#lpshunt

Last Friday I came home after yet another 16 days admission. My potassium and phosphate levels were stable so they felt comfortable sending me home waiting for my neurosurgery appointment next week. I'm still in so much pain, extremely nauseous and can't hold anything down (so it's probably just a matter of time I'm getting dehydrated and hypokalemic again and need to be readmitted). My head hurts so so bad it's almost unbearable 😭and I've lost so much weight from not being able to hold anything down. Some days I feel like giving up, I really don't know how much longer I can do this. I almost begged them to do an lumbar puncture, but they refused because of the pulmonary embolisms.. they think it's a to big of a risk to stop the blood thinners to do an LP.. but really something needs to be done because I can't take this pain any longer. I'm so sick and tired of this. I just don't understand why they let me wait for 3 weeks because my own neurosurgeon isn't available and the other ones just don't know anything about IIH and refuses to help. My whole day consist about taking pain meds, taking 3 different anti emetics (2 of them make me sleepy like hell, like all I can do is sleep all day). I really need I sign that it will get better, that it won't be like this forever. All I can hope is that they will take action next week and not saying to wait it out again like they said last time, because this really is taking its toll on my body but also on my mental state. I feel like I'm losing my mind. Even though I'm in so much pain I'm trying to keep up with school and go to clinicals for half shifts, because at home I feel like going crazy. ++++++++++++++++++++++++++++++++++++++++ #chronicillness #chronicpain #invisibleillness #portacath #ivpotassium #ivphosphate #intracranialhypertension #kidneydisease #kidneyproblems #myheadhurts #headachefromhell #totiredtofunction #totiredtosleep #anticoagulant #antiemetics #ineedacure #hospitallife #miracleshappen #believeinhope #dowhatyouthinkyoucantdo #butyoudontlooksick #sickandtiredofbeingsickandtired #sickbutstrong #shuntlife #shuntproblems #vpshunt #lpshunt #nursingstudent #lumbarpuncture #iihsucks

So I'm waiting to leave for the hospital. Will leave in about an hour or so. I'll be admitted today at 3pm and will be having surgery tomorrow. They are going to hopefully fix my vp shunt. I really hope this surgery will help, because I'm so done with all the pain and discomfort this dysfunctional shunt is giving me. Because of the pressure is my head being so extremely high every time, even with shunt, I have daily headaches, nausea, vomiting, blurred vision, double vision, pulsating tinnitus, strength loss and sometimes even temporary blindness and paralyzes. I'm so grateful I found this neurosurgeon who is willing to try and help me. My last didn't even bother seeing me anymore, stating there's nothing more he can do. He told me, without looking deeper in to it, both of my shunt are working. This new neurosurgeon found out that my LP shunt isn't in my spine anymore and he can't tell if my vp shunt is working like it should (it might be blocked) so that's what he is going to test tomorrow during another brain surgery. Also he is going to replace my current valve for a different one and he is placing a sensor reservoir so he can check on my intracranial pressure without the need of doing an lumbar puncture every time. ______________________________________________________ #pseudotumorcerebri #intracranialhypertension #invisibleillness #chronicillness #chronicpain #chronicfatigue #shuntlife #chronichope #iihsucks #lpshunt #vpshunt #brainsurgerysurvivor #brainsurgery #shuntrevision #shuntproblems #hospitallife #butyoudontlooksick #sickandtiredofbeingsickandtired #sickbutstrong #sinusthrombosis #spoonielife #spoonieproblems #spoonie #myheadhurts #ineedanap #totiredtofunction #portacath #lumbarpuncture #headachefromhell (bij Radboudumc)

So I promised an update for everyone who's interested. I was admitted last Saturday because I couldn't stop vomiting and my headache became even worse than it already was the lest few weeks. I hoped they would just do the lumbar puncture (LP) but had the bad luck the one neurologist that's always refused them was on call.. he didn't want to do it, but wanted to admit me for iv fluids, iv metoclopramide (to reduce the vomiting) and more pain meds. They decided they wanted to do an MRI, so had it on Tuesday. Today I've had an preop appointment in another hospital, and the doctors here wanted me to go. I've finally got a date for my shunt revision! I will be admitted may 1st and will be having surgery may 2nd. To reduce my symptoms for the next few weeks my neurosurgeon called the hospital I'm in now to say it's okay to do an LP and reduce my symptoms for the next week until surgery. So I'll be having an LP on Monday and hopefully I'm allowed to go home after. It's an 10 days admission again.. and I'm kinda tired about it. But I'm so relieved to finally have a date for surgery. I know it might sounds a little bit weird, but I'm actually looking forward to having this surgery. I really hope this never ending headache is finally come to an end after. --------------------------------------------------- #chronicpain #chronicfatigue #chronicillness #invisibleillness #ivfluids #brainsurgerysurvivor #brainsurgery #shuntlife #shuntproblems #shuntrevision #vpshunt #lpshunt #lumbarpuncture #electrolyteimbalance #lowphosphate #lowpotassium #hypokalemia #hypophosphatemia #intracranialhypertension #inrtesting #iihsucks #pseudotumorcerebri #portacath #spoonielife #chronichope #neurosurgeon #ivpotassium #headachefromhell #myheadhurts (bij Isala Ziekenhuis Zwolle)

