working woman
New member
I am really sorry and saddend to hear that Brent. Countinued prayers here
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Dargo's little girl needs our prayers
- Thread starter working woman
- Start date
Dargo
Like a bad penny...
Thanks Brian. Unfortunately, she is still living with a leaking vein right at her brain stem. All neurosurgeons have agreed that it would be fatal to try to reach the vein via surgery. That was attempted but aborted. She has the patched together skull as evidence. One specialist at Harvard was going to try to go in through her jugular vein and 'patch' the leak from the inside but, after looking closely at the 5 tesla dye contrast MRI, he said there were too many critical turns to make to get to that place and the odds of having a fatality in surgery were higher than the chances of having success.
So, that leaves her basically living with literally blinding pain several times per week. She is stubborn and tough. She not only went to college, but is staying there this summer and going to go year round to make up the year she lost. As far as any help? I don't know. Even having her as an in-patient and giving her Fentanyl (100X as powerful as morphine!) and Sufental (10X as powerful as Fentanyl - described as the most potent pain killer known) she only gets minor relief.
What the neurologists now are leaning towards is basically a genetic defect. I've had terrible migraines several times a month since I was in college (about the age of her onset). My dad had terrible migraines from the time he was 18 until around age 50 or 51, when they subsided. My grandfather and great-grandfather had the same symptoms as my father. Since no MRI machines were available then, they tend to think that it is genetic. My insurance will not pay the $15k for a 5 tesla MRI to have my brain scanned. I've had several 1 tesla MRI's done over the years, but I'm told the difference is like watching TV on an old black and white TV with tin foil on the rabbit ears vs Blue Ray on a HD TV. The only good thing (or bad, depends on how you want to view it) is that my ancestors have pretty well all lived to their upper 90's with one hitting 100. So, if that is the case, it doesn't kill you or shorten your life; it just makes it miserable for about half of your life.
Due to the strength of the medications needed to give her any relief, she has to go in to IU's medical center for pain. The problem is, as I can attest, you can't walk, drive and don't want anyone moving you when you're in that much pain. But, obviously, medicines that strong are too dangerous to be administered outside a full medical facility with constant monitoring. As many know, in Nam, it was common for a medic to just give a fatally wounded soldier an intentional OD of morphine to put him out of his misery. The stuff she is talking about is at a minimum 100X as potent as that. I suppose that's a long winded reply for "we're stumped" for any solution or remedy.
So, that leaves her basically living with literally blinding pain several times per week. She is stubborn and tough. She not only went to college, but is staying there this summer and going to go year round to make up the year she lost. As far as any help? I don't know. Even having her as an in-patient and giving her Fentanyl (100X as powerful as morphine!) and Sufental (10X as powerful as Fentanyl - described as the most potent pain killer known) she only gets minor relief.
What the neurologists now are leaning towards is basically a genetic defect. I've had terrible migraines several times a month since I was in college (about the age of her onset). My dad had terrible migraines from the time he was 18 until around age 50 or 51, when they subsided. My grandfather and great-grandfather had the same symptoms as my father. Since no MRI machines were available then, they tend to think that it is genetic. My insurance will not pay the $15k for a 5 tesla MRI to have my brain scanned. I've had several 1 tesla MRI's done over the years, but I'm told the difference is like watching TV on an old black and white TV with tin foil on the rabbit ears vs Blue Ray on a HD TV. The only good thing (or bad, depends on how you want to view it) is that my ancestors have pretty well all lived to their upper 90's with one hitting 100. So, if that is the case, it doesn't kill you or shorten your life; it just makes it miserable for about half of your life.
Due to the strength of the medications needed to give her any relief, she has to go in to IU's medical center for pain. The problem is, as I can attest, you can't walk, drive and don't want anyone moving you when you're in that much pain. But, obviously, medicines that strong are too dangerous to be administered outside a full medical facility with constant monitoring. As many know, in Nam, it was common for a medic to just give a fatally wounded soldier an intentional OD of morphine to put him out of his misery. The stuff she is talking about is at a minimum 100X as potent as that. I suppose that's a long winded reply for "we're stumped" for any solution or remedy.
Being married to a severe migrain sufferer, to the point of dibilitation, I feel for you man. The meds she takes aren't coverd by insurance either...
I will pray for your daughter, and hope that some day there is a remedy for her, as well as your family.
