Is it CSF leak, IIH or Both or something else. How it all started in my case

[KoolDude]

It was an evening in January 2016 when my wife & I came from a walk which was routine for us since she was 5 month pregnant with my 7 year son. As soon as we got home, I ran to the sofa and throw myself on it to sit. Within a few seconds, I felt what appears to be fluid movement at the back of my head and all of sudden, a feeling of extreme fear and doom hit me (can’t tell if it was panic or simple, partial seizure but never lost conscience during that episode). I ran to washroom as I was feeling confused and extremely frightened. I washed my face with cold water and ran to the fridge to grab a drink. after few minutes, the panic-like feeling subsided but I was never the same from that day on. The following 2 years, I was in what appears to be anxious state constantly and would easily break down. I was also smelling burning candles or coffee where there is none and also feeling of Deja Vu (this is a feature of simple partial seizure, not panic). I Could not concentrate on work and was preoccupied with finding out what really had happened to me. I lost a lot of weight in the process. I was also feeling tingling sensation in my back around T9-T10. I went to the doctor and explained what had happened to me, as usual my doctor prescribed buspirone (anxiety medication) as she thought it was all anxiety and panic that had hit me. The medication did a little to ease my constant state of anxiety and agitation. So I turned to meditation and life style changes which help a little but I was not feeling the old me anymore. Then in 2018, I begin to have insomnia, mild visual snow, floaters, halos/stardust around lights, ghosting, after images (palinopsia). I also started to experience loud tinnitus/pulsatile tinnitus and my sensorineural hearing loss, which was initially diagnosed in 2013 as mild to moderate, started to deteriorate to mild to severe. Right arm and right leg tightness and facial cheek muscles tugging/pulling begin to appear. Basically, all the IIH related symptoms showed up in full in 2018 onwards.

So now that I went through left Styloidectomy and C1 shaving without any noticeable improvement on my symptoms, I am beginning to think that , perhaps, the movement I felt at back of the head that day in 2016 might have been CSF leak and as result the brain might have slumped for a little while ( I am not sure about this but just my assumption). The reason is I did get an MRI imaging done for the hearing loss in 2014 (the oldest MRI I have) and it does show all the features of IIH along with what appears to be CSF leak in the facial canal which is linked to hearing loss (see the images below) but I was not feeling them at the time (2014). So while it is clear from the 2014 MRI, that I had IIH prior to the onset of my new severe symptoms, I am thinking what happened in 2016 might have been CSF leak presumably at the back of the head when I abruptly sat on the sofa. I could also be wrong and that it might have been totally something else like simple, one-time partial seizure (which BTW was ruled out when I did EEG in 2018).

So now I am at loss here. Trying to figure out what could this be. There is no doubt that I had bilateral IJVs compression and IIH (confirmed by imaging done thus far). I also have perineural cysts/Tarlov cysts in my cervical and thoracic spine which is linked to IIH and CSF leaks. So could I be suffering from CSF leak although I do not have orthostatic headache. My headache is more like pressure headache at the temples and facial tugging/pulling sensations towards the end of the day. My journey continues but I am beginning to doubt that this is all IIH related.

2014 MRI: Distended Optic Nerve Sheath (red arrows) and tortious optic nerve.

2014 MRI - Partial Empty Sella (Red arrow).

2014 MRI: Shows CSF filled dilation of the right & left geniculate ganglion (this is the canal that the facial nerve goes through) and it indicates meningocele (Red Arrow). This is linked to hearing loss and is basically CSF leak within the facial canal just above the cochlear (blue arrows).

Here is an image from the internet showing similar CSF filled geniculate ganglion of 64 year with bilateral sensorineural hearing loss just like me.

Source : https://www.ajnr.org/content/40/8/1402

Here is another study showing a 45 year old with bilateral sensory-neural hearing loss with CSF filled geniculate ganglion

Enlarged geniculate ganglion fossa in idiopathic intracranial hypertension

CLINICAL HISTORY

A 45-year-old female patient presented to the ENT department with a history of bilateral sensory-neural hearing loss, worse in the right ear. She was otherwise fit and well with no other reported symptoms. She previously had a CT examination following a head injury which was reported as normal at the time.

