Pachymeningitis: Anyone else?

Do you know of any problems for a person with pachymenigitis to fly...this would be a 9 hour flight and am concerned of any problems this might cause....

I get episodes patchy meningitis and I have to get blood patches done. You should check with your doctor first about flying.

Hello. Glad to find this group. I am 71 & was diagnosed with idiopathic pachymeningitis a year ago. I began to lose the hearing in my left ear. ENT sent me for a MRI. Then sent to a neurologist. Confirmed pachymeningitis. Multiple MRIs. Lumbar puncture showed high protein level in spinal fluid. Sent to infectious disease specialist who ran all sorts of bloodwork. No obvious cause. Have developed vertigo, balance issues & some issues with my gait. My neurologist just retired. A frightening, rare, lonely disease. Not knowing what to expect.

Hi @jrt26 Reallt hoping we can get in touch - your story is very similar to my family members, down to meningioma in cavernous sinus, then radiation, then Pachymeningitis. Things are not going too great and hoping we could discuss what has worked for you and what specialists you see. Scary times and looking for any connections or people in similar shoes. Thank you

Hi @lcb Hoping we are able to connect. A family member has been diagnosed with pachymeningitis and is experiencing complete vision loss in one eye and nearly the second. Been on the journey with steroids and currently rituximab. It is hard to find people with vision loss and this disease at it doesn't hit every body the same. Would love to hear about your journey and gain some insight -- please reach out. Thank you!

Hello from Australia, and another pachymeningitis story 🙁

I have recently been diagnosed with pachymeningitis, and am currently navigating a very different but equally as worrying medical journey which I have outlined below.

My pachymeningitis was identified in July 2025 through an MRI organised by my ENT to eliminate potential neurological causes for numerous recently occurring symptoms, including speech difficulties, tinnitus and vertigo. The pachymeningitis makes my brain feel like it’s been shrink-wrapped (tight feeling in my skull). It wasn’t there in a brain MRI I had 12 months earlier, and I’ve only been aware of the symptoms for less than six months.

Following diagnosis, I subsequently saw a neurologist who referred me for a lumbar puncture and various blood tests. The lumbar puncture opening pressure was 7.0 and the radiologist had difficulty extracting the 10mls of CSF required for pathology testing. As a consequence, a second lumbar puncture was performed at the same time. No opening pressure was taken for the second puncture, but the CSF was extracted very quickly, indicating a higher pressure than the first puncture.

My pathology (blood and CSF) eliminated most known pachymeningitis causes including autoimmune diseases, cancer, IgG4 and tuberculosis.

On the basis of what appeared to be low CSF pressure (based on the first lumbar puncture), my neurologist organised for me to have a full spinal MRI, with the expectation that this would likely identify a CSF leak. Her theory was/is that the pachymeningitis is my brain’s response to a CSF leak, and that it would recede once the leak was fixed (typically through a blood patch).

Disappointingly the spinal MRI did not detect a leak, but it did find that I have multiple cysts all along my spine, something I had no previous knowledge of. This opened up the possibility that a cyst could have burst and caused a CSF leak.

At this point my neurologist referred me to an interventional neuro-radiologist for a CT myelogram (3D spinal imaging) and a third lumbar puncture, in the hope that these would support the CSF leak diagnosis, and I could therefore have a blood patch at the same time.

Disappointingly the myelogram did not detect a leak. Apparently this isn’t unusual though, as up to 20% of CSF leaks aren’t detectable. The myelogram did however provide more information on my spinal cysts, which were identified as spinal meningeal diverticula. A particularly large one was detected in my neck.

The lumbar puncture opening pressure was 10.5, which is low normal but higher than my first puncture from six weeks earlier.

On the basis that all other known potential pachymeningitis causes had been eliminated, and the presence of multiple diverticula, the interventional neuro-radiologist recommended that I proceed with a ‘blind’ blood patch, which I decided to do. This involved injecting 50ml of my own blood into my spinal dura (lumbar) in the hope that some of it will find and patch (by coagulating) any leaks that may be there, albeit ‘hiding’.

It’s now been a week since the blood patch. Unfortunately my pachymeningitis symptoms seem to have worsened, and I have an increasingly painful headache that only started today. I am hoping that this is just a temporary set back but I am frightened. I won’t really know what’s going on until I have another brain MRI.

I am 63 years old and was working full-time until my pachymeningitis diagnosis. I have previously had good health and an active lifestyle.

I know that pachymeningitis is rare, and it’s unlikely that there is anyone out there with a similar story to mine (there certainly don’t seem to be any comparable cases in Australia), but I wanted to share my story nevertheless just in case it helps anyone.

Sorry to hear you have this, Wendy. I had Pachymenengitis 4 years ago. Severe pain behind R eye and headache. 9 lumbar punctures until successful. Total of 14 MRIs. Final diagnosis by open Brain biopsy. Treated at University of Pennsylvania with a second opinion from University of Texas Austin. Treated first with pulse dose steroids that relieved the pain. They also caused a 36lb weight gain, blood sugars requiring insulin, myopathy requiring a year of physical therapy and speech problems. All of these are resolved. Treated subsequently with Rituximab. It was all pretty awful but is all in the past now. I am 80 y/o now. No longer being followed for the problem