I have SIH and NOT Chiari Malformation

General
1

WOW. I have no idea how to unpack this new information. I have Spontaneous Intracranial Hypotension usually misdiagnosed as a Chiari Malformation. My brain slump into my spinal canal do to low CSF caused by a leak. ( looks like a Chiari on MRI’s) same symptoms. Finding the leak and patching it up will allow my CSF to raise the brain.

Problem # 1
Decompression Surgery makes it worse. I’ve had 2

SIH wasn’t discovered until 2014.
SIH and Chiari looks just the same on a MRI but there is a small difference and the Dr must be trained and know about the condition in order to find it.

How to fix it. Rest up caffeine and hydrate. The body can fix it self if it can not a Dynamic Myelography: Fluoroscopic and CT Techniques will need to be performed and they can to the blood patch.

The symptoms of a SIH headaches when standing or sitting up. Coughing sneezing or barring down tiggers the headache. Headache improve when laying down.

Women may lactate without being pregnant. ( Did this twice in the last

Meningitis I had this as a child.
They believe a Connective tissue disorder can play a role. I have SLE/MCTD.

For more information google Spontaneous Intracranial Hypotension information will come up.

I just found this out today. I just got released from the hospital. A 1 week stay.
Sorry if this is all over the place. Like I said I just found this out today and thought of all the people in the group not getting better after surgery and constantly dealing with low CSF.

Like I said no one knew about this problem until 2014.

My neurosurgeon said the Mayo Clinic is the best and handling this problem. I will not be going to the Mayo Clinic because he worked there and they are using his papers. His name is Dr. Borge Nebraska Medicine in Omaha, NE.

PEACE and Blessing Everyone.

2

Hey Jay,
I’m Merl from the Modsupport Team and I’ve had the joy of dealing with both cranial hypo- and hyper- tension. I have a VP shunt which fractured. This prevented any outflow and the CSF pressure built up resulting in hypertension. It was decided to replace the distal tubing of the shunt, but in doing so this the valve failed, thus allowing too much fluid to drain. This caused what is known as “Slit ventricle syndrome” or hypotension.

The symptoms of either hypo- or hyper- can be nasty. Some people can adjust somewhat to manage some of it. When I first informed the medicos that I was waking with a terrible head pressure in the mornings I was told, and I quote, “Well, don’t lay down for too long then…” like that was going to manage it all, but then how long is too long??? It seems there is a ‘Goldilocks Zone’ ie Not too high and not too low, but just right. But to be keeping self within that zone by body positioning can be very variable and unreliable, as I was never sure of the pressure starting point. In the end they decided to replace the entire shunt train to stabilise the cranial pressures.

I hope the blood patch has the desired outcome for you.

Merl from the Modsupport Team