Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Hi all,
I had replied to someone's post about something a surgeon told my husband (my hubby is an OR nurse). This surgeon said that people should not con't diamox if they have the fenestration/decompression surgery since diamox lowers the pressure too much and that is when scarring occurs over "open window" that is done during surgery. He said that the high pressure maintains the "open window".
So...I emailed the IHR foundation and asked them if they had ever heard of that and this was their reply:
To the best of our knowledge, there is no studies that support or do not support the use of Diamox post decompression. So whether taking Diamox causes closure would seem to be unknown. Of course, one of the problems is that usually the decompression opening closes over time even without Diamox. This is why the decompression usually doen not relieve the headache due to high pressure within the head.It does seem to prevent recurrence of papilledema even when the opening does close.
If the decompression opening relieves the pressure within the head than one does not need the Diamox. This is more the exception than the rule.
Well...there you go, two different views until more is known.
Blessings to you all and hope you are having a good day, Jazzy
I had replied to someone's post about something a surgeon told my husband (my hubby is an OR nurse). This surgeon said that people should not con't diamox if they have the fenestration/decompression surgery since diamox lowers the pressure too much and that is when scarring occurs over "open window" that is done during surgery. He said that the high pressure maintains the "open window".
So...I emailed the IHR foundation and asked them if they had ever heard of that and this was their reply:
To the best of our knowledge, there is no studies that support or do not support the use of Diamox post decompression. So whether taking Diamox causes closure would seem to be unknown. Of course, one of the problems is that usually the decompression opening closes over time even without Diamox. This is why the decompression usually doen not relieve the headache due to high pressure within the head.It does seem to prevent recurrence of papilledema even when the opening does close.
If the decompression opening relieves the pressure within the head than one does not need the Diamox. This is more the exception than the rule.
Well...there you go, two different views until more is known.
Blessings to you all and hope you are having a good day, Jazzy
I really applaud you for quizzing the IHRF. They are a very good source of info and at this point are a great resource for us all to tap into.
TJ