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  • Chiari Anyone????

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    Old 03-02-2005, 05:29 AM   #16
    Kean
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    Re: Chiari Anyone????

    Quote:
    Originally Posted by jellebeans
    yes doctors are a**holes!!! and i really cant stand the way that if they cannot see anything wrong they put it down to stress,deppression and say its all in the head!!!!
    do you know if the severe eye pain could be apart off chiari?
    you have had your surgery so maybe a pain free day isnt that far away for you x fingers crossed xtake care
    they're not a**holes...they're just very busy people....and its a job to them. They have procedures provided by health service to follow in order to gain their diagnosis. So obviously they have to rule out the easy ones first. And i expect 99% of people who go to quacks with these symptoms are stress related. Thats why you have to keep pushing them and eventually they will get the message. Im hoping anyway. Seeing my neuro next week.

    kind regards

    Keanos

     
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    Old 03-02-2005, 06:19 AM   #17
    jellebeans
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    Re: Chiari Anyone????

    [QUOTE=Kean]they're not a**holes...they're just very busy people....and its a job to them. They have procedures provided by health service to follow in order to gain their diagnosis. So obviously they have to rule out the easy ones first. And i expect 99% of people who go to quacks with these symptoms are stress related. Thats why you have to keep pushing them and eventually they will get the message. Im hoping anyway. Seeing my neuro next week.

    kind regards

    Keanos[/QUOT

    well i hope your neuro isnt the same as mine cause you would soon change your opinion!!!!!
    best off luck x

     
    Old 03-02-2005, 07:04 PM   #18
    kirafaye
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    Re: Chiari Anyone????

    I just claim a majority of them are a-holes....not because of what they are trying to diagnosis us with but the way they do it in the why that implies u are stupid and to stop complaining.....I suppose I am just bitter that it took 6yrs of contant crippling pain for doctors to even just say ok ur willing to pay go get an MRI. So cause of that I almost definatly have permemnant spinal damamge that could have been prevented with the MRI we BEGGED for 6yrs ago and I could have had a normal life....I'm just bitter cause I'm still to tired to live a normal life even after surgery.....there ARE good ones out there butthey are few and far between it seems.

     
    Old 03-02-2005, 11:04 PM   #19
    MustangFilly
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    Re: Chiari Anyone????

    Jellebeans, there is no specific “order” that the symptoms occur in, nor particular symptoms that are worse for everyone. Each person can suffer differently from this disorder because it depends on what parts of your brain are experiencing pressure and also on if/where your spinal cord is impinged.

    Yes, eye pain can be a symptom, due to pressure on certain nerves. That “pressure” in your head seems most telling to me. Is it worse when you bend over? Sneeze? Have a bowel movement? Those things are typical of Chiari.

    I’m sorry you are not receiving support from your partner. I “lost” my husband to this illness. He couldn’t handle it and left after 14 years, but not before becoming a mean, brutal alcoholic and taking all his hatred for the disease out on me. Then I thought I met someone else, and he went the same route in the end. Now, whenever I meet anyone, I tell them upfront that I have MS and Chiari, and they go away before I get a chance to get attached. LOL I’m prepared now to be “alone” for the rest of my life. My daughter says it’s because I’m “too strong” of an individual at THAT is what scares men off, but I see the fear in their eyes when I tell them, and I know what it really is. The last guy said that even though I’m doing fine now, he was afraid that “someday I’d get REALLY sick, and he’d have to take care of me”. Yeah, right!

    Luckily, I have a very close, tight-knit family, so who needs men, right?

    As for the doctors, I guess that we have to understand that Chiari is still a little-understood condition, that until recently, was only ever diagnosed post-mortem (after you were dead, during the autopsy!), so treatment has come a LONG way in a very short time. Doctors ARE very busy, and need to find time to be educated about these things, but unfortunately, the conditions that they treat more commonly have to come first on their educational and treatment schedules. Thankfully, there are Chiari centers and specialists popping up. Do some more research, Jellebeans – I bet you can find one in the UK, and they may be willing to see you without a referral if you present a good case to them. I spoke to the doctors at The Chiari Institute on Long Island, and they would have seen me if I could have got there.

    And even without a diagnosis, a pain management specialist should be willing to work with you to help you get back on your feet. Often they don't KNOW where the pain is coming from, but they do know how to treat it.

    Good luck to both of you!

    MustangFilly

     
    Old 03-03-2005, 12:01 PM   #20
    jellebeans
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    Re: Chiari Anyone????

    hi,mustangfilly,yes my pain is worse by coughing etc.
    i do see a pain doctor at my migraine clinic where ive had various pain injections and exercises to do.but none works for me anymore.
    im going to take your advice on trying to get seen without a refferal and have already started my letter to send along with my scan pictures .to the neuroligist at my nearest hospital.hopefuly this will get me somewhere.
    im sorry that your illness doesnt help with your relashionships too.i know it must be hard for our partners but it is 100 times worse for us who are suffering.i do sometimes think we would be better of without them!!
    im also a believer in that theres someone for everyone,so maybe we just havent met mr right yet as mr right would love us whatever!!!!!!!!
    thank you for your helpful advice x

     
    Old 03-04-2005, 01:36 PM   #21
    MustangFilly
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    Re: Chiari Anyone????

    Jellebeans, in my experience, pain injections treat the immediate problem, but are short lived and, for those of us that have CHRONIC pain, become too quickly tolerated, so that they no longer work. The slow-release medications such as MS Contin (morphine), OxyContin (oxycodone), and Codeine Contin keep a continuous, steady dose of medication in your bloodstream so that the pain never gets a chance to get a hold of you and beat you up. You don't get the "highs" and "lows" from these meds that you do from most injection types, either. (OxyContin does have a bad rep, though, and I'd stay away from that one). I've used both Codeine Contin and am now on MS Contin, and both have been EXCELLENT.

    Perhaps ask your doctors if you could try one of these drugs to get your pain under control? THEN you could get your LIFE back.

    GOOD LUCK!
    MustangFIlly.

     
    Old 03-05-2005, 02:26 PM   #22
    jellebeans
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    Re: Chiari Anyone????

    hi mustangfilly,
    thanks for advice on pain meds, will definatly be asking to try some!!! and yes pain shots did work for my eye pain the first time but second time round did nothing and my doctor say its not something they can keep repeating anyway.
    i feel terrible this last week and today my arms and legs so painful!
    also getting bad pains down the middle of my back but not like a back acche,just pains,ive had them before but they dont usually bother me today they are!!ive been stuck on the sofa all day! is that a chiari symptom??
    going for some blood tests at hospital wednesday so im taking my mri pictures with a nice little letter to leave in reception for neuroligist!! hopefully he wont just send them straight back to me!
    jellebeans
    also could you tell me if chest pain and stomach pain like a burning sensation could be related to chiari? thank you

    Last edited by jellebeans; 03-05-2005 at 02:32 PM.

     
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