Meningeal Diverticula or Perineural Cysts

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It’s been just under 2 months since my left side styloidectomy, and aside from a few days of relief immediately post surgery, I have not had any relief from my symptoms. On Dr. Hepworth’s advice I’m currently waiting for a new doctor to review my case and determine whether or not he will do a catheter venogram to investigate a potential constriction of my Internal Jugular Vein within my skull.

In the meantime, a different neurologist ordered a full spine MRI to determine whether I might have a CSF leak contributing to my symptoms. I just got the results back, and apparently I have “multiple dilated nerve root sleeves (perineural cysts) at most levels throughout the spine, especially thoracic and lumbar.” AKA “Meningeal diverticula at all levels.”

I have no idea what that means, and the internet is a little too vast, so if any of you have experience with this particular medical condition, please point me towards some good reading material, or let me know what your experience has been.

Apparently this MRI did not show any actual CSF leaks, but the doctor’s note says “these perineural cysts may be places where CSF leak happens…If we have at least moderate suspicion of a spinal CSF leak, the next step to try to find one would be a dynamic CT myelogram. That involves a lumbar puncture, positioning the body to one side then inject iodine contrast inside the spinal canal followed by taking CT images of the whole spine. Alternatively, an empirical blood patch (thoracic and lumbar spine, under CT guidance) can be considered.”

The doctor then asks which of these two options I want to pursue. I have about a million questions before I can make that decision, or know if either of them are worth going through with. It will be about a month before I get to see the doctor who wrote up the report, so I’ve got a while to try and understand this on my own. Feel free to respond if you have answers to any of these questions, personal experience or ideas on where I should look to do some research.

  • Can perineural cysts be detrimental on their own? Or are they just an indication of possible CSF leak?
  • What causes perineural cysts/Meningeal Diverticula?
  • Could these cysts indicate a different problem?
  • What can be done if a CSF leak is found?
  • Is there no other less invasive way to determine whether my spine is leaking fluid?
  • What are the risks/benefits of each of the two options offered for further investigation?
  • Could a CSF leak be causing all my issues?
  • How does a CSF leak relate to IJV constriction, which I’ve also been diagnosed with?
  • What’s the relationship between Eagles and CSF leak/perineural cysts/Meningeal Diverticula?
  • Should I focus on resolving IJV constriction first? Or resolving potential CSF leak first?
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I guess you might already be on these groups, but they might have more experience in dealing with CSF leaks:

Though they have their own vibe, sometimes quite negative. Hijacking the threads and veering offtopic is much more common than on this forum.

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Poor you, it sounds like you have some difficult decisions to make without much info! It’s not something I’ve any knowledge of so can’t really help…One of our UK members who had IH & jugular compression (but wasn’t able to get the styloidectomy here) I think was diagnosed with a spinal CSF leak, @Natty04, but not with the cysts that you’ve been diagnosed with. Here’s a link to the discussion with her update, I don’t know if it’s at all helpful or if you could send her a message:
Eye vision pulsing - General - Living with Eagle
If the jugular veins are constricted enough to cause increased intracranial hypertension then that can cause CSF leaks if there’s a weakness somewhere, we have had a few members who’ve had that…@JustBreathe has had alot of issues.
I guess you’ll have to be guided by the doctors with this one, do you know how long you’ll have to wait to see the vascular doc that Dr Hepworth’s referred you to? Might it be before you see the spinal doctor?

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Hey MsBearshark,
Firstly, I am NOT a Dr and with all of these questions, they need to be put to your treating dr who knows your history and personal circumstances. The information I can provide is from my own personal experience. I’ve had a few CSF issues, not related to Eagles. As I say I’m no Dr, so my explanations will be in VERY layman terms.

One of the simplest ways to look a nerves is like the electrical wiring in your house. You have the copper wire, then the first insulator (Red/Black plastic) then you have the outside insulator (White plastic sleeve). The outside insulator of nerves is called the myelin sheath. The meninges is made up of 3 layers. The dura matter, the arachnoid matter and the pia matter, a cyst in any of these layers can be called meningeal diverticula.
Now ‘cysts’, cysts in their simplest forms are fluid filled sacs. Sometimes they can form around a ‘foreign object’ ie an ingrown hair. Our body identifies it as foreign (or in the wrong place) and develops a skin around it, then fills with fluid, forming a cyst. I used the example of an ingrown hair, but it can be something as simple as a skin cell that the body forms a cyst around.
Some cysts can grow our whole lives with very little impact whatsoever, but then some can form on, in or near vital organs and medical intervention maybe required.

