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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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  • rebecca54505
    rebecca54505 yeltzer

    Posted

    I'm having the same issues. I've seen a pain management doctor that my neurosurgeon referred me to and the injections helped for the first 6 months but this go around they have failed. I'm in unbelievable pain I'm stuck in bed ice pack on and no relief. I am making a appointment to go back to my neurosurgeon and see if it's returned. Where my insicion is I have two knots pop up and the incision it's self has swelled up causing more pain. I'm 2 years post op was hopin the surgery would make the symptoms stay away for a while.
    • b2wc97455
      b2wc97455 rebecca54505

      Posted

      Dear Rebecca, I am seeing my neurologist sooon, would you mind if I ASK HIM what would he do if he has a patient such as yours without mentioning your name, so that I CAN come back to you? perhaps you can have idea then?, so if that injection is helping..can you help another injection..what kind of injection is that?, IS IT EPIDURAL OR BOTOX?
    • rebecca54505
      rebecca54505 b2wc97455

      Posted

      That would be great. I'm currently taking a nerve block steroid. I had a allergic reaction to them this go around and I was put on more steroids. Which in return have caused my symptoms to return and fever. The procedure helps for the most part I'm not sure why my brain thinks it needs more room since it only works half the time anyways lol. I took a memory test yesterday of which I failed I still have alot of my symptoms from before headaches, blurry vision, numbness in my arms and fingers. But I hope you get the relief you need. I've seen where the procedure has helped many many people but there are alot who have had it and it's only helped for a short term.
  • Twitch422004
    Twitch422004 yeltzer

    Posted

    Hi I'm jeff, I'm now 29 years old.. I was diagnosed with ACM type 2 when I was 16, I had a lot of symptoms like walking into walls, bad balance, headache, spearheaded and vision problems

    • Twitch422004
      Twitch422004

      Posted

      Swallowing problems.. so I saw doctors neurologist and had decompression surgery, they removed part of the first n second vertibrae, drained sone fluid around the brain and closed me back up.. the surgeon and my doctors did tell me that this is not a cure, that I would never be 100% every again and that I would need another surgery later on in life, we'll after having symptoms all over again when I turned 21 I had anther surgery, they did the same thing all over again but this time it was way worse.. now that I'm 29 I'm again having symptoms again, balance is getting worse, headaches, trouble sleeping, swallowing problems, sleep apnea, lower spine is deteriorating..I'm waiting to get into to see a neurologist again..

  • ana50347
    ana50347 yeltzer

    Posted

    I only had my surgery almost a year ago and I feel worse. Ive had MRI done saying surgery went well but what its well when this disease has no cure. When they don't know what's the true case of chiari of what comes after. I live in a nightmare everyday and night. Can't go to an er. They have no clue what chiari is or what to do when u go and say your brain hurts. We need answers and awareness. One year after surgery and feel like I'm dying little by little.

  • joshua93642
    joshua93642 yeltzer

    Posted

    I am 23 n i had my surgery when u was 17 n i still have problems but worser my head hurt like nails r being shot into the back of it I can swallow pills n when I eat I some time choke n the back of my mouth gets sore n my back at the bottom hurts all the time my neck at times feels numb n finger tips get tingly muscle spaz out a lot n when I was really sick I had gotten Parexlis as in parts of my body gets stuck n tht happening to my hands
    • melanieheather
      melanieheather joshua93642

      Posted

      I am right now sitting here crying my eyes out cause the pressure in the back my head to my ear like hot pokers in them and my Hans clamp,on everything and they moved my neurologist appointment I'm a pretty understanding person but if they felt what I and others like u go through we would be helpp3d a little faster I think I would hope any way

    • b2wc97455
      b2wc97455 joshua93642

      Posted

      Hi Joshua, I feel for you that  was how I felt before my decompression, it was 2 months ago tomorrow, I still waiting for my post operation, I was blessed that I am the lucky one, even though my stay at the hospital was longer than we expected, however GOW WILLING I feel so fantastic, I have got my life back, as prior to that decompression I just felt like you but I always positive that there is a light at the end of the tunnel, please go to A&E let the neurologist see you..tht was I have done, you have to try to get help as soon as possible..you do not want that condition to get worse..the sooner you get that check you will get better, when I read on several group ..some said that CM can come back and patients have more than one decompression.

      PLEASE ..do not suffer with pain..it is yur health

    • b2wc97455
      b2wc97455 melanieheather

      Posted

      Hi Melanie i feel how you feel, is that posible for you to go to A&E..just so you can be to heard, this condition is just unbelievable ...you need to be bold and seek help as soon as possible, dont suffer in silince ..I wish you Good Luck. Have you ever tried to rub with magnesium oil eadh night..?, I used to do that priod my surgry 2 months ago..as well take supplement that high in antioxydant and ORAC I bought it from my local health shop, I change my diet as well, it seems that help a lots (eating so much fish) fish oil.. anything that good for the brain and circulation, try to drink 2 lts of water at least a day..that seems helped me (a bit), otherwise, you just have to get to be seen as soon as possible, if they are a bit difficult, if you are in the UK, you can report this to PALS, but first get in touch with your own doctor (GP)..GOD LUCK

  • Linleel
    Linleel yeltzer

    Posted

    Chiari can reoccur depending on what your first surgery did. It doesn't go away, the surgery just makes the space larger. Depends on your symptoms. Most doctors don't know much about Chiari and don't have many patients who have Chiari. The best thing to do is Research and Read up on the condition so you know as much as your doctor. Get the hospital to give you copies of your MRI's and other test results. I can get all my test results online and then if I don't know what they are saying- look it up.

