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Thread: This is all new to me! Idiopathic Intracranial Hypertension and CSF Leak

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    Default This is all new to me! Idiopathic Intracranial Hypertension and CSF Leak

    Hi! I am new to the group. I have had an intermittent CSF leak from right sinus for a couple of years. I knew this is what it was because my grandmother had the same thing. I finally was able to get to an ENT and have the fluid tested. Things started moving quickly. Last week I had endonasal surgery to repair the skull base defect. Next day, they told me my CSF pressure was 30. I could either go home after a couple days and start medication to reduce the pressure or could have a shunt installed while still in the hospital. I am terrified of losing my eyesight as it is already poor. I also have Addison's Disease (10 years), meaning I already manage my electrolytes with pills (Florinef). The idea of taking a pill to counter the florinef and reduce CSF pressure did not appeal to me. I decided to go with the shunt. I am hoping I made the right decision.

    I lost a lot of weight before my Addison's Diagnosis in 2008. My Addison's treatment was too high, making me cushingoid. I gained a lot of weight. After getting my dosage under control and also adding some metformin, and with Weight Watchers, I lost about 50 pounds over the last year or so. I have about 50 more to lose and am going to do it.

    I am 8 days from the defect repair and 6 days from the shunt installation. Follow-up with docs is next week and following week. I spoke with doc and they told me the shunt valve is a Medtronic Strata set at 1.5. I get a slight head throbbing upon standing. It subsides after a few moments. My abdomen hurts a bit, with occasional sharp pains down the right side.

    They tell me the best way to monitor is to have an ophthalmologist monitor the back of the eye. I already have an ophthalmologist. I also think vision field testing should be performed. I have awful vision. Prescription is -8.0 both eyes. I have an appointment with this doc in two weeks.

    So...did I make the right decision? I have had some sleepless nights thinking I should have waited on the shunt. I am hoping with weight loss we may be able to turn the shunt down to the lowest setting. I welcome all advice! THanks!

    Anne

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