1. Community
  2. Brain and nerves
  3. Chiari Malformation

After Surgery

Posted , 12 users are following.

mandy85433
mandy85433

Hi there, 

I am posting on behalf of my husband as he is not well enough to sit and type. 

He has surgery on Oct 26th for Chiari type 1. The first week after surgery he did really well but week 2 was terrbile. He was suffering an increase of headaches, increase of nauseous and just not able to move around well. Since Friday of last week he has been sleeping ALLOT, for the most part he is only up 4 - 5 hours a day other then that he is in bed sleeping. 

Is this normally for this recovery and how long before they start to feel better. 

He states he feels like he has a concussion as everytime he moves he gets an increase of pain in the head but if he stays still in a quiet room he is fine with no pain. 

2 likes, 50 replies

50 Replies

Next
  • helen11122
    helen11122 mandy85433

    Posted

    Hi mandy i had decompression surgery Aug 2014

    I couldn't do anything for few months due to feeling sick and dizzy. It was a very slow process

    I still use antisickness tablets now and again. I still get some pressure head ache but not as bad as it was. Everyone heals different some people are up and about sooner but felt Ill. iIwas flat on my back for weeks, i hope he feels better soon.

    • b2wc97455
      b2wc97455 helen11122

      Posted

      Hi Helen, it is over a year now after your operation, its nearly christmas, how are you, are you looking forward for Christmas?, are you going to be k/, did you glad you have surgery/, PLEASE SHARE WITH US PLEASE..tHANKS
    • helen11122
      helen11122 b2wc97455

      Posted

      I have different things to deal with after surgery than I did before, such as dizziness and bit nausea now and again. My head is numb on one side too. But the pressure has eased from what it was. But i feel l have improved, and yes it was a ruff recovery but the operation was to prevent symptoms getting worse. My husband says I'm a happier person than the year before the operation. I'm coming up to 61yrs so I don't recover as quickly as younger person. It's hard to advise as anyone who has this chiari seems different.
  • hayleybell
    hayleybell mandy85433

    Posted

    Hi

    I had surgery in May & can assure you that recovery is pretty awful.

    Everyone recovers differently and have good and bad days that go on and on.....

    I couldn't roll from one side to the other when in bed, the pain was horrific and I was very very sick.

    If you do have any concerns speak to your contact in hospital.

    Keep an eye on your husbands temperature, if he becomes difficult to wake and appears confused he needs to be seen immediately. (This is what I was advised)

    He is still in the very early days, my neurosurgeon said I will feel like sh*t for 3 months, he was right! 

    Your husband has had serious surgery, the body takes a while to adjust to everything, baring in mind the anaesthetic takes a long time to get out of the system. 

    I hope he starts to feel better soon, any questions, just ask, lots of people here to help.

    Take care now...

    H

    • b2wc97455
      b2wc97455 hayleybell

      Posted

      HI hAYLEYBELL, i JUST LIKE TO KNOW HOW ARE YOU DOING, AS I AM TRYING TO FIND OUT AS MANY PEOPLE WHO ALREADY HAD SURGERY HOW THEY ARE GETTING ON, AS I AM GOING TO HAVE IT SOON SO AT LEAST I KNOW WHAT TO EXPECT..ARE YOU LOOKING FORWARD FOR CHRISTMAS, DID YOU GLAD YOU HAVD YOUR OP? PLEASE SHARE WITH US?
    • hayleybell
      hayleybell b2wc97455

      Posted

      Hi

      thanks for your message.

      I am 6 months post op and I am very lucky in that I am doing really well.

      my symptoms have pretty much all gone. 

      I had a tough time initially after surgery, but, am now feeling well & am looking forward to Christmas with my 3 beautiful children, wonderful husband & family. 

      When do you have surgery?

    • b2wc97455
      b2wc97455 hayleybell

      Posted

      Hi Hayleybell,

      I am glad your op successful, I am hoping that I am going to do well also. I am eeing my second NS he is going to examining me and also explain about the pro and ontra of the OP, now I am in this web and talk to all of you, I decided that I am going to have an OP as before I was really unsure about it..AS the 1st NS scared me to death...so any suggestion what should i ask when I see him, i am seeing him on the 14th of Jan - but I definately would like him to do my op, as he done the op nearly each day he is the best one in the UK and he is the head of brain 7 spine organisation in the Uk as well as he is very nice and understand patient who are suffering as chiarian - he is 3 hours from where I live though, but I would rather do that...what would you reckon?

