Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 28

Thread: On being scared, worried ...

  1. #11
    Senior Member
    Join Date
    Jan 2003
    Location
    Madison,Wisconsin, USA
    Posts
    1,498
    Dr Young, Please take ABSOLUTELY no offense with this, but it is the norm to be treated this way by physicians, even specialized rehab doctors. Heaven forbid that we should push for answers or take up more than our alloted 15 minutes of their time. Caregivers learn quickly that a knowledgable physician is worth their weight in gold. I always read with interest the posts on what should be done and tested with SCI only to find physicians unwilling to take the time or interest in getting answers. It is the reason that I try to stay abreast of the Care section here, to learn enough to present my case to an MD and hope they'll go with my plan in an attempt to get me off their back! Whenever I take Jim into a physician they always express amazement that he is in such good shape, I see this as a shame that so many can't get good care. I know it's always suggested to travel til you find a good doctor, but that is not always feasible. It's very frustrating. Dr Wise, you and the nurses here provide an invaluable service for us. When I read that Amy felt like crying just to be getting some empathy to her dilemma-------well, it makes me so sad. I have had more than one tell me they would not want to live after sustaining a SCI and unfortunatly that attitude shows in their care.

  2. #12
    Senior Member
    Join Date
    Jul 2004
    Location
    Pickering Ontario Canada
    Posts
    1,023
    Hi Ami. I'm sorry you guys are going through such a rough patch. It sounds very scary. I have no wisdom to offer, but thankfully Dr. Young is here to help in that area. I can only offer my understanding and support. My husband has had a very rough time the last few months ~ bladder infection, after bladder infection. It's a terrible feeling wondering how much their tired bodies can take. It's also draining being on high alert all the time waiting for the next crisis.

    Take care and know that we are thinking of you and sending positive energy for answers to your questions, and health for Chad.


    Shelley

  3. #13
    Deb,

    It's okay. I don't take any offense at all. Doctors are quite critical of each other amongst themselves. I use to have a chairman of surgery who would glare at another doctor at M&M (Morbidity and Mortality) rounds and say in a soft growl, "why didn't you take a 45, point it to his head, and pull the trigger instead," referring to a botched surgical procedure. Good doctors learn from criticism and do not take offense.

    The best doctors know when they don't know and don't pretend to know. I think that I would prefer a doctor like the ones you describe than one who dismisses what Ami was describing as a "spasm". As Ami said, that doctor probably did not know what he was talking about. At least your brother's doctors were telling you in a round-about-way that they don't have the experience.

    You are right, however. Due to the pressure of having to figure out what is going on and make crucial decisions in 15-minutes slots, medicine has become too reflexive. Some problems that people have are too complex to be digested and assessed so quickly, especially a problem where multiple doctors have looked at the problem and have not come up with an answer.

    I don't know if you ever listen to the show Car Talk on National Public Radio, the "Click and Clack, the Tappet Brothers"... I like the idea of having two experts think about a problem and discussing their thoughts out loud because there are frequently multiple answers. I also like their use of "stump-the-chumps" callbacks to see if their diagnoses were correct and their solutions worked.

    Wise.

    Quote Originally Posted by lilsister
    Dr Young, Please take ABSOLUTELY no offense with this, but it is the norm to be treated this way by physicians, even specialized rehab doctors. Heaven forbid that we should push for answers or take up more than our alloted 15 minutes of their time. Caregivers learn quickly that a knowledgable physician is worth their weight in gold. I always read with interest the posts on what should be done and tested with SCI only to find physicians unwilling to take the time or interest in getting answers. It is the reason that I try to stay abreast of the Care section here, to learn enough to present my case to an MD and hope they'll go with my plan in an attempt to get me off their back! Whenever I take Jim into a physician they always express amazement that he is in such good shape, I see this as a shame that so many can't get good care. I know it's always suggested to travel til you find a good doctor, but that is not always feasible. It's very frustrating. Dr Wise, you and the nurses here provide an invaluable service for us. When I read that Amy felt like crying just to be getting some empathy to her dilemma-------well, it makes me so sad. I have had more than one tell me they would not want to live after sustaining a SCI and unfortunatly that attitude shows in their care.
    Last edited by Wise Young; 04-22-2006 at 08:53 PM.

  4. #14
    Ami,

    So sorry that you are going through all this with Chad. Also sad to hear that he is having to deal with all this new things added to what is already hard enough.

    Your description of his spells/seizures remind me of what my brother went through before he had a stroke which paralyzed him. He would do the same thing. It was hard to watch him going through this since he would not agree to have the doctor check him out. He knew he had a problem with his blood pressure but would not accept it. He had several of these episodes until his leg became a bit affected with paralysis. Still being a stubborn man, he would do nothing about it. Until he had the biggest stroke that left his entire left side paralyzed. That was the saddest day for me in my entire life. My dearest father figure brother ending in a w/chair. It had been a big concern to me when he kept having these episodes but the day of his ending stroke broke my heart. I would recommend too that he be checked (blood pressure) when he is going through the seizures/fainting spells. Also possibly seeing a good heart specialist to check out if it may possibly be a TIA(Transient Ischemic Attack) that may be causing it. Never hurts to make sure.