I will try to answer some of your specific question:-

What can be done if a CSF leak is found? Again, this needs to be determined by the neuro-team as to an appropriate course of action. Some leaks can be left to seal themselves. Some may need what is known as a ‘Blood patch’, again in very basic terms, they can inject a small amount of blood into the CSF and the blood will travel to the hole, block it off and seal it.

Is there no other less invasive way to determine whether my spine is leaking fluid? Not with the same level of accuracy as a lumber puncture, they can use CT, MRI but best practice is lumber puncture.

Could a CSF leak be causing all my issues? For every dr who says ‘Yes’, there will be another Dr who totally disagrees. You may have some symptoms which can have a direct correlation to a leak, but by the same accord some symptoms that the medicos disagree is related in any way. This is a journey I’ve been on in trying to get answers "…yes, there is a leak but that wouldn’t be why you have THOSE symptoms…’ My leak slowly sealed on it’s own and ‘some’ of my symptoms slowly vanished.

CSF is neurological and, as with most things neurological, how it all affects one person vs another can be miles apart. For some blood patches can work, first try. For others, they may need repeated treatments for the patch to adhere. For some the hole maybe too big for a blood patch, so leaving it to seal itself can be the only option. Because it’s neurological there can be some symptoms that the medicos swear aren’t related, but in neuro terms 1mm to the left or 1mm to the right can make a world of difference both in effect and recovery.
Your other questions are not something I can answer and I’d recommend speaking to your dr for these.

I would suggest that a 2nd opinion may well be worth searching out, even if it is just to confirm the diagnosis and treatment plan suggested by your medical team are appropriate.

Merl from the Modsupport Team

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Hi Jules. Yes one of them was me Maya.

I had a catheter venogram which only showed very subtle pressure gradients, within my jugular veins.

As my symptoms came on very suddenly over night, I still suspected a spinal csf leak. I then went on to have a MR Myelogram (non invasive) which showed extra dural fluid mainly in my thoracic spine.

I am now awaiting a dynamic myelogram and icp bolt monitoring.

I suggest that you join the Facebook for csf leaks. Lots of useful information on there and patient experience etc

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I am not a doctor but based on the number of research I read, CSF leaks are primarily driven by increased intercranial pressure that is why sealing the leak fails often because the occult IIH which causes CSF leak on weak dura spots is not often addressed before patching the CSF leak. There are a number of studies showing the relationship between CSF leaks and IIH (Some papers can be found in Research Papers area here). The leaks can show up anywhere anywhere from the skull to the spinal cord.

As far as perineural cysts is concerned, they can indeed be caused by IIH as the increase in CSF load is transferred to the spine when standing up and cause perineural cysts/Meningeal Diverticula. A quick googling resulted the following 2 studies linking it to raised intercranial pressure.

So my uneducated answer is, focus on resolving the IJV compression which might be driving all of this and then potentially you might resolve any CSF leak or cysts stemming from it.

"Radiculopathy has been reported as a falsely localizing sign in severe PTCS, presumably due to displacement or compression of nerve roots from high intracranial pressure.10,11 There are case reports of patients with IIH and sensory changes in the lumbosacral distribution secondary to perineural cysts. Their symptoms resolved with drainage of the cysts suggesting that the elevated intracranial pressure caused the cysts to expand and ultimately cause symptoms. It is possible that cervical perineural cysts could cause a radiculopathy, however, our patient did not have such findings on spinal cord imaging.12 Additionally, the cysts usually take months to develop and thus we may have not seen them in such an acute presentation of PTCS in our case. "
Study : https://journals.sagepub.com/doi/full/10.1177/1941874420945565

" ** We describe 2 patients with idiopathic intracranial hypertension and symptomatic sacral perineural cysts. In both cases the treatment of idiopathic intracranial hypertension ameliorated the sacral perineural cyst symptoms, and in 1 case we observed shrinking of the sacral perineural cysts."**

Study : https://www.sciencedirect.com/science/article/abs/pii/S1878875018316784#:~:text=Idiopathic%20intracranial%20hypertension%20refers%20to,roots%20near%20the%20dorsal%20ganglia.

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Thank you all for the information, connection to other groups and personal experiences. I will of course discuss with my doctors, but it’s good to hear these opinions, as the two doctors I’m working with have different approaches.

From what I’ve read so far, it seems like focusing on getting concrete information about the jugular compression should be my focus for now.

FYI, the new users guide in the Jugular Outflow Disorders Facebook group gives a very helpful overview of IJV anatomy, issues and current state of medical understanding.

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