Hang in there, we're all pulling for you..
Best regards, Kirk
I will pray for your daughter, and hope that some day there is a remedy for her, as well as your family.
Hang in there, we're all pulling for you..
Best regards, Kirk
Dang Brent, that sucks (grin and bear it).
Have you considered Marvel's radiator Stop-Leak or similar? I'm joking on the brand but isn't there some sort of coagulant that could stop that thing from leaking? I understand it would have to be directed so it doesn't clog up elsewhere but does something like that exist?
Have you considered Marvel's radiator Stop-Leak or similar? I'm joking on the brand but isn't there some sort of coagulant that could stop that thing from leaking? I understand it would have to be directed so it doesn't clog up elsewhere but does something like that exist?
Thanks for the update. My heart aches for you and your daughter.
It's difficult for me to relate to the constant pain your girl is in having since I only suffered 3 or 4 migrains in my life. I sure as hell do remember the last one even thoughit was over 15 years ago.
It's difficult for me to relate to the constant pain your girl is in having since I only suffered 3 or 4 migrains in my life. I sure as hell do remember the last one even thoughit was over 15 years ago.
So sorry to hear the saga continues for Mel and your family Brent. More prayers on the way for Mel. I can't imagine the pain she must be enduring. Glad to hear she can focus on college and outside interests to some extent. That has to be a huge help to her to just keep her mind somewhat busy and off the pain and issues going on internally.
Catavenger
New member
My prayers go out to your family
As always Brent, the thoughts and prayers for Mel and you all continue.
Danang Sailor
nullius in verba
My best to you all Dargo. Our prayer go out to your family.
Cowboy
Wait for it.
Ditto.Brent,i am praying for possitive news soon for you and your family.
Dargo
Like a bad penny...
Thanks to everyone. Needless to say, this has been life changing for our family. Since she is hard headed (wonder where in the hell she gets that?), she insists on catching up with her class and is making sure she maintains a 4.0 GPA in college and is already starting to read books about taking the MCAT for med school. I sure hope they were serious at Harvard when they said that she was the type of student they would look for if she keeps her grades through undergrad school. I honestly think that she feels that if 5 generations of my family has had to suffer through this, she is going to be the physician who finds a cure.
LOL, it just dawned on me. While she is in med school, I'll have 3 other kids in college at that time. I don't know how accurate it is, but when I asked what it costs to go to Harvard med school, then specialize in a particular area, I was told "Oh, about a hundred grand a year". With the other 3 in college at that same time, I hope some can get some scholarships. Having a 4.0 GPA, valedictorian of your class along being involved in every sport possible along with leading community activities only gets you about $1000 a year in scholarships.
When I was in school, the valedictorian had a free ride at their choice of state schools. Changes in our grading system is what ended that I suppose. Some years, actually many years, my HS didn't have anyone with a 4.0 GPA. Now most high schools have a dozen or two. I wonder if undergrad colleges have gone that way as well?
Anyway, a very sincere, heartfelt, thank you to everyone. We are trying to make the best of a bad situation. If it puts my business in shambles, I'm still going to take off the entire time my kids are off from school this holiday season. I didn't see any of them, except Mel in the hospital, the entire last holiday season. Heck, I may bankrupt myself spoiling them this year.
LOL, it just dawned on me. While she is in med school, I'll have 3 other kids in college at that time. I don't know how accurate it is, but when I asked what it costs to go to Harvard med school, then specialize in a particular area, I was told "Oh, about a hundred grand a year". With the other 3 in college at that same time, I hope some can get some scholarships. Having a 4.0 GPA, valedictorian of your class along being involved in every sport possible along with leading community activities only gets you about $1000 a year in scholarships.
When I was in school, the valedictorian had a free ride at their choice of state schools. Changes in our grading system is what ended that I suppose. Some years, actually many years, my HS didn't have anyone with a 4.0 GPA. Now most high schools have a dozen or two. I wonder if undergrad colleges have gone that way as well?Anyway, a very sincere, heartfelt, thank you to everyone. We are trying to make the best of a bad situation. If it puts my business in shambles, I'm still going to take off the entire time my kids are off from school this holiday season. I didn't see any of them, except Mel in the hospital, the entire last holiday season. Heck, I may bankrupt myself spoiling them this year.