Source : Eurorad.org

[Leah]

"My headache is more like pressure headache at the temples and facial tugging/pulling sensations towards the end of the day. "

My situation started abruptly as well. One of my main problems was extreme head pressure, couldn’t tell if was internal or external… did not know what a styloid was. Went to an Oral Surgeon for botox to my jaw and temporalis… he did the pano that showed the styloids.

I still have that pain, and have had botox 3 times since April. I’m thinking that is trigeminal nerve irritation but don’t know for sure, and since I’m 3.5 weeks out from surgery, no clue if I should start feeling some relief. If nerve irritation/damage, then will need time.

I do get relief with Gabapentin… have a love/hate with that drug, but have been very grateful it exists for nerve pain. And no clue what it may mean if the Gabapentin helps with nerve pain, so does that imply my pain is nerve (?) or it helps in general. Haven’t looked into it yet.

I also have used lidocaine patches, cut to apply to painful areas, in my case, jaw and under ear for styloid. And then would suggest trying botox for the temporalis pain. Knowing than none of that answers your questions, but perhaps gives relief while continuing your search.

As always, so sorry for your suffering.

[vdm]

Interesting story. In my case, I also had some similarities with feeling fluid suddenly starting to flow in the back of the neck. But the difference is that it would be one side first, then the other. Right now I speculate in my case it could have been vertebral arteries being compressed/squished, OR the enlarged veins in the back of the neck that were able to expand when I was relaxed to compensate my compressed IJVs. Later, perhaps, spasmed muscles made both of those changes permanent. As I mentioned somewhere on this forum earlier, right after the surgery for close to ten days I had all “those fluids” flowing freely, mind was super sharp, tinnitus almost gone, hearing and vision recovered, energy levels were unbelievably high (like used to be before everything started). And then one click in the neck wiped lots of those gains off.

So I suspect in my case (which not necessarily, but might be yours too) some vertebral artery involvement is possible. It feeds the brainstem, which is responsible for many autonomic processes including smell, taste, consciousness etc.

Funny though, I also used to smell some burning, stifling stuff where other people couldn’t, especially coming into the apartment from the central ventilation system. But in my case, it was a bit different story. The sources were real, just my sense of smell was extremely elevated. I couldn’t stand variety of smells, including sulphites common in dried fruit and some drinks - that would make me suffocate.

Upd: forgot to add that in my case I also didn’t rule out vascular compression caused by stiff scalene and other neck muscles, both deep and superficial. That’s because with muscles relaxing I’d get that fantastic pshhhh sensation of some valve opening and suddenly brain feeling totally normal again. So I thought it could be almost anything containing fluid.

[KoolDude]

@Leah

I also have used lidocaine patches, cut to apply to painful areas, in my case, jaw and under ear for styloid. And then would suggest trying botox for the temporalis pain. Knowing than none of that answers your questions, but perhaps gives relief while continuing your search.

As always, so sorry for your suffering.

Thanks Leah. I am desperate now to try anything that can lessen this constant symptoms be it Botox or anything else. Much appreciated your input.

[KoolDude]

@vdm

Upd: forgot to add that in my case I also didn’t rule out vascular compression caused by stiff scalene and other neck muscles, both deep and superficial. That’s because with muscles relaxing I’d get that fantastic pshhhh sensation of some valve opening and suddenly brain feeling totally normal again. So I thought it could be almost anything containing fluid.

I also wonder if tight muscles of the neck are somehow how contributing. I know when I message my neck and relaxes the muscle I feel less symptoms.

[Leah]

Try ThermaCare hot patches overnight on shoulder neck intersection to see if that helps.
I use this size

[Leah]

Me as well with neck muscles. All on left side.

[vdm]

@KoolDude

am desperate now to try anything that can lessen this constant symptoms be it Botox or anything else.

Just my 2cts as usual… I’d say don’t let any chiropractor or osteopath “adjust” your neck. People on variety of FB groups claim (obviously not everyone, but stories are plenty), that whatever it was, it became tenfold worse in their cases and some ended up with full neck fusions soon afterwards to avoid death, or strokes and consequences. And obviously in Canada nobody does this type of fusions on “healthy” patients…

[Isaiah_40_31]

I wish I could offer a magic potion or pill that could stop all your symptoms, @KoolDude. Praying for you is the best I can do. I am so very sorry that your symptoms continue, but I do think you’re on to something helpful with regard to the cause of your hearing loss. I didn’t read the articles yet, but if there’s surgery that can be done to drain the fluid out of the area around the cochlea, I hope you can find someone to do that for you. Only being able to hear with one ear, in my case, is a bit challenging but to have both compromised would be incredibly frustrating.

