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

  1. #1

    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!


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  3. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Anne)))))) ~


    I'm so sorry that you have so many medical issues going on at once. I don't have any experience with CSF leaks or shunts, so I hope someone with knowledge and experience will see your post and reply.

    Congratulations on your weight loss! That takes a lot of will and determination, and I'm sure you'll lose the other 50 following the same path.

    Of course, I don't know whether you made the right decision to have the shunt placed. Perhaps only time will give you the answer. But can it be reversed/removed? If so, what would that entail?

    It's only been a short time since you had the shunt placed, so maybe you should give yourself a little more time to adjust to it and the changes it causes. Make a list of your concerns and questions to take with you to your doctor appointments, so you don't forget anything. Take notes, if it will help you to remember what the doctors say.

    I hope you did make the right decision. I'm sending healing energy your way.

    Love & Light,

    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    Distinguished Community Member agate's Avatar
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    Hi Anne,
    I'm usually at the multiple sclerosis forum here and can't be of much help with your situation, except to say that with big decisions like the one about the shunt, maybe it's best not to keep wondering whether it was the right decision. Once it's been made and acted on, you're probably going to want to concern yourself with making whatever adjustments you may need to make now that it's done.

    Why not wait and see what the ophthalmologist has to say? An ophthalmologist can get a lot of information from looking at your eyes.

    Maybe you're taking the metformin because of diabetes? If you still have 50 lbs. to lose, I think it's great that you're going ahead with that plan--and congratulations on the pounds you've already shed.

    I have Type 2 diabetes and had to lose 100 lbs. I did that, 30 years ago, and have kept it off. It can be done.

    As Rose said, it hasn't been very long at all since your shunt was placed. My guess is that adjusting takes a while.

    One thing I can almost guarantee--losing sleep won't do you any good. If you can ease your mind by telling yourself you'll stop wondering if you made the right decision, and try hard to stay well rested above all, you'll almost certainly feel better.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous

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