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spontaneous CSF leak

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Old 06-10-2012, 07:57 PM   #41
alexis817
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Originally Posted by dankgrl13 View Post
It's rare to find a young person with a spontaneous csf leak. Im 24 and have had one for 7 years. Ive been through blood patch hell as well. Fibrin glue patches are more effective/less invasive than surgery. Ultimately the ct myelogram is the definitive test to locate it. California, specficially UCSF and Cedars sinai are the hubs for this. I have a ridic long history, so if you have any specific questions let me know.
glue patch? whats that... my mom just recently diagnosed with a leak... did three patchs... not working...did surgery ... she also has lupus, .... she wound up with infection in her spine,then they figured out the leak.... three patches and surgery later, shes worse i think.... and weve never been thru or heard of this before, now i look at all the posts, and other sites, and im amazed noone has come out with a good story saying their surgery or patch has healed and never have to go thru it again...seeems to be ongoing... scary...im sorry for you...just as sorry as i am for my own mom...
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Old 06-16-2012, 09:08 PM   #42
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so has anyone at all found a dr that has fixed this long term???
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Old 07-02-2012, 12:08 PM   #43
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Default CSF Leak- Recovered

Dr. Wouter Schievink at Cedars-Sinai in Los Angeles, CA was my neurosurgeon for my CSF leak. I was diagnosed in November of 2011. After two unsuccessful blood patches, Dr. Schievink performed the glue patch. 2 weeks after the procedure I was fully recovered. 7 months later I have had no headaches or complications. He is one of the leading doctors for CSF leaks and I encourage anyone suffering from this to see him or reach out to him.
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Old 07-06-2012, 02:27 AM   #44
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Question csf leak-something to worry about?

I am 22 years old and I have a csf leak. I was in a car accident when I was 19 and was ejected out of the vehicle and I broke my face/head causing the csf leak.

Basically at random times i will get really bad headaches that will only feel better when I lay down. there is a clear (water like) liquid (not mucus) that will periodically leak out of my nose. especially if i am doing something with my head down like tying my shoes. i have had this for two and a half years now so i am pretty used to it. Most mornings i do not eat because if i do i get sick from the headaches. (unless i have medicine to help my stomach)

if i am really stressed out or cough a lot the fluid will leak out more. (im guessing from the pressure)

they said at the beginning there was a really big risk of infection and to get the surgery. but i didnt happen to have 80,000 dollars in my pocket so that was not going to happen.
it has been two and a half years and i have not gotten any infection and i am still alive. i think as long as you drink a lot of water and don't abuse your body (by drinking excessively and drugs) you should be fine.

i hate the doctors and i hate pain medicine. they always seem to mess up on something. when they were testing for my csf leak they injected this stuff into my spinal fluid and turned me upside down. I asked if i was going to have any side affects (cuz im that person) and they said not to worry there was a less than three percent chance of something happening. well that something happened, my brain swelled and i had to lay around not moving taking steroids for a week. steroids make everything taste horrible.

i decided against getting my head cut open. again. I am just going to deal with the problems i have because the surgery is not even a sure one. and at least i can walk again i am just curious if it is really that dangerous to be walking around with a csf leak???
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Old 11-02-2012, 10:24 AM   #45
TinkerbellMorgan
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Default Spontaneous leaker

Hi I'm 20 and suffering with a spontaneous Csf leak, been bed ridden for 6 months and hospitalised 5 times as my symptoms are pretty severe. I've got my first blood patch booked in for this Weds but just so many questions regarding it all that have gone unanswered as no one seems to know! The neurologists in my hospital and all my doctors have never seen it before so don't really know what steps to take so I'm just hoping so much that this blood patch helps!!!
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Old 02-08-2013, 01:49 PM   #46
tom1019
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Default Any good doctor in SF bay area?

Hello,

A doctor in Japan found spontaneous CSF leak from my wife's lumber and neck.
She had 1st blood patch and improved her headache and other symptoms she had. But it seems spinal fluid leak is still happening.

We brought back her contrasted MRI and CT result from Japan.

I'm trying to find a good doctor for spontaneous CSF leak in San Francisco - bay area, so she can continue the treatment locally.

Does anyone know a good doctor for spontaneous CSF leak in SF bay area?

Regards
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Old 02-08-2013, 02:03 PM   #47
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Hello Tom,
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