Surgery in 3 weeks

Posted , 7 users are following.

Hi everyone,

I'm 22 and was was diagnosed with type 1 CM about 2 months ago and my surgery is scheduled for the end of March with my pre op in 2 weeks. Can anyone talk me through what's going to happen, feeling rather nervous and can't find any experience info on other sites sad

Also, what type of things do I need to take into hospital? And how much hair do you end up losing. My op is at the Walton Centre Liverpool. 

Any advice would be hugely appreciated smile x

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  • Posted

    Hi Rachel my daughter had decompresson surgery on 29th jan . She was out of hospitial on the 2nd of feb .I cant believe how well she is . WE Have pics on face book Gill Swan . She had very little hair shaved off she said she felt diffrent as soon as she came to in recovery . She had lots of night dresses and pants for first day t then she was well enough to have pj . she now only takes paracetamol yes she has pain but not anything like she had for many years she is 19 yrs 
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  • Posted

    Hi Rachelle22117. I was just like you. Very nervous but anxious. 1st let me say make sure you are praying to God 1st. No surgery big are small is safe to me. I actually went in with great assurance. If your hair is long don't worry about that because the incision I had was the least of my problem. I wore some awesome wigs. No one knew the difference. But when I got home after a week was when I had a rough experience. My hospital stay was great because I was mostly out of it from the medication. I would tell them to make sure you have good medicine. And good team work when you return home. My mom stayed with me for 3weeks. I couldn't eat because of the pain. But I will say I was able to gain back more moment in about a month. You may be different and do Great. So don't think the worst. Keep a clear head and calm down and have strong faith. By you being younger than me is great you'll probably heal faster. Drink plenty of water and eat right is also great. Best wishes to you.
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    • Posted

      Hi Wanda72973, so glad to hear that the nerves aren't uncommon, I think I'm just getting very anxious about it all, suppose it's fear of the unexpected. Sorry to hear that you had a rough time and I hope that your feeling better for it now. Thank you for your tips, I will definitely take them onboard. All the best x
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  • Posted

    Hi Rachelle, you have some good advice already. I'm an older 61yr who had surgery over a yr ago. It took a long time to get diagnosis but had no idea what I was facing, didn't come across this site till later. I didn't have a very good recovery as lost my speech and couldn't eat 1st few days, it was the nerves that caused this and returned to normal. I suffered dizziness and nausea for few months and had to be helped doing everything. Looking back I thought this is it I'm never going to be able to do things on my own, but each wk was a stepping stone and improved all the time but slowly. So don't rush trying get to normality you must rest. I'm still getting dizziness and nausea and some pressure head ache but not as bad as it was. I'm now working part time and trying to be positive as you know surgery isn't a cure it's to prevent the Condition getting worse. I pray you have a better recovery than I did, but had I known what could have happened I would have been prepared instead of scared. I had my surgery in rvi Newcastle. And hair covered scar in no time. Good luck hun x
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    • Posted

      Hi Helen, so sorry to here that you had a rough time, I'm glad you're feeling better now though. Thank you for your honesty, as I feel more prepared and realistic about the recovery now. X
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    • Posted

      At least if any of these thing happen to you Rachel, you know your still going to be ok. I didn't, and it was awful. Hopefully you will do better, I'm a jinx and if out goes wrong you can be sure it will happen to me! Haha
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  • Posted

    Hi Guys, hope your all well.

    Just a little update, I had my decompression on 29th and all went well. The feeling after really does just feel like youve been hit by a bus but don't try and prepare for it, just go with it and the medication helps lots.I was up and walking within 3 days and eating again.

    However, I went home on the 5th but was brought back in on the 6th with severe headaches and had hydrocephalus so I've now got a temporary drain in to get rid of the excess CSF. Feeling really good now though.

    The best advice I can give is that once you've had it done, really take it easy cause any over doing it can do all sorts to your head.

    For things to take into hospital the most important things to me are PJs, some drinks other than water, and lots of toothpaste etc cause your mouth tastes awful for days.

    Make sure your 100% confident with your consultant, feeling in good hands and having all your trust in them really does help.

    Good luck to anyone going through similar xxx

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    • Posted

      Been wandering how you were Rachelle, so good to hear your on mend , even though you had a set back. I was sick every morning for weeks so your doing great. As you know no overdoing it. As hayleybell says here for you if need a chat or anything worrying you x
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  • Posted

    Hey Rachelle,

    Good to hear from you hun, so glad you are on the mend, despite the hydrocephalus. You are in good hands, The Walton centre is amazing!

    A bottle of squash is great to take in & hide the multitude of fowl tasting hospital water! 😂

    Take it easy now you are home & give your body the rest it deserves. You are right about overdoing it. I am almost a year post op, been doing really well, (after an initial really tough first 3 months), a small reminder for me today that I am still not 100% - I went to the cinema last night (first time since the op) got the wrong seats and ended up at the front, I am bad today, horrid symptoms in my eyes, neck, ears & head! Front row seats is a no, no! Must have been the tilt in my neck & surround sound!

    Great film though, very uplifting "Eddie the Eagle"!😂🤓

    Keep us updated with your progress, if you need a natter, plenty of us here that are post-op to lend an ear.....

    wishing you a speedy recovery....

    🤕

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  • Posted

    So glad you are doing well .I have so many questions, but for now, just good to hear you are home , and doing OK Take care, thankou for update x
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