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Thread: Failed Blood Patch?? CSF Leak??

  1. #1

    Default Failed Blood Patch?? CSF Leak??

    Hi there!! Looking for some advice. Post 19days an epidural steroid injection, about 16 hours after the injection I started to vomit A LOT for 12 hours, then this headache, pressure in my head and a ‘waves’ like sound in my head/right ear started along with continued nausea & vomiting.

    After going to the ER 2x and them saying it was viral, they gave me IV fluids and sent me home.

    I FINALLY got ahold of the pain doctor who did the ESI and he stated it was a Spinal Headache and performed a blood patch. The blood patch worked for about 30hrs and this unrelenting headache came back. When I wake up in the morning I don’t notice the headache until I stand up and start to try and do things, once all the symptoms have started I need to lay back down and usually after about 20-30mins the headache and symptoms are gone again, with the exception of the nausea & vomiting.

    After continuous conversation with the Pain Doctor, I have begged him to try the blood patch again because I figure if it worked for a little while MAYBE I just didn’t rest enough and somehow screwed it up. I thought I FINALLY got him to agree on Tuesday, so I met up with him on Wednesday and he at that point said he was going to order a CT of my head and spine, those all came back normal so he decided against the blood patch and said he is going to order an MRI, discouraged and crying I asked him WHY he can’t just do the blood patch and God forbid if it doesn’t work then we go to the MRI. He still said no.

    He was able to get me into the hospital for an urgent MRI 2 days later. Well, the MRI as well came back normal as I just found out. Now, the pain dr said he is going to consult with Neurology and he wants me to ‘hang in there’. He told me I could stop with the hydration and caffeine but continue with the Tylenol and Ibuprofen..

    So, how long am I am going to have to continue to suffer? I cannot afford all this as I am unable to work due to the inability to stand up and do things for long periods of time without me feeling like my head and neck are going to

    After reading A LOT up on the internet the last day and a half, I have read about testing not always showing a CSF leak. So, what the heck do you do IF everything is normal BUT you have the ‘clinical’ symptoms of an CSF Leak??

    Any advice would be helpful, I am honestly extremely frustrated at this point and I HONESTLY do not know how people deal with this for months OR years!!

    SORRY for the long post and THANKS to anyone who might reply.


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  3. #2
    Distinguished Community Member
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    Red Sox Nation :D


    Nener, welcome to BT. Sorry that you have a good reason to be here. And, I am so sorry that you are suffering and having trouble getting anyone else to help you.

    There comes a time when silence is betrayal.- MLK

  4. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Nener)))))) ~


    I'm sorry that you're enduring so much pain and discomfort, and that your pain doctor doesn't seem to comprehend how difficult it is to "hang in there."

    Has your pain doctor retracted the diagnosis of Spinal Headache?

    Would it be feasible for you to apply for some kind of financial assistance through Medicaid to help you pay your medical bills? I suggest you do an internet search of social services and health agencies in your state and county to see what might be available for you.

    A consult with a neurologist may be a good idea, if you can afford it. Perhaps you can explain your situation to the neurologist and get a break in charges.

    I wish that I could offer you more, but I have no experience in this area.

    Sending healing thoughts ~ please keep us updated.

    Love & Light,

    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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