This goes out for the boys or maybe for the girls also.
And maybe a interesting one this time.
Is it possible that since the IJV is compressed that it can cause Erectal Dysfunction as an actuall symptom?
I read an article about variouse symptoms off IJV compression that it can affect it somehow and also it can mess with your hormones that is created when you are auroused.
Interesting concept @Henrik, I wouldnt be surprised if IJV compression or vagus nerve irritation may have that effect though.
it’s just funny because all in all IJV compression affects blood pressure and circulation.
I can’t say that i have experienced erectal dysfunction myself, but however i’ve experienced weird stuff happen with my equipment “down there” when i have experienced pain or symptoms from IJV compression/ES.
Maybe it is just because the total outcome off the state i am in just makes everything " turn off"
Also make sure it’s not a tethered (or occult tethered) spinal cord (another rare condition, but some people have comorbidity with Eagle’s syndrome). When your head and the whole spine is in certain “configuration” (or position; very straight and extended), it might overstretch the axons in the spinal cord responsible for lower Lumbar and Sacral nerves that innervate a lot of lower body incl. legs. Any weakness or altered sensation in legs at those times?
I mean the reality is there will be many symptoms attributed to ES and other comorbid conditions. I read a paper from Nicholas Higgins yesterday about a case where someone had a motor vehicle accident, ended up with tourettes syndrome, both motor and verbal tics. After 3 y like that it was noticed he had nasal leakage, likely cranial CSF leak. Was sent to Mr Higgins and had his IJV decompressed and tourettes went away.
We’ve had several members, both male & female note sexual dysfunction along w/ ES symptoms. Whether it was due to ES pain or actual dysfunction caused by vascular or nerve compression is unclear, but both are possible. I agree w/ @LimeZest that the vagus nerve could be involved since it is partially responsible for bowel, bladder & sexual function among its many tasks. @vdm also put forth some other possible connections.
Well to start off, i dont know what you meant by comorbidity, to be honest that was a new word in english for me. I translated it and i hope this is what you meant, i’ve got AD/HD besides ES and FHH. Iknow that AD/HD can sometimes “drain energy” and i guess that FHH if untreated can cause a variety off weird symptoms as it did for me for a long time.
You are asking me about weakness and altered sensation in my legs. I do infact experience that, sometimes i feel a warm almost burning sensation from my toes up to my leg muscles and infact a “weakness” sensation. I would describe it as the same feeling you have in your legs after a 10k run except that i have not been out running.
Interesting! Im thankfull for your opinions and views, there is so much weird stuff and symptoms going on with ES. I must say that it is going to be fun and interesting to see the difference in symptoms,energy level etc, after i have been treated.
Wow, that must have been three crazy years for that pasient. CSF is some sort off liquid that protects the membrane around our brain or is it the other way or something else ?
Comorbidities are medical conditions that often found together, e.g. Eagle’s syndrome is not uncommon among people who have hEDS (hypermobility EDS) condition, and other conditions that are common with hEDS are tethered spinal cord (Tethered cord syndrome | Radiology Reference Article | Radiopaedia.org), craniocervical/atlantoaxial instability, sometimes thoracic outlet syndrome, and so on…
As for tethered (“stuck”) cord syndrome, leg weakness, problems with bladder control, tension sensation in legs are some of the symptoms.
CSF is a fluid in which the brain and the spinal cord “float”. Basically, the brain and the spinal cord are “wrapped” with layers of tissue (including dura), and in between there is CSF fluid. The CSF is produced inside of some chambers in the brain called ventricles. The CSF is produced slowly but constantly and both protects the brain from suddenly hitting the skull when the head is moving, and also washes out various metabolic products out of the brain.
Great description of CSF fluid’s origin, location & function, @vdm! I learned something new today! I also appreciated your definition & examples for comorbidities & tethered cord symdrome. Thank you!
Great explained! How do you chek for CSF leak ? Is there a way to chek yourself?
@Henrik there isn’t any “easy” way, except by “guessing” based on symptoms, especially if you have totally clear, leaky nasal discharge that comes when you bend over, or some watery leak from the ears. This fluid can be checked by doctors for presence of glucose and certain proteins that are usually found only in CSF and not for example in watery nasal discharge, saliva, tears, lymph etc.
In the healthcare environment settings, usually these methods are used to suspect/test for CSF leaks:
- CT scan to look for skull base and other skull bone defects/“holes”, leading to suspected site where the leak happens
- MRI based on signal intensity on T1/T2 modalities, as CSF is bright white in T2, and dark in T1 in these pictures. I think other modalities can be used too but I’m not that good at all the MRI physics
Now come invasive methods:
- CT myelography, where contrast media is injected into the spinal canal and the CT scan shows where the contrast media manages to get out.
- MRI myelography. Same as CT, but in my opinion, risks are higher due to more toxic contrast media (depends on the patient)
- Cisternogram, which uses similar technique to inject the fluid into the spinal canal, but the injected material is radioactive and then scanned using radioactivity-detecting cameras, similarly to bone density imaging
- simple lumbar puncture aka “spinal tap” where the needle is inserted into (usually) lower back and a manometer is used to check the pressure of the CSF. Low CSF pressure reading might suggest presence of CSF leak, but other medical conditions might cause it too
It’s worth mentioning, that the invasive methods, especially myelography, are risky, sometimes causing life-long debilitating symptoms.
There is also a way to simply blindly “patch” the CSF leaks by injecting patient’s own blood into the spinal canal space, and the blood will find its way towards the leak side and “glues” it.
There might be more methods, but I am aware only about those above.
Another great answer. I really appreciate your knowledge, @vdm!!
Thanks for that !
Is it possible that a sensation off drainage in ears and nose can be a symptom off CFS leak?
Sometimes when i experience great pain from compression. I will often suddently have a slight drainage sensation in my ears and nose. And the compression pain,brain fog and head pressure will start to ease off. But there is not any visable liquid as far as iknow.
The sensation in the nose is very different from my ear, it’s a tingling(like a feather or a insect crawling) sensation and the feel off the sinuses being drained.
In the ears it is a very slow drainage sensation.
And when the sensation stops and pain symptoms starts to ease off, i can hear a almost like crackling sound in the back off my neck. Like a big handfull off sand is running trough my neck. This happens when i have terrible headaches/migrene.
Iknow offcorse that blocked sinuses and the drainage problems can be caused by the compression from the calcfied styloid or ligament itself, but it feels quit weird.
I’d say it’s possible, also it’s possible that there is some blocked vein which then suddenly opens up and allows the blood from the brain drain faster, and if that vein is situated close to the ear, you might be able to physically hear the blood passing.
Though I’m not a doctor, so these are just speculations based on my personal knowledge/opinion…
Appriciate your view on this!
Guess it will be something to tackle when i’ve had my surgery.