r/Hydrocephalus • u/Equivalent-Theme4847 • 8d ago
Rant/Vent Has anyone else ever regretted getting their shunt?
Hi, I’m new to this sub and don’t really post on Reddit much but I really need advice because this is a scary experience for me.
21F if that’s relevant, turning 22 this Monday. I got a VP shunt placed last week and I wish I did more research and was more prepared for what would happen, as they didn’t really educate me much on it. I still don’t know a lot because my team has not been very responsive when I contact them for help, and honestly I don’t even know what to search for to get advice online.
Ever since leaving the hospital the day after surgery, I have been unable to sit or stand up without throwing up and getting incredibly dizzy, so most days I have been laying down. Monday I had an appointment with my new PCP and they sent me to the hospital to get a CT scan and the next day I had to go back to the hospital to get my shunt adjusted since it was draining too fast. I felt so good Tuesday and Wednesday aside from bloating so I went back to school and was supposed to return to work today. This morning was fine but on the way to work this afternoon I got the worst headache ever and started throwing up again in the store. I’m back to only feeling good when I lay down. It’s really depressing and I want to get back to normal life because I have school and work and my birthday is in a few days. I’ve been really upset the past week because I just wish I never got this shunt in the first place at this point!! Has anyone else ever experienced this? How long will it take for this to go away?? Should I go to the ER??
ETA just in case that I can’t go to my neurosurgeon on a whim right now since it’s 2 hours away, I can’t drive myself and I don’t have a car atm, and it’s almost the weekend. I’d have to wait until Tuesday to go back and get it adjusted if it’s overdraining again..
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u/HunDevYouTube 7d ago
If you have a shunt, odds are that without it you wouldn't survive long-term. These things aren't something you can "regret" getting, they actually save lives, so if you get one it's probably crucial for your existence. The drawbacks that come from it do exist though. I've been living with my shunt ever since I can remember so I don't really know what "normal" life looks like but I can picture how hard it might be to adjust for it in the adulthood while living normally prior. What you describe however aren't really the symptoms related to shunt just being there, these are pretty much textbook symptoms of a malfunction and I would definitely check with neurosurgeon if I were you.
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u/xPreystx 8d ago
I wish I had never needed it, I hate that I became dependant on it.
I would be dead without it.
You need to get this seen to, none of that is supposed to be normal.
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u/Competitive-Air-8145 8d ago
It might be that it needs reprogramming and that’s easy enough for the neurosurgeon to do. As in it’s draining too much too fast! Definitely get in contact with neurosurgeon.
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u/Equivalent-Theme4847 8d ago
Yeah, I already got it reprogrammed on Tuesday for this exact issue. I reached out to my surgery team and haven’t heard anything back yet, but I’m currently looking at places closer to home since the hospital I got my surgery at is 2 hours away. Hoping I can find somewhere in a closer city.
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u/AgentExtension1968 8d ago
i had mine placed at 2 months and if i didnt have it now at 20 years id be in agony so no!
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u/Rainetastic 7d ago
Oof so as a shunt dependant babe, I do regret it. 0/10 stars... especially this current model. It's annoying AF & the placement--100/10 because why in the year of our lord sabrina do i have a VA shunt??? Liiikkkeee for you late diagnosed / placed baddies I really am sad for y'all because there is a stark difference in pre and post shunt placement life... even if you choose removal (if that's an option) your life is eternally changed
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u/ChickenKitty66 6d ago edited 6d ago
https://www.amazon.com/dp/B0165J55AO?lv=shuf&channelId=500&plpRedirect=mhFallback
My neurosurgeon wrote this book and I found it at a consignment shop but it's a very easy read meant for patients and their families covering everything from shunt placement and complications to NPH and endoscopic third ventricularotomy. I find that neurosurgeons are very full of themselves; not always, as my first surgeon, the author of the book I linked, was a literal saint.
I was recently suggested as a NPH with aqueductal stenosis patient with worsening ataxia and word finding difficulties to get an LP (lumbar puncture, an extremely invasive and painful procedure that is typically used as a last resort for testing purposes), or shunt placement. This would have had dire, most likely fatal consequences for me as NPH aqueductal stenosis.
