Chiari malformation (kind of a rant)

automaticflowersautomaticflowers Posts: 3,465Registered Users
Do you know anyone who has this? How much of a PITA was it for them to get the diagnosis and treatment?

My 25-year-old brother was officially diagnosed with it this week, after the doctors (primary care and a neurologist) finally stopped playing with themselves. :cussing: But now they say they're not going to help him because his condition "isn't that bad."

From the Mayo Clinic, in case anyone doesn't know what CM is:
Chiari malformation is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.
For at least three years, my brother has been dealing with constant pain. It started in his shoulder and spread through his whole body. After a while, it started affecting his motor functions. He shakes, he has trouble lifting things, and his left arm and both legs are losing functionality.

He used to play basketball, and now he walks with a cane. I've watched him lose his balance and fall into shelves at the grocery store. I've seen him curled up in so much pain he can barely speak or do much of anything except cry. He takes painkillers and sleeps a lot nowadays. He had to quit his last job because they'd make him work eight-hour shifts, on his feet, with no breaks. The resulting pain was making his heart race like crazy, to the point where an ultrasound had to be done to examine it.

So yeah, I find it extremely hard to believe that his condition isn't that bad. That there's nothing they can do aside from possibly getting him addicted to painkillers.

He has three children. I'm afraid he's going to end up in a wheelchair or worse, when it could have been prevented.

I'm just so angry! How can doctors turn their backs on their patients like this? He obviously needs help! I'm 3,000 miles away from him right now, but I'm inclined to hop a plane just to personally punch them all in the face.

:sad11:

Comments

  • curlypearlcurlypearl Posts: 12,228Registered Users Curl Connoisseur
    Of course your brother needs treatment and the sooner the better. Where is he? He needs to be at an excellent teaching hospital or medical center where he can be treated excellently.

    I am so sorry to read this post. It sounds absolutely dreadful. Please take heart and encourage your brother to get treatment right away, even if it means traveling to someplace like the Mayo clinic or to NYC.
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  • divamisstdivamisst Posts: 293Registered Users
    I'm so sorry....I don't know anything about that condition, but I DO know that you and your brother should do a search for a doctor that specializes in the treatment of this type of condition and go see them! Obviously his doctors are going to be a pain in the ass about this, so I say you guys find someone that deals with this and knows what's going on that can actually HELP your brother....it sounds like he needs it. Sending good vibes out to your brother, too!!
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  • automaticflowersautomaticflowers Posts: 3,465Registered Users
    Thank you. :)

    As it turns out, he lives in Central New York and there's a place in Long Island called the Chiari Institute. My mom said she's going to see if she can help him line up an appointment with them directly.

    It just would have been nice to have the cooperation of his local doctors. I'm shocked they even came up with a diagnosis, since for the past 3+ years they've either been accusing him of "faking it" or throwing out random illnesses without even testing him (Parkinson's, fibromyalgia).
  • mandatoryfunmandatoryfun Posts: 878Registered Users
    Thank you. :)

    As it turns out, he lives in Central New York and there's a place in Long Island called the Chiari Institute. My mom said she's going to see if she can help him line up an appointment with them directly.

    It just would have been nice to have the cooperation of his local doctors. I'm shocked they even came up with a diagnosis, since for the past 3+ years they've either been accusing him of "faking it" or throwing out random illnesses without even testing him (Parkinson's, fibromyalgia).

    They sound like crappy doctors...he should've given them the boot after they accused him of "faking it." I'm not sure what your brother's insurance is like, but he should definitely seek out other doctors and get alternative opinions on his condition. He certainly needs treatment and any doctor who is committed to his/her job would seek to help him, not write him off.

    That said, I don't know much about this condition. I really hope things improve for your brother...this sounds like such a terrible thing to be going through. :(
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  • divamisstdivamisst Posts: 293Registered Users
    Thank you. :)

    As it turns out, he lives in Central New York and there's a place in Long Island called the Chiari Institute. My mom said she's going to see if she can help him line up an appointment with them directly.

    It just would have been nice to have the cooperation of his local doctors. I'm shocked they even came up with a diagnosis, since for the past 3+ years they've either been accusing him of "faking it" or throwing out random illnesses without even testing him (Parkinson's, fibromyalgia).

