Chiari Malformation Type 2

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I am a 25yr old female,  I was recently in hospital fora week with severe headaches and vomitting and dizzyness, Had 2 MRi scans and a CT, They told me they had discovered a type 2 Chiari Malformation so i have my 1st Neurology appointment next week and feeling a little aprehensive about what to expect. My headaches are very much ongoing and my balance is terrible now and get alot of pain and pressure in my next and my head. Can anyone share some experiences or advice. Thanks

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  • Posted

    Hi jenny, I have chiari malformation 1, I have had decompression surgery last year, but suffered with head pressure and dizziness too. I still have some symptoms and one side of head is still numb, but I'm coping. Keep us posted how you get on good luck x
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    • Posted

      Thankyou helen, Just seems like everything is taking forever, and i dont even know what they will suggest as i havnt seen a consultant at all yet all i know is the painkillers are not working !! x
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    • Posted

      No mine didn't I ether. I couldn't take most medications as they made me sick. Hope they sort something out for you soon. X
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  • Posted

    Hi I just wanted to recommend a book called "mindfulness for health: A practical guide for relieving pain, reducing stress and restoring well being". It does a good job of explaining pain and teaching some good techniques to reduce pain. Most of us will agree that there is no particular drug that helps with the pain, for me they only just take the edge off.

    The book gives you the tools to cope with the really hard times, espescially those days when you have had enough as sometimes a bad day is not due to a significant increase in pain, but a decrease in the tolerance of it. It is good to have something to prevent the panic of thinking nothing will help but the explainations of pain it gives actually helped me look at it all differently. All your appointments and long waits really do seem to take forever so you need to do something for yourself so you don't fall into the trap of pinning all your hopes on the next appointment.

    It took me two years to do this myself after a really unpleasant and ongoing recovery from surgery. In all honesty my mood is still low and I still get very stressed from pain, but the difference now is that I don't worry about the future anymore which is a great relief. If you keep a strong and proactive attitude from the start, you can minimize the distress from your illness and feel more in control of what you are going through. Good luck at the neurologist, if you don't feel they are right for you, you can contact some chiari specialists directly that other people on this site recommend.

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    • Posted

      That is correct, but as someone who has had the shape of their skull changed surgically, I can tell you that there is alot more to it than that. Seeing as this is a patient forum, I doubt anyone comes on here looking for someone to change the shape of their skull.

      Chiari can't be cured, so we have to do a bit more than just wish it away. It sounds like you know alot about it though, so please share anything useful you have to say with the rest of us.

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    • Posted

      the poster isn't post-op.  And suggesting that diet and such will make any difference pre-op is nothing short of a slap in the face. 
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    • Posted

      Now you are confusing me...... I didn't mention anything about diet. I'm aware the poster is pre-op, as I once was, which is why my advice was to do with getting the most out of each medical appointment and minimizing the secondary stress caused by constant pain. 

      Every comment you have posted seems to have no other purpose than to add negativity.

      I am more than happy for you to challenge every piece of kind advice someone may offer, but at least offer some insight of your own. Like I said, if you know enough to come on here and tell people who are living with this every day that you think they are wrong, then please share some of that knowledge with the rest of us because even the most skilled and experienced neurosurgeons will admit that very little is known about this condition or the correct treatment for patients.

      None of us have a clue, we're just trying to help each other cope. So please, I really want to hear your actual advice rather than random miserable comments you don't explain.

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  • Posted

    Dear Jenny, that was I had for a year, but my gps (doctors0 given me so many drugs, even then there wre none of them can suppress my pain until i was collapsed one day and they given me A CONTRAST MRI SCAN where they found out I have CM1, luckily both my 1st and 2nd ry health care professional are excellent because I am quite proactive and positive in getting involved about my condition taking information from the website showing them what is all about..until my neuro surgeon seen me asked me to see 2nd opinion and referred me to the best NS in the uK, which I am going to see on the 14th of Jan..in the menatime I am doing what ever I can to mininise my pain by getting accupuntures, eatining healtily, doing walking each day, stay AS ACTIVE AS i CAN (EVENTHOUGH i AM STRUGGLING) drinking 2 lts waters a day..taking supplement such as: grape seed extract and each night after shower/bath I massage my self with magnesium oil..I dropped all the medications as prolong the use of drugs giving people more side effect and that drugs giving me no reduction in pain wise..my specialiast agreed to get off the drugs if that do not help neither....so..get your gp/neurology to refer you to neurosurgeon have a look at the website which clinic is the best finding out from which area you are living that know a good neuro surgeon its worth while to travel 3 - 5 hours to get a good neuro surgeon who has a good success rate..in the meantime..show to your health care professional that you really wanting to help them to help you getting better as you would like to get your Quality Of Life back..hence you have got to be assertive..they have not got awareness as neuro science is a complex thing..soemthing patient thing the doctors don't care..is not that they don't care..they have a little knowledge about CM..so you have to help them along with it..show them..with the information you take fromt he website..some medication other patient taking..? what it work for other patient sometime do not work for other..Topiramate used to work for me..but after a while it does not work any more..but magnesium oil is pretty good..provide me with relaxation..and grape seed oil giving me antioxidant..so reduce the inflamation..so let me know how you are getting on..but be positive..there are 80% patients who are succesful after operation they are not in this group because they are busy with their own life...ashame..it would be nice if they share their life with us..however..when people get better they tend to forget about the pain they have been going through...
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