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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

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  • DizzyDora
    DizzyDora yeltzer

    Posted

    Hi Yeltzer, I hear what you are saying, it's a shame people are continually being told they are cured. I think maybe they are confused, but if you think about it logically it's impossible to be cured. Our base of our brains (tonsils, not to be confused with the tonsils in our throats) are sitting in our neck cavity, the object of a decompression is to make more room for the base of our brain and also to allow free flo of our CF. That is where the confusion comes in, many consider that because of the op we are then *cured*, not so! For some the op quite often stops the symptoms, again som may think we're *cured* again not so! Many don't lose the symptoms! some may have worsening symptoms. Our brain still sits in our neck cavity because

    our skulls are too small for our brain. So there is no cure, the decompression is only to slow down the progression of the condition, we will always have Chiari. The problem lies with the fact that not a lot is know about Chiari, it is a very rare condition. We need a lot more research into the condition, it is getting better but we still have a long way to go. I'm glad to be of some help. I hope your having as pain free a time as possible, I'm not too bad t the moment, I seem to be slowly coming out of a bad patch. Take care, Marina.

  • Keko
    Keko yeltzer

    Posted

    Chiari malformation is a deformity of the skull, not the brain. the cerebellum herniates downward because of the misshaped skull. 

    IF you had a bone only decompression, then there is a very big possibility your brain could have slid back down to where it was before your operation.

    You should most definitely seek an MRI and get a copy of your images.

    • DizzyDora
      DizzyDora Keko

      Posted

      Exactly Keko, that's why I get so cross when doctors continually tell patients that they are cured!! I have literally found out today that I am indeed haveing problems again but cannot go through another op because I have other serious health complications. I have an urgent referral to see a Cardiologist. I've been going on about being not listened to thinking all sorts like it's because of my age and Neuros not caring! I just wish they would have told me the truth from the start!
    • Keko
      Keko DizzyDora

      Posted

      Thanks for backing me up Dizzy. Dr's ignorance really riffles my feathers. WE gotta do what we can to advocate for ourselves, school our doctors, and help out our fellow chiari brothers and sisters.

      I run a support group on FB for all chiarians seeking help and support.

  • emza1910
    emza1910 yeltzer

    Posted

    Hi

    I've jus come across this site n your comments and wanted to share my story even more so as doctor flint is my surgeon n of whom had the pleasure of doing my decompression in may 2012. 8 yes it took me to find a decent doctor that actually listened to him and admitted he wasn't trained in this area. He referred me onto Dr flint who is a specialist in cm. He was great n well prepared for my questions. He gave me the answers I needed and on my second appointment surgery was offered. Though cancelled four times before actually having it cus no beds on the ward. Over 3 years on and I too am suffering again but his time in a different sense I've suffered from fits from the start of my condition but hey hav took on a hole new approach, my pain seems constant n I've got like a fuzzy kinda head where I'm in one place and the world isn't moving at my pace. The lighting in general is too much, my body shakes whenever I close my eyes and my whole body aches. As well as more fits too. The gp isn't happy and has referred me back to doctor flint. So I'm on jus waitin list. Jus the thought of it happening all over again I couldn't go through surgery again or even a lumbar puncture I had in July 2013. Ive always suffered with the pressure pain even after surgery, everything that made me me gave me pain. It's hard. But I've tried and now it's like it's happening all over again. Surely we are due a rest from the pain.

  • sarah62714
    sarah62714 yeltzer

    Posted

    at age 40 i went to the doctor because i had severe pain in my back. to make a long story short i had to have surgery for chiari malformation. i really had no clue of what they were talking about , when i met with the surgeon he told me i had arnold chiari malformation . they didnt educate me on anything i didnt know what they were talking about or what to even expect. after the surgery the pain and symptoms were horrible. i literally was in more pain, like my head literally was getting hit by a 2x4. doctors kept asking me about headaches. the funny this is i never really had bad headaches or migranes. i on occassion had headaches but

    nothing i would report to a doctor. the pain is all in my back on just my left side. 

    to make a long story short i still am having a hard time understanding why and how i got this chiari malformation. the doctor said i must of been born with it because i was never in a bad accident with head trauma. i am in the united states in indiana in a area where the health field is suppose to be extremely good. i am very frustated because the only answer the doctors will say is " you have to understand you have a syrinx almost the whole length of your spines" the only thing i understand is that they did the decompression to ease the pain. i honestly dont feel any different and it will be 2 years in october that i had the surgery. i have asked if this malformation can grow back and i cant get a clear answer, as i really dont want to go through that surgery again. you guys seem to be more educated on this, not that i havent tried i just dont understand it. any help would be appreciated because there really is no one i can talk to because nobody understand my confussion or what i am talking about.

