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Thread: Can someone help me understand my diagnosis and symptoms? CSF leak causes Dementia

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    Lightbulb Can someone help me understand my diagnosis and symptoms? CSF leak causes Dementia

    I really appreciate all those who take the time to read my post. I need as much input/advice as possible. I have had a hard couple of months..

    Summary:
    During child birth I received an epidural. My neurologist told me "The anesthesiologist pushed the needle too far and punctured the dura which caused me to leak spinal fluid." I leaked for 5 months as it went undiagnosed. So my MRI showed my brain was "sunken" and the meninges were thickened. All of this caused Dementia.



    It all began with visual hallucinations.
    Seeing colored objects that would block my view for hours at a time. (large yellow cloud in lower central vision, big blue circle in central). Constant sparks flying, dots darting, and flashes of light. (I awoke from a nap, saw sparks flying and jumped up thinking the house was on fire). Seeing shadows instead of the object of the same color. (Seeing a green blurry shadow instead of seeing my son who was wearing a green shirt. Seeing the "slow motion" trailer of all moving objects (wiping the kitchen counters in a circular motion, I see the image of my hand trail behind my actual hand. When I try to read or focus my vision shakes from left to right. When walking my vision zoom in and out causing me to trip or fall. There is so much more, but ill keep them limited. My Ophthalmologist said my eyes were fine. He called my family doctor and told him to refer me to a Neurologist.

    I suffered debilitating head aches, but I blamed them on having a newborn baby even though I suffered no head aches with my son. Nausea came with the headaches. My family doctor just put me on a B vitamin, said I was having Occular migraines and sent me home. Next came hearing hallucinations. Hearing sounds that weren't there but sounds I anticipated (alarm clock, baby crying, husband talking) Hearing sounds wrong (husband breathing at night sounded like alarm clock, car passing house sounded like scream) Far away sounds sounded right next to me and vice versa. Then cam the balance problems.I fractured my right foot twice in one week. Continuous falls until I learned to hold onto the stairway railing like an old woman. It felt like I was sleeping on the ocean when I laid in bed at night. I began having memory problems; short and long term. Forgetfulness for short, and for long, not being able to picture in my mind my deceased fathers face. Then I began suffering "Flashback" episodes in which I was mentally in the past for 30-60 seconds at a time in all aspects.

    I went back to the family doctor with the new symptoms and she diagnosed me with "visual disturbances" and "abnormal gait". She sent me for a CT scan. Now this is where I get real confused. I call about my CT results and I am told the results are abnormal, that it is a crescent shaped "something" that looks to be a swollen vessel. I began having numbness and tingling in my hands and feet. I felt a cold sensation down my spine followed by my right foot going numb for 5 hours. So, worried, I went to the ER. I was told that I had no business being there and that my CT scans showed nothing abnormal. The doctor told me this word for word "You are young, (24) your vessels have a good blood flow, that is what showed up on the scan". So regardless, I went home. The next day was my MRI, where I was told was a follow up to the aneurysm they suspected from my CT scan results. I was shocked as no one told me they suspected an aneurysm. I got my MRI then called for my results and I was told there were no abnormal findings.

    So as the symptoms become more and more life affecting and the depression sets in, I request to be seen by a Neurologist to have my scans re-reviewed. So I go to the appt and just by my symptoms alone, the Neurologist suspects a CSF leak. He pulls up my MRI scan and shows me what the radiologist missed. My brain is sunken and the meninges are thickened. He says that when I got the epidural during child birth, the anesthesiologist pushed the needle too far and punctured the dura. Ive been leaking spinal fluid for 5 months which deprived my brain of the fluid that it needed to hold it up, so it sunk and that is what caused my Dementia (which I guess is the vision, hearing, memory problems etc. ) He said its "chronic" (not sure in what way he means) and that after I get a blood patch to stop the leak that it will take up to 6 months for my body to return to normal and my symptoms to subside. Theres a chance they won't.



    So I have a few questions to those who suffered through this expensive post (I really tried to be as vague as possible).




