Cerebrospinal Fluid Leak

Hi, my name is TheBee. I'm here because I have spontaneous intracranial hypotension caused by a spinal CSF leak.

#MightyTogether #Lupus #Fibromyalgia #BrainInjury

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….

MICHELLE X

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

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.

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
#Syringomyelia