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Newly diagnosed, have question

Posted , 7 users are following.

Kari1188
Kari1188

my 21 year old son was diagnosed with Chiari I today. The doctor did not order a flow test and said he would only do that if he were going to operate. I assumed the test would be ordered to see more of what was going on due to malformation. He has many symptoms. Told not to come back for 6 months unless he gets worse.

Well he is 21 and can't do what his friends do nor go to school. His quality of life is not good and he is depressed because of it. Working is hard due to cognitive issues. Migraines at age 5. POTS at age 12. He has a sleeping disorder. Etc...

Would  you fight to get the flow study test done?

Would you get a second opinion?

thanks, 

Kari

0 likes, 9 replies

9 Replies

  • kenya13914
    kenya13914 Kari1188

    Posted

    Hi. I would go get a second opinion. I found out about 2 months ago that I also have chiari one malformations and mine tonsils are to 8 mm. ME and my Nero decided to go ahead with surgery. I also had the flow test did and it is being restricted. I hope yall get a second opinion. Good Luck
  • Angijo77
    Angijo77 Kari1188

    Posted

    I wouldn't fight the flow test but I would get a second opinion if he is in pretty bad pain. I am 39 I was diagnosed with Arnold Chiari 1 Malformation last year and have undergone two surgeries and it looks like they may have to put a shunt in and I have not had a flow test done. Good luck to you and your son prayers are coming your way.

  • Linleel
    Linleel Kari1188

    Posted

    Go to a different Doctor. Find a brain/spine neurosurgeon and request an MRI Cisternogram- it tests CSF flow. There is no reason for him to suffer!!! These doctors can be real twits!! Any time a disorder causes a substantial decrease in quality of life, it's time for action!!

  • hayleybell
    hayleybell Kari1188

    Posted

    Hi Kari,

    Flow study is not the most important thing.

    Chiari patients have disrupted CSF flow, what your son needs is a second opinion from a Chiari specialist & a full MRI of his spine to rule out syrinx.

    best wishes

  • melanieheather
    melanieheather Kari1188

    Posted

    Demand a second opinion before it gets worse in my opinion I'm so angry at these doctors looking at us and not listening if they would have listen to me in the first place I think I would have been in a better place then I am now I have more damage now I think cause they kept sweeping my words under the rug go get that second and some times a third if u have too

  • Linleel
    Linleel Kari1188

    Posted

    Again, I would find a different doctor and demand a "cine MRI" to check flow.

    I went through months of tests after being diagnosed with Chiari 1. I saw the first neurosurgeon and he didn't feel like my symptoms were significant enough to warrant surgery. He referred me to a neurologist. She didn't think my symptoms were significant enough.  Months and months of tests which found nothing else and they finally referred me to a different doctor to get the cine MRI!! 

    Met with the second neurosurgeon, who checked my symptoms and didn't think they were significant enough (notice the pattern here). Apparently, they all think that if you don't have "nystagmus", or some other "classic" symptoms of Chiari, that you don't have a significant problem.   ?

    I had the cine MRI  and BINGO- complete blockage of spinal fluid.  Had surgery scheduled and issue resolved. 

    Telling someone not to come back for 6 months is stupid!! Your doctor seems, like many, to be clueless!! The point of being a doctor should be to alleviate symptoms, not wait around for a patient to get worse before doing an cine MRI. 

    Also, don't be afraid to pester pester pester!!! I was so frustrated with my neurologist not getting back to me about questions I had. I pestered the people at reception, the "assistant" who was really a jerk, etc. 

    ALSO: Get copies of all tests, MRI's etc. so you can read them at home on your computer. So you can study what exactly is going on.  

    • Kari1188
      Kari1188 Linleel

      Posted

      I called back and complained that they did not do a full history and stated all the symptoms they missed. Said my insurance would pay in full why not do it. Got a call back and he is scheduled this Friday. We will find out on the 15th if there is blockage or not.

      Thanks everyone for their replies.

      Still will do a second opinion no matter what current doc says.

  • Kari1188
    Kari1188

    Posted

    Update:

    Tomorrow's appointment at The Cleveland Clinic with Chiari specialist was moved to January 31st. In the mean time, my Ehlers Danlos lead to an easy ankle break over Christmas. My son, sister and nephew seem very likely to have this also.

    In my school district a gal went to Wisconsin for her Chiari surgery this week. I so badly want to know who she saw.

    Then I was at dentist and the receptionist and I got talking and her daughter just had the surgery in Toledo. It was very successful. She graduated with my son of all things. She is also 21.

    Taking it day by day.

    KD

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