ICP Testing: I was admitted to hospital last... - Headway

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ICP Testing

ftt1960 profile image
16 Replies

I was admitted to hospital last Thursday for intra-cranial pressure testing. It was a rather ‘interesting’ experience. I was given the option of general or local anaesthetic and chose the latter, as I felt recovery would be quicker. There was no need to shave any part of my head, as the hole was drilled just below the hairline above my right eyebrow. The injection of local anaesthetic was rather nippy but tolerable with a squeeze of the rails on the trolley! The drilling and feeding of the sensor into my brain was painless. Once the monitoring was underway I had to be careful how I moved so as not to tug the sensor wire, as it hurt my head if I moved too far from the device but I soon learned what my movement radius was. I had to be disconnected to go to the bathroom. I did worry that I might manage to strangle myself while sleeping but thankfully this didn’t happen. My neuro-surgeon advised me not to do this, as it just creates paperwork 🤭. I had the sensor removed after two days. The doctor who came to do this said he was coming to torture me and he wasn’t wrong. It hurt like a bitch but was soon over. I now feel as if I have an egg and bruise on my head. I’ve had a few nippy headaches at the site and my walking has been adversly affected. My gait was already off due to hydrocephalus but it has become worse. Hopefully this will resolve. I am now just waiting to find out what happens next once all the data has been reviewed.

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ftt1960 profile image
ftt1960
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16 Replies
Leaf100 profile image
Leaf100

You got it done , ftt1960. Whew. Let's hope you get some helpful news after going through all that.Keep us posted, and I hope your headaches and gait issues clear up soon.

It absolutely amazes me what people go through sometimes. It'd be ... I don't know what.. all sorts of thoughts must have been going through your head...

And you got it done.

Big hug to you.

Leaf

ftt1960 profile image
ftt1960 in reply toLeaf100

Thank you. Thought I should write about such an interesting experience. Slept through the night lat night but headaches woke me twice the night before. I can only hope they analyse all the recorded data and come to a decision quickly, so I can move on with life. My gait is so affected that I won’t go out alone at the moment. Too scared of falling, not sure that using my crutch will help. Hey ho, just got to be patient.

Leaf100 profile image
Leaf100 in reply toftt1960

A 4 wheeled walker you can sit on when necessary may be your friend for awhile. I am not sure if you call them Zimmer frames in the UK? I have heard that on TV shows , but not sure if that means the ones without wheels.I had bad balance problems for years, and when I went from a to b I ended up at y.

My 4 wheeled walker was my bestest buddy then, and I still use it when necessary though luckily I don't need it all the time any more.

I found the extra info about terrain going through my hands , plus that tiny bit of extra processing time, did me a world of good rehab.

ftt1960 profile image
ftt1960 in reply toLeaf100

They are called rollators here. I discussed the possible need for one with my partner just the other day. I win’t rule anything out that will help me to maintan independence. At the monent I win’t consider going out alone be ause I feel so unstable..

Leaf100 profile image
Leaf100 in reply toftt1960

You can use the rollator in the home as well, stability for trips to the loo, for example. It's a terribly insecure feeling when your balance is crap. I've had more than a few falls and you certainly don't need that to happen to you.I think a lot of the time we are so sure we won't fall , because we haven't...and then we do...

I sound like a nagging Mum, don't I ? Ha ha...

Stay safe

You are very brave! Had this process under general right after my AVM rupture to help drain the bleed as it was raising my ICP. I was rather ‘out of it’ anyway so probably the only option. Really weird being ‘hooked up’ after when I was aware - took some time to get used to my limits too! Removal wasn’t so pleasant either but not so much pain wise, I’m just really squeamish! I think as it was early days still for me, there was so much global discomfort that the specifics of this procedure just got blended in! I do remember it being very tender for a good while after and swollen. Fortunately I never had to have any further intervention after the drain.

4 & 1/2 years on, I still have a hole just behind my hairline. No swelling any more or pain, but still feels odd. A bit ‘exposed’ really! I’m very self conscious of it and protective especially if I go to the hairdresser- something I now avoid mostly so I don’t have to explain.

In the great scheme of things it is no biggy! Hair has grown back and not noticeable. My walking is also much improved!

Hope it all settles for you too.

ftt1960 profile image
ftt1960 in reply toLife-Goes-On-2021

I panic when I do fall in case I hit my head, as I have a piece of skull missing. Anxiety about hitting my help diesn’t help because I’m not very relaxed when out walking. Have said I win’t go anywhere without my partner until my walking improves. Too scared. Miving around the house is fine, As I can use walls and furniture.

Alibongo60 profile image
Alibongo60

Hi ftt 1960, well done you, very brave having gone through with a local, I’ve never needed this but whilst on holiday in Majorca, I started having tias, was admitted to hospital and had a very large aneurysm pressing on my brain stem, which I knew about but they were fascinated with and bombarded me with all sorts of fascinating tests that I’ve never had before and never want again, needless to say in the end after a week I discharged myself wasn’t letting them touch my brain, and have not been abroad since unless you count wales, sorry waffling, hope your balance recovers and you get the results you need love Alice xx

ftt1960 profile image
ftt1960

I initially had a brain bleed after bashing my head in the kitchen two years ago but suffered constant headaches since. Nothing was decided until my review 18 months later. So almost twoyears later I’ve now ‘enjoyed’ ICPT and am awaiting the next move. At least the ‘egg’ on myhead is rather seasonal. It is very tender to touch but I’m sure it will settle in time..

ftt1960 profile image
ftt1960

Not sure I was being brave, just didn’t want the general anaesthetic hangover. Asked the surgeon during the surgery if it was a hand drill he was using, he replied yes and promptly showed it to me, quite fascinating. I’m not at all squeamish except with vomit. I told the surgeon I would like to watch the procedure. Yes I’m a bit weird. Wanted to watch my c-section years ago. Years of working in science develops curiosity.

Alibongo60 profile image
Alibongo60

I used to be a nurse and am a bit like that, but some of those tests in Majorca were very strange, and the ward was mixed with no curtains round the beds I told my daughter I wasn’t stopping, she’s a nurse and said she wasn’t leaving me, thank god for the nhs

Teazymaid profile image
Teazymaid

thank you for sharing the experience .. I do like all the details but unsure if I would have wanted to be awake .. very brave and I’m ok with a general so probably would have chosen that 😁.. hopefully you will get some answers very soon .sue x

ftt1960 profile image
ftt1960 in reply toTeazymaid

I had a call from the hospital today and am now going back in next Wednesday to have a VP Shunt fitted on Thursday as long as there’s a bed.

Teazymaid profile image
Teazymaid in reply toftt1960

fingers crossed 🤞

ftt1960 profile image
ftt1960 in reply toftt1960

under general🤭

sending hugs and all the best. I’m sure your walking will improve after given time and confidence too. Just keep pushing by little steps. It all adds up. I’ve always had the saying with my kids that you can’t eat the whole elephant at once, burgers are better( and a freezer)!

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