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Recurrence of Chiari malformation

Posted , 60 users are following.

yeltzer
yeltzer

I had decompression 6 years ago for a servere malformation. Recently I have been getting similar symptoms to those I had before my operation . Can a malformation grow again after decompression? I would not like to go through the operation again.

3 likes, 194 replies

194 Replies

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  • DizzyDora
    DizzyDora yeltzer

    Posted

    Hi again Yeltzer, Yes I've fought the Doctors ever since they found I have sm/cm, I think most people have had to struggle. As regards the Doctor telling you were cured what a lot of rubbish. You can not be cured of Chiari unless they've found a way to make your skull get bigger or shrink your brain lol
    • yeltzer
      yeltzer DizzyDora

      Posted

      Thanks for the help. Actually they did shrink my brain. After they had done the " excavation" they pulled the tonsils up out of my spinal column and heat treated them to shrink back into my skull. Perhaps thats why I could not remember anything for three months. And why I wondered about the present symptoms.
    • gabby80509
      gabby80509 DizzyDora

      Posted

      I use to think i was cured also..i don't remember if my dr said it was permenant or not..but now almost 7 yrs post op..and symptoms are back..and this is so NOT the right time in my life as i went back to school after my big move to Israel...ugh. One thing i do notice that im not sure about...after my car accident in 1992..symptoms progressed over many yrs to the point id stop breathing..in 2007..then i had my surgery. My symptoms have only been a few months now..and already im having breathing issues...

    • b2wc97455
      b2wc97455 gabby80509

      Posted

      Hi there, sorry to hear about your news, not at the right time, are you going to your neurosurgeon again, just to make sure it is not going to get worse
    • gabby80509
      gabby80509 b2wc97455

      Posted

      Wish i could..he is in the US..i made aliyah to Israel.. i have to find a new dr here.. I will be seeing my family dr next wk.
    • gabby80509
      gabby80509 b2wc97455

      Posted

      I have to wait to get my file from my US neurosurgeon first. The drs here won't see me till then cause they need to know my history and all that's been done.

  • DizzyDora
    DizzyDora yeltzer

    Posted

    Yes some surgeons do shrink the tonsils that is true, but they can't pull the tonsils up to fit into the brain. It isn't possible that is why the herniation begins in the first place because the skull is to big to hold the Hindbrain. When we have the Decompression, the surgeon first open us up at the back of our heads.  Rather than go into all the gory details they remove a couple of our vertibra and also remove some of the base of our skulls to make room for the base of our brains. So the brain cannot be pushed or pulled back into our skulls, once we have Chiari we always have it, there is no cure. Maybe it might be worth printing something from the internet about Chiari to educate your Doctor. Having said that it should be your Doctors responsabilty to educate themseves about it as have a patient (you) with the condition!

    Take care,

    Dizzy

    • yeltzer
      yeltzer DizzyDora

      Posted

      When they apply the heat doesn't it quarterize the tonsils thus stopping tem growing again? That was what I was led to believe. 
    • gabby80509
      gabby80509 DizzyDora

      Posted

      I am so glad i found this group. I am almost 7 yrs post decompression and C1 laminectomy..and im having symptoms again. Started with complete exhaustion (which never went away in the first place)..headaches..choking some when eating..now back to visual issues..and dizzy..nausea..etc. I had an amazing neurosurgeon..but i moved from the US to Israel..and i have no clue what dr to see here. Plus im in school..and i cant afford to lose out..i have only 8 months left to finish. I thought i was cured so to speak once most of the symptoms went away. I knew in the back of my mind (no pun intended) that i may require the surgery again. What i didnt know was that it would actually happen to me. Im frustrated..scared and missing my old support group and not sure what to do. I did contact my old neurosurgeon last wk gor my file and recommendations. Problem is my student insurance doesnt cover prexisting conditions. I have 8 months to go. What can i do to ease the symptoms for 8 months..help pls!!!
    • helen11122
      helen11122 gabby80509

      Posted

      Oh gabby I wouldn't know how to advise you on this hun. Apart from you should seek medical help. 8 months is a long time to go. Would your previous neurosurgeon be able to recommend something to help you get through the next 8 month. I'm in the UK and haven't experienced anything like your going through. I do hope someone can help you hun x
    • gabby80509
      gabby80509 helen11122

      Posted

      I am waiting for him to get back to me Monday. I pray he can suggest a dr here..or something. Ive tried to ignore all the symptoms thinking i was just tired..or stressed. Then it dawned on me...could this chiari be back ..(not like its ever gone)
    • helen11122
      helen11122 gabby80509