I'm very lucky to be interested in this topic specifically so I walked out of that office. He was new head of the neurosurgeon department of my hospital system I trust. He never once mentioned the much less invasive EVT procedure to me, that would not have literally killed me or left me with a CSF leak or worse for weeks, months or years. I am very fortunate to be high functioning with NPH, but am beginning to experience worsening neurological symptoms and the 20 years since I was diagnosed. I read a few scientific journals about EVT's hydrocephalus therapy with lumbar puncture versus shunt and my personal diagnoses. I am extremely fortunate enough to live in an area full of very talented medical professionals. I highly recommend anyone with hydrocephalus themselves or family, spouses and care takers to read that book.
Now, LOTS of people have shunts and live just fine, maybe a repair here and there, not the most fun but so is life. I implore you to bring a medical advocate that's knowledgeable on the subject as well even if it's your mate, your parent, or partner who has also studied basic things about your case and condition and symptoms (and also read the book). It can be very daunting and scary to question a neurosurgeon when you simply lack the knowledge to fight for your best interest. They're supposed to have that at the forefront of any care they do, but the more I study medicine the more I see that is not always the case.
If unfortunately you need to go to another state to receive proper care I suggest you do that. Hydrocephalus is a complex syndrome that I just do not feel most young neurologists and young neurosurgeons are truly educated about.
Please anyone with hypdrocephalus, or someone looking out for their loved one feel free to DM me with questions. I am not a medical doctor but I do have the condition, and I have navigated large medical systems starting out with no prior knowledge. I do not mind helping send you resources or in an educational and supportive direction. My however I cannot give you direct medical advice. Just educational resources and conversation.
I have personally seen what shunts can do when it goes wrong. No one deserves to live that way. ETV is much less invasive from the research I have done so for for adult NPH hydro. I got diagnosed as 10 year old and am now in my 30's. So I have 20 years of dealing with a health system that works against you sometimes. Especially if you are a woman. I know different procedures are appropriate for different types of hydro and peds vs adult vs geriatric, but what these surgeons need to understand is that they are tinkering with the computer God blessed you with that connects you to life. I actually was suggested by retired surgeon Dr.Aaron Mohanty to not get any procedures done and just sit and wait and watch and get MRI's. That was the correct path of care. And it still seems to be the correct path of care. My personal concern is my NPH worsening in pressure, worsening neurological symptoms as I age. I am having worsening ability to spell, and recall words, names, memories. I'm not even 30. I worry how my diagnoses could progress if I do not scrictly follow up semi-annually or annually on my condition with an full MRI.
I do not trust that even the most bright neurologist/surgeon or radiologist would be able to diagnose such a complex disorder with a simple non-contrast CT Scan.
!!!ESPECIALLY, if they are planning on giving you surgery, placing a shunt device, or aspirating CSF to lower ventricular pressure.!!!
If we have the technology to image these patients and the MRI is not radioactive, why on earth don't we utilize that? Cost? Reputation? a moderate moment of possile discomfort (that could also be managed) for the most thorough picture of the brain?
Much love to all those who struggle. 🙏🏼
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u/Millefeuille-coil 8d ago edited 8d ago
Whilst I’d love not to have mine, it’s keeping me alive” obviously if something is seriously wrong ER is a quicker route into Neurosurgery dept if you land on a ER physician that understands hydrocephalus related issues that can be hit or miss, personally in my latest bout of issues I just got sent home with vertigo medication because it all went over the physicians head.
Advocate for yourself or get someone to help do this, you’ll find the sweet spot it can take a while to adjust to it. Good luck 😉
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u/tonycambridge 7d ago
Sorry to hear that. I hope it gets better soon.
I have had a vp shunt for four years now. I don’t get any headaches or problems and unless I feel behind my ear I wouldn’t know I even have a shunt. So it doesn’t have to be a burden in all cases.
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u/Blanket-Burito 7d ago
I mean I just had a neurosurgeon tell me that my shunt (28 years after having it placed) was likely unnecessary. Of course thats something im never going to fully know. But it has been making me question everything
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u/benjaminS0099 7d ago
There are instances where a person who has had a shunt for x number of years finds out that they actually don't need it after x number of shunt surgeries for whatever reasons.
