Wednesday 7 November 2012

Video Telemetry


In October I had a 3 day/night hospital stay in order for them to perform a video telemetry test to find where my seizures are coming from in my brain. Video Telemetry is basically a test that constantly records a persons brainwaves via electrodes stuck to the scalp whilst simultaneously capturing a video recording of the person. 

I found it very hard to get hold of any information as to what it was going to be like staying in hospital during the test and the process that you are to go through. I don't know about anyone else but I like to know what I'm to expect. So I thought I'd get as much as a photo diary as I could and maybe someone else will see it and not worry to much... I wasn't actually allowed to take photo's but give a photographer an interesting/unusual experience and well...

Anyway here's me looking rather fetching all kitted out and in my pyjamas (even if I do say so myself...)

Right I'll explain the kit as much as I can. There were 25 (I think) electrodes stuck on various points of my head with a couple on my chest that were to measure my heart rate. They were all gathered and wrapped in the bandage you can see in the photo. The wires are all connected to a battery pack which sits on your waist and is quite heavy. Connected to the pack is a "event button" which you or anyone with you press if you think an event has just taken place or is in progress. All the data is collected in the pack and then relayed over to a computer which is in the room with you via a long data cable you can see leading off the pack towards the floor. You are connected to this the whole time you are in the test, but there is plenty of it so you can move around freely. Well I say move around freely, they prefer you stay close to or on your bed as this is where the camera is directed and of course if anything where to happen its better to be on camera! You are filmed 24 hours a day with a normal camera operating during the daylight hours and an infrared camera during darkness. They do not film you in the bathroom however, this is also where you get changed for obvious reasons... 

I have to be honest and say the application of the electrodes to my scalp was quite sore. I do have very sensitive skin however so it probably isn't the same for everyone :) They rub your skin to remove the top layer of skin cells in order to allow for a better conducting connection between skin and electrode. They then used a glue (as opposed to gel which is used in normal EEG's) the glue is basically the same stuff they use when gluing a cut together in the emergency department, strong and smelly stuff! Over the course of the test a neurophysiologist came in and checked that all the electrodes were conducting properly and would adjust/add more glue if needed (I had one particular one that didn't want to play ball!). Trying to sleep was pretty hard... it's not everyday your shoved in a strange room with your every move being watched whilst numerous wires superglued to your head pulling with the slightest of movements as they're attached to a chunky battery pack fastened around your waste is it? But then you get past the point of caring and tiredness takes over and you sleep. If you press the button a nurse will come and check on you, take your obs etc. The video from your room is streamed on the nurses station also so they can keep and eye on you and help you if anything happens. That's pretty much how it goes for the duration of the EEG. 

Then of course they have to take the wires off you... this I found painful, again it might just be for a few people but the glue made my skin so sore it bled(lovely). The lady was trying to be so careful taking them off to. They take the electrodes off by dissolving the glue with neat acetone, very strong stuff usually found in nail varnish remover. Once the glue is dissolved it fluffs up and they comb your hair with the aim of getting the most of it out. There is so much of it though it took me DAYS to get it all out even after washing my hair time and time again and combing it non stop. The tape they use to connect the electrodes to skin areas left nice red marks for a long while too. Put these together and the result is having to walk around looking like I had very specific patches of sunburn and sever fully dandruff... not a good look. There's no particularly long lasting results though thankfully. 


It was very strange being in hospital without actually being ill as such. It was pretty boring at times but I just napped a lot, received cute gifts, read, had visitors, rediscovered a comedian I love (Lee Evans!) and ate a lot of food, another strange thing for me whilst being in hospital. Usually when I'm in hospital seizures make me so nauseous I can't stomach anything! 


So all in all it was an experience I don't particularly want to go through again. I just have to wait and see what the results are now. Tense times. 

