Chiari pain increased!!!!!

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Can anybody give me any advice please I feel sometimes I'm going crazy with the pain I could honestly cry, it's taken over my life.

I had decompression surgery 4 weeks ago am wishing I hadn't had it due to my pain being far worse. I can't even turn my head or lift it up or down now the pressures to much. The excruciating headaches & constant pressure, the ringing in my right ear is coming back. It was like this before my op still have the symptoms my pain seems to be worse . Going to the toilet put pressure on my neck and sends me through the roof. I've started to stutter!!! The right side of my head is sore to touch but the nurse mentioned this could be nerve ending. I take morphine & oroamorph every 3 hours. Can anybody give me advice it would really be appreciated. X

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15 Replies

  • Posted

    I want you to know it does get better. I had my brain decompression 2 years ago. Though I live with awful pin everyday, the surgery recovery wasn't so bad. You really need to discuss some better medications for your recovery time. My surgeon made sure I was doped up pretty well and it helped tremendously. If using the bathroom is giving you lots of pain, maybe consider a catheter. I had mine in for awhile after my surgery. People are here for you and you will get through this!
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  • Posted

    Hi, I had decompression surgery in April 2015. After the surgery the pain was horrible.. I had new symptoms that I didn't have before the surgery. I went to see my Nero surgeon adamant something was wrong. Now almost a year on I have good days. I know all seems lost now and you have been through so much and ate still suffering. Maybe go back to your neurologist and explain the pain and ask for nortryptaline. It's heaped with my headaches no end. I still have headaches as before but good days. You have had major surgery and it can take months even years to settle down. The one thing I have learnt is surgery isn't a cure but in most cases can ease. Give yourself time to heal. Did he open your dura in the surgery. I know my surgeon said if my headaches are still bad he can operate again. I'm not sure I'd go through it again to be honest because as I said I have more symptoms now than before. I really hope you get some relief soon. Xx
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  • Posted

    Thanks for your reply I'm my own worst enemy I know it's not been long since I had my surgery I didn't have the dura open I'm scared to death to go through it all again. My surgeon did say if it didn't work this time that would be an option. I've suffered with constipation for years since I had my back injury I take lactose, senacotte, everyday n movicol 3x per week. I'm on oroamorph every 3 hours n zomodol every 12 hours. I take tomiripate for headaches which does work. I'm not getting my usual head aches in the top front of my head there in the back it feels like my heads locked in a vise n I'm being pocked with a cattle prod. I've had a few accidents not making it to the bathroom on time!!! This has never happened to me before when I need to wee now I have to go no waiting around. Do you think the dura operation would be beneficial and sort it all out better? I expected more relief not more pain. Thanks for your help and advice in really greatfull. X
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  • Posted

    HI Clareabella,

    I have you feel a little better than last week, how do you feel?

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    • Posted

      Hi there, thanks so much for asking 😀 I wish I could say I feel some change or feel better in myself but I don't. I wish I knew how exactly I would feel before I had the operation done. I'm so tired all the time, I still can hardly turn my neck left or right up or down. I try to push it sometimes but that just result in a blood curdling scream the pain makes me feel like I'm going to pass out . Head aches in the back of my neck feel like so much pressure. Hopefully I'm keeping everything crossed there's some relief before my appointment in July to see the specialist. Hope ur doing ok. ☺☺
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    • Posted

      mIND YOU, THE ns TOLD ME, THAT THE FIRST 4 WEEKS is the crucial thing and patints normally feel that they wished they never had surgery, but surely time will heal, you are on morphine, is that right?, have you done your op in the UK, what did your NS said to you?
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    • Posted

      Hi, I'm 2 years post op and I'm only just getting the odd good day. They told me it's normal. I still have the headaches and new symptoms. Ivbeen told if I can't cope he will go back in and do the duraplastie but I think I will pass on that. Knowing my luck it will get worse. I don't know if anyone else suffers with this but I can be sat or lay down and just for a second everything spins.. It's such a sickening feeling. I hope you start to see some improvements soon.. Get on your Dr's backs and tell them you need your meds altering and maybe others adding x
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    • Posted