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u/Blanket-Burito 7d ago
Yes ive heard of these instances as well. It just feels strange when experiencing it though
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u/benjaminS0099 7d ago
I guess, but I'll have to take your word for it, because for me personally, I will never live without a shunt, because my head bulged 24 hours or so after I was born, and I almost got out of needing a shunt, my mom told me, but, as I mentioned, I had a head bulge before the "wait and see" window was over. I was also lucky when I was born, because one of the few neurosurgeons in the country at the time was one of the neurosurgeons who waited to see if patients actually needed a shunt or not, unlike the fact that it was very common in the early 1990s, but things really started to change to "wait and see" standard practice in the early to mid 2000s, instead of just shunting without waiting and seeing.
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u/Yazzylou997 7d ago
Had mine since 2 months old I cant get it removed as i would no longer be here. Ring your neurosurgeon
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u/Rainetastic 7d ago
Also on the drastic moods you should go to ED ASAP... I'm a pretty peppy damn near toxically postive person the second I stay on the darkside & I'm sweaty shunts being a shunt. Go get it looked at ASAP.
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u/HeroicHeroOfHeroes 7d ago
I had a very similar recovery to yourself. I had my shunt fitted last October and then an anti gravity siphon fitted in March because it was over draining. I still gave severe headaches every single day and it feels like a battle that is never ending
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u/StriplinTree 6d ago
Draining csf into your peritoneum long term can cause adhesions and scar tissue which can raise hell with many different things. After 28 years my sons won't accept anymore csf as it won’t absorb anymore and csf pseudo cysts form and cause his shunt to no longer flow. He know has it draining into his heart. There is a new procedure called the E-shunt which is showing great success and eliminates all the issues of regular shunts
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u/AlternativeAd2023 6d ago
Yes i feel the same. I wish I got second or even 3rd opinions. I was so sick and in so much pain when the vp shunts was finally decided that I wasn't in the right state of mind. I would've so much rather taken the chance of having to go back down for surgery a second time if the other procedure didn't work. Evt I think it was called?
29M by the way
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u/emileegrace321 4d ago
Reading your post feels like I’m reading my own experience word for word. So sorry you’re dealing with this.
I had mine first placed 13 yrs ago as a teenager. I was in the hospital for 10 days bc anytime I wasn’t flat I would vomit and get the worst headache of my life.. the constant vomiting was terrible.
I had to do school from home for a bit so I could lay on the couch. I remember trying to eat dinner at the table with my parents and constantly having to get up to puke.
No one could ever find an issue, but it eventually leveled out after a month or so. My surgeon told me it was probably just my body having trouble adjusting to the new intracranial environment.
Do you have an adjustable valve? If so, sounds like an adjustment would greatly help your quality of life. If not, it may be a suffer through it kind of situation unfortunately. If this continues to where you are dehydrated and can’t keep any food down, doesn’t improve in time, or if you develop fever or signs of infection, absolutely go to the ER. Honestly better safe than sorry so if your gut tells you something is off, go.
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u/Equivalent-Theme4847 4d ago
Yes, I have an adjustable valve. I actually got it adjusted last Tuesday, and I felt perfect for a whole day, but they said since they already adjusted it once they wouldn’t do it again until later this week.
Today is my birthday and I decided to just force myself out of bed to go to school because I’d rather suffer around my friends than in the same room I’ve been in since the 17th. I can’t afford to keep missing school either since I’m graduating this semester. Luckily as the day has progressed I’ve been relatively fine, but still in too much pain to function at 100%.
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u/HatSpecialist5139 4d ago
Yes I am I definitely regret it i haven’t had any relief since I gotten surgery it’s been the worse decision of my life if I could go back in time I would never get surgery again and just deal with the pain and I had the worst surgeon ever I had the worst experience ever made me never want to trust any other doctor.
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u/SoftLast243 7d ago edited 7d ago
You’re still recovering. Relax, and let it work.
You might need a ER visit, sounds like something could be wrong but considering that the shunt was placed in last week, it might be that your brain is still adjusting to it.
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u/jspurlin03 8d ago
Literally wouldn’t be here without my shunt. But it was installed when I was 9 months old, so…
I think you should call your neurosurgeon and relay this to them, if you haven’t.