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@sharenka have you been to an opthalmologist to check your eyes for papilledema? It’s swelling of the optic nerve. What you described in your post sounds a lot like Intracranial Hypertension. As for the CSF leaks, it is possible to leak out if your eyes , nose and ears, although very rare. I would recommend seeing a new Neurologist or neurosurgeon to check into that and ask to be tested for IIH.
Hello! I’ve had Idiopathic Intracranial Hypertension since 2013. I went through 4 hospitals and too many doctors to count to help me. I had 2 strokes due to the high pressure on my frontal lobes. I’ve recovered from them well. I’ve had to have over 30 spinal tap to help control the pressure and in January I had 2 stents placed in my transverse sinus. They have helped tremendously and I’d recommend seeking a neurosurgeon to take a look at that for you. If you have stenosis of the transverse sinuses, you may be a candidate. Also, a shunt may be an option to help drain the fluid continuously. The IHRFoundation.org has a lot of information on their website as well that may be helpful to you. Also, from what you described pain wise after your spinal tap, it sounds like you got the dreaded low pressure headache afterwards. Unfortunately, since I just saw this, it won’t be helpful this time, but if you have another tap and get a crushing headache afterwards, you may need a blood patch after to seal any leaks from the tap. It helps a lot.
Have your doctors discussed with you instead of getting a shunt to have stents placed to open up the stenosis of your transverse sinus? It is A LOT less invasive and has a overnight stay and only a small incision in your groin where they go in with a catheter to place the stents in your brain. I’ve been diagnosed with IIH/PTC for 5 years and researched like crazy and joined all the groups i could find on FB. There are about 8,000 of us world wide now. I had my stents placed in January of this year and it is SO much better! I’m slowly regaining my life back. Will be thinking of you!