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Old 11-04-2015, 04:38 AM #11
Merl1n Merl1n is offline
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Hey kitkat and Glass,
Don't you just love the medical profession, instead of making a direct answer of 'we don't know' they give it a label of "idiopathic in nature". For many, many years I was told it was all idiopathic or I was imagining it, I was a hypochondriac. Then 20 years on and I'm driving down the road and the lights went out, couldn't see. Had a scan and the doctors come out all surprised, like "ohh look what we found" There had been signs, there had been symptoms. They called them all idiopathic. It is BS, don't accept idiopathic as an answer.
Post op I saw a naturopath who told me that he may have been able to help, so I implore you to investigate. If you think things are not right, then ask the questions, follow through with all the advice. You are the one dealing with it, no one else. Do not be allowing them to minimise you. Investigate every option open to you because, you never know, someone might have an alternative option.

Merl1n
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Old 11-04-2015, 02:58 PM #12
kitkat33 kitkat33 is offline
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Merl1N - thanks for your comments and encouragement. I actually got called today and the hydrocephalus specialist that I was supposed to go see on the 17th of December can now see me tomorrow. I am hopeful I get some answers and some additional studies ordered to figure out what is going on with my head. Thanks all again for your thoughts. I will let you know how tomorrow goes!
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Old 11-09-2015, 09:27 AM #13
kitkat33 kitkat33 is offline
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I saw the specialist and she doesn't think I have hydrocephalus. I guess the shape of my ventricles is not what you would traditionally see with somene with hydrocephalus and she think my symptoms are not specific to the disease. However, she is not sure what would be causing them. Her guess is I have some sort of genetic mutation that is making me tired and more prone to fatigue, bladder infections, heart rate issues, etc. She mentioned if I wanted she could do a flow study but I would need to first do another MRI because it looks like my cerebral aqueduct is very thin or potentially even closed. I guess the flow study will not work if that is the case? It concerns me that mine might be closed but the specialist seemed to think that would just mean that by brain has developed another way to move the fluid...She mentioned also with many people who have hydrocephalus their aqueducts are wide, so that was another reason she was not leaning towards a hydrocephalus diagnosis.
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Old 11-09-2015, 07:29 PM #14
Merl1n Merl1n is offline
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Hey Kitkat,
Hydrocephalus can have a number of causes and effects from stenosis of the aqueduct (narrowing of the aqueduct) all the way thru to a blood clot causing a blockage. Some causes can be congenital or prior to birth, some can be due to trauma. There is also a condition where it can be due to a lack of reabsorption of CFS within the brain. Depending on the cause will depend on your symptoms. I would have to agree with your specialist regarding the closed aqueduct and the brain developing another route to move the fluid. I say this because your brain produces around 1 pint (600ml) of CSF(Cerebral Spinal Fluid) daily. If that fluid cannot get out, eventually it can lead to a coma (worse case scenario) as there is only so much room within the skull. There must be a balance of CSF, blood and brain matter within the skull for everything to work in harmony. One thing out of balance can cause symptoms.
I have a growth within the 3rd ventricle, blocking the aqueduct. At first they did a CAT scan, which did not define the growth very well and they thought that the hydro may just have been caused by a simple blood clot. But upon completing an MRI with contrast dye it was found to be a bit more than a blood clot as the growth was more defined. I was told that depending on the location of the start of the growth would depend on the symptoms, which have been numerous over the years, many like yours ie fatigue, bladder infections, heart rate issues, etc
Personally, I'd be getting a flow study(and any other tests suggested) done. The more information you and your medical team have, the better and more defined your diagnosis will be. From there an appropriate treatment plan can be made if it is deemed necessary.

Good luck with it all and I hope you can get a bit more clarity from the drs. Keep us updated.

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Old 11-10-2015, 05:04 PM #15
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Hello kitkat
First let me say you should read up on aqueduct stenosis. Narrow or blocked aqueducts can cause hydrocephalus. Second not all neurologists know about hydrocephalus even specialists. Hopefully your Dr is knowledgeable. The new MRI with contrast and flow study will not only show blockage or narrowing but it will also show how your fluid is flowing. I'll look but I have not read anything anywhere about people with hydrocephalus having a wide aqueduct. Everything written says narrow or blockage causes hydrocephalus I strongly suggest that you do more reading and contact the hydrocephalus association for more information.



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Old 11-12-2015, 04:22 PM #16
kitkat33 kitkat33 is offline
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Thank you all for your responses. I will continue to push foward a bit and get a second opinion and likely get the MRI completed. The Neurologist just seemed very convinced that I did not have hydrocephalus and I actually went to see her out of state because hydrocephalus is her specialty. (She worked at the John's Hopkins Hydrocephalus center in the past then moved off to another local hospital) I was confussed too though by the aquaduct narrowing or potential closure with no concern other than, "if you want to make yourself feel better you can get a follow up MRI to check the narrowing on you aqueduct but that will really just tell you if the passage is open and if it isn't open that just means we cannot do a flow study becaused the fluid isnt moving through that passage. " Again she said my ventricles were on the large side but I guess there didn't appear to be any pressure in them becaused of their normal shape...so not sure. I submitted paper work to get an appointment actually at John's Hopkins...I got a message today with a number to call to schedule an appointment so I will do that...
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Old 11-16-2015, 05:52 AM #17
glass100 glass100 is offline
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Hi kitkat33
I have aqueductal web and stenosis with NPH. Which means my aqueduct is narrow and I have a web of some kind partially blocking the opening of the aqueduct my CSF pressure is a high normal. 3 out of the 4 ventricles are full of fluid. The contrast MRI showed the web and the narrow aqueduct and the flow study showed that the fluid was being squeezed thru at a high rate. A base line MRI didn't show all that as well as a 8 mm lesion that was missed the dye lit it up (they said its nothing to worry about). I'm glad you are getting a second opinion. It sounded to me like everything she said was the opposite of the information for diagnosing hydrocephalus (didn't want to scare you lol) I hope you did some further reading about narrow or blocked aqueducts and hydrocephalus just so you know how wrong the information she gave you was. Good luck


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