Cerebrospinal Fluid Leak

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Cerebrospinal Fluid Leak
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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….

    MICHELLE X

    Post

    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

    1 reaction 3 comments
    Post

    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.

    38 comments
    Post

    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
    #Syringomyelia

    7 comments
    Post

    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

    Post
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    How much can one person take ?

    It’s happening again, stiff neck and now the almighty pulsing pain into my brain if I move position.
    I feel sick, new doctors will not listen. Still no face to face appointment. How long am I going to have to suffer without help 😔
    I have had two epidural (not elective but emergency surgery) Three lumber punctures due to suspected meningitis and I have eds.
    feeling very alone right now. My family are lovely and caring but they just don’t get the magnitude of pain. Picture of our latest family member 😊
    #CerebrospinalFluidLeak #CSF #SpinalCSFLeak #Migraine #migrainwarrior #Pain #ChronicPain

    6 comments
    Post

    I think I've had symptoms of a CSF leak since 2019, but I'm too scared to see a doctor about it because I'll feel like they'd judge me for considering something like that, despite my symptoms and the fact I've got #PosturalOrthostaticTachycardiaSyndrome and #EhlersDanlosSyndrome :( I don't know what to do.

    #csfleaks

    8 comments
    Post

    Not feeling good today.

    Does anyone else just wake up and feel like crying because they're still tired? 😔 I went to bed early last night and had to wake up very early for work. I usually sleep well too, I often sleep all night but it's never enough. I've felt miserable since I woke up because every morning, I wake up feeling too tired to get out of bed but I still have to for work.

    Then today I arrived at work and my nerve got trapped in my elbow as I walked in which just felt like the icing on the cake.

    My job is a physical one, often walking a lot and no time to sit down. Lately my legs have just been aching and hurting following a shift. Just driving home hurt my legs and it only relieves when I raise them and rest. The intense full body ache can be so overwhelming sometimes.

    I feel like I'm falling apart but no one seems to notice, care or take it seriously. All my wisdom teeth are impacted so they are now causing me problems and headaches. I feel like I'm presenting symptoms of a CSF leak but I doubt any doctor will take me seriously so I don't want to see them, even though it's affecting my work.

    I've got a huge EMA due at the end of the month and I've lost all motivation. I just had a huge row with my mother which never happens and that's made me feel worse.

    On top of that, my friend is constantly messaging me to go out, to go on holiday, to go away somewhere and as an introvert, it's all kind of overwhelming. We are going out tomorrow which means another early morning, and whilst I'm not particularly up for going, I know it's not good for me to stay home all the time.

    #EhlersDanlosSyndrome #POTS #ChronicFatigue #CheckInWithMe

    3 comments