    Here's what I went through:

    1. Oct. 2015- I told my GP doctor I needed a brain MRI because I had dizziness, disorientation, other symptoms that I couldn't explain. So they sent me to get one. (It's good to be assertive with doctors, especially residents!!)

    2. After MRI results, got set up with Neurosurgeon.

    3. Neurosurgeon had minimal experience with Chiari and didn't think my symptoms were severe enough- sent me to a Neurologist.

    4. Neurologist had me go through a load of tests to see if I had some other disease: lumbar puncture, tilt table test, balance test, visual screening, Cat scan of arterial flow. After all these came out negative, finally referred me to different Neurosurgeon to have cisternogram. 

    5. Viewed results of MRI cisternogram online and result was complete blockage of CSF on right side. Tonsil 8 cm. 

    6. Went in for consult with Dr. and he suggested surgery due to CSF blockage. 

    7. Had surgery June 2. 

    I had a dural patch put on. So I'm guessing that is because of the blockage of CSF flow. They had to go in and unblock it. 

    In my experience, doctors don't return phone calls, assistants are rude and unhelpful so PESTER THE HECK out of them!!! Pester, pester, pester until they call you back. My doctor's assistant never called me back- I CALLED HER!! I pushed to get the appt. to have the MRI Celle done. I Called repeatedly to find out what the doctor had to say about the results. I pushed to get the second consult. I pushed to get the surgery scheduled asap. 

    Anyway- get another appt!! Good luck!

     

    • b2wc97455
      b2wc97455 Linleel

      Posted

      Hi every oe, supporting the above information, however when you chasing them, make sure you put in writing, by law they have to act on something that being put on paper, and even better if you copy to PALS in where ever you are and NHS as well as any solicitor that act -'' NO WIN NO FEE'' for medical negligance - it is quite hot this day, as NHS being scrutinise, so be assertive but do not be agressive, get more information in you tibe about your and other people condition, express it that your QUALITY OF LIFE is effected..take charge on your health by working together with the Health Care Professioal, remember you are not the only patients they are under staff and hence if you make a qualifiying reason they bound to listen to you...

  • Brook-LynnsMom
    Brook-LynnsMom yeltzer

    Posted

    Hello Everyone,

    I'm hoping I can get a little insight on what it actually feels like to be in pain from Chiari. I have a 8 year old daughter and 2 years ago she had her surgery for it she had very bad symptoms before surgery such as sever headaches arm pains leg pains double vision and her one eye went crossed. After surgery she was great. But for the past 4 weeks she has had headaches and she has come home from school everyday. So for the last 2 days she has had this headache that brings her to teats and she screams with arm pains. I am taking her back to sick kids tomorrow if she isn't feeling better. But my question to everyone is is it super painful when you have the headaches like on a scale of 1 to 10 how bad is it like 10 being the worst pain you could ever feel. I just feel so bad because I don't know what she is going through.

    Also to kinda fill you all in I knew when she was 2 that something just wasn't right because a 2 year old she jot know what a headache is and neck pain I took her to a pediatrician every couple of months for 4 years her pediatrician never even touched her neck he told me it was growing pains I knew something was more wrong with her everyone told me she was doing it to get out of school. I finally took her to my doctor and 7 days she had surgery. Grrrrrrrr doctors make me to angry.

    Thanks everyone.. and if you could just let me know about how ad the pain is from the headaches as well as the arm pains thanks????

    • helen11122
      helen11122 Brook-LynnsMom

      Posted

      Hi, I am so sad to hear your daughter has this condition and at such a young age. I am much older 61yrs, I suffered a long time before diagnosis, eventually having decompression surgery. I still have headache with the pressure and going for another mri scan. Everyone is different with this condition. But when your an adult you know the triggers to what puts the pressure on your brain, like bending, jumping reading ect... as your daughter is so young I suppose she won't realise this. I don't have the leg and arm issues. The head can go from 0 to 10 in seconds, some pass out with it. I have heard of people having more than one operation for shunts ect... My consultant said sometimes nerves are damaged during operation. Which is one of the reasons he's doing another mri scan on me. I do hope your daughters chiari gets easier in time with the right help. Xx

    • Brook-LynnsMom
      Brook-LynnsMom helen11122

      Posted

      Thank you so much for your help. So we are currently in our local hospital just saw the doctor and we are being transfered out of city to a children's hospital. So she can have another mri with contrast scan to see if the blockage is back. Please pray and keep her in your thoughts.

    • helen11122
      helen11122 Brook-LynnsMom

      Posted

      I'm so pleased something is getting sorted, I'm in the UK and it takes time to get anything done. I will pray for your little one x

    • Brook-LynnsMom
      Brook-LynnsMom helen11122

      Posted

      Thank you so much. We live in Canada and when it comes to kids 90% of the time they are amazing get things done quick. When it comes to adults you could wait months for mri''s. The doctor we saw today did say that by the sounds of it that my daughter will more than likely need another surgery it's so hard because she is so young I'm struggling as a single parent to manage work, a sick child that is always in pain and another child who still needs my love and attention. And now having to worry about her having another surgery it's hard. But thank you so much for just being an ear to listen right now I feel it's hard to discuss what's going on with her with most people because as soon as I say Chiari no one knows what I'm talking about. So thank you

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