May 16, 2013 at 8:27 am #446HuggyParticipant
Have EDS type 3.
I been struggling with IIH and have had various shunts. I’m now waiting for my seventh revision. The shunt keeps moving. My consultant has never treated anyone with EDS.
Just wondered if its just bad luck and shunts don’t always take, or is it related to my EDS.
Can’t keep having surgery and struggling with permanent low pressure headache. Would welcome anyone thoughts or experiences
ThanksMay 24, 2013 at 7:26 pm #3684Bendable2Participant
I’m so sorry to hear this… I was SO AFRAID of a brain shunt and Dr. Diana told me her story about how she avoided shunts and cervical fusions with Diamox – it lowered my CSF pressure enough that we were able to skip the shunt. YEA! Shunts, frankly, r pretty archaic — they need to work on their technology — even the doctors agree with that! I wish I could help you more, but my heart breaks a little bit when I hear about shunts and their problems. 🙁May 25, 2013 at 5:12 pm #3687capriParticipant
I agree with Bendable. And my “cynical of the medical industry” side has me thinking that shunts are over-rated and manufactured to be sold… to ppl who are desperate for solutions. But they are such a hit and miss alternative, I just don’t hear many good things about their success and effectiveness, not to mention the surgical implications and risks of complications. If I were in your shoes, I’d avoid shunting. I hope you feel better soon. Like many of us, you are coping with a lot of difficulties at one time and it’s very frustrating. Keep researching, keep checking back.May 27, 2013 at 9:54 pm #3694Dr. DianaKeymaster
HI Huggy, This is sooooo tough. I don’t know anything about your history, of course, nor what type of shunts you have needed. Sometimes Diamox is not enough, or you have a form of hydrocephalus (non-communicating, for example) that requires surgery or a shunt. Some of us need cerebromedullary shunts because that is where CSF is pushing on our brain stems, but those shunts are really high risk, I’m afraid. My son and I were lucky in that Diamox was enough for us — and the radiologist even called my compressed spinal cord “atrophy”. I was VERY symptomatic. It was so tough to walk away from the suggested shunt. But with my son and I, we were triggered by viruses, so I was hoping we wouldn’t need something permanent. Praise God above, my instincts proved to be right for us. Have you chatted with IIH folks on the forums to see if they have any advice for you? Hang in, my friend. Big hug…
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