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Healed and Sealed

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    Healed and Sealed

    Sorry to have to start this thread anew, but it couldn't be brought over to the new layout.
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    Link to original Healed and Sealed

    This sticky thread should be used to post all leaker success stories.
    Please include type of leak, location, dates/duration, treatments, etc. Contact information for doctors who provided treatment would be useful.

    Original thread:
    Only registered and activated users can see links., Click Here To Register...
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story


      I had an LP that caused my leak in October 2010. After seeing at least 5 different doctors over 7 months & having too many tests and procedures to mention one of the doctors mentioned that the Topimax I was taking for migraines was probably decreasing the volume of CSF. Within 6 weeks of stopping the Topimax I was 100 better! I wasn't crazy after all. The theory is that my CSF was too low for me to heal from the LP.

      The neuro that ordered the LP doubled my dosage of Topimax the same day as the LP! Apparently it is pretty widely known that Topimax decreases CSF production. The neuro that did all of this was convinced that I had a tension headache. I have had & continue to have tension headaches. None have ever caused pressure in my ears, numbness on the left side of my body, nor have they been relieved by laying down! I cannot believe he was so incompetent.

      I am so thankful to finally be healed, I feel like I am trying to catch up on all the time I missed. I am so thankful to everyone on here who answered questions, offer advice & shared their story for the benefit of a complete stranger. I pray that this condition will receive the attention it deserves & that more doctors will recognize it for the life debilitating condition that it is.

      Much peace and healing to you all,


        Hi KatyMomma,

        I wanted to reply to one of your older posts. I am closer to being sealed and healed but not quite there. I am a spontaneous spinal leaker being treated in Houston. I would love to connect and find out more about the docs you've seen in the area and if we have any in common. Also, I am trying to find out what some of my other treatment options are. Would love to hear from you.

        Rachel (Kytrejela)


          Hi Everyone
          Thought I'd update you, as not been on here for a while, Although not completely healed and sealed over the last 8 months I have got definate improvement with the headaches, I even get fairly long periods with NO HEADACHE now. I still avoid lifting and have to watch myself but things in general seem to be improving all the time, Ive not had any medical intervention, but keep up the caffeen levels and take each day at a time, it was mentioned that scar tissue could perhaps be slowing the leak?? The leak is at T7 surgery is not posssible due to venous malformation in that area to risky. however I am avoiding any surgery, doctors, hospitals if at possible. hopefully with more time will completely go and be headache free everyday. It just shows when you things think wont get any better sometime,s just around the next corner they might!! xxLisa


            I suffered with a cfs leak for 7 years. 21 days in intensive care when I first got it, could never find the leak. Any how It finally healed itself. So it does happen keep your chin up and keep praying, GOD does answer prayer.


              worse after bloodpatch

              Hi, im new to this forum so forgive if im in wrong place.

              My friend was diagnosed with a cfs leak 4 years ago, shes had a icp bolt, mylogram and 3 blood patches. The leak cannot be found and although the blood patch worked for about a week her symptons have reoccurred. She is lying down about 18 hours each day her head, ears and neck are where the issues lie. I think 4 years is long enough, shes a mum and is literally sleeping her life away. shes in agony. last bloodpatch she was given 42 mg of blood and now she is actually worse. The surgeon has been informed but waiting lists are long and i fear for her sanity we dont know what to do next. She is in UK and after looking on internet there isnt much information. Any advise or success stories is 4 years too long ?? thankyou in advance


                Spontaneous CSF rhinorrhea

                Hello. I am a retired physician in South Florida (Boca) and have developed a spontaneous CSF leak with intermittent rhinorrhea and a constant salty taste in my throat. Any suggestions on specialists in the South Florida area?


                  Update after quite a few years. My CSF leak finally resolved it gradually became less painful over time until the headaches completely stopped. This was approx 2013/14. All was fine till July 2020 when due to extreme stress the typical headaches returned. I recognised the familiar sensation the CSF leak was back. I self treated 6 weeks bed rest, a few weeks later the CSF leak returned, I again treated with bed rest and the headaches stopped. I've been headache free for about a year now. Trying to stay stress free is key. Hopefully this time I'm healed and sealed for good, hope all of you take care and everyone gets the pathway to being sealed for good.
                  Lisa x


                    Hi lisalailey,
                    Thank you for the update! It sounds as if you knew what to do and you did it and it worked.

                    Interesting that you mention the importance of trying to stay stress-free. I have found that for my MS, that's very important as well, and others have made that observation too.

                    Congratulations on feeling better!
                    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.