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Thread: Dad just diagnosed--requesting information

  1. #11
    GBMsibling, I agree with the run around, my mother had made an appointment about a week prior to her going to the ER with her PCP regarding this sudden onset dyslexia problems she was having and of course being that its January its update all your patient information, and its taking her like 3 or 4 attempts to fill out her social security number correctly. Stupid PCP office isn't horribly alarmed (they got a NASTY letter from me on that one) and says well we'll order a CT scan and refer you to a neurologist. Needless to say their referral to a neurologist and request for a CT scan was a total waste of time thanks to a trip to the ER. But yes once at the ER, it was discovered immediately, of course initially everyone was suspecting it was a TIA or Stroke...big surprise there. Sad when you really wish the outcome had of been just a stroke. But we have a huge hospital system here, that includes several smaller community based hospitals, and of course what we fondly refer to as the big house lol. She was sent right over to the big house just as soon as they had the dex going and keppra administered. We were very fortunate too, one of our best neurosurgeons in the area was on call that night as well. I had asked one of the ladies I work with who is a really good neurosurgeon in the area, as this until recently was totally out of my area of knowledge, and she mentioned Dr. Rodrigue's name and I just about flipped when I found out that was who had been on call that night and got my mother's case. She really is amazing.

  2. #12
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    Yeah-- it has to be a good ER. My sister had made a trip to our local ER because of acute head pain and confusion, six weeks before she was diagnosed. They told her to take a week off work and get some rest.

  3. #13
    We were also misdiagnosed at the ER of our local community hospital.

    One of my doctor relatives said "why did you go there when you were 'near' (20 miles) some other major ER's?"

    Well, we thought my dad was a little cold, we didn't think he had a [email protected]#$# brain tumor. God, it's like a bad movie or something.

    I called the neurologist today and asked about the possibility of dex. He said he is reluctant because my dad's scans suggested this was a very slow-growing tumor and that his brain showed very little edema, which is one of the reasons he was misdiagnosed as having a stroke. I don't get it...maybe it's slow growing but my dad's symptoms are sure progressing. A month ago he was pretty normal. Now he can barely walk, can't eat without stuff falling out the sides of his mouth, and is incontinent.

    The neurologist did suggest to bring my dad in sooner than his original appointment (next week) to rule out an infection that could be causing these symptoms. I don't think my dad is showing any signs of an infection and he was checked out for a UTI in the ER.

  4. #14
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    Hi luvmyfather. Sounds like we are in a very similar boat. My dad has had a few months of memory loss but has deteriorated fairly rapidly in the past month or so, its now at stage where its almost like a goldfish. He has no other symptoms except being perhaps a little clumsy on his feet. He was complaining of feeling ill on Feb 23rd so his wife took him to A&E (ER) and after a few days they did an MRI scan which showed a tumour which was 'likely a glioma' according to the radiologists report. Anyway he had his biopsy last Monday (10th) and was sent home soon after, and we were told to expect an outpatients appointment in a few weeks time. So all this again suggests a lack of urgency which leaves you to draw the conclusion that either the medical staff don't care or don't believe it to be too serious. Interestingly in the case of my father he has two small tumours (about quarter sized or 50p piece) on the occipital lobe but only his memory has been affected which I believe is part of the frontal lobe. The MRI scan showed a load of oedema but the tumours were ghostly in appearance and had no real defined edges which for now I will take as a positive as looking at google images of MRI of GBM these were a lot different. Anyway I guess none of this is of no real help to you except that there is someone else out there in the same predicament as yourself.

  5. #15
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    If there's very little edema then Dex might not improve him much anyway. And it is heavy on the side effects; definitely not one of the fun drugs.

  6. #16
    Quote Originally Posted by GBMsibling View Post
    If there's very little edema then Dex might not improve him much anyway. And it is heavy on the side effects; definitely not one of the fun drugs.
    That is pretty much verbatim what our neurologist said.

    Muppet676, I wish I had something more useful to say, but I am really sorry you are going through this. I don't understand, if symptoms are progressing, why this isn't taken more seriously...

    I have been down the waiting-for-results road with my mom who had pretty advanced cancer. So I have gotten used to the constant anxiety and uncertainty, but mainly in the way that someone in jail might get used to having a loaded gun aimed at their head.

    Best wishes to all of us.

  7. #17
    I agree, I know you are advocating for your father and want the best care possible. But if there is not much edema dex really might not be the best option for him, and dex comes with SIGNIFICANT and serious side effects. Benefits really need to be weighed against the risks of the medications. If there were any other options that might provide me improvements, I'd seriously consider those over Dex if at all possible.

  8. #18
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    What are the side effects of dex? My dad has been on 8mg/day for the past couple of weeks and can't say I've noticed much difference compared to before?

  9. #19
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    Quote Originally Posted by muppet676 View Post
    What are the side effects of dex? My dad has been on 8mg/day for the past couple of weeks and can't say I've noticed much difference compared to before?
    They vary from patient to patient, and can include a surge in appetite, weight gain, muscle wastage , Cushing’s syndrome (“hamster cheeks”), a rise in blood sugar, and irritability. They take time to have effect.

    It's a balancing act, the ideal is the minimum dose effective to reduce the effects of oedema, but any dose has to be reduced gradually. 8mg is a moderately high dose, would be surprised if there are no side effects. Talk to his NO to see if the dose can be reduced.
    Wife died from a GBM, November 2012. The full story in this thread

  10. #20
    Dad has been started on dex. The good part of this is he is awake more and eating again. The bad part is he keeps getting up and then falling over, not realizing that he has no balance any more. He requires 24/7 attention.

    My mom also has cancer and I have a small baby. We have hired someone to help; she starts next week.

    However, I don't know how much longer we can keep this up, and I am terrified.

    We will see a neurosurgeon tomorrow, however with a tumor this deep (in the basal ganglia) I seriously doubt much can be done. At least if we have a prognosis saying there are months left, we can put my dad on hospice and get some desperately needed help.

    I am no longer afraid of losing my dad. What he is going through now is worse than dying.

    I am afraid of the hell he and my mom are going to go through before he is gone.

 

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