It really doesn't matter, once I'm in the hospital I'm a nurse and no longer a patient. It feels so good to take care of those little ones instead of the one that's taking care of. I know I'm still a patient and I know I'm not miraculously healthy, but I really love being a nurse. It always was and still is my dream job. ----------------------------- Medical update: today I've got a call from my nephrologist. He contact some his colleagues (also the one who said last time it wasn't necessary anymore). He said he had some trouble reaching some of them and he just hung up the phone before he called me. He said you can jump high or low (it's a Dutch saying meaning "whether you like it or not") but you are needing a new port. So he is asking the vascular surgeon to put a port a cath back in, rather sooner than later. He said he thinks they need to hurry and do the surgery soon. I'm actually pretty happy about this, even though it means yet another surgery, becasue they need over 15 pokes for just 3 tubes of blood and over 3 hours, 6 anesthesiologist and 14 tries before the got an iv in. He thinks it's just to dangerous to not have access when needed. So I really hope I'll have a date soon. Haven't heard back from the neurosurgeon,so no date for shunt revision either. ----------------------------- #chronicillness #invisibleillness #intracranialhypertension #chronicillnurse #chronicfatigue #chronicpain #totiredtofunction #iihsucks #ineedanap #portacath #surgery #brainsurgery #spoonielife #shuntlife #nursingstudent #futurenurse #pseudotumorcerebri #bravedutchies #butyoudontlooksick #electrolyteimbalance #shuntlife #shuntproblems #shuntrevision #vpshunt #lpshunt #lowphosphate #lowpotassium #sickandtiredofbeingsickandtired #spoonie #sinusthrombosis

Passed my sign language class with an 8/10! I'm so happy right now! Didn't think I would make it, was so nervous yesterday before the exams but I passed it! Monday my last clinicals at the NICU will start and I'm excited about that, but also extremely nervous. I'm just afraid my body can't handle it.. But hopefully I'll make it through until the end of the semester so I can officially say I have my bachelor in nursing by the end of this school year. ------------------------------- #signlanguage #nederlandsmetgebaren #nursingstudent #nursingschool #nursingstudentproblems #nursingstudentwithchronicillness #chronicillness #chronicpain #chronicfatigue #intracranialhypertension #invisibleillness #nicunurse #studentnurse #almostfinished #ilovemyjob #disability #shuntlife #vpshunt #lpshunt #kidneydisease #electrolyteimbalance #sinusthrombosis #sickandtiredofbeingsickandtired #brainsurgerysurvivor #butyoudontlooksick

The headaches are getting worse every day. Finally had my appointment with my neurologist last Thursday. He told me he was frustrated about how that last admission went (he didn't agree with how is colleague handled things) and that he could imagine it was very disappointing and frustrating for me. He asked me what I wanted and when I told him I would like to go to the teaching hospital in Nijmegen he said no problem, I'll write you that referral letter so you can go and visit them. He said it was also frustrating him because he just don't know how he can help anymore and because it's such a complex case. Also I have an MRI somewhere next week to see if my tumor (vestibular schwannoma) has grown. I'm really happy things are moving and I really hope the neurosurgeon in the other hospital is willing to help me instead of just dismissing me. Because this pain is taking over my life and I'm so tired of this never ending pain, wooshing in my ears, my vision getting worse and non stop nausea. ------------------------------------------ #invisibleillness #intracranialhypertension #iih #iihsucks #chronicillness #chronicpain #chronicfatigue #pseudotumorcerebri #shuntlife #shuntproblems #vpshunt #lpshunt #sotired #sickandtiredofbeingsickandtired #somuchpain #butyoudontlooksick #spoonie #spoonieproblems #spoonielife #vestibularschwannoma #acousticneuroma #headache #headachefromhell #ineedaspinaltap #electrolyteimbalance #myheadhurts #miracleshappen #keepyourfingerscrossed #mri #heatingpadismybestfriend

(Old pic) Wishing everyone a very merry Christmas 🎄 🎁 hopefully I'll sleep tonight so I can enjoy the first day of Christmas tomorrow (we celebrate 2 Christmas days). I wish the best for everyone and I hope no matter what or where you are you can enjoy these days with family and friends. ------------------------------------------ #merrychristmas #happyholidays #mostwonderfultimeoftheyear #christmasbreak #iihsucks #chronicpain #chronicfatigue #chronicillness #invisibleillness #intracranialhypertension #alliwantforchristmasisacure #electrolyteimbalance #kidneydisease #kidneyproblems #iwillgetbackup #ineedanap #spoonie #spoonieproblems #spoonielife #shuntlife #shuntproblems #lpshunt #vpshunt #vestibularschwannoma #sotired #sickandtiredofbeingsickandtired #butyoudontlooksick #miracleshappen

Just a huge bruise on my leg from injecting my blood thinners (it's about 3 inches/7,5cm). I've became extremely allergic to the one I was using, so I've been switched to another one today (was using fraxodi no I'm using innohep). Having an appointment with the ophthalmologist/eye doctor tomorrow morning to check if I still have papilledema and to see if my vision is getting worse or if it's stable for now. I'm just so scared for what she is going to find.. I'm just scared I'll lose my vision and there's just nothing I can do about it as long as my neurosurgeon doesn't want to help me anymore. I'm so tired of fighting a losing battle all the time. I hate this disease, I hate there's nothing I can do about it to make it better, I hate losing my vision not knowing if it'll ever come back, I hate not being able to do what I love most (working as a nurse) because of the unbearable pressure headaches, nausea and strength loss. But most of all I just hate being sick and tired 😴 all the time. I just want a cure (or a neurosurgeon who listens to me, looks at my symptoms instead of scans and actually wants to help me. ------------------------------------------ #invisibleillness #chronicillness #incurabledisease #intracranialhypertension #pseudotumorcerebri #neurosurgeon #nursingstudent #bloodthinners #bruiseseverywhere #bruised #imsotired #sickandtiredofbeingsickandtired #sickbutstrong #sinusthrombosis #butyoudontlooksick #vpshunt #lpshunt #shuntlife #shuntproblems #spoonielife #ineedabiggerhead #headachefromhell #shuntmalfunction #ophthalmologist #lumbarpuncture #imscared #ineedanap #ineedacure #spoonieproblems #spooniestrong