    • hayleybell
      hayleybell b2wc97455

      Posted

      My NS was 3 hours away, a small price to pay for seeing a NS with excellent  decompression outcomes.

      Everyone is different and recovers differently, as much as having varied and different symptoms to begin with. You must make the decision based on what your needs are and not on what people say on these forums. The important thing to remember is to be positive, to have any 'corrective' surgery like this, I think is amazing. The surgery should help your current symptoms, mainly headaches, it is not a cure, but hopefully will stop the progression of the Chiari.

      Ask the NS about any concerns, take a list with you so you don't forget anything!

      Good luck, be positive!

    • b2wc97455
      b2wc97455 hayleybell

      Posted

      thank you Hayey, I will keep that in mind , yes I have several questions and put on my notes..so quite anxious and nervous as well, i will keep you all update..
    • helen11122
      helen11122 b2wc97455

      Posted

      Good luck and hope it isn't too long to wait for operation. After hearing about different people's symptoms I think I had operation at right time before I got worse. Rest is important to your recovery too, so just because you start to feel better, don't do what I did and tried run before I could walk! Lol

      I did loose my speech and couldn't eat lumpy food, but it was because of the nerves and came back after a week . I wasn't aware of this and was really panicking. But as I said in one post on here I have a little job now, and dealing with chiari best I can. Wish you well. X

    • b2wc97455
      b2wc97455 helen11122

      Posted

      THANK YOU Helen, at least I know what to expect and if i am panicky after surgery i will contact you through this website - unless you don't mind if I contact you via email
    • helen11122
      helen11122 b2wc97455

      Posted

      No problem at all, I wish I had known about this Web sight when I was having operation, as it's scary enough but I think to be able to have contact with people who know what your going through helps a lot. The discussions come into my email box so feel free to ask or just let off steam any time you like. And I'm sure if I don't have an answer someone else may pick up on it too, also your experience will probably help someone else too. Xx
    • b2wc97455
      b2wc97455 helen11122

      Posted

      Ok, Helen,thank you so much for that, I just can't wait to have the op, on the other hand worry as well for recovery period - but i will update every one after
    • Maxcyst
      Maxcyst hayleybell

      Posted

      Hi Hayley,

      I am 3 weeks post op but still have a pressure headache on the left side of my head. It's also really numb and painful to touch too. My left arm and leg are also quite numb. Do you think these symptoms will go? Did you have any symptoms that got worse before they got better? Just so hope things improve for me.

      Thanks. 😊

    • b2wc97455
      b2wc97455 Maxcyst

      Posted

      Hi Pheeb, I am on 4 months post surgery, I still have pain on my spine, back right arm, but apparently its normal, it take at least 7 - 8 months healing, I was terrible for the first 2 months, pressure of the head and all, but it will go away..make sure you drink plenty of water , it could be the cuase of medication or anastetic ..but it will get better each day,do not do too much yet, not even lifting anything more than 1 kg, (that's was my neurosurgeon advice me. Try to walk each day (no more then 100 mts) then extend it, (very gentle walk)

    • Maxcyst
      Maxcyst b2wc97455

      Posted

      Thank you so much for your reply. It's great to talk to people like you that have been through this.

      I think I just need to be more patient and hope that the symptoms will change or go completely. I do so hope your symptoms improve too. Keep me posted on your progress. Thanks for your support. 😊

    • helen11122
      helen11122 Maxcyst

      Posted

      Hi, just thought would let you know life does get better, it's 2yrs since my decompression surgery. It was awful recovery I was sick and dizzy for months after, thought I was going to be an invalid for life, it has got better to where I'm working part time as a domestic, some days still dizzy and feel off. I'm having a mri scan on 26th September to see if anything going on, as my consultant says I shouldn't be on same med for dizziness since op. Said could be down to damage to nerves ect after op. But it will put my mind at rest if find nothing else. Nurse said I'm unlucky as most feel better by now. But i can still get on with life to certain extent, just have to make sure I don't over do it. It does take time but don't rush things x

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.