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Chiari Doctors disappointing patients with misdiagnosed answers

Posted , 7 users are following.

Misdiagnosed
Misdiagnosed

I was diagnosed with Chiari Malformation 1 in April of 2013. I was in 2 car accidents, the first in 2002 and another in 2004. The MRI'S that were taken for my neck and back problems that I received in the auto accidents, showed this disease. I was fortunate enough to find out why I was having so many symptoms that did not relate to my other issues in my neck and back. What breaks my heart are the patients that don't get the proper diagnoses of Chiari, for sometimes years, and once they do, they tell the doctors their symptoms, and they are told these symptoms don't relate to Chiari. After reading and studying this disease, I feel as though us Chiarians need to be ASKED what our symptoms are, and they should be calculated statistically so the doctors and patients TRULY understand what this disease is capable of.

3 likes, 34 replies

34 Replies

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  • gill17966
    gill17966 Misdiagnosed

    Posted

    Hi my daughter was misdiagnosed for  11 yrs She is only 19yrs old and Chiari was diognosed last oct .She also had a serex .She had surgery on 29th jan and got home on 2nd Feb .She is doing so well ,She had her operation in Sheffield .She says yes she still has pain but nothing like what she had before the operation . Hope youre husband gets sorted soon 
    • b2wc97455
      b2wc97455 gill17966

      Posted

      hi Gill can't help to send you the message, i spoke to my ns HE TOLD ME 
    • b2wc97455
      b2wc97455

      Posted

      sorry gill, yes my NS told that it will take a months to feel much better after operation, than you will feel normal around 3 months, then recovery period is 6-7 months where symmptom such as headached balancing problems (chiari effect0 will disappear - I hope thats help
    • gisela46868
      gisela46868 b2wc97455

      Posted

      We were at the NS again. His syrinx almost completely deteriorated his spinal chord. May be on to surgery #2 but a lot of risk is involved with the small size of his spinal chord. High risk of being paralyzed from the neck down with it without surgery. We go back again in a few weeks for more MRI imaging. They want to put him in a pain clinic. He is currently taking baclofen for muscle spasms which has helped some with the pain. Unless he overexherts himself, he is alright for now.
    • b2wc97455
      b2wc97455 gisela46868

      Posted

      Oh dear God, what a traumatic news, aren't you be able to take this case to no win no fee lawyer as this is really negligence isn't it? the health care professional have duty of care to look after their patient don't they..

      Can they not operate him again? or perhaps do the blockge with botox/steroid injection? please keep us informed ..we are praying for  you though

  • torigrace
    torigrace Misdiagnosed

    Posted

    Hey Misdiagnosed, I can totally relate as I am sure many others here can as well. I've had very severe symptoms since March 2015 and have spent the last year being told it was psychosomatic because I recently lost my Dad 2 years ago. I was handed off to a Chronic Pain consultant who wanted to stick needles in my head and have me go to a pain psychologist... in the new year I finally had enough and paid to have a full set of spinal MRIs done. The cervical one showed a small but clear chiari, it may not reach the 5mm but I just went to a Neurosurgeon this week who refered to "My chiari", which was a first in itself and then proceeded to tell me that all my symptoms weren't because of the chiari at all because theres no syrinx or hydrocephalus. He told me I had to go to a headache clinic... 

    What I don't understand is how can the fact that I even have a chiari (which is a rarity in itself) and have ALL the exact symptoms that fit nothing else (since I've been through them all with my GP) but chiari, for to just be a coincidence and be told it's not related at all.... WHAT?

    It's like you get one set of Docs who will help you and who recognise sufferers even with the smaller herniations, and the other set who refer you on to other doctors because your chiari isn't symptomatic in their opinion even though they just spent 15min with you. 

    I'm trying to find someone else to help me now.

    Thank you for being a voice.

    • melanieheather
      melanieheather torigrace

      Posted

      So I had the surgery almost a year ago in march 2015 they told me I was cured and that its psychological problems but I still have extremely decapitating bad headaches in the back of my head and I seem to form like lumps of fluid or something but when I put a cold pack on it it goes down still haven't been able to work because I have dizziness and I have convulsion like seizures or seizure-like convulsions and I start to burn up like I'm having hot flashes I'm only 39 years old but my body starts to go on fire and shakes uncontrollably and I have been to three neurologist and still haven't had an MRI done after my surgery so I don't know if anybody else has had the same symptoms like me but was wondering if anybody has any advice or clue as to what's happening I been passed from doc to doc to psychological docs I'm at my wits end .. I hope this let's people know that if u don't have to go through the surgery dont
    • b2wc97455
      b2wc97455 melanieheather

      Posted

      Hi there, I have not got a clue yet as I am still waiting for my decomp, but I heard from someone who had a succesfful decomp. that she was with the observation of her Neurologist and NS up to 6 months..., and she is still wanting to see her gp to be refered to her neurologist onece a year to pay herself just to make sure that she is ok...
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