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Headaches and Arnold Chiari Malformation
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Headaches and Arnold Chiari Malformation

Hello everyone.
I had decompression surgery in June this year, with an initial complete relief from the headaches that had so badly affected me.  Unfortunately, this only lasted a few days, as I contracted clinical meningitis and was hospitalised for a month.  Since then, I have continued to have constant headaches, 6/10 pressurised whooshing sensations coming from the back of my head and am prescribed oxycontin and oxycodon.  I did some research recently and asked my GP to prescribe me Topomax (topamax) as I here some people get some relief from that.
My problem is this - my GP feels she does not has the skill to manage my day to day care, my neurologist is disinterested, my neurosurgeon has just said that he will review me in 6 month after a repeat MRI and I feel no further forward (in fact a good few steps back).
Is it likely that the decompression just didn´t work and it´s worth another try? I really wonder sometimes if this is all in my head (pardon the pun!).  I just can´t work out why there is no medication that can help with this pressure, or I even wonder if whether i am needing a shunt, if this is to do with increased pressure in my head, and how this would be measured?
Any advice or feedback would be so much appreciated
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2 Comments Post a Comment
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620923_tn?1413427272
HI...it all depends on what type surgery u had already....there r diff types of decompression.Sometimes they do need to be redone....or, that a related condition is giving u the issues.With the set backs u experienced it is possible that could be the reason for ur symptoms as well.

DO u have a chiari specialist near u?.....


We have had several here that have had revisions...and a few that did require a shunt......make sure u get all the testing to see what is going on.

"selma"
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926258_tn?1249585360
I say keep fighting!  I've had doctors that didn't believe my symptoms and was sick for over 2 years before getting into TCI after my initial decompression.  Dr. Insgina, at TCI took me seriously and decided I needed a revision...

He also found two staples in my head just 'floating around.'  

I say, if you're having issues, keep fighting to find a doctor that will actually help you!  Never stop!
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