chest infection awaiting surgery for chiari malformation

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Have developed a chest infection second amount of antibiotics but when i cough the pain that i suffer in my brain is the pits i feel as though someoone is stopping the blood going to my brain and the pain that i have is very acute i can count up to 15 to 18 seconds then it returns to normal pleas has anybody gone through this .

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  • Posted

    Dear Sue,

    Do not worry, I was just like y9ou until 2 months ago 9just had decompression) I was passed out each time I sneeze, coughing, even go to number 2, but try to ask your doctor/neurologist to get you book as soon as possible. The minute I woke up from surgery, all the pain gone - I was able to walk and laugh, get the life back. I did not want to have surgery at first, but the pain just so excruciated.  So I then agreed what my neurologist advice me to do. Just be positive, do not do any lifting even more than 1 kgs, not even putting the shopping fro the counter to your trollly or lifting from car to home - let your family help you. But I am the luckiest one - my surgery seems to be the successful one. Where are you base?

    If you are in the UK try to contact th enurse at Ann Controy Trust, they are very helpful.

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    • Posted

      UHW cardiff but having read a lot of the comments i am very nervous of the surgery how did you manage the pain afterwards as they say its awfull i dont know if to carry on the way i am please  reply my dr said he would give me something to help with all the sickness and he said that i would be on nacotics i am more than nervouse did they manage your pain i am a baby i was diagnosed at thirty one with BHI and the headaches where awfull and my blind spot was taking over my vision i got over that and they told me then that i had this malformation but nothing needed doing about it last yr i had a mini stroke and after a mri was sent to to nuro which told me that i needed decompresion surgery but because of all my problems he has given me another appointment for me to consider it he said if i didnt go though with it the outcome would be that i might loose my balance and vision can you help
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    • Posted

      Well, everyone is different, but from what you said here, you have siilar issue as mine, your neuro was right, I lost my balance, my legs and arms were always needling pain, in the end I was housebound....hence I agreed to have decompression, my staying at the hospital suppose to last for 1 week, but I ended up a month, but Mr Flint my surgeon had informed me on post surgery that a month of the post operation will like hell..and it was ..just what he said...it was horrendous...but I still prefered it than not having surgery. For me surgery is a GOD SENT..I  dont think I can live with that..I can remember how I used to cry when even putting off/on my clothes (dressing up) it was a night mare, I am glad its all over now, and I am so positive that mine is never ever come back again. Hence I waited for soooooo looooonnnnngggg to be put on Mr Flint list, he is the UK Chiari specialist and he has hundreds - hundreds decompression, he did not put dura neither to reduce complication and infection , he said. Him and the team were so excellent!!!, try to be reffered to QE Elisabeth Hospital with Mr Flint if you can. I was researching and talk to Ann Conroy Trust and got to know from there. Listen to your Neurologist, get it done..you will be laughing after..I am on my 2 months recovery now, I still  very careful of what I am doing, myhusband would not even let me lifting/carry anything at alll, as he spoke to Mr Flint directly on ''DONT'' and DO after decompression, he wont even let me drive.. after 5 months he sais, I should start doing something..but as for now..streching and Tai Chi is helping me recovering. I am drug Free, but I keep taking magnesium oil each night and also cod liver oil as well as antioxidant supplement/s.

      Please act as ap, your health is so important...!!! I WISH YOU GOOD LUCK

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    • Posted

      I had surgery June 2 so I'm two months post. I didn't have that much pain and had loads of hydrocodone for it. In the hospital, they gave me dicotin with one of those push-button dispensers and I had fentanyl in one of my many IV lines. Worst thing for me was the nausea which occurs because of being on painkillers. If you have just had surgery, then have dry heaves, that can be really painful. So I had a prescription for nausea (fortran). The ice packs that are soft and supple are great to put on the back of your neck.  The only other problem I had was after a couple days they take out your foley catheter and want you to pee. Had alot of trouble getting that to start back up. But all is good now.  I was able to go on a plane to a wedding and vacation after 3 weeks!! 

      The important thing to do is use your breathing apparatus pre-surgery to build up your lungs. (The hospital give it to you and you inhale as much air as you can.) After surgery I had a walker to get around, but I only used it for a couple of weeks. 

      I would get the surgery again if needed. I'd rather fix things!!! Because it's not going to get better unless they relieve the pressure on your brain. 

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  • Posted

    It sounds like you are having a terrible time. I have syringomyelia which imeans a cyst in the spinal cord, the constant pain is very similar.

    I guess you are on lots of drugs but they don't touch severe pain. Learning to live with it is so so hard. You do reach a degree of acceptance in the end but it makes life so very difficult.

    Totapendol helps a bit but holistic things like cranial massage might be worth a go. Are your GP and consultant sympathetic?

    Wish I could send you a magic wand! The very best of luck for your surgery and the future. Do take care of yourself.

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  • Posted

    Hey sueaber,

    my head  pain before decompression was the same. First, the pain would hit every 3 minutes. Then gradually it would progress to acute pain every 20 seconds and this would go on for 3 days or more. I'd end up banging my head on the wall it got so bad. 3 days of constant pain left me totally exhausted. Decompression takes away most of it, I still get the pain but not so often and not so intense. I also have Syringomyelia.

    My advice would be to go for the surgery, everyones recovery is different. My decompression was 22 years ago and I was a big baby too but I'm so glad I had it done.

     

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