    • melanieheather
      melanieheather sarah62714

      Posted

      I'm from Chicago il I had my surgery done at Illinois Masonic where some of the best actors are supposed to be and I had it March 17th 2015 and here I am a year and some months later and I am declining very quickly I'm even getting to the point where my legs are slipping out from underneath me with bad back pain and such bad pressure headaches that I had to go to Northwestern Hospital a couple days ago and they gave me what they call a migraine cocktail which was Ritalin Benadryl and 10 milligrams of Norco and they wanted me to stay but I wanted to go home but they made me an appointment for July 15th 4 neurologist two do an MRI and see what's going on because my back is now going out and my hand shake by there self and the headaches get really bad I also get a patch in the back of my head full of liquid so I don't think it's too good but just like you I was told that I was cured and it's really messed up because I lost a lot and they're trying all these different medicines on me when they should have just told the truth and told me that it would never be the same again I wish they just would have told the truth and you're right with us being in the United States and all these Highly Educated highly paid doctors you would think they would be more educated in every kind of Department of the head the brain the the skull but I've come past many people in most of the emergency rooms in Chicago that have no idea what Arnold Chiari is and that's sad even when I was making the appointment for them their own neurologist that I'm about to see I told her I have Arnold Chiari malformation type 1 and 2 and she told me if I could spell it for her because she's never heard of it so here we go again with them not knowing but hopefully the neurologist does

    • helen11122
      helen11122 melanieheather

      Posted

      Hi Melanie I really feel for you, I'm 20months since my op, I did know it was only to prevent symptoms getting worse, but there have been a few on this sight been told they are cured. I'm chiari 1, and I know chiari 2 is worse, it seems no medical specialist are very well educated in this field. It's a struggle for some to even get a diagnosis. I pray you get sorted soon x

    • melanieheather
      melanieheather helen11122

      Posted

      Thank you so much helen11122 I'm happy I have this site to help me along and well when I can see properly and not with the double or blurry or dizzy vision I love this sight thank u every one on here it's a up lifting site

    • sof5med
      sof5med melanieheather

      Posted

      Hi Melanieheather I am from Chicago and have had bad luck with docs. I've been to Loyola, Northwestern, Alexian Brothers, and Rush. I've have had two brain decompressions and just recently been told I have cerebellum slumping. One of the two surgeons cut too much bone. Right now I'm gonna try University of Chicago. Hopefully they have good chiari specialists there. It's so sad to see doctors that think they know a lot about Chiari and put our lives on their hands. I hope you found a good neurologist/neurosurgeon. Good luck.

    • Proudgrandmaof9
      Proudgrandmaof9 sarah62714

      Posted

      Hi Sarah

      I too am from Indiana, Kokomo to be exact. I had my first surgery in Georgia and have been off finding a NS here that is knowledgeable on CM. I'm sorry you haven't had any luck finding one. I am going to start looking bcs I can't stand it anymore longer. Even though it did give me some relief for a couple yrs it has gotten worse since. In fact I would say it's worse than before my first surgery. My first surgery was in January of 2010. I understand your frustrations. I can't believe these drs haven't educated themselves on CM. It upsets me when I go to either a new Dr or specialist for something or I am talking to a nurse and they have never even heard of CM and if they did, they say; "Oh I've heard of that but never really knew what it really is)". I mean really. You are in the medical field and you have heard of it but not educated yourself on it Wow! You would think that if they hear of a new illness they would do some dang research. As you can tell I'm frustrated as well and that is one of the reasons I have waited so long to go back to the Dr about it. Searching for a new Dr that has even HEARD of it is frustrating. Let alone finding one that specializes in it and really knows what they are talking about and doing. Like I said; I live in Kokomo and am getting ready to begin my search of a new Dr for it. Hoping to AT LEAST find one in Indy. Of course would love one here in Kokomo but I'm never that lucky. Lol. I hope you have found a good one and you are feeling much better.

    • blackhawks3310
      blackhawks3310 sof5med

      Posted

      Hi sof5med,

      I am 33yrs old and also from Chicago, Orland Park to be exact. I was diagnosed with CM1 about 3 months ago and just had the posterior decompression surgery with a dural patch (they used Dural patch for

       My own tissue) on May 8, 2018 at Northwestern University (I could privately send u my neurosurgeons name if u want). I am a teacher, so I took off the last month of work to have the surgery and use the summer to take it easy. I don’t know how I am really supposed to feel because I’m not even a month post op, but I am scared to death to be honest. I have this fear nothing will get better, especially after reading everything on here....

      What part of Chicago are you from? 

      I ask see that Melanieheather is from Chicago too....it’s scary that I saw northwestern on your list and that you’re still suffering....

    • blackhawks3310
      blackhawks3310 melanieheather

      Posted

      Hi Melanieheather,

      How are you feeling? I just had a posterior decompression with dura patch on May 8 2018 at Northwestern....I’m super nervous and scared about how I will end up and what my results will be like. I am still a less than a month post op but reading about how lots of people don’t get relief or get worse has me really nervous. I gave myself 3 months to recover from this surgery. I am a teacher and took the last month of work off and I have the 2 months of summer to recoup before the start of next school year...I hope I’ll be feeling good by then...I guess only time will tell

    • blackhawks3310
      blackhawks3310

      Posted

      I forgot to ask, who did your surgery at Northwestern and what exact surgery did u have and do u have syrinx? 
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