[Mod_support]

Hey KoolDude,
This is Merl from the modsupport team and although I don’t have Eagles, I have LOTS of personal experience with issues regarding brain fluid (both blood and CSF).

I want to also say my own personal view of IH (Intercranial Hypertension) is that there is always a cause or a reason. Labelling it as idiopathic or IIH is very misleading. Under ‘normal’ conditions we (adults) produce around 600ml of CSF daily. This fluid is produced by cells in the brain, the fluid surrounds the brain and drains down through the spinal cord. It nourishes the nerves and flushes waste. Under ‘Normal’ conditions our body’s uses around that 600ml of CSF daily, so it all balances out. The problems come when it doesn’t all balance out, either hypo-tension (low pressure) or hyper-tension (High pressure).

Low pressure (hypo-) can often occur from a tear in the membrane (called the Dura) or a leak. Now, the cause of that tear can be idiopathic, not have a direct physical cause, but the hypotension is caused by the leak via the tear. Now, high pressure (hyper-) is often caused by our body’s, as they age, producing more than the body uses or a blockage to the natural flow of fluids, both blood and CSF.

Now, I say all of this because I’ve had the ‘Joy’ (NOT) of dealing with both Hypo- and Hyper- and none of it is fun. Some medicos like to work on a Symptom ‘A’ plus Symptom ‘B’ equals Diagnosis ‘C’ hypothesis. And sure, for some, that theory may work but we don’t ALL have the same symptoms. I didn’t have positional headaches (orthostatic headaches) prior. My head was ready to explode at times, but my position didn’t affect it, prior to surgery.

I had a craniotomy and OMG, that sent my system haywire. I want from extreme hyper- to extreme hypo- and the headaches were simply out of this world. I could not believe pain like that even existed, just WOW intense and these are often (not always) positional affected. And the medico’s recommendation ‘…Well, don’t lay down (or stand up) for too long…’ That’s not an answer.

@KoolDude

So now I am at loss here. Trying to figure out what could this be. There is no doubt that I had bilateral IJVs compression and IIH (confirmed by imaging done thus far). I also have perineural cysts/Tarlov cysts in my cervical and thoracic spine which is linked to IIH and CSF leaks.

And I can understand why you’re at a loss, having IJV, a Tarlov cyst, IIH and CSF leaks. You’ve got the quinella of primary causes added to the quinella of secondary outcomes. My bet is that trying to pinpoint a cause/effect would be like trying to nail jello to the wall. Some would label your symptoms IJV related, some Tarlov related and with both a different course of action.

Have you had any nuclear medicine tracer scans completed to show the flow of CSF? Such a scan could show the exact location of a leak and/or a blockage. It would also help identify the circulation of fluids. Fluid flow and the changes in fluid flow can cause some weird and wonderful symptoms. I’ve reported some such ‘weird’ symptoms only to have the medicos look at me like I’ve been partaking in hallucinogenic substances, making statements like “Well, that just can’t be happening…” but it is happening (without hallucinogens )

One of my many pseudo diagnosis/treatments was Botox and if my issue had been muscular or tension related, Botox should have improved things. It did not. Sure I had a ‘sexy’, wrinkle free neck shoulders and face , but it didn’t do much for the headaches. This helped rule out ‘tension type’ headaches.

I must agree with @vdm

@vdm

Just my 2cts as usual… I’d say don’t let any chiropractor or osteopath “adjust” your neck

For some, ‘a click and a crunch’ can work wonders, but when you’ve got some structural issues ‘a click and a crunch’ can cause more harm than good.

Merl from the Modsupport Team

[Jules]

Same as @Isaiah_40_31 , no answers, but prayers and hugs for you

[KoolDude]

Thank you all for the good advices and comments here. It really helps me in this time of uncertainty. @Mod_support When you are at loss, you go back to the drawing board and see what else is at play here. Thank you for the detailed comment. It really touches the points very well.

