#shuntproblems

[swimmiey]

Almost done with the last preparations.. will be taken to the operation room in about 30 min. #shuntlife #shuntproblems #shuntrevision #spoonielife #brainsurgerysurvivor #brainsurgery #chronicillness #invisibleillness #intracranialhypertension #ineedacure #incurabledisease #iihsucks #pseudotumorcerebri #portacath #electrolyteimbalance #headachefromhell #myheadhurts (bij Radboudumc)

[swimmiey]

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)

[swimmiey]

So I've had an amazing art workshop yesterday with my best friend. This is the result of it, reminding me some day I'm gonna be okay. On the drive home I saw an amazing sunset 🌅 I had to stop and take a few pictures. The workshop was fun, smashing with paint and getting al my frustrations out. I'm not doing so well. What I thought was just the aftermath of shuntsurgery and pulmonary embolisms, might turn out to be the last thing I want right now. On Tuesday I've made an appointment with my gp, because I was not feeling well and extremely exhausted. He wanted to make sure everything was okay so made me do bloodwork on Wednesday. He said to call today (Thursday) for the results of it. But yesterday at 12am, just 3 hours after the blood work, my gp called because he got a call from the hospital that my blood showed extremely high inflammatory levels. Other than that, I don't show any signs of infection so it's guessing where the source of the infection is. And now I'm so scared and worried, because last year the exact same thing happened. High inflammatory levels, but no obvious source. This kept going on for about 8 weeks, and at that point it turned out to be my vp shunt that's infected. Last year it was a very slow growing bacteria, so it didn't show up in cultures done from the liquor they get with the LP, it didn't grow in my blood.. just did grow in the liquor they took directly from my vp shunt. So right now it feels like I'm having flashbacks, it feels like this all happened before. To be honest, I'm scared. I've never been this scared before. Because my shunt being infected again also explains my symptoms and why they aren't getting better after last surgery. Last time they didn't get better either. Tuesday I have an appointment with the neurosurgery physician assistent (PA) and all I can hope for is that she will take this seriously and look further into it. Also hope she will discuss my concerns with the neurosurgeon. ▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️ #iihsucks #lpshunt #vpshunt #shuntlife #shuntproblems #shuntrevision #shuntinfection #invisibleillness #chronicillness #chronicpain #chronicfatigue #chronichope #intracranialpressure #myheadhurts

[swimmiey]

I'm so exhausted lately. No matter how much I sleep, most days I wake up even more tired than when I went to bed. I don't know why it's so extremely bad lately, maybe it is the brain surgery, maybe the port a cath surgery, maybe just from being under general anesthesia twice within 5 weeks, maybe it's the bilateral pulmonary embolisms, maybe it's the hypokalemia and hypophosphatemia (dangerously low potassium and phosphate levels in my blood).. I just don't know. I just know I'm feeling more exhausted lately than my usual exhausted. I'm so utterly exhausted it's just not funny anymore. I have trouble falling asleep, because most days my head hurts so bad and it hurts to breathe (and I still haven't mastered sleeping in an almost upright position). When I fall asleep I sleep for about an hour and than I wake up and I'm wide awake, not being able to sleep for a few hours. And when I do fall asleep again, most days i sleep for about 8-10 hours and wake up even more tired and exhausted than when I went to bed/sleep. I never feel refreshed or anything, I feel like a good night sleep.. 😩 /\•/\-/\•/\-/\•/\-/\•/\-/\•/\-/\•/\-/\•/\-/\•/\-/\•/\ Well, enough about being exhausted. Had a nice weekend (hubby had an extra day of, here in the Netherlands we have 2 days of Pentecost/Whitsunday, just like we have 2 days of Christmas and 2 days of Easter 🐣). Friday was my birthday, went out for lunch and dinner, enjoyed it very much. Saturday I've competed in my first swim meet 🏊🏻‍♀️since my Broström ligament reconstruction in September 2014 (ankle surgery). My lungs and head didn't like it, but I've had a great time. Yesterday I celebrated my birthday for friends and family (my birthday was June 2nd) and today was just relaxing and trying to get some rest after this weekend. ▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️ #portacath #chronicpain #chronicfatigue #chronichope #chronicheadache #chronicillness #invisibleillness #intracranialhypertension #incurabledisease #butyoudontlooksick #brainsurgerysurvivor #brainsurgery #portacathsurgery #portsurgery #shuntlife #shuntproblems #shuntrevision #spoonielife #pulmonaryembolism #brostrom #brostromprocedure #swimmerforlife #ineedanap

