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Thread: Colloid Cyst - My Story

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  1. #1
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    Default Colloid Cyst - My Story

    Hi, been reading for a while but this is my first post. On 01/11/14 I became unresponsive at work and eventually an ambulance was called for me as on the surface nothing looked physically wrong with me. A CT scan confirmed that I had acute hydrocephalus and an emergency op was performed to insert an E.V.D to allow csf to flow out. I was on life support for a short while and spent several days in critical care. They said I was extremely lucky as my brain was coning, and I was very close to dying.

    Coming round in critical care and my brain recovering from the pressure was a very strange experience. I could hear all sorts of strange noises and thought the hospital was made by Nintendo, and that magic was being performed on other patients to fix them. I was also convinced the nurses were tying to kill me, and at one time when I was trying to use a bed pan to go to the loo, convinced myself that I was being filmed for a hidden camera show as I could hear laughing, and I tried to pull all my cannulas out as I thought it was all a joke!

    Anyway, I had MRI scans and they saw that I had a colloid cyst. I recently found out that they didn't see it at first as although it was 17mm, it was showing as the same colour as the surrounding tissue so wasn't that obvious. It was endoscopically removed on 10/11/14 and I was discharged just under a week later. Initially I went back to hospital as didn't feel too great and had vomited, but they put this down to the oramorph I was taking but they said it was best to come back and I had another MRI which confirmed I was ok.

    Leading up to that day, I definitely was losing the plot and we all thought, including myself, that I was having a nervous breakdown. I'd been to the docs the day before and was prescribed betablockers to help me cope with the stress of work, as that's what I thought my problem was, and the doc wasn't to know what was going on in my head.

    For a long time i'd always had short term memory problems, and I wanted to sleep all the time just before it happened, and I was definitely feeling the pressure in my head and was struggling to cope with the most simplest of things. I'd also been to the docs before about blocked sinuses but nothing was really looked into. My sinuses are so much clearer now and I remember coming round from the surgery and feeling so clear in my head. The most significant thing that I had pre surgery and for at least 15 years was really bad breath, pooh breath, which my wife tells me has now completely disappeared which is great! I've done a lot of reading on here lately and other websites too but not read of anyone else having bad breath due to a colloid cyst. Has anyone else had this and now gone after surgery? I guess this was related to my sinuses being blocked but I may be wrong.

    I have briefly been back to work which I found hard but am on annual leave at the moment, and not looking forward to going back next week. Definitely don't feel 100% and from reading on here, could take a long time.

    Anyway, good to speak to other people that have had the same thing happen and share our experiences.

  2. #2
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    Hi Will

    Welcome to the site fellow Brit and fellow brummy.....

    And welcome to a very exclusive group of people to have survived a C.C.

    If you have any questions just post them here and one of our colloid cyst family will try to answer them.

    That morphine they give you after the neuro really had me tripping too.

    Glad you are on the mend, you really have been very lucky to have survived,but remember now to take it easy,get plenty of rest and take your sleep seriously and try not to carry on where you left off,even though you think you should/can, you will work it out for yourself in due course.

    Everything does improve in time but think years rather than weeks unfortunately,remember you have just had major neuro-surgery.

    The mistake I made was to think I could carry on where I left off,it turned out I couldn't but I was the last one to work it out.

    Meet up soon mate, as discussed

    Bill
    Last edited by Bill[uk]; 01-24-2015 at 03:48 PM.
    Colloid cyst removed from 3rd ventricle endoscopically oct 07 shunt inserted late oct 07.

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    Quote Originally Posted by Bill[uk] View Post
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    Hi Will

    Welcome to the site fellow Brit and fellow brummy.....

    That morphine they give you after the neuro really had me tripping too.

    Glad you are on the mend, but remember to take it easy,get plenty of rest and take your sleep seriously.

    The mistake I made was to think I could carry on where I left off,it turned out I couldn't but I was the last one to work it out.

    Meet up soon mate, as discussed

    Bill
    Hi Bill,

    Thanks for your reply, yes definitely looking forward to meeting you soon,

    Cheers

    Will

  4. #4
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    Hey Will,

    How's it going, was great to meet you & your family recently.

    How's the healing process going, frustratingly slow isn't it ?

    It will get better though (slowly) but remember to take it easy.

    When I was in a really low mood once,and which is in fact very rare these days, I always remember what a lovely member here called Christina(houghcrst) once said to me and have never forgotten it, and that was that THE BAD DAYS ARE LIMITED IN NUMBER and that the good ones far outweigh them.

    That was nearly 7 years ago and although you may not feel it sometimes she was so right,and just thinking of those simple words has always helped me put things into perspective and I will be forever thankful to her.

    If ever you want to meet up again or just want my view on something,just let me know buddy,alternatively just post on here and one of our colloid cyst family will pick it up.

    Bill
    Last edited by Bill[uk]; 02-20-2015 at 12:54 AM.
    Colloid cyst removed from 3rd ventricle endoscopically oct 07 shunt inserted late oct 07.

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  6. #5
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    Hi Bill, thanks for your reply and great to meet you too. I'm doing ok thanks, have been signed off work again with vertigo type symptoms, but go back next week. I think this affects everyone differently and i think i have been very lucky really as don't feel that bad, but I have definitely had a low period, but keep telling myself I just need to get on with it and really i should be bouncing with joy as I was lucky to survive.

    Yes would definitely be up for meeting you again, and if anyone else here is local and wants to meet then let us know! (If you are ok with that Bill)

    Cheers

    Will

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    Update - Was waiting for my second (and final) MRI scan which didn't come, so rang up and found out i'd been discharged by mistake. So eventually got an appointment and had the scan not long ago and then went to see consultant to discuss the results the other day. It was all good news and when we were talking I asked about something i'd seen on my scan, and he said 'Oh thats a metal plate' and I said I had endoscopic surgery and didn't have any metal plates! And he said yes I had endoscopic surgery but they'd done a mini craniotomy and then fixed back the bone flap with 2 metal fixings called craniofix. I was so surprised as no one had told me this before! So I wonder how many other people have had this thinking they just had a burr hole, as I've definitely read they can do endoscopic through burr hole only. Also my usual Neurosurgeon was on an emergency call and the consultant I saw said that its usually 3 years before discharge and said I will get another scan which is all good.

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    Nice one Will.....

    Glad you are doing good...
    Colloid cyst removed from 3rd ventricle endoscopically oct 07 shunt inserted late oct 07.

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    Cheers Bill, hope you are all ok too.

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