, I can tell that my resting posture to my consciously pulling my posture into alignment changes the way I hear out of that ear. I can sense bass and other sounds better in the “perfect” posture I can’t maintain for very long. I likely have some EDS or something but my diagnosed condition is scoliosis and cervical straightening.
Did you ruled out cranio-cervical instability or other cervical instability? Maybe you should if you have EDS.
I have some hearing problems, and tinnitus, and also some vestibular problems (balance).
(I also have the loss of cervical lordosis like you do, and my joints have some laxity but not hypermobility)
I wish I could have some screening for cranio-cervical instability, but then what would be the answer...
I am not severe, so the surgery decision wouldn't be simple (not to mention the cost!).
I think people with cranio-cervical instability need more datas/testing (with objective results) to have a better prediction of the benefit they can expect from the fusion surgery.
 

rel8ted

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@pattismith, I would expect the surgeons to be evaluating symptoms on the brainstem disability index (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2940090/table/T0001/ ) to determine severity of clinical symptoms and reviewing imaging to determine where the problem lies. Interestingly, Dr. Patel does not always do surgery. He said in this talk that he sometimes sends people to PT as a first line approach and Henderson helped him learn about EDS patients because Patel was asking questions that Henderson once had.
Patel also talks about how if an EDS patient has tethered cord, the diagnosis must be clinical because the filum is hard & not flexible in EDS and looks normal on imaging.

I wonder also if some of us have unaddressed CSF leaks. The symptoms can be similar to POTS & he has made a connection between EDS and CSF leaks . He also mentions in this video that someone was dx with Chiari, but actually had CSF leak. He also specifies that having a fusion can actually increase your chances of CSF leak. I'm not railing on fusions or decompression, just putting it out there so people know there are other things that cause similar issues.


There is also a discussion on this forum http://invisibleillnessforum.com/in...YZ5n0XhFcUONVCCK1cslW5DbZdaN_jN62-UkNOwPYQ8Xo

Dr. Carroll's own daughter was so severely debilitated by a CSF leak that his family was encouraging him to quit his job to be her carer. That is how he became interested in this area.
 
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pattismith

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@pattismith, I would expect the surgeons to be evaluating symptoms on the brainstem disability index (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2940090/table/T0001/ ) to determine severity of clinical symptoms and reviewing imaging to determine where the problem lies..
Yes I know this index, but these symptoms are not specific, it means that they can be present in other diseases.
I am 50% at this index, but that doesn't mean a brainstem compression is at play for me.

Some people don't improve much after fusion, so we can question if their symptoms where actually linked to brainstem compression….. This is why I wishneurosurgeons could propose some objective testing for brainstem function.
 
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valentinelynx

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pattismith

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@pattismith Thank you for bringing up this issue:


This is a question that occurred to both me and my husband right away: Do these surgeons use these tests well known in neurology to pursue these diagnoses and test before-and-after surgery? And if not, why not?
yes, this is the point. I suspect they tried to use these tests and found them useless, perhaps because of lack of sensitivity? I wish we could ask them.
The auditory test is even used during surgery procedure in children with Chiari, which allows to see an instant improvement with Brainstem decompression:

"Improvement in brainstem auditory evoked potentials after suboccipital decompression in patients with Chiari I malformations

Conclusions. In children and young adults undergoing suboccipital decompression with duraplasty for Chiari I malformation, the vast majority of improvement in conduction through the brainstem occurs after bone decompression and division of the atlantooccipital membrane, rather than after opening of the dura. Additional studies are needed to establish whether the improvement seen with BAudioEvokedP monitoring during bone decompression will predict long-term clinical improvement in these patients."
 

rel8ted

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Yes I know this index, but these symptoms are not specific, it means that they can be present in other diseases.
I am 50% at this index, but that doesn't mean a brainstem compression is at play for me.

Some people don't improve much after fusion, so we can question if their symptoms where actually linked to brainstem compression….. This is why I wishneurosurgeons could propose some objective testing for brainstem function.
Henderson indicates in one of his talks that some patients don’t improve due to having “other issues”
I would think it is nearly impossible to accurately predict the outcome, especially in complex cases. I’m pretty sure I’ve got more than one issue & will be doing more investigating before making a decision.
 
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The Somatosensory Evoked Potentials can also be useful, though not specific to the brainstem (test nervous influx from the skin to the cortex).

The Vagal Somatosensory Evoked Potentials serves to test the vagal nuclei (in the medulla which is the lower part of the brainstem).
vagal tone (parasympathetic activity) has shown to be altered in Alzheimer, MS, and some focal epilepsy with necrosis.

One study made a correlation between Heart Rate Variability and VSEP, so mesuring our HRV (which can be achieved with a portable machine), could give us interesting informations about our parasympathetic activity, and possibly about our brainstem vagal nuclei.

https://pdfs.semanticscholar.org/3dae/be3d53d2ad516d696e427e6ff6da5dca1811.pdf
https://onlinelibrary.wiley.com/doi/abs/10.1002/hbm.24325
https://www.sciencedirect.com/science/article/pii/S2213158219302384
https://www.sciencedirect.com/science/article/pii/S1388245718303699
https://www.sciencedirect.com/science/article/pii/S2213158219302384
 
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