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    Old 10-14-2009, 11:41 AM   #1
    Cathy01
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    Spinal fluid leakage

    A good friend of mine has been having problems with spinal fluid leakage for at least 6 months now. He went in for an out patient surgery and had a spinal block. For a month or so the Dr's wouldn't give him pain meds, was having severe headaches. Wanted to send him to a pain clinic...Then realized it maybe spinal leakage. They finally did a patch, which didn't work. Now he has been sent to Mayo in Rochester Mn for multiple tests for a week...nothing done so far...Has anyone had a good outcome from this kind of long term problem with spinal fluid leakage?

     
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    Old 10-14-2009, 07:50 PM   #2
    jennybyc
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    Re: Spinal fluid leakage

    Not long ago the show Mystery Diagnosis on TLC did a show on spinal fluid leakage. It took this poor woman years to get a diagnosis and then 17 surgeries to get a patch to take. This is a tough problem and if anyone can help, the Mayo should be able to do it.

    I'll be saying some prayers for him....................Jenny

     
    Old 10-14-2009, 08:54 PM   #3
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    Re: Spinal fluid leakage

    Those headaches are killers - I am sorry for your friend. I had a leak many years ago after a spinal tap. They had me down for 2 weeks in bed. I took steroids, was told to drink caffenated drinks and lots of water, and finally had to have a blood patch which took. There is another surgery if the patches do not take.

     
    Old 10-14-2009, 08:54 PM   #4
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    Re: Spinal fluid leakage

    They need to find where the leak is and possibly do a surgical patch. Years ago with my first lumbar fusion the doctor nicked the area around the spinal cord (the dura mater) and he fixed it during surgery. About 2 months later it began leaking again. I was put in the hospital with sort of a "spinal catheter". The leak healed on it's own after about 8 days. If it had not I was supposed to have a surgical fix done on abotu day 10. Mayo is good. As long as he tells them exactly where the puncture was and they can get medical records from the place that did the spinal block.
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    Old 10-14-2009, 11:30 PM   #5
    matt3507
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    Re: Spinal fluid leakage

    Hi Cathy,

    I had a procedure done about a month ago and I had the spinal leakage with the spinal headache. Is your friend still having the severe headaches all this time? They told me to lay flat. It worked a little, but that is not practical of course long term. I really don't know what is going on because I got the contrast dye and then also a steroid injection about 2 weeks apart. I have nose dived since. I hope you will please visit this thread and update us. I really want to hear. thx, matt

    P.S. jenny, neck, spine --> awesome info. thanks! They just told me at the hospital that it would heal within 7 days. I am taking this info. to my doc. I am getting beat down. I hope you all are doing ok matt

    Last edited by matt3507; 10-15-2009 at 12:08 AM.

     
    Old 10-15-2009, 09:00 AM   #6
    Cathy01
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    Re: Spinal fluid leakage

    He finished with all the tests they wanted to do, actually one day earlier than expected. They did one injecting a dye. I think they didn't need any more tests because they found what they needed to find. He has an appointment next week to go over what they found. Of course the MRI tech can't tell you what he sees, they have to get info from the doctor. One person did say there is lower than normal pressure in the spinal fluid, which I would assume indicates leakage...I guess he needs to wait and see. He is afraid to take pain meds because of possible addiction. He had a drinking problem 20 years ago so is afraid of any possible addiction. He is active, rides his bike a lot. I wonder if his activity level acerbates his condition. I would think his doctors told him to lay off strenuous activity...but I think he is stubborn.

    Last edited by Cathy01; 10-16-2009 at 06:25 AM.

     
    Old 11-03-2009, 09:42 AM   #7
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    Re: Spinal fluid leakage

    My friend got results. Yes he has a very small leak but can't be seen on any MRI's so anything, only clue is slightly lower than normal fluid pressure and History of having a epidural or spinal black for some somewhat minor surgery about 1 yr or 9 months ago. Dr wants him to wait and hopefully will resolve on its own, but to re-visit it in 3 months or if anything worsens. Friend says he is maybe getting gradually a small bit better but is really worn from the pain. Only takes stronger pain meds if absolutely necessary, about 1 every other day or so, or over the counter stuff. The Dr at Mayo took a lot of time to go over his results with friend so he feels pretty good about the evaluations. I can't believe his regular doctors didn't believe him and thought it was "all in his head" and wanted him to go to "pain clinic" for his imagined pain.

     
    Old 11-03-2009, 10:16 AM   #8
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    Re: Spinal fluid leakage

    The tough part is that after a leak you keep wondering about any headache you have - thus his thought that he may be getting better but not beiong quite sure. After my leak healed I went back to my doctor a few times to see if I had a spinal headache. Half the time, in reality, I turned a headache into a "what if" and all that was occurring was a standard tension or sinus headache. Is he using caffeine? That often helps spinal headaches. Every day he'll just have to evaluate the pain and if it's the same as a spinal headache pain or maybe just a run of the mill headache. Took me at least 6 months to stop thinking every headache was spinal so reassure him it takes time. And let him know my leak did heal on it's own over a few months.
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    Old 06-25-2010, 02:21 PM   #9
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    Re: Spinal fluid leakage

    I am in the same boat. I went into the hospital June 2nd 2010 and had a spinal tap and CT on June 3rd. It is now 3 weeks later and I still am not back to work nor anywhere close. The doctors told me I should have felt better in 3-5 days and that I have a very rare case but after reading multiple threads see that this isn't very rare at all. I had a blood patch done that somewhat helped but I still have a hard time standing for more than 5 minutes. Someone has to know what to do!

     
    Old 06-27-2010, 09:00 AM   #10
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    Re: Spinal fluid leakage

    If the blood patch helped, most people would repeat the blood patch.

    A hole from a spinal tap needle is very small, and generally will heal if given enough time. Blood patching (once, twice if needed) is generally all that is needed (along with time).

     
    Old 07-03-2010, 01:01 AM   #11
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    Re: Spinal fluid leakage

    Since you've all had experience with low CSF headaches, can anyone tell me how they feel, and how they might be different from high CSF headaches? Are there any commonly accompanying symptoms? I've read all the generic webpages, but I wanted to know from people who actually experienced this? Thanks guys!

     
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