This may sound ridiculous but if you have a csf leak for a long time will your brain herniate? If so does this happen over time or acute? I am very much afraid of this because they can't find what is wrong with me yet and the pain gets worse everyday. I have not have the CINE MRI yet.
My spinal tap pressure was noted fine by the hospital.
if you have a small little opening in the dura and your pressure is not thaaaat bad you can go on and on for years with a small csf leak. I've had two repairs that have not held. Heck this has been going on now for six years and I know of many others who have them.
The larger issue has to do with why you have a leak to begin with..is your cranial pressure too high for example. And yes that can cause problems. Your spinal pressure was measured as ok right?
The concern with leak is that is is an opening to infection aka meningitis. low pressure can cause probs too.
Sorry about the pain that you are in. Believe me i know that pain and it is awful!
Do you think that you have a cranial, neck or spinal leak? Each one presents differently. They are also treated differently. A spinal leak for example is often able to be treated with something called a blood patch.
One thing that they share is the headache that improves when you lie down. Does this happen with you?
I cant dicifer anymore if it is only laying down. I had my LP done last year and a following MRI a couple days later...of my back and brian. I asked if it could still be a leak and the ER and one nuero said " It would be closed by now or we would see the leak on the back mri"
then I had talked to another nuero and he said it could be a possibility but hes not sure
he ordered me another mri or c-spine and brain but it takes awhile to get an appointment
It sounds like a leak is something to get ruled out. One really important diagnostic part though is that your headaches usually improve when you lie down (if the leak is higher up)
They usually do something called a CT myelogram that is done in nuclear medicine. In this procedure they inject a dye (indium) into your spinal fluid and then run a series of CT scans over your spine. neck and brain over several days to look for a leak. The dye makes it easier to see the smaller leaks. You would need to go to a larger medical facility to have this done.
Hi wondering if you ever got any relief? I am going through sagging brain pain for a year now & had 8-9 MRI, MRA, MRV's & myelogram & cisternogram & none reveal the leak yet. Not sure what docs next move is yet - have to call him Monday.
I can't take it....head pressure gets severe & ears feel like I am on a plane, full, popping; neck cracking, shoulder pain up to head, especially neck, back of head & mohawk area of head. Feel disoriented, can't trust myself to drive sometimes as driving & riding can increase pressure too.
Hope you found some relief!
whiskey: There is a difference between high pressure and low pressure. There is also a difference between a cranial leak and a spinal leak. Spinal leaks cause brain sag and headaches that typically get worse when being upright. Cranial leaks causes none of that. In fact, cranial leaks are often associated with high pressure, where the headache typically gets worse when being horisontal.
Sagging brain can often be misinterpreted as a chiari malformation. Or vice versa. Chiari causes high pressure. While brain sag is a sign of low pressure.
Cranial leaks are located with cisternograms, spinal leaks with myelograms etc.
It is important that you first figure out if you have symptoms of high pressure or low pressure. Secondly you must find out if your MRI shows Chiari or brain sag. This is vital if you ever want to find the right diagnosis.
If you have chiari and high pressure there is often some other signs of high pressure as well on your MRI. For example on the optic nerves and back of the eyes. If you have a sagging brain there is often some other sign of low pressure, like for example enlarged pituitary, subdural fluid collections, pachymeningeal enhancement. This can help your doctors to find the right answer to what is causing your problems.
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