have any of you heard about it?

Hi every one, even though i have not been writing/response to you all but i keep following it up all the news..i also just reading quite lots of website and finding out..that our condition have similar symptom with patient who suffer from chiari malformations but they are of course worse than we are..however majority of them were saying..at first they were diagnosed as FM/CFS but when they started to get FM fog and terrible migraine their doctors sent them to get scan/MRI only then they found out that they were suffering from chiari malformations..so after the operation 80% recovering, 20 % felt much better even though sometime they still get migraine but no more aching all their body...have you ever heard of that?

15 Replies

  • Poor guys who have the severe types. Never heard of it. Had to look it up. Very interesting. At least there seems to be a cure? Thanks for sharing.


  • Thanks Annunaki, but its better if none of us have Chiari as it is demoralising worse than FM

  • Fingers crossed!


  • Chiari malformation is highly linked to Ehlers Danlos which is also often associated with fibromyalgia.One of my sons 14years old now has all of the above but can't have op as too risky 8( It is another one of those pointers which suggests Fibro is as much linked to neuro as rheumatology musculoskeletal. Hopefully the more it is acknowledged as associated with other disorders the more it will be looked into.

  • Thanks Ken I hope this can help others

  • thank you

  • Thank you so much for sharing this with us all. I have not heard of any links myself to this but I have pasted a link to the NHS Choices cache for anyone who would like to read about 'Chiari-malformation:'


    All my hopes and dreams for you


  • I would think that many people who have been diagnosed with Fibromyalgia may have Ehlers-Danlos Syndrome (EDS). Some of these patients also have Chiari-malformation. People who present with multiple symptoms are frequently diagnosed with Fibromyalgia and ME when they actually do not have these conditions.

    I would be very suspicious if you have other family members who have been diagnosed with same or other conditions as EDS is a genetic condition but can also be by spontaneous mutation of the gene. It is currently classed as a rare genetic Connective Tissue Disorder which causes a defect of the Collagen. My Sister had been diagnosed with ME and my previous GP was adamant that I was suffering from MS although no Neurologists except one agreed with that diagnosis.

    I certainly knew that my diagnosis was incorrect and I also knew my Sister was not suffering with ME. I had been studying to be a Doctor from age 10 so I knew exactly what was wrong with me. Then when I was 18 I needed a blood transfusion and was contaminated with Non A, Non B Hepatitis (now called Hepatitis C) so that added another long list of symptoms to my already extremely long list further complicating my goal of obtaining a diagnosis for the original condition. We were kind of lucky with knowing what was wrong because I was born with multiple skeletal abnormalities which helped point me in the correct direction. However, even though I have skeletal abnormalities all my siblings have less severe symptoms and most of them have very few visible abnormalities.

    I think all people who have been diagnosed with either ME or Fibromyalgia should research EDS to make sure they can rule it out. It should be quite easy for people to rule it out. To attempt to rule out Chiari-malformation buy yourself a cheap neck collar from Amazon. As soon as you get the very first signs of head pains put the collar on and see if it helps stop your head pains. Now if it does it does not mean you have Chiari-malformation. I don't have it. However, as soon as I have been upright for longer than my body can cope everything starts to sink down because of the EDS. When people have EDS everything is too weak and too flexible. As soon as your body has had enough everything starts to sink down and becomes too heavy for your body to support. So the best way I can explain it is to say that your head becomes too heavy and sinks down causing pressure on nerves and bones at the back of your head. This can sometimes be because someone has Chiari-malformation or it is more frequently caused by EDS.

    Patients with EDS should try to avoid surgery unless it is life threatening as surgery often makes the problems, pain and symptoms even worse with damage being done to our fragile nerves or other fragile body parts. I still suffer bone pain from where I had operations on the bones in my feet and I had them when I was 13 and I am 59 now!!

    It is always important to rule other conditions out when you have been diagnosed with such things as Fibromyalgia or ME. People should also be tested for such things as Lymes Disease, Hepatitis B, C, D and E and look up Sjogren's syndrome. Usually if you are sensible and honest with yourself about your symptoms you can usually rule out many of these things yourself. They tried to diagnose me with, ME, Chronic Fatigue Syndrome and Fibromyalgia in the past but I would not accept these diagnoses as I knew they were wrong. I already knew I had a Connective Tissue Disorder and then I also knew I had been infected with Hepatitis! I was not prepared to give up the fight but it took me until around age 35 to get the diagnosis of Non A, Non B Hepatitis (now called Hep C) when this was blatantly obvious from my blood results and symptoms since age 18.