[swimmiey]

Having a hard time. Still recovering from my port surgery and at the same time my head feels like it's going to explode. My last lumbar puncture is almost 7 weeks ago and I don't think I can hold it of any longer. I hoped surgery to revise my shunt would be planned before I couldn't handle the pressure and pain anymore, but surgery won't be for another 2-3 weeks. April 20 I have an Appointment with neurosurgery resident to discuss the admission and surgery and I have an pre op assessment with anesthesiology.. I've been throwing up a lot lately (so scare my potassium and phosphate levels will drop anytime soon), I have right side weakness, vision loss, pulsatile tinnitus and an extreme pressure headache. I'm just so tired of this pain. I'm not being able to sleep well because of the pain, but not sleeping makes the pain so much worse. Ugh just make it stop please. ************************************************* #invisibleillness #chronicillness #chronicpain #chronicfatigue #painsomnia #painmanagement #neurosurgeon #nauseous #sickandtiredofbeingsickandtired #butyoudontlooksick #brainsurgerysurvivor #portaccess #portacath #pseudotumorcerebri #ineedanap #ineedacure #intracranialhypertension #lowphosphate #lowpotassium #electrolyteimbalance #hospitallife #portacath #portacathsurgery #spoonielife #spoonieproblems #spoonie #shuntproblems #shuntlife #shuntrevision #iihsucks

[swimmiey]

I really love being a nurse, I love my current job/internship at the NICU taking care of those little ones. *************************************** so today I've got a call from the hospital to make an appointment. Tomorrow I'll meet a vascular surgeon for my port placement and after that I'll have an appointment at preop with an anesthesiologist. I'll probably get a date for port a cath surgery tomorrow, so I'm just a bit anxious to hear when I'm having my first of 2 surgeries. I'm kinda relieved I'll be having my port placed before my neurosurgery for shunt revision is happening, because it's impossible to place an iv. Last time it took them over 4 hours, 20+ pokes and 5 anesthesiologists to place an iv. Getting an iv in was the part I was most nervous about for that surgery, so it's a relief I'll be having my port before then. I don't like I have to call in sick a few days after surgery, because I really love my job and love working there, but it's for the best I'll guess. Hopefully I won't have to stay home for long after this surgery (port placement) and after the second surgery (shunt replacement/revision). *************************************** #portacath #portacathsurgery #brainsurgery #shuntlife #shuntproblems #shuntrevision #sickandtiredofbeingsickandtired #butyoudontlooksick #intracranialhypertension #invisibleillness #chronicillness #chronicpain #chronicfatigue #lowonspoons #ilovemyjob #lovelive #lovebeinganurse #nicunurse #nursingstudent #futurenurse #chronicillnurse #electrolyteimbalance #surgery #ineedanap #pseudotumorcerebri #myheadhurts #miracleshappen #preop #anesthesiologist #hospitallife

[swimmiey]

This picture pretty much sums up how my neurosurgeon is handeling things right now. He doesn't know how to treat my IIH so he just tells me there isn't anything he can do for me. I was admitted about a week ago because I couldn't stop throwing up (so my potassium was to low again) and my head was hurting so bad. I knew this wasn't a normal headache, but it felt like my pressure was way to high again. But the CT scan came back normal, like always it never showed signs that could indicate high pressure, so he asked the neurologist to see if there was an other reason for my headaches and throwing up. After the neurologist saw me he said: from what I hear it seems like your pressure is up again. I asked him to do a lumbar puncture (yes I was so desperate and in so much pain I actually ask for a spinal tap) and after a while he finally agreed to do so. And like I expected the pressure was to high again, but the neurosurgeon doesn't want to do anything, he said he can't. But I think one of my shunts is broken/doesn't work properly. I really don't know what to do now. I was send home after but I'm in much pain and can't hold anything down. I really don't want another surgery, but I can't live like this either. My back is hurting so bad from the LP. #lumbarpuncture #spoonieproblems #spoonielife #butyoudontlooksick #killerheadache #headachefromhell #invisibleillness #intracranialhypertension #shuntlife #shuntproblems #vpshunt #lpshunt #lowpotassium #hospitallife #pseudotumorcerebri #chronicillness #brainsurgery #icantdothisanymore