February 22, 2008
Brandon Update - UPDATED
Dee managed to do a little pushin' and proddin' and get someone to read the MRI from earlier this week.
We now know what kind of cyst is in Brandon's head.
Arachnoid Cyst. What we consider the lesser of two evils. And for that we are grateful.
We still haven't seen a doctor yet, so there has not been a thought as to when they are scheduling the surgery. But at least we KNOW what we're dealing with now.
And it's pretty common, so we're a bit more confident that it can be taken care of and taken care of properly.
For that we are also very grateful.
Brandon is still hurtin'. And scared. When you're 19 years old and told you have something growing on your brain, and can barely function from the headaches, the only good news is "It's gone now". So we're working to keep his spirits up.
But I thought I'd let you know.....we're a step or two closer now to getting this resolved.
UPDATED 12:30 Unflippin' believable. Just heard from Dee. Seems the "clinic" didn't forward any of Brandon's file...just the MRI, so the surgeon has decided they will do nothing but give him meds for pain. The boy can't function because of the pain. He can't hear. His pupil is so dilated he can barely SEE for cryin' out loud. He can't bend over. HE CAN'T WORK.
To say we are pissed is missin' the mark entirely. Dee is fluctuating between helplessness and pissedoffidness. And she can be a bitch on wheels when she goes over that line.
So she called the doctor. Several times. Even though it's "against the rules". She has DEMANDED they review his complete file. Not doing anything is completely unacceptable. Completely.
I'm telling you......this is just the flippin' straw the broke the camel's back. I thought I was in a bad mood before? Now.....yeah, I'm gonna go for a nice long drive to calm down. I don't know what else to do.
Dee will get me more info, and I will share, as soon as she gets done shoving the file in a doctor's face. They WILL look at this. Seems they had no idea he was having any other issues than pain.
Like that's not enough, for cryin' out loud....
Posted by Tammi at February 22, 2008 08:24 AM | TrackBackI read the page from the link.
Did you read the whole page?
There is a clinical trial for this, clinical trials will usually pay for everything.
Also a website for rare diseases.
Have you or Dee contacted either of those organizations? They might be able to help you.
Posted by: Quality Weenie at February 22, 2008 12:36 PMThat is so good to hear. Brandon and his sis are still in our prayers.
AC
Posted by: AC at February 22, 2008 01:00 PMDamn mu.nu. comments
Posted by: bx19 at February 22, 2008 03:27 PMSounds like its the doctor will be needing surgery when Dee has finished.
They should review his file urgently and act quickly.
Brandon is still in my thoughts and prayers.
And you take care, shouldn't be driving in that state of mind.
Posted by: bx19 at February 22, 2008 03:30 PMwell, I for one am so happy it's just a cyst! That has a really good prognosis!
Go Dee, tear that surgeon up!
Posted by: caltechgirl at February 22, 2008 04:27 PMGood for Dee! Unfortunately, the loudest voice tends to get the attention and when it comes to the medical "professionals", well, nice just doesn't cut it.
Here's my rule of thumb...Brandon smiles, does anything and everything that the medical person says. (Just short of, "Thank you sir may I have another.") Dee on the other hand (or you or Me or whomever draws the lucky straw) has to be the bitch on wheels and get things done. Don't raise your voice, don't call names, don't use vulgarity. But there is an effective way to get your point across for acceptable standards of care. Believe me, been there, done, can sell the t-shirt.
I'm glad that its "just" a cyst and something they are confident they can take care of. Have Dee contact Social Security. While Brandon is out of work, he's medically disabled at this point and in addition to Blue Cross, will be entitled to some compensation, there is a waiting period, so get that started. AND they deny everyone first time through, so don't get surprised at a no. Just refile and resubmit.
Sometimes, something is better than nothing.
Thinking of you guys. Here when you need me, as you know.
Posted by: Lee Ann at February 22, 2008 04:55 PMIt really surprises me that we don't have more patients (or family) "bumping off" their doctors. Doctors can be such heartless people. Not that this is the same but last year I had a lump removed. A week later I finally called the doctor, the nurse said "oh we mailed you the results a few days ago." I responded with "Well I did't get them" she said "well I cannot tell you anything so just keep watching your mail" WHAT!
Posted by: Lukie at February 22, 2008 05:31 PMOh good grief - all y'all will remain in my prayers. Sheesh!
Posted by: Richmond at February 22, 2008 06:53 PMPrayin' Kiddo. :(
Posted by: PatinMi at February 23, 2008 09:55 AM