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CSF leak undetected

Posted , 24 users are following.

michelle0327
michelle0327

After MRI with contrast of brain, cervical, thorasic,  and lumbar my csf leak was not detected. From what I am reading this is pretty normal not to find the leak. I was dx with intracranial hypotension a week ago after suffering headaches for 5 weeks and being put through chronic migraine treatment torture. I did a  nerve block,  IV treatments at home,  several IM medicaitons,  oral meds,  several trips to the ER and nothing was helping. Finally my Dr. ordered the Lumbar Puncture and there realized the pressure was so low. I am on bedrest for now and IV fluids at home for the next 7 days and advised drink a lot of fluids. My Dr. said if not better by Tuesday they will attempt a blood patch even though they don't know where the leak is. I am hesitant with that and looking for advise from those that have been through this. Symptoms I have had over the past month are the headache of course that sometimes just 1 side sometimes both mostly feels like a lot of pressure, jaw pain pressure, numbness in my face/cheek, a lot of recent pressure around the bridge of my nose. I have numbness down my legs, feet, hips, and especially my toes, heels and knees. I hear ringing and popping/tapping noise in my head/ear all the time. If I remain in bed my pain is 1/2 but after sitting up for 20-30 minutues is starts to rise and within an hour easily I can be at a 10. I hope this all sounds a like for you all and that my dr. really is on the right path. She stated yesterday my brain MRI looks normal just kept stating no leak. Any suggestions, comments would be appreciated. Thanks, Michelle from Ohio  

1 like, 45 replies

45 Replies

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  • jon43423
    jon43423 michelle0327

    Posted

    Hi Michelle. My name is Jon Wilt. I live in Az. I had a csf leak post diskectomy. I have since had it sugically repaired. I still have headaches, pressure on the ears/nose, constant ear/face popping etc. I was hoping you would share with me a little more about your recovery in hopes that we can help one another. I am scheduled for radioablasion of some cranial nerves on Friday. I know it has been 11 months since your post. Hope you are well! Thank you. Jon
  • hayley_02525
    hayley_02525 michelle0327

    Posted

    Hi Michelle did you have a cisternogram? I have to be one and I'm quite worried about it why do they do exactly. I've had 4 lumbar puncture before when I had bacterial meningitis but how far do they tilt you and how long for? X

  • NotSoDitzyNow
    NotSoDitzyNow michelle0327

    Posted

    I hope you have already gotten this resolved. If not I recommend to look in New York City. There you will find the only hospital that can locate the location of your lea
  • lisa24871
    lisa24871 michelle0327

    Posted

    Hello, this must be fate I found you. My friend 7 days ago had a blood patch for a csf leak with symptoms like yours. She was told she may need another one and is booked in for that in a months time. She said the procedure was fine but was disappointed it hadn’t worked first time but understood why. I think a blood patch is the best way to treat a leak once they know where it is. It can be so tiny but cause so much chaos with your health . Good luck 
  • melissa4177
    melissa4177 michelle0327

    Posted

    Hi, ok since I was 13 I started having sever migraines. Up until 2 years ago I just thought that’s all it was. Until I noticed they were getting more intense and they always started at the base of my neck. Most of the headaches were on one side. I got into a car accident and had problems with my knee. When I went for a f/up the doctor told me I had sever muscle weakness on one side, that I need a neurologist. I started having muscle spasms, to the point I couldn’t hold a cigarette in the morning without my hand or fingers twitching.  I just went to the neurologist and she had me have a CAT scan of the brain and cervical spine up by my neck. She said she feels it’s a CSF Leak. Well a few days passed and I had the worst migraine of my life, so I called the on call doctor who stated to me, he as well as my doctor are very concerned. I had my test today and I Am very scared. What if it comes back to no leak? Or what if there is. I am a single mom of an Autistic lil girl. How could I take care of her? Do my symptoms sound like a CSF? Any advice or what steps I would have to take?

    • Guest
      Guest melissa4177

      Posted

      Sounds awful. I’m just learning about CSF leaks and really think this may be my problem. I had a post dural puncture during my labor from an epidural. It was not patched and resolved on it’s own. Approximately 10 months later I started getting Migraines more frequently but also felt this odd pressure in my ears, and ringing. I told my Doc but said it was just headaches. Does anyone know if CSF leaks symptoms can come and go? I had from October to December pretty steady headaches then nothing until April.. now a Month of this same feeling... Ears muffled, neck stiff and Migraines. Feels better when I lay down... My doctor again dismissed me and said that Post Dural Headaches only occur right after the puncture but I’m starting to wonder if this is my problem? Also getting Nausea, occasional dizziness. Some days are better than others. 
    • dale1954
      dale1954 Guest

      Posted

      I have same symptoms ... one of my Drs said my leak was spontaneous... Been going on for years. Some months are not too bad ( some kind of symptoms daily) and then BOOM.. I get weeks of horrible symptoms.. and I have to lay flat in bed almost 24/7 and increase my caffeine and fluids.
  • Guest
    Guest michelle0327

    Posted

    I had a post dural puncture during my labor from an epidural. It was not patched and resolved on it’s own. Approximately 10 months later I started getting Migraines more frequently but also felt this odd pressure in my ears, and ringing. I told my Doc but said it was just headaches. Does anyone know if CSF leaks symptoms can come and go? I had from October to December pretty steady headaches then nothing until April.. now a Month of this same feeling... Ears muffled, neck stiff and Migraines. Feels better when I lay down... My doctor again dismissed me and said that Post Dural Headaches only occur right after the puncture but I’m starting to wonder if this is my problem? Also getting Nausea, occasional dizziness. Some days are better than others. 
  • dale1954
    dale1954 michelle0327

    Posted

    Did your Doctors ever find the problem? I am going thru very similar symptoms
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