Chiari Doctors disappointing patients with misdiagnosed answers

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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.

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  • Posted

    I agree whole heartedly, I went yrs before I was diagnosed and it was the consultant for my back problems, that picked up on the chiari .
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  • Posted

    Hi I am glad as well that I was diagnose straight away..but both my primmary and secondary health care team would like to try to managing my pain before the last decision (decompression) even than they referred me to 3 NS..I was one of the lucky one to have the best NS..even though I have to wait..I am just waiting for my decompression now I have been waiting from DECEMBER 2014 AFTER MANAGING MY PAIN, they reckon my OP will be in May/June..so I just want to get done and over with this..I like to get my life back..
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    • Posted

      Thank you so much for replying. I am sorry to hear that you are dealing with Chiari to the point of decompression. I am trying sooo hard to deal with the symptoms of this disease every day.I am not a computer "hack", I am just a daughter, sister, wife, mother, and grandmother that has Chiari. My main goal is to create a list of "CORRECT SYMPTOMS" that has been statistically aquired for patients and Neorosurgeons. Your input of symptoms would be very much appreciated (since I KNOW it's long). May God bless you with strength, and the ability to keep your family close.
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    • Posted

      Sorry to hear u,have it but if I could go back 11 months I would wait as long as I can they say don't worry almost everyone makes a full recovery I wish I was one of the lucky ones my advise hold off as long as u can

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  • Posted

    Thank you, yes, this day, I just try as best as I could to enjoy each day what ever condition I have..we just have to be positive all the time..other wise..the pain itself can demoralised us..so..I hope you also keeping well,...
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  • Posted

    I am the wife of a chiarian as you would say. My husband was luckily diagnosed very quickly. He had symptoms starting with muscle weakness in both arms. Hyper reflexive in both legs. Tremors, loss of balance. He had a syrinx that developed and ran almost the entire length of his spine. He was quckly referred to a NS due to the extreme size of the syrinx. He had decompression surgery December 24 2014. My concerns are that he has had a couple of traumatic falls, no injury though. But i am unsure if they may be seizures or just loss of balance. I work full time and we have a 2 year old at home as well as 2 other school aged children. He is only 34 and it kills him that every day tasks are very difficult. Does anyone experience this?
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    • Posted

      Hi Giselle, just curiousity dies your husband feel the pain at all now, considering he alrady had the operation, even though he had the seizured etc, is he on medication?
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    • Posted

      I am not sure if he is having seizures. I am not typically home. But yes he still has pain, he is hyper reflexive in his legs. He has tremors on and off. And his arms occasionally contract back to his chest. Some nights if he accidentally rolls onto his stomach I will have to wake up and turn him over because of his arms. The doctor said his symptoms will probably not go away do to the massive size of the syrinx but they hopes it would stop from getting worse.
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    • Posted

      OH DEAR I FEEL SORRY FOR HIM AND YOU, HOW DOES HE COPE WITH IT..DOES HE WORKS?, WHAT MEDICATION DOES HE HAS?
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    • Posted

      He is not able to work unfortunately. Most tasks I have to help with. Some dressing bathing shaving etc. He is only on medication currently for depression and anxiety. We don't have a vehicle and the NS they say we have to see is 2 hours away driving. We are fighting to receive disability. But it has been refused so far.
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    • Posted

      NO WORRY, THATS LOTS OF US MEMBERS HERE.

      CAN YOU NOT ASK YOUR NS TO PROVIDE A MEDICAL STATEMENT SO THAT THAT CAN BE USED TO BACK UP YOUR APPLICATION TO GET DISABILITY FUNDING TO YOUR OCIAL WELFARE?

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    • Posted

      if he in lots of pain magnesium oil spray wll help to reeduce pain by massaging him all over his body before he goes to bed..you can buy magnesium flake and mix it with warm water and spray it all over each night..that what keep me going...
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    • Posted

      His last statement was he will be better within 2 years. Its the other doctors he has seen that dont think he will be. He was rated a #1 NS a couple times. But he barely stayed in the room 2 minutes with us and the only testing they have done is MRI imaging to make sure the spinal fluid is moving as it should. His exact words were I fixed my problem. The rest has nothing to do with me. They have not done any nerve damage testing etc. Besides getting the transportation we need to even see him again, I really dont want to. He treated us poorly and I feel that it was because we have government assistance insurance.
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    • Posted

      SO..which department do you have to see for the rest..in that government insurance..surely there must be a telephone number or address that you can write...so you must try to complain..I know that us is very good in a legal thing or the human right..unlike in the UK but our National Health is fantastic here, but our taxes is so high.., then ask that NS to provide you with his medical certificate so that you can give it to your social welfare to aplly for your husband disability fund..because your husband is unable to perform his daily task..it isimperative that he has to get financial support from the government..is there any sort kind of ''citizen advice beurau'' or social worker..that can help you to sort this thing out?..what happen if people poor and have not got the money..how are they managing to get better or go to the hospital for treating themself then?
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    • Posted

      Hi Gisela,

      I just found out from google I wonder if this information can help you?

      "Each state has different rules on who’s eligible and what services are covered. You can call 1-800-MEDICARE (1-800-633-4227) for more information on both programs.''

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    • Posted

      He is covered to be seen. And the doctor will see him. Its just the transportation and childcare. He is being referred for OT to see if he can get his hands more mobile. Possibly strengthen his arms. The OT is local so that's not a problem. But he has had several healthcare workers ask why he isn't getting disability. But apparently only the NS opinion matters because that's where all of his problems stem from.
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    • Posted

      So a positive and a negative. He fell again when he got up this morning. Called the doctor as well as the NS he will be seen at the doctor Friday possibly to have to use a walker or cane. Then he will go to the NS in March for another check up and MRI. We shall see what he says.
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    • Posted

      Make sure you get the to  put a staement about his condition so that you can used that to gt your disability allowance
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    • Posted

      I had the surgery done 11 months ago and I have seizures they say they're not related to the surgery but I didn't have them before so I have had quite a few major falls myself from the seizure like convulsions even though the doctors are saying they're not it's not related so I am currently also not able to do much because of the risk in hurting myself from the loss of my balance even after the surgery I actually think it's worse I wish your husband luck
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    • Posted

      Hi, I am so sorry to hear that your husband is having exactly the same experiences that I have on a daily basis. I believe that sometimes it becomes more difficult for loved ones to manage the difficulties that go along with this disabling disease. I hope your husband has better days then bad. Also wishing you strength and patience. Would like to hear from you again.
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