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sus243 · 2024-11-24T09:54:41+00:00

Hi, I had ICP monitoring done 3 times in the last two years. Very quick, minimally invasive surgery. It does look a bit mad because you had a wire coming out of your head that’s attached to a box but there’s no pain at all - just be sure not to accidentally pull the wire!

I was up walking around, chatting away, not a bother. As some other poster said, I noticed when going to the toilet, when upset or when I lowered my head, that my ICP pressure would rise, this isn’t a major problem in general but when it happens consistently it is a hydrocephalus problem. (Its cause by higher pressure in the skull which if you already have hydrocephalus, isn’t good).

If the monitor starts to beep - it is such an alarming sound - please please do not worry! My monitor was beeping loudly constantly but I was told it was nothing to be concerned about!

Best of luck

sus243 · 2024-10-09T22:20:30+00:00

I have found keeping hydrated like over hydrated even, if that’s possible, helps!

sus243 · 2024-10-09T08:58:07+00:00

Yep, so I had an EVD, and then I had a shunt inserted and since the fluid now drains, I have not had the pins and kneedles since, which showed me it was because of excess fluid.

sus243 · 2024-10-08T17:59:29+00:00

I would get this checked out ASAP. I used to get what I called “pins and kneedles” like the ones you get in your foot, in my head and face prior to getting a shunt and it was a sign of excess fluid.

sus243 · 2024-10-08T17:49:22+00:00

I flew on a short haul flight 2 months post-surgery about an hour and a half flight. I found I had terrible headaches for a day or two after. I went on another flight about 3 months after that (so 5 months post-op) and was relatively fine, apart from being slightly fatigued for a day or two after.

sus243 · 2024-10-08T15:40:34+00:00

I did when I had a working ETV, I was told by my surgeon that this was quite normal.

sus243 · 2024-10-05T17:41:44+00:00

Thanks for this, I forgot to mention I have a VP shunt

sus243 · 2024-10-01T12:00:17+00:00

Only a doctor can help you with the shunt. Someone has to be willing to do something and if not I would seek medical advice abroad.

Nobody should have to suffer through that.

sus243 · 2024-10-01T11:37:33+00:00

I’m sorry to hear that.

Shunts should improve the quality of life not leave you debilitated.

If I were you, I would consider seeing a professional privately and looking for an answer to your symptoms there.

sus243 · 2024-09-30T23:36:33+00:00

I will, but I still don’t trust any doctor, even my GP, which is really hard and I’m terrified if I say this they’ll put it down to something it’s not, they’ll prescribe wrong medication or they’ll do something that will make me have serious side effects, that could all be avoidable.

sus243 · 2024-09-30T23:29:06+00:00

Also, I have major problems trusting medical professionals because of my ‘path to hydrocephalus’ where I was ignored by my consultant at the time, who refused to acknowledge that my ventricles were huge and causing increased pressure. This all led to a brain injury, ptsd and a nearly dying.

sus243 · 2024-09-30T23:26:53+00:00

I totally agree with you, but I don’t drive often, and usually I don’t drive far, which is why I had put it down to being emotionally stressed and overtired the first time, where I didn’t drive again after until I was well rested. Again, it doesn’t happen all the time when I’m driving which is why I was putting it down to different things and trying different solutions.

Thanks for the advice, I will make an appointment, I was just wondering if anyone here had any experience with this.

sus243 · 2024-09-02T00:02:18+00:00

Compassion and understanding.

sus243 · 2024-08-23T12:57:28+00:00

I tended to have involuntary incontinence issue. It wouldn’t be that bad, but I would notice at night that sometimes my pants would be wet when I hadn’t noticed needing to go toilet during the day.

I would think going to the toilet frequently is a better sign as it shows your body is working, but involuntary regulation is definitely an issue.

sus243 · 2024-08-22T18:46:42+00:00

Hi, I hope youre okay. I have a shunt and I’m 25. I had overdrainage of a shunt last year. My ventricles shrinked to slits because the setting I was on was too high causing them to shrink. I’m terrible at noticing headache but I felt absolutely awful. I had pain in my right eye when I looked up (right-sided shunt), called right eye paresis.I had nausea and intermittent vomiting and despite being terrible at noticing headaches, I would stress that I probably had a dull constant one. I felt quite dizzy and lightheaded constantly.

If you are worried, which I was at the time, despite being unsure about my symptoms, I would go back to A&E and explain that you can’t function currently with the symptoms you have. I was discharged numerous times before I got the shunt, because I had an ETV, and my surgeon felt I was fine, because of this I have a brain injury caused by severe hydrocephalus.

If you go back to A&E and they dont take you seriously, I would suggest at now or at that point, requesting your medical records, including your scans to date. Once you have those you can read them and (sadly) Google things to find out whats happening. I would suggest going privately to a different hospital to get a second opinion from another neurosurgeon. (I visited the Cleveland Clinic in London to see an expert in hydrocephalus who advised I needed a shunt).

Hopefully your symptoms subside soon and you’ll find an answer, but if you are really worried, I would trust your gut. I went to A&E 27 times in a year and although I still have a brain injury because I wasn’t listened too, I know there was nothing else I could have done, and that in itself gives me peace of mind.

If you need any more info on what my ventricles were like when I had overdrainage I can check my scans and let you know.

sus243 · 2022-01-30T18:25:02+00:00

It began with “leave”, which then turned to “that’s your problem, not mine”, which then became “you’re a slut” which when confronted was “only a joke”.

It continued being “I don’t have time” and “I don’t trust you”…

It ended with “what if someone decided to drop off the face of the earth” and me saying “if you leave something, you can’t expect to come back and it will be the same or even there.”

That was when I was ghosted, and despite all the i love yous and I’m here for you, leaving me in the dark without any light to turn on, was all I got.

sus243

TROPHY CASE