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Recurrence of Chiari malformation

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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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  • yeltzer
    yeltzer

    Posted

    Well went back to my GPs surgery saw a locum who put me on tramadol for my pains. Went back two weeks later as every time I coughed my head seemed to explode, same going over bumps in the car. Does this sound familiar? Well she's refered me to a neurologist, I asked to go back to my neurosurgeon but she says we have to go through the procedure. Hopefully it wont take best part of a year this time. I hope its not CM but it needs to be checked outt.
    • elizabeth15427
      elizabeth15427 yeltzer

      Posted

      Pain with coughing, sneezing and bumps sounds exactly that it is CM :-(
    • yeltzer
      yeltzer elizabeth15427

      Posted

      Yes thats what I thought. But my regular GPs insist that once you have had decompression thats it you are cured. It took a year to be refered to a neurologist in the first place "we don't treat coughs". So hopefully I will find something out. It may be scar tissue mimicing a CM or something entirly different but at last something is being done. CM sufferers "never give up".
  • yeltzer
    yeltzer

    Posted

    Well my GP referred me back to a neurologist, I wanted to go back to my surgeon but was told Ihad to go through the system. He has told me the pain in my neck and head ache pains  are a migraine that I have 24 hours a day 7 days a week. movement, coughing pain etc are all part of the migraine. I despair.
    • htch
      htch yeltzer

      Posted

      Hi. Sorry to hear you've been having such a hard time. The cough headache you are describing is the exact symptom that caused my chiari to be diagnosed. It is the main symptom I have.... The pain is caused by the CSF pressure building on straining and bring blocked and pressing down on the brain stem and or cerebellum..

      is it worth calling your NS secretary to see if you can get an appointment without a referral ?

  • yeltzer
    yeltzer

    Posted

    Well I finally got a GP to refer me to a Neurologist who got in contact with my Neurosurgeon (at another hospital) who has admitted that up to 25% of patients can still get some syptoms after decompression. It also emerged that due to a mix up from yet a further hospital I had not had a follow up MRI, which I am now going to have in a weeks time. The Neurologist thought that my symptons showed I suffered from megraines 24/7?
    • Keko
      Keko yeltzer

      Posted

      I'd say it's the opposite. Probably more likely that 25% of patients that have surgery would go on to lead a normal life....normal for a person with chiari, that is. Seeing as it isn't a cure, the possibilities of still having some symptoms are nearly at 100%. An improvement in symptoms, at least in my book, would mean a successful decompression.

      I'm glad you are finally getting an MRI. I hope it holds some answers for you.

  • rebecca46604
    rebecca46604 yeltzer

    Posted

    I am not a doctor but I did have Chiari malformation for years, 5 years ago I had the decompression surgery and they removed the C1 vertebrae from my spine. I was doing great for about 3 1/2 years until I got a migraine in December of 2014 that put me in ICU for 3 days.

    I found out that I have a calcium deposit in my brain that wasn't their before! After that the headaches and migraines were almost everyday and it got so bad I had to start Botox injections to help the migraines. It helped for a while but only for the migraines now it's not helping anymore and I made a trip to the neurologist , had a MRI and go back in March to have a look at the MRI to see what all these problems are from. Along with the return of the headaches and migraines also came this clicking in my ways that no one else can hear, the constant sound of my heartbeat in my ears only it sounds like what a unborn baby's heartbeat sounds like on sonogram and I have horrible pressure in my head and can feel the pressure on the back of my eyes and it causes flashing lights in my eyes 24/7 and it's driving me insane!

    I was told that I may have to have the operation repeated if the symptoms came back and mine came back 3 1/3 years later.i wish you all the best of luck and hope you can get some answers, I intended to make some one listen if I have to go back to the neuro Surgen myself and have him do a MRI!!

