Cerebrospinal Fluid Leak

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I wish I knew about this group

I was diagnosed with a frontal temporal meningioma in June 2020 and quickly had it removed. It was simple! What wasn’t simple was the grapefruit sized CSF leak that developed 1 month later. The PA told me the swelling was normal (despite me insisting that it wasn’t) and would go away in 6 months. I spent all of 2020 afraid to leave my house with no idea what was wrong with me. My grandma urged me to send them a picture finally and they realized how WRONG the PA was. 5 surgeries later, they were finally able to repair the leak but I am a shell of who I was before. I’ve learned how important it is to pushback when you know something is wrong.

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I appreciate this #affirmation today. I have an MRI (with contrast) scheduled for early morning tomorrow. It was scheduled over a year ago, so I am dealing with the anxiety of maybe not getting answers from this MRI. Or getting scary answers. Also not a fan with the loud and small space. #CheckInWithMe #EhlersDanlosSyndrome #CerebrospinalFluidLeak

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Arachnoiditis newbie !

Hi ya I’m new on here. So glad I’ve found this site. I always try reaching out to people regarding arachnidoiditis but because it’s a painful disease people aren’t in no fit state to reply 🥺 which I totally get 💕
Alittle history of my injury-
I have arach from an epidural in labour, CSF leak gave me Arach over the 18 months I was leaking for.

I have had stem cell therapy in arioza my symptoms have got better, it’s still early days (3 months) but have high hopes I will heal alittle more. 🙏🏻
Can give details if anyone needs!

I just wanted to ask if anyone knew of a Pilates teacher in London or yoga ?
Also I’m thinking of a holiday next Aug to Dubai, the last flight was horrendous is there anything I can do prior to make it more easy on nerves ?
I have tried to get a cruise but no luck from London -Dubai.

Would really appreciate any advice

Thank you….



I’m new here!

Hi, my name is Shelly. I'm here because I have arachnoidtis from a CSF leak in the birth of my baby last year. It all started from a Epidural (don’t have them)

#MightyTogether #Arachnoiditis

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Does anyone here experience constant daily headaches?

I’ve had a constant headache every day for the past 8 months. My doctors can’t find a cause but also aren’t convinced it’s primary headache. I’m not able to work and I’m currently taking the semester off from my PhD program. Im hoping someone here has had a similar experience or has some creative ideas.

My symptoms:
All pain is right sided and increases when I’m upright (sitting or standing) and gets better when I lay down.
- constant pain at the base of the back of my head just above my neck on the right (it feels like pressure), on the top of the right side of my head, behind my right eye, and in my right ear, in my neck on the right side, in my right shoulder. No throbbing or pulsing.
- burning and numbness on the right side of my face
- decreased sensation on the right side of my face especially my forehead and from the top of my cheek to my jaw (eye area has normal touch sensation). This was intermittent and is now constant
- drooping at the right corner of my mouth (no drooping of my right eye). Worsens when I lay on my left side. Was intermittent now constant
- constant static sound in my right ear, intermittent loud ringing, intermittent decreased ability to hear (like I’m under water)
- new floaters in right eye (constant black dots of irregular shape that move with my eye)
- light sensitivity
- exhaustion
- decreased attention found in cognitive testing

Testing in order:
- MRI - normal
- CT - normal
- CT-A - normal (no vascular dissection anurism etc)
- CT-M - normal (no CSF leak or CSF Venus fistula)
- Neuro cog testing - decreased attention specifically inhibition
- EEG - normal, no seizures
- repeat MRI - chronic sinusitis on RT behind eye (now treated) slightly low cerebellar tonsils (3 mm) on right

Meds I’ve tried:
- Rizatriptan - no effect
- Metoprolol - slept for 3 days only waking to go to the bathroom. Ended up in urgent care.
- Zolmitriptan - no improvement (I sleep for 2 days though)
- Amovig - took for 3 months, no improvement
- Propranolol- no improvement
- Emgality- on month 3 of 4, no improvement

Thanks to anyone who has thoughts and spoons to respond.

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Recovering from surgery

I'm struggling, friends. 12/22/2021, I had surgery (posterior fossa craniectomy, duraplasty & C1 laminectomy. Went well until I developed a CSF leak that required another surgery on 2/17/2022 to find & repair the dural leak. I'm back to work & outwardly doing well but behind closed doors...not so much. Exacerbation of depression & anxiety, sleeping a lot, no energy, no motivation, withdrawing from social activities & just feeling scared & stuck


Future appointment for potential CSF leak

About 10 days ago, I was unexpectedly and urgently referred to neurosurgery and I'm so scared. The letter came through yesterday saying I'm on the waiting list.

I didn't expect to be referred. I was trying to send a sample but they needed me to see a nurse, which I did and she just said they could do a test.

But then I spoke with a doctor just for a medication review and she saw the notes from my previous chat with the nurse and asked me about it. She said she thinks they won't test it so she needs to double check. She rang me back and told me she has referred me urgently to neurosurgery and I immediately had an anxiety attack.

I was hoping for a simple little test to be done to rule it out. I know my symptoms don't make much sense and they definitely don't seem to be allergy based. I've had the same allergies all my life, I've been affected like this before. It's affecting my life and my work at his point, it's embarrassing.

So at the same time, I'm grateful to have a doctor who's on the ball about all of this and felt it necessary to refer me but I can't help but feel like I'm wasting their time.

What if it all comes back normal? I feel like the doctor will laugh at me and patronise me and act like I'm being a hypochondriac.

It sounds terrible, but I hope they find something wrong just to be like 'see I'm not a hypochondriac, I knew something was wrong'.

Idk, I'm just doubting myself. I find it so hard to advocate for myself. :( I haven't even told my mum because I don't want her to laugh at me basically saying it's nothing and making me feel worse. I'd rather hide it and only say something if the findings do show what I thought.

Either way, maybe they can figure out what's happening and work out a way to stop it happening. I don't want to live with this for the rest of my life.

Any advice/help? Anyone been to see a neurosurgeon?

#EhlersDanlosSyndrome #CerebrospinalFluidLeak #PosturalOrthostaticTachycardiaSyndrome #Anxiety #MentalHealth