    I cannot find anything at all online in which a CSF leak causes Dementia like symptoms, actually I can't find anything on line at all about CSF leaks causing the brain to sink. Can someone provide me with this information? Why did I get Dementia, how dangerous is it for the fluid to be that low, are the symptoms always reversible and etc.

    Can someone explain the generals of what happened to me as my symptoms progressed and increased? What happens to the spine when its deprived, what happens to the brain, etc.

    If the anesthesiologist made this error during the procedure does that mean I didn't get my pain relief? I ask this because labor with my son was just like any other woman's story, it was painful, but I was clear thinking and able to concentrate and suck it up to do what I had to do. With my daughter all I remember was being in so much pain and freaking out the entire time. It was all a blur. The nurse wanted to suction the baby out because I was in so much pain; nonetheless I was embarrassed after it was all done and over.

    Also, what can I expect with the blood patch. I was told there may be immense pain for a few days after it because blood is an irritant. I was also told I may need local anesthesia (does anyone know what kind?) and a contrast dye and an x-ray (is this to determine where the leak is?) As well, I am a breast feeding mother so will I have to stop breast feeding for this anesthesia/contrast dye? I had to stop breast feeding for 24 hrs after the CT scan and 48 after the MRI. Any other information about what to expect please share because I am very worried about this procedure, esp after what happened last time a doctor was near my spine. Also, what kind of doctor will be doing this procedure?

    Is there anything I can do for pain relief until my procedure? I can't take any medicine as I am breast feeding. I was told caffeine helps but I am already an avid 2 pots of coffee a day drinker.

    Does anyone know what was up with the CT scan? What could have been the "abnormality"? Im getting a copy of both scans next time I make it up to the hospital. Any thoughts in relation to diagnosis would help.

    Is this malpractice? Is there a lawsuit here? (at the very least to pay the bills?) My health insurance doesn't cover neurology or radiology and today after making the appointment for my blood patch, the financial department called me and asked me if I would like to cancel my appointment due to me not having insurance. I said, of course, Ill just keep on leaking spinal fluid until my brain dries up. Does anyone else find this offensive?




    Has anyone else gone through something similar?

    Thanks
    Last edited by Mikau; 11-18-2011 at 02:23 AM.

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    In response to your question/comment about anything online regarding CSF leak causing dementia, I found:

    “Dementia is a rare complication of spontaneous intracranial hypotension, but subtle cognitive deficits are not rare and often are not recognized until cognition improves following successful treatment of the spinal CSF leak.” Spontaneous Spinal Cerebrospinal Fluid Leaks and Intracranial Hypotension by Wouter I. Schievink, MD, in Journal of American Medical Association

    “There are documented cases of reversible dementia.” Wikipedia – Spontaneous cerebrospinal fluid leak

    In response to your question/comment about anything online regarding CSF leaks causing the brain to sink:

    "Sagging or downward displacement of the brain is a very specific imaging finding of spontaneous intracranial hypotension and may be accompanied by ventricular collapse." Spontaneous Spinal Cerebrospinal Fluid Leaks and Intracranial Hypotension by Wouter I. Schievink, MD

    "An Arnold-Chiari malformation occurs when the brain sags and has a downward displacement due to the decreased volume and buoyancy of cerebrospinal fluid in which the brain floats."
    Wikipedia – Spontaneous cerebrospinal fluid leak

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    Thank you so much! Very helpful information.

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    You're welcome. Regarding blood patch information, you may want to go to the archives and do a search for "blood patch." You will find many threads and posts that provide helpful information including discussion of the experiences with blood patches. The archive address can be found when you click on Sticky: Forum Archives.