    That's just beyond ridiculous....seriously. I would totally be complaining to whoever runs that place that your brother's treatment has potentially been delayed because his doctors are a**holes (but that's just the pissy Sicilian in me). Then I would get him the hell out of there and to the Chiari Institute. Good luck, I hope they can get him in soon!
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  • kenzie!kenzie! Posts: 5,055Registered Users
    That's horrible!! I hate it when doctors don't listen....some people shouldn't have taken the Hippocratic oath. They obviously can't live up to it!

    I don't know much about this condition, but I honestly hope that he gets well...as soon as possible!! Its such a terrible situation.
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  • automaticflowersautomaticflowers Posts: 3,465Registered Users
    They sound like crappy doctors...he should give them the boot after they accused him of "faking it."

    He's been through several doctors. Apparently they all went to the same "medical school" where their diplomas were written in crayon.

    As far as insurance... :lol: Of course he can't get private insurance because of his condition, so he's on Medicaid. Doctors seem to treat that like it's a big joke. I've got no clue if it would cover a surgery or not.

    And I know I've b*tched about this before here, but his fiancee still doesn't have a job. He clearly can't work, and she plain ol' doesn't want to. She wants to be a SAHM, which would be fine if my brother could work! She babysits for a friend, which obviously isn't enough to support a family. Anyway, I digress.
  • kenzie!kenzie! Posts: 5,055Registered Users
    And I know I've b*tched about this before here, but his fiancee still doesn't have a job. He clearly can't work, and she plain ol' doesn't want to. She wants to be a SAHM, which would be fine if my brother could work! She babysits for a friend, which obviously isn't enough to support a family. Anyway, I digress.

    That's just being selfish. Sometimes you have to sacrifice for the people you love. Someone will still be home with the kids. They obviously are going to need money for things, she needs to go out and get a job, ESPECIALLY since he can't work.
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  • divamisstdivamisst Posts: 293Registered Users
    When your brother gets an appt. at the Institute, they should have medical social workers who will be able to help with the details of Medicaid and what/how much of his treatment it will cover. They will also be able to let him know if there are programs that offer financial assitance/grants for treatments or medications (my dad is on Medicaid and we got all the info on this stuff for his cancer treatments and stem cell transplant). It varies from state to state as far as coverage and calling the office usually sucks, but most of the time medical social workers are pretty helpful.
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    want to try: EVERYTHING!! (you guys are turning me into a big-time PJ!)
  • crimsonshedemoncrimsonshedemon Posts: 2,098Registered Users
    That there's nothing they can do aside from possibly getting him addicted to painkillers.
    :sad11:


    I'm sorry your brother is having to deal with this. Unfortunately, his experience is all to common.

    I don't know anyone with CM but I do know about pain managment. I have systemic lupus and fibromyalgia.. among other things.
    I've been in pain management for the last few years and it's changed my life. It has given me my life back. I'm able to play with my children, attend their activities and participate in my life.

    Simple distinction between dependence and addiction. Addiction is a set of psychological behaviors that focus on obtaining a drug for non-pain purposes focusing on analgesia here). So if you have ever called in a script to a pharmacy posing as office staff, if you have ever bought the drug on the street, if you have ever taken the drug for purposes other than for pain (to get numb, to "relax" when you aren't in pain, etc.) then you are engaging in
    addictive behaviors.

    If you are taking the pain medication EVERYTIME because you are in pain or you are attempting to keep your blood levels up to keep pain down to a minimum BUT if you suddenly stopped the med you suffer through opiate withdrawal, aka "jonesing", then you are dependent on
    the medication. You are NOT an addict.

    There are blood pressure meds, e.g., clonidine, that you become dependent on and can have nasty rebound
    hypertension if you suddenly stopped. Are you then a clonidine addict?

    Taking pain medication for physical pain is dependence. Taking pain medication for emotional pain is addiction.

