Undetected CSF leak for 2 and a half years...

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I don't know where to begin.  I had surgery for trigeminal neuralgia in November of 2013.  It's called a microvascular decompression.  I ended up incredibly worse...my symptoms are gathered all in a paragraph.  Anyways, I've ended up getting a pain pump put in.  After my pain pump implant, I had these horrible excruciating spinal headaches for 5 days straight.  They've eased up, but never gone away, well the past 2 weeks have been a living hell.  I haven't even known my own name the pain has been so mad.  I want to get your opinion on something.  I went to the local ER, and they did a CT scan.  He gave me meds and he looked at me and said, nothing is showing up on the CT, but my gut feeling is that you're dealing with an undetected CSF leak.  He said not all CSF leaks show up on MRIs, you've been through everything and nothing is helping.  Your symptoms match and everything.  You need to call your neurosurgeon first thing in the morning and go over everything.  Unfortunately, my neurosurgeon is out of town, and I'm not sure if he'll listen.  The nurse he used to have forgot to relay the information that I accidentally cracked my head up against a concrete wall on accident(my bedroom was in the basement of our old place), and that's when all of this stuff started.  I don't ever go online for anything, but I started googling undetected CSF leaks.  I came across all of you.  Below my symptoms are listed.  My thing is that my MVD worked, I was pain free up until that one night that I hit my head.  Then everything changed.  I am asking you to consider this angle and let me know if it's a real possibility.  I've never wanted more surgery, never wanted all this medication, I've just been trying to get my life back.  I've literally not known who I am these past 2 and a half years.


Awful horrible headache that's indescribable for 2 and a half years almost, it's sometimes just 1 sided on the left, but horrible pressure like my face is being pumped with helium and all the bones on my face are crushing.  Jaw pain and pressure.  Numbness in my face/cheek.  Pressure around my nose, it feels broken all the time.  If I stay in bed for days and days and days the pain gets some relief, but as soon as I stand up within 20-30 minutes it's at a full blown 10.  I told you about the numbness I got all down my legs, they literally feel like jello most of the time.  I have ringing and popping noises in my head and ear all the time.  Weak neck and excruciating pain if I turn it slightly.  My head feels heavy all the time, sometimes it's hard to keep myself sitting up just from the heaviness alone.  Hot and cold sensations on my face.  Muscle weakness in my arms.  I won't even begin to list the cognitive and memory issues.  Honestly, the list is endless...all me.  

Would there even be a REMOTE chance that I've been dealing with this the past 2 and a half years?  At this point, I'm willing to take remote chances just to get my life back, but I don't want to go through more unnecessary surgeries and procedures if there is something else that may help.  I'm also wondering if maybe undetected CSF leaks are more common than what doctors will say.


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  • Posted

    Im so sorry. It definitely sounds like a csf leak. Its so hard to find Drs who want to help or even admit you have a csf leak. Ive been this past year to NC, MD, and two places about four aways from home. Theyve said theres a leak but cant find it. Ive been bedridden 10 months. Sounds like you might have intracranial hypotension. Worse sitiing and standing. Ive also had two blood patches. I hear some people take quite a few blood patches before they work but the leak has to be found to have the patch put in that area. Look up Dr. Schievink from LA, theres questions and answers that he has posted. Hes suppose to be the best. This stuff is horrible. I also have your symptoms. The popping in the head is crazy and people around me hear it. The pain is worse than natural child birth. I hope you get help.
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    • Posted

      Thanks for your response...the more I search...the deeper and deeper I go, the more people I talk to, it seems like that's what it is...I'm freakin' tired.  And I will go through a series of them if I have to.
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    • Posted

      I feel the same but you have to find a dr who is willing to help you. Ive had to beg for help. I hope you get the help you need. I lost my job , my place and missed out on so much. Its so debilitating. Ive lost my independence. Dr.s should really learn more about this.
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  • Posted

    Hi Melinda,

    Leaks are plugged by using blood or synthetic patches. Low CSF infact does have an endless list of problems, I know all to well! 

    "Once" the patch takes, you will notice a marked improvement over a fairly short period of time. 

     It may be possible that you have had a low amount of CSF in your spine for a long period of time. A number of symptoms that you have talked about would lead me to believe that, especially the cognitive and memory issues, which I also had.


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  • Posted

    Hey girl , I hope you write back to me because this was 4 months ago. But I'm on the same boat!!! I believe I have an undetected CSF leak that's been going on for about 2 and a half years now. My symptoms aren't that bad thankfully. My leak down my nose comes and goes. But recently I've noticed that my muscles started shaking more and more. And I'm very very lucky that I don't really get any debilitating headaches at all. It's very rare that I do. I'm very scared that my symptoms will progressed and I really have to do something about it and go see this really good specialist out in LA called Dr. Schievink. They say he's the best in the world. What's your status like now? Have u gotten better?
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