Aa
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 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
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 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
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!
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!
COMMUNITY LEADER
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"
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"
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