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    Hi Mikau -
    Oh boy (if your neurologist is right) am I sorry for you not to have this diagnosed immediately!! Too much unecessary suffering. There is an article (somewhere?) where a man had dementia and was sent to live in a home for that and it turned out it was due to leaking. (I will try to find it but our forum was moved and I am not sure where it is. EDIT: http://www.braintalkcommunities.org/...7&postcount=43 ) All of your symptoms, and CT results, could be from leaking. Did you always drink 2 pots of coffee? or just started? Coffee does increase your CSF production so it could have been your way of self-medicating. (I think you should cut this back for your blood patch so you do not cause too much of a pressure increase possibly blowing your patch) I am happy your neurologist figured this out. Does your headahce get better when you lie down? For leaks, you should stay flat as much as possible to lessen the amount of leaking AND to let the CSF fluid stay near your brain. I totally agree with the sedation for a blood patch - no need to suffer any more. Ask your doctor about the breast-feeding. Usually anesthesiologists do the blood patching - sometime a neuroradiologist will. You should try to avoid BLT after your patch (Bending, Lifting (>5 pounds), Twisting) for several months. I hope you get relief soon!!!! (My son had a leak from an epidural shot too ... his story is below and he is doing well now.)
    Last edited by Robbysmom5; 11-19-2011 at 04:31 AM.
    Jeanne
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

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    Thank you. It is sad but my Ophthalmologist pretty much diagnosed me day 1. He called my family doctor and told him I needed a brain scan and that he suspected optical nerve swelling. I wont know until I ask my neurologist to read my CAT (he only re-read the MRI) but im thinking that was the "crescent shaped something" they saw abnormal on my Cat. All in all I was very happy with the diagnosis- thank god im not crazy, nor do I have to suffer with this forever (hope not anyways). I have always drank this alot of coffee for years but I actually cut it down to only 2 cups a day during pregnancy as I also quit smoking then.. And I even got to the point where I didn't have to wake up to a cup of coffee anymore. My two addictions pretty much ceased but im not sure if it was because of the constant lethargy or the pain but I went from almost no coffee to 2 pots a day within the first few months after child birth. Other than the dementia related issues the only thing I have constant guilt about is I am not a sit down and laze around person. The first few weeks after she was born we made my son feel like he wasn't being replaced by doing extra activity with him. Then it got to the point where I barely could designate more than an hour to play with him (he's 3). As well the head aches made me so irritable that I felt constant guilt about getting frustrated with the kids so easily. I read your son's story. That's horrible your family had to go through all of that. I am glad he is doing better. I did call and find out that I won't be getting anesthesia so ill be awake. They said it was so I could tell them if I was in pain. Does anyone know why this is? As well, I will be having the contrast dye so Ill have to stop breast feeding for a little while again. My daughter is going to have a fit. She refused food (formula) for the first ten hours of my 24 hr time frame where I couldn't breast feed the first time. Thank you for all the suggestions, I will definitely be taking it easy with bed rest and all.

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    Default conscious sedation

    Hi - Yes - Rob was awake for his patches too, but given a drug to make him relax and ease pain. (I think they called it a conscious sedation) He needed to tell them when pressure became to high in his head (when they put the blood in the epidural space, it increases intracranial pressure)

    Leaking is so hard on new moms ... especially with other small children. You are definitely not alone - several young mothers have been on this forum. I hope you get help soon!
    Jeanne
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

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    ooh i didn't know that. Does it hurt when they patch up the leak? I read somewhere that blood is an irritant and may cause pain too, but does it cause pain with the pressure head aches as well?

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    Quote Originally Posted by Mikau View Post
    ooh i didn't know that. Does it hurt when they patch up the leak? I read somewhere that blood is an irritant and may cause pain too, but does it cause pain with the pressure head aches as well?
    Everybody seems to have different responses to blood patches. The pressure Rob felt when they were doing it (in which he stopped them when too much) did not last long. Some people get instant relief with a blood patch and no additional pain. Rob always felt a bit dizzy for days. Some people (rarely) can get meningeal irritation after the patch - which when extreme is called 'chemical meningitis'. It can happen days after the patch when the blood is broken down and appears as foreign particles to your body. A lot of people get back pain after the blood patch - which can last for days. Rob took vicoden after his last patch. We wanted to control post-patch pain so that Rob can stay flat more comfortably.
    Jeanne
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

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    Thanks for the info very helpful. I will be having mine at 1 pm tomorrow- not looking forward to it.

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