    Hope this gets better for both of you. Will keep you both in my thoughts and prayers. Do let us know of any further updates.

    (((Hugs)))

    Raven

  5. #15
    Senior Member
    Join Date
    Jan 2003
    Location
    Madison,Wisconsin, USA
    Posts
    1,498
    Ami, try urging water throughout the night and a full glass about 1/2 hour before getting Chad up. Also put a b/p cuff on before getting him up and be ready to try for a b/p. Although it could certainly be a real seizure this is a simple, non-threatening way to check it out. I have to give Miss November my gratitude for this remedy. After being on Dilantin several months I took Jim to a different Neurologist, had an EEG done and he agreed that it wasn't seizures. Always wise to check it out.

    Dr Young, Click and Clack are pretty cool, great for a chuckle.

  6. #16
    Senior Member zillazangel's Avatar
    Join Date
    May 2004
    Location
    North Carolina, USA
    Posts
    3,399
    So I have regained some perspective and seriously charged m batteries tonight. I took my darling boy out to a speical mommy/son dinner at a "grown up" restaurant and we had the BEST time. He is at such a wonderful age where he can converse like a grown up but is so cute since he is just a little kid. He was so well behaved and all the waitresses fawned over how cute he was. He is having serious ear surgery next month and we talked alot about it and he is excited to go to special "doctor sleep" since nothing will hurt then vs. just regular sleep. He is such a GREAT kid, seriously. Then we came home and played all together in bed and giggled, laughed, told stories, talked about things and just had a truly wonderful family time. It was this that I missed most and I got some of it again tonight.

    I have eagerly read Iand reread) all these responses and I cannot tell you how grateful I am to this community and the collective wisdom and incredible kindness of people who take the time to help me/us despite never meeting us. If I can ever repay this kindness, please just ask and it's yours.

    So short story, I'm feeling alot better about how to plan the next round of attacks on figuring out his health issues. And recharing. And at least one thing good that may come of it is that I betcha no one, not a single soul, thinks I'm a devo now!! *sly grin*

    THANK YOU ALL, you have no idea how much you have helped me today.
    Last edited by zillazangel; 04-23-2006 at 12:13 AM.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  7. #17
    It's threads like this that remind me what CC does for injured people and their loved ones every day. You'll sort it Ami - your determination and love shine through all the shit.
    C5/6 incomplete

    "I assume you all have guns and crack....."

  8. #18
    Senior Member wheeliecoach's Avatar
    Join Date
    Dec 2005
    Location
    East Haven, CT
    Posts
    2,600
    Ami-

    While my brother did not have SCI...he did have the seizures that Chad seems to be experiencing. They are scary....and I feel your pain as you two work through them. I remember him not knowing who I was for 2 days...and doctors telling me well...that sometimes happens. Well...I did not want that to happen. I wanted my little brother back the way he was.

    It may be as easy as putting him on Dilantin (sorry if that is spelled wrong), which is what they did for my brother. There seems to be no ill affects from the seizures since then...and he is back to his old self (which, depending upon how you look at it...could be a good or a bad thing ).

    Basically, what I am trying to say is take the information that has been given to you...and find someone who will listen. It is not easy to watch a loved one go through this...but it is even harder to have doctors act like they know everything...when in the end...they do not. If you need anything...let me know...I am here for you too...just like everyone else here on this board. I will be thinking about you, and hoping for quick (and correct) answers.

  9. #19
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Location
    Wisconsin USA
    Posts
    11,007
    Dumb but easy question Ami. Does the yeast smell? I mean after bathing and drying and going back 2 hours later is there an odor about him?

    Has he had a recent MRI or CT from top of skull down to brain stem/C1/2?

    And I tell ya, once we go down getting back up takes time. This past winter started with pleurisy and everything went down from there. I lived in bed, worked the phone from bed and only made it to the DC Friday night because I was loopy on Percoset and Aleve. Sorry for the inappropriate jokes Wise. But I have eaten more vitamins, cut back on meds like Darvocet and Ambien and take Tylenol PM instead now and force myself to eat high protien foods and take extra vitamin C. The C seems to help with yeast as well as things like DanActive Lite drinks.

    I have willed myself into our cruise this Friday! So no, even from this side you don't sound selfish. Glad you had a good day out with your son. Hang in there gal. Just one day at a time.

    Sue
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  10. #20
    Senior Member dogger's Avatar
    Join Date
    Jun 2002
    Location
    Mitchell , Qld. Australia
    Posts
    2,239
    JohnnyBOY4U , I moved your question into it's own thread here
    Every day I wake up is a good one .

Similar Threads

  1. worried all the time?
    By tegdirb in forum Life
    Replies: 14
    Last Post: 11-22-2003, 10:40 AM
  2. Worried about side effects
    By hamilw in forum Pain
    Replies: 10
    Last Post: 09-05-2002, 09:53 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •