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Thread: Just an update

  1. #1

    Default Just an update

    Well, I ended up going back to cedars for another surgery. I tried 2 blood patches at my local hospital, which served as a complete waste of time.
    Dr Schievink told me that he repaired the same spot that he had repaired with my previous surgery 2 years ago. I am still not convinced that I didn't blow my last patch when I was only 3 weeks post op. I went from high pressure to bottoming out over night. Couldnt stand up for 2 weeks. It was suggested that I had a diamox low at that time, but I think my patch blew then. For the past 2 years, I haven't had the severe orthostatic headaches, but really weird arm/shoulder pain made worse with activity.
    I was trying everything to find some relief from the shoulder/arm pain and found my way to a chiropractor which was were I got in trouble. Woke up with the typical orthostatic headache the next morning after visiting the chiropractor. Will never make that mistake again.
    Any way, my surgery was 10/11/2011. I think it worked. I woke up immediately post op in high pressure. Was placed on 3000 mg dose of diamox. Currently, I am trying to unsuccessfully ween from diamox. I am taking 4 pills now (2000mg) and cannot ween to 3 pills without some obvious and uncomfortable high pressure symptoms. I have already whined and gotten some feedback, but I would love more ideas about how long this high pressure thing might last?

  2. #2
    Community Member
    Join Date
    Mar 2011


    After such a long battle laura I am so pleased you got further surgery to fix the leak. I really hope that you can do exactly as you are told and avoid the high pressure completely. The last thing you want is to blow this repair too. I am not even diagnosed let alone fixed so I cant advise you at all Im afraid but I do wish you the best from the bottom of my heart. Every success story I read gives me a little more hope that one day I will have a success story of my own. Right now I dont feel I will but you never know. Look afteryourself. x

  3. #3


    Hello. I am glad your on the path to recovering. I have a few questions for you, if you can answer. What does it feel like when a blood patch blows/ symptoms? What are signs that it worked? I have been leaking spinal fluid for 5 months, then I just had the blood patch 3 days ago. My head aches were relieved immediately but now today I have them again, as well, my other symptoms like visual disturbances have increased. The vision problems and many more were caused by the fluid leak and my brain sinking. Is there usually an increase in symptoms after the patch due to the pressure returning? I know this is off subject but since you have been through this I figured you may be able to help : ) I hope all will be well for you now.

  4. #4


    In my experience, generally speaking,
    Low pressure symptoms: mostly posterior headache that is the most pronounced with being upright and improves with lying down. It gets worse with the course of the day.
    High pressure symptoms: mostly anterior pain behind the eyes that gets worse with laying down. It is the worst first thing in the morning and improves as you are upright.
    I have always noticed the most vision symptoms when my high pressure has been poorly controlled. That is just me though. The biggest vision problem that I had while I was leaking were floaters.
    After my surgery, I knew it was helpful because my headache immediately changed. A lot of people think that they will be headache free after a proceedure. So not true. I wish this was better explained bu healthcare. Usually, when you are leaking, your brain gets used to producing more csf. When you are patched, it takes a while to slow this production. Hence, too much fluid = high pressure. I went into an immediate high pressure headache after my surgery. I knew that something was wrong because over night, not gradually, my headache changed from symptoms of high pressure to symptoms of low pressure.

    I hope I answered your question without giving you too much basic information that you are already familiar with. If you do feel like your headaches are constant and no longer relieved by lying down, diamox may help. Just start paying attention to where your headaches are located and when they are the worst. Blood patches never worked for me, but I pray that it did the trick for you.

  5. #5


    Also, if you have any more questions, I am happy to try to help. God knows I have been there!

  6. #6


    Thank you, all very helpful information. I am hoping the patch is holding, my head aches so far have reduced greatly as well as the vision problems. So only time will tell, thank you!

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