    • brendab
      brendab rebecca46604

      Posted

      My daughter has had three decompressions. Some of the reason is because the first doc should have done a couple things differently. Her neurosurgeon made it very clear that it is not a cure. There is none sad. I hope you feel better. Many people get checked for EDS when they have Chiari. I've read of the clicking noises. My daughter also heard the heart beat sound or rushing water? They say sometimes that could be from fluid build up in the head but this is only what over read... Of course I'm not a doctor or claim to be one. Best of luck to you!!
    • rebecca46604
      rebecca46604 brendab

      Posted

      It never occurred to me that what sounds like wind rushing through my ears or sometimes like I'm near a creek was related to Chiari. I see my neurologist March 8th and I just had a new MRI l, I just never knew the Chiari could reoccur. I hope your daughter is feeling better as well. How far apart if you don't mind me asking were your daughters decompression surgeries and how is she doing now? I hope she is well.
  • b2wc97455
    b2wc97455 yeltzer

    Posted

    Hi Yeltzer, I know you have issue over a year ago, how are you kknkow, have your issue being sorted, I just curious about it, if you are pain free now?
    • yeltzer
      yeltzer b2wc97455

      Posted

      Just getting it sorted, eventually. Seen the Neurologist who got in touch with the Neurosurgeon, who realised I had never had a follow up MRI after the decompression. Thats this Saturday now. Check to see if there is anything affecting the CSF pressure He did admit that up to 25% of patients did have some symptoms even after surgery, albeit not usually as severe as before.
    • b2wc97455
      b2wc97455 yeltzer

      Posted

      Did you never gone back for check upp at all since decompression?, perhaps because you feel fine? are you on medication at all, did you go back to work since
    • yeltzer
      yeltzer b2wc97455

      Posted

      unfortunately Isuffered after my decompression and cauterisation and could not do anything for about three months. I was discharged during this time. I came round and felt a lot better. Afew years later I started  getting the symptoms back. Over the years they got worse but my GP refused to believe me. "You've had the opperation so your cured" was her statement. Despite medical specutation from other health professionals my GPs surgery refused to refer me back to my Neurosurgeon. Eventually I saw a trainee doctor who set the ball rolling for a referral back via a Neurologist. All they would prescribe was pain killers, co-codramol then tramadol, which according to the Neurologist is useless for the condition.
    • melanieheather
      melanieheather yeltzer

      Posted

      It is useless they have me on diazipam 10mg for the nurses and muscles in my neck and 5 mg of norco 800 mg. Ibuprofen and I still have to put ice packs to help me too
    • b2wc97455
      b2wc97455 yeltzer

      Posted

      try to avoid cocodamol if you can, as it caused constipated..on the  other hand tramadol is contain (tramacet which opiod) is not good either..perhaps increase paracetemol or if you can ask your gp or neurologist to prx you topiramex..and combine or buy yourself magnesium oil..spray it all over neck..back..occipital each night..if you feel ill qgqain.get the ambulance..let them take you so that they can sort you out as..ap..dont suffer quietly...let us know how you are getting on
    • yeltzer
      yeltzer b2wc97455

      Posted

      Started with paracetemol no relief  and cocodramol had no effect so I was pescribed Tramadol and Paracetemol. As you say Tramadol can be addictive so I only took it when things got really bad. The neurologist told be to go back to paracetemol or cocodramol(!) however I try to supress the pain by meditation/relaxing, mind control etc, got quite a strong tolerance to pain but sometimes it just drags you down. The blurring of eyes/ vertigo etc are more a worry to me as it effects what I can do. Not sure about magnesium as tablets can react with warfarin that I have to take but don't know about reaction to spray. Just glad that after 2 years getting the initial diagnosis, having the op and then another year to get refered back they are finally doing something.

       

    • b2wc97455
      b2wc97455 yeltzer

      Posted

      Get the spray oil if you take warfarin...if you suffer from vertigo ask your g to prx you with bethahistine (Serc 16) its fantastic for vertigo - get anti oxidant if you can such as grape seed extract supplements no side effect take 30 - 45 days to start kicking - drink 2 ltrs of water each day...yeah if you can avoid tramadol that is great..just stick with paracetemol I know its not strong enough take more...but try to be positive..if you can ask them to refer you to Mr flint or Walton centre?
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