    Opioids/opiates don't typically work very well on nerve pain. Nerve pain is some of the most difficult to treat but there are drugs available like anti-seizure drugs, anti-depressants, etc.
    Your brother is in my thoughts and prayers.
    I'm sure you've seen this info but just in case..

    http://www.ninds.nih.gov/disorders/chiari/chiari.htm

    http://www.neurosurgerytoday.org/what/patient_e/chiari1.asp

    http://www.pressenter.com/~wacma/

    http://www.conquerchiari.org/index.htm
  • The New BlackThe New Black Posts: 16,754Registered Users Curl Connoisseur
    wow...never heard of that condition. I'm sorry about your bro Utopia. Is there anything they can do to relieve his symptoms?
    How can doctors turn their backs on their patients like this?
    See the Tell Us About Health Care in Your Country thread...

    ETA: nm on what can be done about his symptoms...I just read on...
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  • misspammisspam Posts: 5,318Registered Users
    I've never heard of that condition. I hope your brother is able to find the help he needs to manage the pain and get better treatment. Good luck and best wishes!
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  • NetGNetG Posts: 8,116Registered Users
    Those doctors are disgusting.


    I just sent you a PM which will hopefully be helpful. :)
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  • automaticflowersautomaticflowers Posts: 3,465Registered Users
    I'd never heard of it either. It's apparently quite a rare condition, but new technology makes it easier to diagnose now.

    He had spinal meningitis when he was an infant, so I'm wondering if that had anything to do with causing this, or if he was born with it. There are four types of Chiari and I'm not sure which type his is.

    divamisst, crimsonshedemon, NetG... THANK YOU so much for the advice! I'm passing all of this info to my brother and my mom.

    And thanks to everyone for your support, it really means a lot. :) He's my baby brother and my best friend, and virtually nobody has been on his side.

    I was doing a lot of yelling yesterday and feeling pretty useless. All your tips are enabling me to help him and I'm so grateful. Mom says I'm the only one he really listens to, so I'm armed with information and ready to nag. ;)
  • nynaeve77nynaeve77 Posts: 7,135Registered Users Curl Novice
    I'm so sorry, US. I hope your brother is able to see a dr. at the Institute very soon and they can help him.

    And your bro's fiancee needs to get a job. I love being a SAHM, but if something ever happened to my husband and he couldn't work, I'd be sending out resumes so fast your head would spin. That's so selfish.
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  • automaticflowersautomaticflowers Posts: 3,465Registered Users
    Agreed. She's a good mom and we get along pretty well (though it's like wading through molasses to get to know her), but to be honest I don't know if it's even occurred to her that she should get a job. Her family literally taught her that she wouldn't have to lift a finger as long as she snagged a man. (Ugh.)

    They get PISSED at my brother for being unable to work and support her. Their treatment of him has been truly appalling.

    I feel it's not my right to say anything to her, though sometimes I have difficulty biting my tongue. My brother knows how I feel... I like her, I hope that one day we'll be sisters, but I don't agree with her essential refusal to help support her own family during a really rough time. I just don't understand it.
  • nynaeve77nynaeve77 Posts: 7,135Registered Users Curl Novice
    If she won't do it to help your brother, why wouldn't she do it to help her kid?
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  • mrspoppersmrspoppers Posts: 7,223Registered Users Curl Novice
    I'm sorry he's in such pain without relief. I can't imagine. I'm not familiar with this disease, aside from what I read last night so I can't offer any advice. Surgery sounds brutal but if I was in pain like that, I'd want to at least consider it.
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  • kenzie!kenzie! Posts: 5,055Registered Users
    but to be honest I don't know if it's even occurred to her that she should get a job. Her family literally taught her that she wouldn't have to lift a finger as long as she snagged a man. (Ugh.)

    There is so much wrong with that....

    Is there any way you could (gently) suggest that she maybe begin to look for a job?? Maybe even something her kids could come along to?? My mom was a pre-school teacher when I was little. It meant that she could be in the same place as me but she was earning money, too.
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  • curlylauracurlylaura Posts: 8,352Registered Users Curl Neophyte
    That's awful utopiastars. Your poor brother. I can't believe any good doctor would leave someone in that situation. I'm now angry on your brothers behalf. I hope he gets the help he needs and soon.

    The girlfriend needs a kick up the arse.
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