    If you believe your diagnosis it wrong it is up to you to fight to get it corrected - no-one is going to do it for you. Not a case for the faint hearted!! It took me until I was age 54 to get the EDS diagnosed. My Sister has also now been diagnosed with EDS. After she went for a second opinion and took my parents with her all three were confirmed to have EDS. My Sister's daughter went on to get a diagnosis and so did her daughter. My daughter and at least one of her two children have EDS the other child was difficult to assess as he has Diabetes Type 1. Now many other family members are being diagnosed. Other family members are in denial and do not want to face up to it. I was never prepared to give up as I never wanted ANYONE to have to go through what I had been through. Most of my life I was accused of being a Hypochondriac, Hysterical, Psychiatric Disorders, etc. In the meantime I have suffered both permanent psychological and physical damage because of the way I was mistreated by the NHS. Good Luck in your research everyone.

    Keep Smiling or in my case Keep Twinkling.

    Love and Hugs to you all.

    Twinkling Star Xxxx


    If you are the type of person who gets anxious worrying about things then I would advise you NOT to be googling lots of different conditions and worrying over things that you probably do not have.

  • Than you for the respond, did you ever have MRI contrast scan,, because I have. I have got horrendous

    headache like a truck hitting me that is each day, I even have to resign from my work as I was COLLAPSED AND UNABLE TO WORK. 6 months ago i was unable to walk, with the help of my friends and supplements now I am able to start walking pretty slowly.

  • Hi all I have chiari malformation but also syringomyelia I am in chronic pain mostly on my right side , there is no cure for this ? They can do major brain surgery for the chiari malformation but this will not do much for the syringomyelia? I will end up in a wheelchair soon as unable to walk far or do anything much , am on lots of meds but they don't seem to help a lot , because this is a very rare illness not much is heard it and even some doctors have not heard of it . This was picked up by a MRI scan of which I have had plenty , thanks Linda :)

  • Hi linda,

    Where do you live/, well I heard they have 80% success rate both for chiari/syringomyelia but if you live in the UK there only a few neuro surgeon who are fantastic and specialist in this field one private hospital in harley street/nhs are walton liverpool and nottingham, are you OK though?, how are you coping with that..what kind of medication do they give you? how long do you suffer from it?

  • Dont give up!!!

  • Hi B2WC , I live in the Gloucestershire area in England not sure if anyone else suffers from it close by . I am taking tramadol, 400mg a day , gabapentin 3600mg a day , amatripelin 75mg at night, am under a pain clinic , but I have lost my gag reflex and have servere swallowing problems now . I was offered surgery but we spoke with the surgeon and because it's only a small (4mm) descent he said it would help with the headaches but would not help with the syringomyelia and could make it worse , so we r going to try and treat the pain and wait and see I still might have the opp yet ?? :)

  • Well, according to my NS if chiari patient have syringomyelia they should really have the OP, can you not ask him to refer you to another neuro like Mr Astal I thin he is in Nottingham really great specialist..really you need to talk to anohter 2 NS before doing anything...have you ever collapsed? and so you are managing ok i suppose? as i suffered really bad and unable to work..my arms tinggling my right part of the body disfuntional..when I move i feel terrible but at least I am able to walk now with taking lots of supplements I ll be able to reducing my drugs (I hate taking drugs - i used to take what are taking now..) but I have the side effect...mostly when using it for a longer period of time...but just liaise with your health care professional regularly.

  • Hi B2WC , they thought first of all that I had idiopathic syringomyelia but then had further MRI and the surgeon then said that I have a 4mm descent and also a thethered spinal cord at the bottom of my spine . I have chronic pain down my right side with burning pain down my right arm , also reduced temperature feeling on my right side , it's started to come down my left side now , I will properly have the decompression surgery as the meds are not helping with the pain and having to deal with the side affects !! I will look up the surgeon you have said , i no things are getting worse because of the swallowing difficulty I am now have ,thanks for the reply take care Linda :))

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