So tomorrow is one week since my last surgery and I just realized I’ve never done a proper update. Unfortunately the only thing that was broken about my shunt was the pressure sensor, and since the sensor has no influence on my pressure whatsoever (the only thing it does is measuring it) they still don’t know why I’m having all this high pressure symptoms. My shunt isn’t blocked, so my pressure shouldn’t be to high. I firmly believe I need 2 shunts in order to be free of symptoms, just like I’ve had last year when I felt amazing for the first 3 months. The external drain I’ve had also showed I needed a lot more draining of spinal fluid than normal people do (normal is around 10 mls/h and mine drained around 35mls/h). Only problem at the moment is that my neurosurgeon is hesitant to place my LP shunt back, because it has it’s risks, like getting a brain bleed because of the pressure getting to low. When my neurosurgeon called my husband after surgery, he said he was a little bit disappointed nothing else was wrong with the shunt and that he’ll need to figure out where my symptoms are coming from. Only ‘good’ thing about this surgery and having a working pressure sensor is that they can see how high my pressure gets. First measurements after surgery showed my intracranial pressure was higher than it should be. I’m feeling so devastated at the moment, I just want my life back. I just want to be pain free again, just like those 3 months back in 2016 when both of my shunts were functional. Having a massive pressure headache ever since surgery and my head feels like it’s going to explode 🤯🤯. Had an amazing nurse in recovery after surgery. She made sure with a lot of extra painkillers I was pain-free for a few hours after surgery. Really so thankful for those few hours. ---------------------------------------------- #chronicillness #invisibleillness #chronicpain #intracranialhypertension #surgeryupdate #shuntlife #shuntproblems #shuntrevision #miethke #sensorreservoir #myheadhurts #shuntfailure #portacath #pseudotumorcerebri #iihsucks #ineedamiracle #chronichope #chronicheadache #butyoudontlooksick #sickandtiredofbeingsickandtired #spoonie #spoonieproblems (bij Radboudumc)