[Skatkat]

I have had all of the symptoms you describe and more, the muscles down the right hand side of my entire body tighten up and my face muscles. I’ve had a CT scan and I think it’s unlikely to come back with Eagle Syndrome or anything else to be honest (I’ve had lots of MRI scans of neck, thoracic spine, lumbar spine and brain). I’ve stayed on here because I haven’t had my CT neck/head scan results yet. I have found however, that I am incredibly tense, even when I don’t think that I am. Anything can set this off and it gets worse in winter when I’m cold because I tend to tense up more and walk with my shoulders raised to try to keep myself warm. I have now resigned to the fact that although I don’t feel anxious as such (I had a massive anxiety episode similar to yours that lasted months back in 2021) I do feel tense. I don’t breathe properly, I sort of breath hold, and I think about my neck and symptoms all day long which isn’t helping. Sometimes, when I take some deep breaths in my muscles actually release which is also a weird feeling. I’m so tense that I actually manage to tense up all the muscles in my face, mouth and nose which leads to all sorts of symptoms and I sort of keep my chest raised and inflated all the time which impacts my breathing. I’ve been trying to concentrate on releasing it all and it does get better, but I find that I have to lie down and do this a few times a day which isn’t practical. I’m now thinking my symptoms might be more related to breathing pattern disorder & I’m going to get some physio for that while I wait for my CT scans. Have you tried any breathing exercises for your anxiety?

[Leah]

With the tension (which I also have on the left side, side of my styloid/C1 problem)…I also have wondered if my phrenic nerve has been compromised, which affects my breathing …

[KoolDude]

@Skatkat

Have you tried any breathing exercises for your anxiety?

I used to meditate prior to my symptoms and before I start meditating, I would do 10 deep breaths. Lately I can’t even meditate the reason is when I sit upright, I feel my facial muscles tense and my traps get tight and also get temple pressure that I can’t even focus on my breath anymore. I was hoping to go back to meditation if my symptoms were little bit less but that is proving to be illusive.

[Skatkat]

That sounds a lot like what I am going through, it has been worse recently and some nights my breathing is so bad that I wonder if it will just stop in my sleep. My oxygen levels fell to 88% last night (I have a Fitbit) and it’s usually in the 90s. During the day my oxygen levels are usually over 95% but my breathing just doesn’t feel right.

[Leah]

If the traps and temporalis has been after your recent surgery (or prior either) I would look into accessory and trigeminal (occipital?) nerves being irritated. Nerve pain med would help while they are healing. Would also try the thermacare hot patches on your traps to see if they will relax, causing a chain reaction to nerve irritation.

My hypothesis, spasmed traps will pull your skull down as well as clamp down on occipital nerves. Not sure yet if/how that impacts trigeminal.

Nerve supply[edit]

As with the other muscles of mastication, control of the temporal muscle comes from the third (mandibular) branch of the [trigeminal nerve](Trigeminal nerve - Wikipedia). Specifically, the muscle is supplied by the deep temporal nerves. At least 6 smaller branches recruit muscle fibres the most when each has the maximal leverage.[4

Occipital/trapezius
https://www.thenerve.net/journal/view.php?number=181#:~:text=Although%20the%20cause%20of%20occipital,be%20the%20most%20common%20cause.

Although the cause of occipital neuralgia is mostly unknown, entrapment of the greater occipital nerve (GON) at its piercing point of the tendinous aponeurotic attachment of the trapezius at the superior nuchal line has been reported to be the most common cause.

[KoolDude]

@Leah

My hypothesis, spasmed traps will pull your skull down as well as clamp down on occipital nerves. Not sure yet if/how that impacts trigeminal.

Thanks @Leah for the tips here. That may well be true. I have had stiff/tight traps since the beginning of symptoms. I thought they were related to IJVS.

[KoolDude]

The Irony is when I run on the treadmill for 20 minutes, my symptoms are better particularly the facial tugging/pressure sensation. This makes me suspect something to do with blood/Fluid(CFS) circulation is at play here.

[vdm]

Hm… Do you do full body stretches before and after running? Is your body hydrated enough during/post exercising?.. maybe some elements/vitamins deficiency is causing muscle stiffness afterwards?..