For patients with cranial CSF leaks that don't heal, the most common indicators are: Drainage from the nose (rhinorrhea) almost always. Salty or metallic taste in the mouth. Sense of drainage down back of throat - often. Drainage from the ear (otorrhea. Cutaneous sinus tract drainage (CSF leaks into the sinus tract, which then creates a pathway to drain through the skin) - often.
I'm talking about a spinal CSF leak not a cranial CSF leak, which is the
Cerebrospinal fluid (
CSF)
rhinorrhea.
However, there is another condition which has very similar conditions to a spinal CSF leak and that is
Cranio Cervical Instability and I this is more likely perhaps if severe headaches are not happening when getting up, but I'm not sure because I've seen all the videos of Dr. Ian Carroll and he says the chronic form doesn't have that.
I know this from many sources, but I also found this more recently:
Brainstem Mechanisms Underlying Temporomandibular Joint and Masticatory Muscle Pain: https://www.tandfonline.com/doi/abs/10.1300/J094v07n01_15?journalCode=imup20
Craniocervical Instability can cause compression of the brainstem this then causes compression of cranial nerves, face pain, tinnitus, intermittent hearing loss, eye muscle control problems. It is related to medulla compression or similar. These are all cranial nerves. It can also cause fatigue and a lot of muscle pain around the body as the condition progresses. It can also cause dysautonomia and ME/CFS type symptoms. It may look like chiari malformation in some people.
I also learned that the Craniocervical Instability may be caused by a condition called Tethered Cord and the tethered cord may be hidden "occult". Also, the occult tethered cord is more likely to happen in those who have either spina bifida, including the occulta variant or ehlers danlos syndrome (EDS). I was diagnosed with spina bifida occulta as a child and I had growth issues. I was never tested for emtpy sella or tethered cord. If there conditions are untreated they can progress to craniocervical instability and a host of other complications slowly over many years.
So, the correct thing to do is find the world expert on tethered cords and get tested for that, though it may not show on all scans which is why it can be occulta. You can also do a scan for Cranio Cervical Instability which is an upright MRI dyanmic (flexion and extension) positions. A rotation scan using CT scan can also be done.
The MRI may find syringomyelia, fatty clumps or be tethered due to a connected filum terminale. It is a big subject. There are also other related conditions such as intercranial hypertension and empty sella, which is a condition which effects the pituitary gland. I may have had all of these which were undiagnosed.
Also, there are some symptoms for tethered cord. They are called "The 3-Bs sign" which is useful for initiating suspicion of tethered cords syndrome. They include 1) bending slightly (over the sink), 2) Buddha sitting with legs crossed (like the Yoga pose) and 3) Baby holding (or equivalent weight) at the waist level.
For me I get pain in the groin area when I do buddha sitting, folding my legs I also have had tailbone area pain. I also have a history of some other symptoms related to tethered cord which I didn't know about. It is very possible that this is a congenital conditions that has been progressing for decades resulting in greater syndromes and debilitation and disability and hell for me. I think I am getting closer to figuring this out though. I wa
I don't think about this forum much since tinnitus and face and jaw muscle pain is just one of my many symptoms, but I thought I'd give an update.
Best wishes to all who may read this some day if you find this. I must have put in tens of thousands of hours of research into this.
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