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MTbri

667d

my neurosurgeon just denied a VP shunt and a complex pineal lesion removal. He said because it doesn't treat the migraines or other symptoms besides vision and my ventricles are too small from the IIH anyway. I feel so hopeless. This appointment was my light at the end of a painful tunnel...now it's gone.

    • HenriettaHeadache

      619d

      As lotus413 stated, my neurosurgeon also told me that the shunt will not help with headaches, but will save my vision.

    • DrLJ

      663d

      Your neurosurgeon is doing you a good service. I had an emergency shunt put in because my pressure was so dangerously high (around 50cm). My vision was fine however they were very concerned with possible damage. The pain before and after surgery was unbelievable. The headaches have been life altering and have little to do with actual pressure. The shunt has been broken for more than a decade now. My ventricles are so tiny it can not be revised. My team says the best we can do is keep my brain at a pressure at about 25cm and manage the pain. The point of this story is that shunts TYPICALLY fail! They on average have to be revised every five years. Your brain is complicated, like mine it won’t take shunting well. There are many other options. I take a variety of older medications that are not typically prescribed and a lot of targeted supplements. My PhD is in biochemistry. I’ve used that to research for two decades to figure out how to combat brain pressure and pain management. Reach if you would like.

      • ac3rSaXon

        649d

        @DrLJ I am assuming you have probably looked into the stents that Johns Hopkins discovered— is this option any better? Do many doctors do this now? Sorry, I am new to all of this! https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/cerebral-fluid/pseudotumor_cerebri/

        • DrLJ

          647d

          @ac3rSaXon yes. Stents are used when they see venus stenosis or a narrowing of the major veins draining the brain. This is big problem for many of us. Unfortunately or fortunately, my veins are fine so I would not benefit from stenting.

    • LadyKarma

      665d

      Have you received a cerebral angiogram? They do that to see if you need a shunt to open if ventricles and arteries

    • lotus413

      667d

      Are you losing vision? After my shunt surgery I still had pain and the surgery told me the shunt isn't for pain, it's to protect my vision.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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