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 
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 
x
Hi Rachelle , I too would like to know the same as you . I have only had my diagnosis 2 week . I hope you don't mind me joining in . Jill x
Hi Richelle
I am sorry to hear your news. I understand this is a worrying and difficult time for you.
With type 1 chair I as you known you'll have decompression surgery. I don't know the full details of the operation apart from they will make room from the base of your skull. By doing this the base of your brain will have room therefore leading to hopefully a lack of the chair I symptoms such as headaches.
I say hopefully because unfortuantly decompression surgery is not a garuntee it will fully help to relieve you of chiri.
What I missed when I was in hospital was a DVD player and the Simpson's. so make sure you have something to keep you entertain. Also plenty to drink to stop dehydration. Hair wise they will shave the back of your head. However being a guy with long hair at the time they might shave under the hair so when it's down know one knows what has happened.
If you would like a detailed version of what the decompression is I can suggest YouTube and type in decompression surgery.
I wish you all the best at the end of March and the future. If you need to further talk oe want anymore personal advice please e-mail.
Take care my dear
Jon
Hi Jill
I hope my reply also helps you to some what degree too.
Please e-mail me if you have any further questions. I'll try my best to answer them.
Take care
Jon
Hi Rachelle & Dizzy, please have a look at mayo clinic you tube, it is very thorough of all information they giving you..if you still would like to kone more call the ann conroy trust (the nurse0 quite helpful there... best of luck you too, please could you post us how you are getting on after the surgery because mine is going to be in May..that is pretty quick though you just being diagnosed and you already got the appointment for the surgery..how lucky..I heard Walton is so excellent..the NS there are specialize in chiari..so not too worry lucky you...
Hi Rachelle, I had my op there too, you are in good hands!
your pre op is straight forward. They will take your height, weight, bloods etc and discuss any medications you are on etc....
I am sure your neurosurgeon has discussed the operation with you....
As for things to take in.....
lots of loose fitting pj's, nighties etc. I had button up ones as they are easier to change out of.
slippers, dressing gown, standard toiletries, lip balm, squash and your favourite tasty snacks. You will feel and probably will be quite sick afterwards, so you won't want to eat a great deal, but if and when you can, do try.
The meds will make you constipated, fact! So, take some decent laxatives with you or ask for some, you don't want to be straining! Trust me.....
you may like to read a book or magazine? I couldn't for a few weeks. But I did have music on my phone which helped to distract me from general noise on the ward.
My best advice is to be positive, do not over do it, rest and definitely do your neck exercises as soon as you can. As for your hair, don't worry about that, it will soon grow back and you can show off your scar to your friends!
Can I help with anything else?
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
Of course not, I hope this helps you too x
Hi Jon,
Thank you so much for your advice and kind words, I will make sure to take something entertaining in with me. Your response has calmed me, thank you for that
Best wishes x
Thank you I will definitely be having a look on there. I've heard only positive things about the Walton Centre so far, so I think I'm in good hands
Will keep you posted x
Thank you I will definitely be having a look on there. I've heard only positive things about the Walton Centre so far, so I think I'm in good hands
Will keep you posted x
Hi Hayley, so glad to hear that you had your op at the Walton Centre too!
Thank you for all of your advice, I've made up a nice list of things to take on from your recommendations
Can I ask how long is was until you were discharged home following your op? X
Hi Gill,
I'm so glad to hear that your daughter has responded well to her op and is on the mend. It's not letting me add you on FB for some reason, would love to see the pictures. Thank you for your response x
Hi Gill, sorry to jumping on your message to Rachel, I am glad for people to post a successful news...is she back studying?
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.
Your welcome....
i was home after a week, then in my own bed for a further 2 weeks. Felt rotten for a few months but kept making lots of small steps in the right direction.
It is a tough recovery, but, now I am on the other side, (10 months post op)
I consider myself very fortunate to have been able to have the surgery and improve my quality of life.
🙂
So wonderful how quickly she has recovered.
Positivity is key, everyone recovers differently.
Lovely to hear. 😃
So glad that you have recovered well.
Thank you for your responses x
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
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