One patient with glioblastoma still alive nine years later
by SarahGrey on Sun Feb 10, 2013 02:50 AM
I figured this subject would catch your attention...
My husband has been declining for the past few weeks (very fatigued) and in the past week his NO tried to adjust his seizure meds. He added one, reduced another. My husband immediately went downhill FAST. Every day. I thought I was losing him.
He looked drunk, couldn't sit without tipping over, couldn't open his eyes and they were glassy and wet, he became incontinent, and then couldn't stand and was mostly just sleeping. I called the NO several times, frantic and was told he was ok. (meanwhile he saw him on Tuesday and said he was ok - REALLY???) On Wednesday, he said if my husband was declining that quick- "it was time to put him in hospice!!!"
No. I called 911 and went to the local (good) hospital's ER. The neurologist there looked at him and immediately said he was overmedicated on seizure meds!
They lowered his doses by nearly half over a few days, did many tests (including a 48-hr EEG) and found he's doing very well and isn't even having seizures! Just one very small one (that they weren't even sure of).
Wednesday the NO said to put my husband in hospice. He couldn't walk, crawl, sit upright, have a conversation, stay awake, use the bathroom... Today (Saturday) - he is 100% better.
Just a note - PLEASE get a second opinion!!!
(PS - needless-to-say, yes, my husband has a new team of doctors now) :)
by karynk on Sun Feb 10, 2013 04:08 AM
Been there, done that, have that t-shirt!
One reason why when ppl ask questions, but feel different than the doctor, they really should trust their gut. You know your husband WAY better than any doctor.
Glad to hear that they got it straightened out!
by jpearson472 on Sun Feb 10, 2013 05:24 AM
great news thanks for sharing.. praise the Lord
by Bee_Rich on Sun Feb 10, 2013 06:16 AM
sarah, did you meetwith an epileptologist on friday?
jeez, its incredible what a dfference a proper brain tumor TEAM can make for us brain tumor patients. so glad to hear you changed providers.that NO needed to be fired!
Message for everybody: be seen at a major brain tumor center. Challenge your providers. document everything. get copies of all imaging, tests and records once a month or so & don't just blindly accept the doc's suggestions. do research and have copies of articles with you. I and my wife have had some discussions with providers.that got 'testy but respectful' but we were earnestly heard.. be ready for your appts., with a list of q's, symptoms, etc. have backup providers for second opinions. we switched to a family doc w/i the same health system that knows my NO and can discuss issues that she has observed/discussed w/me. bring goodies like baked goods in for the neuro staff and be on a first name basis with everybody, but mostly with the nurses and appt staff. they can make things happen when you really need things to move. and if need be, ask to see the dept chair, and respectfully discuss the failures and demand different personnell if that's what you desire. chairs need critical feedback, if they are to maintain quality programs.
I was in that EEG cap for 4 days in nuero icu back in december after a bad seizure and the team fine tuned my meds. i sleep more than most but can participate in activities if i pace myself.but i have been seizure free since dec.
by SarahGrey on Sun Feb 10, 2013 05:22 PM
thanks everyone!! :)
bee rich - yes, finally an epileptologist saw my husband and we're following up this week. what a difference!
ironically, my husband's original NO was from one of the leading NYC university hospitals. sheesh. unfortunately, after the initial diagnosis and treatment plan, the NO worked alone (and not with a team) and so we had to rely on his judgment alone...
thanks again and I'll keep everyone posted!
PS - so nice, for the first time in probably two months, my husband is having conversations with me and his personality is back nearly 95%... wow...
by phyllischarles on Tue Feb 19, 2013 12:44 AM
OH HOW TRUE, HOW TRUE..WE SPENT THE FIRST SEVEN WEEKS WITH THE BEAUMONT TEAM. ONE THING AFTER THE OTHER. AFTER SWITCHING TO UNIVERSITY OF MICHIGAN AND THE NO THERE ADJUSTING HIS MEDS; HE IS DOING MUCH BETTER. WISH WE WOULD HAVE STARTED OFF THERE. GOOD LUCK TO YOU
by SarahGrey on Thu Feb 21, 2013 05:17 PM
On Feb 19, 2013 12:44 AM phyllischarles wrote: OH HOW TRUE, HOW TRUE..WE SPENT THE FIRST SEVEN WEEKS WITH THE BEAUMONT TEAM. ONE THING AFTER THE OTHER. AFTER SWITCHING TO UNIVERSITY OF MICHIGAN AND THE NO THERE ADJUSTING HIS MEDS; HE IS DOING MUCH BETTER. WISH WE WOULD HAVE STARTED OFF THERE. GOOD LUCK TO YOU
On Feb 19, 2013 12:44 AM phyllischarles wrote:
oh wow, im so happy your husband is doing better! :)
and yes, my husband starts seeing a new NO full-time next week. we cant wait! this new doc seems sooo 'on top' of things and we're very hopeful he will continue to help my husband improve... God-willing...
by SarahGrey on Thu Feb 21, 2013 05:18 PM
PS - how scary and sad that these doctors truly hold our loved ones' fate, health and quality of life in their hands...
thank God for second opinions!
by bpp30m on Fri Feb 22, 2013 07:36 AM
On Feb 21, 2013 5:18 PM SarahGrey wrote: PS - how scary and sad that these doctors truly hold our loved ones' fate, health and quality of life in their hands...
thank God for second opinions!
On Feb 21, 2013 5:18 PM SarahGrey wrote:
And some of em just dont realize how much we common folks rely on them. Im not really about bashing doctors because i think some of them actually care, to some degree, about patients and their loved ones and Ive seen and read great things about the doctors at Duke U but when my son got really sick with the lepto, our local neurosurgeon called them and told them about the sickness and his symptoms (we had been going to Duke for roughly 8 months prior) they told him, and i quote "Dont send him here, we are only his consultants". Talk about heart break and pissed offedness at the same time. i felt as if we had been betrayed because we had nowhere else to go for a few days and we were already petrified that we were going to lose him soon. The great Mayo clinic bailed us out and i absolutely am so glad it happened like it did because i think the world of his NO now. You can just tell he isnt thinking about his tee time or his getting his porsche cleaned when hes giving you good/bad news.
Anyways, i totally agree with you Sarah, Thank God for second opinions
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