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For Everyone, Dont Stay With One Doctor's Point Of View

Posted , 8 users are following.

Shorshus
Shorshus

Hi my name is Jorge and I live in Uruguay, since I was born I suffer from painfull headaches. On October of 2015 I was told after a magnetic resonance that i had Chiari (6mm), and I would have my surgery on December 14th. Instead of not doing anything I searched on the internet and I found the Chiari assosiation in Argentina. I emailed the doctor and we arranged an appoinment on December 12th. When he asked me about my headaches he conclude that my headaches were not so typical of Chiari. After that my surgery was postponed, and I was told to get another magnetic resonance but this time studying the cerebrospinal fluid flow. When I got the results and I showed them to this doctor, he told me that the flow was common and that I suffer from Migraine. Now I am medicated and I am living a normal life. (In case you want to know, I play football and rugby). Hope this is useful and good luck!

0 likes, 9 replies

9 Replies

  • kalipickle13
    kalipickle13 Shorshus

    Posted

    She's right. Football and rugby aren't exactly safe for people who don't have brain coming out of their skull, it's especially dangerous people with Chiari. Chiari is progressive, and will get worse over time. Surgery helps keep more damage from occurring, and is the only treatment. Chiari IS fatal, over 100 people with chairi died last year. Granted not all of them died from Chiari, but many did. Ryan McGee, David Moseley, those are two people I know off the top of my head who died because of Chiari.
  • Shorshus
    Shorshus

    Posted

    And to everyone. If you dont agree with what the doctor told me, and in case you are right, I am going to keep having a normal life, that will be my war against Chiari. And if it kills me directly or indirectly, i will be happy because I lived a normal life.
    • karen71713
      karen71713 Shorshus

      Posted

      Hi, I am very similar to yourself, I had a MRI in October and another in November and it was comfirmed that i have a 6mm herniation, I had headaches which were not normal for me, even though I have had headaches for most of my adult life, (I am now 52) they have never stopped me from doing anything, and have always gone with medication. The neurologist I saw also doesn't think that these latest headaches are due to the chiari, he told me that the problem is that sometimes it is other problems that are causing the symptoms, people go ahead and have surgery and then when they don't improve they think the surgery hasn't worked! everyone is different, and probably like you unless my symptoms worsten I will not have surgery, 

       

    • karen71713
      karen71713 Shorshus

      Posted

      I'm from Liverpool England, I have only had one bad headache in around 5 weeks, so certainly not rushing into anyrhing,
  • Hope255
    Hope255 Shorshus

    Posted

    It took 54 years to be diagnose with chiari 1. The majority of people with chiari are born with it, some people start showing symptoms as early as infants up to 74 years old.

    Suffering with headaches went to alot of doctors and neurologists, had alot of mri, they all would tell me there wasn't anything wrong. It was't until I was having blackouts, losing balance, vomiting, and forgetting. It took a neurosurgeon that had experience in chiari to explain what it was. There are no treatments nor medications. I did have the decompression and do not regret having it.

    What ever you decide to do, just remember that the symptoms are going to get worse and the longer you wait it well take longer to recover. You well be able to live your life to the fullest but without the pain.

    Good luck with your decision. Hope.

  • b2wc97455
    b2wc97455 Shorshus

    Posted

    Thank you shorshus for taking the time to post this message, i am over 45 it is only now that the neurologist and NS diagnosed that I have CM 1 but I am going to have 2nd opinion, my condition is effecting my quality Of Life, what kind of medication do you have ?, because I tried everything..it does not help me at all.. i would like to kno if you can share with me please..because obviously it would be nice to try managing with medication..but I used to work at the pharmaceuticcal industry..the drugs is only temporary..they are not for fixing thing...chiari is not a disease unlike cardio vascuar disease or diabetic or asthma or hypertension..it is a mechanical problem that need to be fixed (just like a car if the engine is broken - or the carburator need to be changed etc..then need to changed..is not like MOT or changing the oil etc) somehow ..with chiari is like we have our feet to big for our shoes (size 6 foot in size 5 shoes) the brain is size 6 the skull is size 5 so the prezure need to be enlarge..but your might not be chiari hence its can be maintain by medication...but make sure you are not going to use that drugs for a long period of time..make sure you ask our health care professional to find out what is wrong with you..so they can fix it..as pro long the use for any drug will have side effect (have a look at their SmPC - the leaflet contain in their package)
    • Shorshus
      Shorshus b2wc97455

      Posted

      Hi b2wc97455 like I said before, the medication is for migraine, if the headache is not that painfull I just take an analgesic, but if it is really bad, I use triptans. But you should see a doctor, and describe him how your headaches are, and how often do the headaches occur. DONT MEDICATE YOURSELF. I am pretty sure that the doctor will send you a little task for you. The task consign in writing on a calendar every time you have a headache and if you take painkillers. There he will have a more accurate view on how often the headaches occur. Hope you get better!
  • b2wc97455
    b2wc97455 Shorshus

    Posted

    Thanks \\shorshus, i tries that, it won;t work for me I am afraid...well, each person different you see..good luck to you then..of course if its managed by triptan or any medication then carry on with it..the health care professional only operating as a last result. Mostly in the UK , firstly they have to follow NICE guide line, 1. change their life style 2. managing by medication combine with pai management (physio etc) , then last option will be operation..so I suppose you are lucky..
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