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The brainstem compression diagnosis, how to do it?

pattismith

Senior Member
Messages
3,932
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

Senior Member
Messages
176
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.
 

SlamDancin

Senior Member
Messages
521
@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

Senior Member
Messages
3,932
@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

Senior Member
Messages
451
Location
Usa
@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

Senior Member
Messages
3,932
@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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pattismith

Senior Member
Messages
3,932
How is tethered cord diagnosed?
you just need a MRI of your Lumbar + sacral area

1565586798371.png
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson

pattismith

Senior Member
Messages
3,932
@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

Senior Member
Messages
451
Location
Usa
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.
 

pattismith

Senior Member
Messages
3,932
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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pattismith

Senior Member
Messages
3,932
So what kind of doctor: diagnoses these issues? I need a DOCTOR. I need ASSESSMENT.

apparently its neurosurgeons who do corrective surgery, but are they who diagnose these issues?

I guess if you have legs problems, any doc can ask for an MRI of this spine area. Once you have it, you may be able to send it to a neurosurgeon for diagnosis if you think there is a need to.
 

rel8ted

Senior Member
Messages
451
Location
Usa
So what kind of doctor: diagnoses these issues? I need a DOCTOR. I need ASSESSMENT.

apparently its neurosurgeons who do corrective surgery, but are they who diagnose these issues?
You need to research neurosurgeons, know what imaging they require, and find a GP to order it. Generally, the neurosurgeons will not order imaging per the neurosurgeon’s specifications. The radiologist report is generally not useful for this diagnosis as it is often overlooked.
 
Messages
65
Bravo! Having new ways of testing for mechanical issues makes a lot of sense.

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.
Have you been tested for heart rate variability?
I remember reading that it was proposed as a way to diagnoses Parkinson's Disease in it's earliest stages. In the early stages, before the motor symptoms become obvious, neurons in the medulla oblongata become diseased, causing a decrease in HRV.

Not sure if you saw this article. https://link.springer.com/article/10.1007/s11682-018-9897-x
 
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pattismith

Senior Member
Messages
3,932
@Cherry
HRV is supposed to measure balance between sympathetic and parasympathetic nervous autonomic function.
Alterations of HRV (lower values) are mostly the result of increased sympathetic and decreased parasympathetic (via the vagus nerve).
So you are right that HRV is altered in POTS and in many other diseases with altered autonomic function that are not necessarily related to brainstem compression.

I found this article were they compared 24 hours HRV between POTS people, Neurocardiogenic syncope and healthy control, and they found reduced HRV in POTS people only.