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I was finally able to get a sample to my ENT doc of the drainage he confirmed its CSF. Thanks to Dr. Driscoll’s book I would have never gotten to the bottom of this problem if it wasn’t for you. The ENT doc said I needed to see my neurologist for meds to take down the swelling I told him diamox is what dr. Driscoll says to take he told me he was unfamiliar. He is a surgeon that does surgery to repair these leaks and he said he would not do surgery. But now my neurologist has scheduled two MRI’s one w/o contrast one with. And she has said that second step after MRI’s is pellets in my nose and ears?!! So I talked to my PT who is an EDS specialist and she said she knows of a doc giving diamox but only with a spinal tap. So I’m wondering how necessary are all these awful tests? I feel if the outcome is going to be diamox lets just skip all the needles and go straight to the drugs! Can anyone shed some light on this?
I agree with you, Renee! The “pellets” sound like they are to collect CSF? Is that what they mean? If Diamox can reduce your pressure sufficiently, these leaks usually self-heal, making surgery unnecessary. Let us know? 🙂
My ENT doc said the pellets have dye on them and they are used to locate a leak. It’s a two day hospital stay and he said sometimes done in the O.R. My biggest fear is the MRI with contrast I have mast cell disorder and I take ketotifen. So I’m concerned about an allergic reaction to the contrast. I called my allergist she said that allergy to contrast is rare and to stay on top of my meds before going in but everything about me is “rare.” I have decided to not go forward with the pellets and I believe the leak is already healed I have no more fluid and the pressure has eased off. My MRI is this Friday I really am torn about doing it. I don’t feel good about it because they are looking for a leak that isn’t there so I feel I’m just going to risk a reaction and I find MRI’s to be awful. The only positive in having the MRI I can think of is, I have suspected Chiari for a long time so this would answer that. I would like some insight and some advice I’m not sure what to do and I don’t want to make a bad situation worse.
A brain MRI can be incredibly helpful. You should likely premedicate (I usually take Zantac/Zyrtec/a bit of hydrocortisone and have the doctor put some Benadryl in the IV sometimes). We are all different, of course, but without a history of anaphylaxis, and with your doctors reassurance that they are prepared to deal with that should it occur, it may be worth it to get those images.
Finally my doctor got back to me today about giving me diamox. The message said, “diamox is for high inter cranial pressure and that I have low inter cranial pressure.” So I kept calling until I got ahold of someone and said that I have high pressure not low and that I have stopped having fluid coming out my nose last Thursday. So my doctor said that if they are not looking for a leak that I don’t need an MRI and that she has separate tests for inter cranial pressure to see if I need diamox. So on one hand I’m happy to not have contrast in my veins but on the other hand I’m still concerned about Chiari. And I’m also wondering why she needs to do a test (probably spinal tap) before giving me diamox. I have been misdiagnosed and given meds. So I’m not quite sure why such hesitation. I am also thinking if I pass up this MRI she may not order me another one. So I’m still not sure what to do. It’s hard having something wrong in your head not only is it super scary but my cognitive function is impaired for decision making.
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