      Posted

      Could be a combination of everything gabby, I'm like you had operation and symptoms are less, but sometimes feel like there coming back, you have to look after yourself hun, hope you get sorted, keep in touch and let us know how you get on. X
    • ariana85519
      ariana85519 gabby80509

      Posted

      So I am 10 years post decompression. I also had a syringomelia. I just found out a week ago that if you've had Chiari, especially syringomelia, you should receive follow-up scans as the relapse rate can be as high as 14-20%. I was told 10 years ago by another surgeon I was cured and only needed a MRI 1 year after surgery. Low and behold, here I am with all the same symptoms just on the opposite side -_- trust your gut. I am a pharmacist now and always tell my patients that you know your own body best. Go get checked out and take the steps necessary to take care of yourself. If your symptoms aren't bad you might be able to wait for the actual surgery, at least that's what the new neurosurgeon has told me. Going for a MRI tomorrow to see how bad my damage is. Good luck!
    • helen11122
      helen11122 ariana85519

      Posted

      Hi ariana, I'm just under 2yrs since surgery. I'm visiting the chiari nurse who looked after me and has always been there at the end of the phone if I needed to ask any questions. I havnt had any following up scans, but I'm getting few strange symptoms like tightness round my sides of my head and some bad pressure again, but not on the scale it was. The dizziness is still with me and makes me feel bit yuk. So she's ask to see me on Tues even though I'm discharged. Let us know how your scans go.
    • hayleybell
      hayleybell helen11122

      Posted

      Hi Helen, just butting in here- hope you don't mind?....I am 15 moths post op, no patch, dura opened, craniectomy & laminectomy c1 &c2 & cauterised tonsills.....I have been doing really well, but I do struggle enormously when the weather changes & the barometric pressure changes. I find myself feeling awful & have to lie down & rest.

      i am exhausted a lot again lately & have been getting tight feelings around the back & sides of my head. And a stiffness....Also generally strange feelings around the scar site.The pressure is not the same as pre op but something just does not feel right!

      i too have had an amazing nurse, my follow up is not until Dec....

      how are you feeling lately? Do you think it is getting worse?

      hope your on the mend....

    • helen11122
      helen11122 hayleybell

      Posted

      Hi hayley, I'm not too bad lately, just had hols in Spain, but I'm exhausted as ate too much and had too many late nights. Haha

      Apart from the usual head aches and because some nights where very loud with entertainment on I wasn't too bad. I'm still waiting for consultant to decide if I need another scan. I'm no worse though.

    • JessTurs
      JessTurs ariana85519

      Posted

      Hi, I am just finding this site and am wondering how you are making out.I am almost 8 years post op and all of my privious symtoms are creeping back. Some have been for years others, like neck pain, are back in full force.  I just wanted to see how you are doing and if you are curretnly being treated. Wishing you a pain free day!
    • helen11122
      helen11122 hayleybell

      Posted

      Hi just wondering how you are doing.. Had scan a while ago and although I'm getting headaches and few really bad ones, if I've been on phone or reading the pressure builds up and I have to walk round a bit.. Memory getting terrible.. The consultant said I still have fair amount of room where they did decompression. and he can't do anything else at this point, basically it's just get on with it! I'm glad nothing wrong but still dicks! Lol

    • helen11122
      helen11122

      Posted

      Sorry meant to say sucks not dicks haha
    • hayleybell
      hayleybell helen11122

      Posted

      Hi Helen. I am doing well thanks-( despite 2 days in bed this wkend  because of pain behind my eyes. ) I find weather pressure change effects me, but next week is my 2 year op anniversary & I have been very lucky & have no regrets of having my op. My quality of life is much better now.

      My memory was really bad, but the more I do to exercise it & use my memory the better it is getting! I still get very tired tho.....

      Try to feel reassured that it all looks ok on your scan. I think living with chiari after the op (scans showing all is good) we have to take the rough with the smooth days. 

      Be gentle with yourself, rest when you must & take care 😌

    • helen11122
      helen11122 hayleybell

      Posted

      Thank you hayley, I'm so pleased your doing ok, I must admit sometimes I forget I'm getting older too, and with prolapse bladder and bulging disc in back an few other niggles I'm not doing too bad.. I'm still working 3hrs domestic work in hospital too, one wk on and one off. Yes I get tired too, and do feel better when weather is nicer. Still have weird sensations on left side of head since op.. My neck gets a bit stiff so have to keep eye on it as causes headaches. Keep well hayley xxx

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