16 comments:

  1. I went through this exact experience back in January and also found it extremely difficult to find any information regarding what the experience would be like. The "information pack" the hospital sent me wasn't very informative really and I was really nervous when I got to the hospital. I wish I'd had this post to read before hand. I think it's really going to help people in the same situation.

    I've now had two four day long EEG's and I can say that both times the glueing process and glue removal process was very uncomfortable and left sort of burnt patches on my scalp. I'm prone to eczema though, so maybe it's not the same for everybody.

    Anyway, I just wanted to say thanks fo blogging your experience with video telemetry :)

    Anna xx

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    Replies
    1. I had very little information in a letter which arrived whilst I was in the hospital! Typical! It's not the most pleasant of experiences is it? But it was the nicest of all hospital experiences as I'm sure you can imagine!

      Thank you for saying you think someone might find it useful maybe, that makes me glad :)

      Jade X

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    2. Yeah it's much nicer than being in hospital when you're actually sick. You get to actually enjoy being waited on hand and foot and getting to sit around in your pyjamas all day.

      You're welcome.

      Do you mind if I re-blog this post? It might help spread the word about what video telemetry entails.

      Anna x

      Delete
    3. Not at all re-post away!! X

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  2. Hi Jade. One thought about your hair. I can't remember what drugs you are on at present, but when my son took Epilim and Keppra his hair feel out and thinned - blocking plugholes and even his hairdresser noticed. Once his medication changed his hair grew back and he now has the normal family thatch!

    All going well for him at uni still!

    Best wishes, Kate

    ReplyDelete
    Replies
    1. Hi, ahhh one of my meds is Keppra also so that may well be the cause as my hair thinned a lot to start with then I didn't change the dose for a long while until this August where it was increased again and then it's started falling out again. I'll mention it to my neuro next time I see her and see if there's anything I can do.
      I am so glad he's settled and uni is going well, really nice to hear!

      Hope you're well
      Jade x

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  3. You are very brave and strong! :)

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  4. Hi there,

    My husband is due to go into the Royal London in a fortnight to have this done for a week. He's wondering if he will get a room to himself or be stuck in a ward and whether he will be confined to his bed for most of the time?

    ReplyDelete
    Replies
    1. Hi! sorry for taking so long to reply to this I've actually just been back into the hospital for another VEEG stay. I can only go on what I have experienced and it has been a private room with en-suite which I am very thankful for for the privacy. It can very boring and a little lonely though as I'm usually with some ALL the time out of hospital so it's a bit strange!
      You are confined to the bed for most of the time simply because that is where to camera can see you.. it's hard going for the active among us but worth it in the end :)
      I'm not wishing any seizures onto him but I really hope it goes well and gives out some good results/answers for you both x

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  5. Thank you so much for blogging your journey! I've just been 'summoned' for one of these in March. I have no idea how I will handle doing nothing for 5 days. It sounds terrible. I typically can't sit still for more than an hour! They definitely don't provide much information.
    Is there internet available? I wonder if I'll be able to do 'prison cell' style exercises :)

    ReplyDelete
    Replies
    1. Ahh hopefully it won't be too bad :) It does get boring though I'm not going to lie! If you can line up some visitors that will help pass the time along with a book or some DVD's :) There wasn't internet available in the hospital I was in at the time but there is now (typical!) I suppose it all depends on the hospital you will go to. Best of luck I hope it's not too boring and it helps you in some way x

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  6. Thanks for giving us all the gruesome details! Mines next week so I'm googling all I can. I was only given the appointment last week as I assume someone cancelled and I was next on the list.

    I've borrowed truck loads of DVDs and books and other little forms of entertainment in preparation of not dying of boredom, my hospital doesn't have wifi eitheršŸ˜±. (I've also done some tweeting to people for some info too!)

    But this has been a brilliant story about what happens, it's the only one I've found so far that's of any use!

    Thank you! I'm really not looking forward to not being able to shower/wash hair!

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    Replies
    1. Also...were you allowed to sleep under a duvet/blanket?!

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    ReplyDelete