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Old 09-15-2011, 07:51 PM #11
RuthD RuthD is offline
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Quote:
Originally Posted by Sharyn View Post
My partner is 26 years old,

in the past year he has started having severe headaches, pressure in his head and behind his eyes, pain behind his eyes, collapsing when he laughs, constantly tired, sleep paralyisis, blurred and double vision, loss of co-ordination, loss of balance, constant dizzyness, loss of muscle strength, agressiveness and loss of perception to name a few

He had an MRI which shows he has enlarged ventricles and a narrowing of the passage between the third and fourth. He had ICP monitoring, but his intracranial pressure is normal.

The surgeon intern we spoke to said surgery would not help him, as some people have enlarged ventricles its just the way they are - but my partner has only had these symptoms come on in the past year and they are getting worse everyday.



When looking at cases online, the normal protocol for enlarged ventricles is to try and resolve the blockage and narrowing, but he has been told there is nothing surgically he can do??

I dont know if anyone has any experience with neurosurgery who can help me, but any views would be greatly appreciated

We are in the UK so we get our treatment free on the NHS, which means we dont have much choice in regards to second opinions unless we go private- but with him not working now this seems like an unlikely option



Thanks in advance
My son has an enlarged ventricle in his head, it was discovered when he was 9 years old ( he's 22 now ) when he had a large fit and a stroke. Recently he's been sufferering sever headaches, nose bleeds , dizziness. He went to see his GP who did various tests on him, he has refered him back to the neurologist and wants an MRI scan done asap. One side of my sons face has hardly any feeling in it and also on the same side, substatancial hearing loss and weakness. The weakness has been there since he was 9 but is considerably worse now. His GP said if it has grown they may have to try and remove it, very worrying as some of the symptoms are very new.
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Old 08-25-2016, 12:20 AM #12
eldeejem eldeejem is offline
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eldeejem eldeejem is offline
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Hi Sharyn!

I am 28 yo woman experiencing the same problems as your partner. I have gone on a 5 year journey of being diagnosed with TMJ, chronic headaches, sent to a PT and orthodontist to correct my TMJ (which is helping with the headaches due to teeth grinding). still felt generally foggy, weak, slow cognition and clumsiness as well as suffering from idiopathic anxiety since young adulthood. Fast forward to May where I had a syncope episode that was brushed off as dehydration. My symptoms intensified where I insisted on finding a new PCP that would order an MRI and found the enlarged ventricles. Went to a neuro who ordered a field of vision test at an opthalmologist to determine if there was any ICP releasing through optic nerves (hence pain behind your partner's eyes and vision issues). The only vision issues i have had were after my passing out which included double vision and weakness. I have suffered from neck pain and shoulder pain for years instead which I was told is caused by the TMJ/teeth grinding. So, I was not surprised to hear my FOV test is normal. The neuro says I am not in need of any further treatment at this time due to the results but the symptoms are driving me crazy. ANYWAY, if there is no obvious sign of ICP, it could be releasing into the optical areas - so see if your PCP will order a field of vision test and the pressure could be hanging out there, giving you proof of ICP shifting elsewhere if that makes sense. BE FORCEFUL with your dr's. DON'T let them brush your partner off. SOMETHING IS WRONG. and if they won't help, go seek another opinion. I am looking for other neuros now, as mine won't even look at xrays ordered by a chiro which show obvious neuro-cranial weakness in my cervical spine, ridden with arthritis, disk disease and cervical stenosis. The cervical spine is also an area of release for ICP from what i have read - so I am trying to find a neuro in the states to take this more seriously. GOOD LUCK.


Quote:
Originally Posted by Sharyn View Post
My partner is 26 years old,

in the past year he has started having severe headaches, pressure in his head and behind his eyes, pain behind his eyes, collapsing when he laughs, constantly tired, sleep paralyisis, blurred and double vision, loss of co-ordination, loss of balance, constant dizzyness, loss of muscle strength, agressiveness and loss of perception to name a few

He had an MRI which shows he has enlarged ventricles and a narrowing of the passage between the third and fourth. He had ICP monitoring, but his intracranial pressure is normal.

The surgeon intern we spoke to said surgery would not help him, as some people have enlarged ventricles its just the way they are - but my partner has only had these symptoms come on in the past year and they are getting worse everyday.



When looking at cases online, the normal protocol for enlarged ventricles is to try and resolve the blockage and narrowing, but he has been told there is nothing surgically he can do??

I dont know if anyone has any experience with neurosurgery who can help me, but any views would be greatly appreciated

We are in the UK so we get our treatment free on the NHS, which means we dont have much choice in regards to second opinions unless we go private- but with him not working now this seems like an unlikely option



Thanks in advance
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