      I'm on 60 mg morphine tablets twice per day n oroamorph I take every 3 hours ( I take tomiripate for headaches) my consultant said I'd feel worse before I'd start to feel better. That he was definitely right on. I've just been reading rachel02836 2 years!!! I'm so tired of being in pain. He did say if it didn't work they would do another op and go back in to the duraplasty this time! But would it be worth it? how diffrent is cranial decompression to duraplasty decompression 😵😵😵
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    • Posted

      I have no idea, obviously your NS will advice you better, perhaps you might like to go to have second opinion or better NS get to know around who is the best in your area, i was recommended by my 2nd NS to get this one..only ecause I can't put up with the pain anymore, ideally no drugs no surgery just healing and supplments, but all of the drugs didnt hel me except topiramate (helped a bit) I used to take 8 medicine, but its only topiramate now since I am taking supplements , as I read lots of you tube from naturapathic doctors and nutritionists..I also go for accupujtures and massages. Look I hope you will find the right NS and get better soon
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    • Posted

      That's how I feel, I'm sick of pain, I'm use to it too which isn't good.. Only sometimes it gets beyond bearable. I thought I'd see a huge difference with the surgery but with havingore symptoms than before not keen on them going back in x
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    • Posted

      sorry to jumpinng rachel, perhaps if you explain this to your health care professional they might hae a solution, wouldd that be different issue, you hae got to see them, lt them have a look, you do not know this time might be sorting you out, you have to be positive, do not suffer in silence..it is your health..do not forget chiari is not diseaae..it is structures..or do you know any good chiro or accupunturist?, I know every one is different but you must managing that pain..because if you giving up..you will feel even  worst..believe me..this condition used to made me  a house bound..but I thought I just did not want to be a victim..I want to be victorious..so I have to force my self..thinking about people around me (my family, friends) so i pick my self together (IT WAS REALLY HARD) but I kept trying, from one step - to two step.holdng on to the chairs and walls and crutches..then baby walk..then started going at the back garden..1 mnt- 2 mnts after 8 months..I am able to walk again..even though I am struggling now..I keep carry-on..I am giving up..hence i am going for the surgery..as I can't put up with the constant pain..I feel that if I leave it ay longer..my friends and family are suffering to see me in pain and i JUST WANT TO HAVE MY QUALITY OF LIFE BACK, YES every one different, they said that operation is not always curing the issue, but I AM GOING TO BE THE  1 who is going to have that successful operation, no matter what !!!, so I hope this message will help you lifting your spirit up ang come on girl get yourself sorted..THIS TIME...YOURS WILL BE A SUCCESSFUL ONE, BELIEVE ME..THOUGHT BECOME THING..I PROMISE YOU THAT!!
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    • Posted

      Rachel I completely agree and can totally sympathise with you. The pain becomes part of your life. I hope u find away to sort it out one way or another x
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    • Posted

      Thank you for your positivity.. Iv had acupuncture, but the day after I Was in agony. I have 6 slipped discs so messages put me off... I'm not giving up, in the grand scheme of things I'm one of the lucky ones. I have headaches spinal pain neck pain vision problems tinnitus ect ect. But I'm mobile and although I can't work I manage on the day to day x
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    • Posted

      I will definetely, yes keep going, and don't even think of going back to work until your body telling you to..I used to be like that..but at the end of the day..perhaps GOD wants to advice us to slow down and have a rest and think of ourself for once...when your body ready it will telling that..at the end of the day.yes, it is nice to have luxury thing in life..but when people die they do not take it with them..you only leave it to your love one..but you should not be worried about them as they will have their own luck..I resigned from my 84K pa job because of this condition..so in the end..health is more importnt than anything else..if it was not meant to be it was not meant to be ..another door will be opened for you.you do not know there must be another opportunity written for you that much better for you...i will keep you updated
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