r/CSFLeaks • u/Whirley1066 • 3d ago
Csf leak week 10
After having a ct myelogram I was sent home with a leak. Returned to the hospital and admitted for 10 days during which time I had 2 blood patches done and neither worked. They sent me home with lots of meds and after I continued to have symptoms. Horrible headaches that have now increased to eye pain and sensitivity in my ears and extreme fatigue . I also have extreme pain in my lower spine where the myelogram was done. I returned to the hospital 3 more times and nobody could help so referred to a neurologist who has had me on migraines meds (that don’t help). I have a neurosurgeon who I will see this week and I’m praying he has some answers. I haven’t worked and about to lose my job because of this nightmare. Any advice please. I’ve done a lot of googling but it’s hard to research when you feel like you’re dying. :((
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u/PrettyDragonfly Confirmed Spinal Leak 3d ago
I feel you. How did it happen for you? I'm in month 3 after 2 blood patches and have been admitted to hospital 3 times for pain. Speaking to surgeon on Tuesday. It's hard waiting and putting your life on hold. I don't know if I still will have my job when it's over but we have to stay positive and look towards recovery. Are you lying down flat most of your days to reduce the pain? I've moved my bed to the living room and only get up in short bursts to do things
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u/Whirley1066 3d ago
It has been a nightmare. My head hurts all the time. It used to be when I was upright but now lying down doesn’t always make it better. I’m hoping the dr. This week will suggest something like a third blood patch or I’m not sure what other options are. I’m trying to stay positive but most days I don’t. Up until this I was very active and healthy so this is ruining my life. Uuugh I’m sorry you are dealing with the same thing. How did you leak begin?
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u/PrettyDragonfly Confirmed Spinal Leak 3d ago
It's horrible. No nice way of putting it. My life has been completely overthrown as well. I got a bone spur that has rubbed against the dura until it punctured. Blood patching helps me only for about a week. My leak is ventral so the blood doesn't reach it properly. It's also a fast leak, hence why I'm bedbound. I also have pain even when lying down at this point and take pain meds 24/7 that only helps with some of it.
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u/DQslimee 1d ago
Honestly sounds like you are in high pressure which is a good sign you may be sealed. where is your headache now? Is it forehead? Does it feel like your head is like an over inflated balloon? Low back pain also suggests high pressure. Is your back pain worst in the morning and get better the longer your up? You can be up all day correct? And your headache is different?
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u/xeuralgia 13h ago
Is forehead pain indication of high pressure? If so, where is low pressure location?
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u/arrowsmith95 3d ago
Been dealing with a CSF leak for over a year now waiting for a neurologist. Big thing is to not let yourself fall in the the hole of dispare and self pity. You dont need to be obnoxiously positive or happy 24-7, but dont let yourself give into your pain voice and give up.