CSF leaks.....

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CSF leaks.....

Postby emmacos » Mon Oct 22, 2012 1:39 pm

Hi All,

My daughter Helen is in hospital currently awaiting a CT Myelogram as they think she may have leaks - she has low pressure head pain - it was so agonising last week that we had to get her taken into hospital, where she spent a whole day vomiting, with horrendous head pain, which no pain relief helped.

They feel she may have leaks and hopefully the CT Myelogram will show these, and then they are considering doing a blood patch.

I still wonder if the leak could be from the pseudomeningocele which she developed following her decompression surgery in 2004. Initially it was very large, but now the pseudo is much smaller, and her NS doesnt feel that this is the problem.

Would a CT Myelogram show up leaks in the head, as well as the spine? She says she often gets fluid coming out of her ears/nose, and so wonders if the leaks are in her head.

Does anyone on here have any experience of leaks and how they were dealt with?


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Re: CSF leaks.....

Postby pmaxwell » Mon Oct 22, 2012 2:54 pm


I feel so bad for Helen. Hopefully someone with pertinent information will reply. I know we are all wishing they find the answer and solution.

Together We Can...
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Re: CSF leaks.....

Postby zenkeeper » Mon Oct 22, 2012 7:20 pm

I had a CT Myelogram about 8 months after my PFD surgery - also to rule out a cranial leak.

I had a leak early on after my surgery and developed a pseudomen. as a result. It has been 2+ years since my surgery and I SWEAR some days I feel like I am still leaking....and so the story goes on and on... A leak? A patch issue? Adhesions?

My NS said the CT My. would definatly show if I had a cranial leak- however - the Neuroradiologist said that a CT My. may NOT capture a small cranial leak and that there are other tests that are better. I do not recall what they are though - sorry.

Mine did not show anything but my opening pressure was borderline low and it showed a "residual" pseudomen. I wonder if it is from a continued leak or the leak early on.

I wish I could offer more help. It is unthinkable to be in pain for so long. Maybe the CT My. will show something and if not, perhaps they can go to the next level of diagnostics?
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Re: CSF leaks.....

Postby emmacos » Wed Oct 24, 2012 1:58 pm


Yes it is never ending... or so it seems at the moment.... Helen has been suffering now with these headaches, of varying intensity since February this year...

She had decompression surgery in Oct 2004, took a while to settle, then she got pretty well, finished her exams in school and college, and had a pretty busy social life.... then this year in Feb the headaches came back pretty bad.... she had an icp monitor in hospital which showed low csf pressure.... then she waited another few months and had csf infusion studies in September, after that the head pain got worse and she was in agony and vomiting, so back into hospital....

Now we are waiting for her to have the CT Mylogram which hopefully will show up any leaks, either cranial or in her spine. Im still not convinced its not the pseudomeningocele causing all this - she has had that since her decompression surgery, but it is now a lot smaller - it was large at first, so that must have leaked or something to have got smaller I would have thought, although her NS doesnt agree!

Anyway, she has no quality of life at the moment, has had to leave university, and she is just mainly lying down as that is the only thing that seems to help the low pressure head pain.

We will just have to see what the CT Myelogram shows, if anything! And pray something is done to help her get her life back soon.....

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Re: CSF leaks.....

Postby kiminfla » Fri Oct 26, 2012 6:54 pm

Emma, I don't have much to add but I did have a CSF leak, while still in the hospital, after my PFD and I had a blood patch. Things improved after that so I hope this proves to be the case for your dear daughter and she will see some improvement. Sending positive thoughts your way... Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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