Warren's Brain
May. 14th, 2002 02:24 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
figmoThis whole saga with Warren and the brain surgery he so desparately needs is getting to be quite the issue. I'm fighting back the urge to scream and cry at once. It's outrageous, and not in a good way.
Background: Warren has an arachnoid cyst. His is roughly somewhere between the size of an apricot and a baseball. Arachnoid cysts are most commonly found in children. Warren's cyst is pressing against his left temporal lobe. His judgement is impaired, and his short-term memory is hosed. He also has numbness in his limbs, another classic symptom of such a large cyst. The cyst is also pushing the center of his brain off to the right.
Anyone who's seen his MRIs has said, "run, don't walk to the nearest hospital." His health plan, Kaiser Permanente, doesn't see it that way. Warren hasn't been able to hold down a regular job because of the cyst. He doesn't have the stamina (yet another symptom of this cyst) to hold down a crappy job (and why should he have to work a burger-flipper or warehouse job when he has a degree?), and he can't think clearly enough to hold a desk job. Sometimes he comes off as a bit of a "dim bulb" because he doesn't learn quickly (due to the pressure on his brain).
Last Wednesday we went to his neurosurgeon appointment. The neurosurgeon mentioned something called an "Ulmaya" (that's the spelling he gave me at the time) that might be an option for Warren. He's afraid to just shunt the fluid because he fears Warren's brain could implode into that huge area.
I spent two days looking up "Ulmaya" to no avail. After calling Johns Hopkins, I learned the thing is spelled "Ommaya" and then got lots of information on it. Basically, it's a shunt-type device that gets implanted that lets you siphon off the fluid in stages, thus letting his brain adjust to the increase in space and decreasing the risk of hemorrhaging. The surgeon told us he'd discuss the case with his colleagues, and then weigh the case based upon some memory and perception tests to be administered the following week.
Anyhow, Friday morning Warren's parents were called and yelled at by the neurosurgeon because Warren wasn't standing by the phone. Warren was at my place because he wasn't expecting an answer until after the testing. The gist of what the doctor said was none of the surgeons at the meeting would operate on Warren. Warren called to talk to the doctor, but he wasn't to be available till 2:45pm.
Warren's reaction was to drive up to Redwood City and see the neurosurgeon in person. I had worked enough hours that I was able to afford to go with him, so I did. The guy did meet with us, but he had already made up his mind not to help Warren. His feeling was "surgery is risky." Never mind that this thing could kill him if left untreated, he said "No one is willing to operate on him."
Warren pulled out the MRIs. The guy pointed to one that showed the top of the cyst (kind of like the tip of an iceberg) and made like it was small. We don't think he really looked at the MRIs.
Next we went to Patient Relations. We chatted with a woman there who agreed to set up a referral to the head of Neurosurgery. I'm convinced we're up against a brick wall and will have to go outside Kaiser; Warren thinks otherwise.
Yesterday Warren went for the testing. Instead, because he got there late (his car broke down, so he had to take public transit), the psychologist decided to "talk" to him "to get to know [him] better." Her reaction to him was, "You're stuck in a loop" and "You keep looping." Warren just wants to get his expletive-deleted surgery approved and done with so he can have a life.
Today Warren got a call from the woman at Patient Relations. According to her, the neurosurgeon we saw last week wanted to do the surgery, but he was outvoted by his colleagues. I don't get it.
I don't know whether Warren is going to have to go to Sacramento or outside Kaiser to get his surgery. The testing seems like it's going to be a waste of time.
Meanwhile, I've been trying to figure out how to get the surgery paid for if it has to be done outside of Kaiser (which is looking more and more likely). I am tight on cash, and he won't take what little I've got to offer, otherwise I'd ask Mom for help (not that she'd give it, but I'd ask...). As it is I've been paying off months of bills I hadn't been able to pay, and I still owe my friends P and S a huge chunk of cash.
If anyone knows where I could at least get a second opinion for Warren anywhere in the SF Bay Area, I'd most appreciate it.
Background: Warren has an arachnoid cyst. His is roughly somewhere between the size of an apricot and a baseball. Arachnoid cysts are most commonly found in children. Warren's cyst is pressing against his left temporal lobe. His judgement is impaired, and his short-term memory is hosed. He also has numbness in his limbs, another classic symptom of such a large cyst. The cyst is also pushing the center of his brain off to the right.
Anyone who's seen his MRIs has said, "run, don't walk to the nearest hospital." His health plan, Kaiser Permanente, doesn't see it that way. Warren hasn't been able to hold down a regular job because of the cyst. He doesn't have the stamina (yet another symptom of this cyst) to hold down a crappy job (and why should he have to work a burger-flipper or warehouse job when he has a degree?), and he can't think clearly enough to hold a desk job. Sometimes he comes off as a bit of a "dim bulb" because he doesn't learn quickly (due to the pressure on his brain).
Last Wednesday we went to his neurosurgeon appointment. The neurosurgeon mentioned something called an "Ulmaya" (that's the spelling he gave me at the time) that might be an option for Warren. He's afraid to just shunt the fluid because he fears Warren's brain could implode into that huge area.
I spent two days looking up "Ulmaya" to no avail. After calling Johns Hopkins, I learned the thing is spelled "Ommaya" and then got lots of information on it. Basically, it's a shunt-type device that gets implanted that lets you siphon off the fluid in stages, thus letting his brain adjust to the increase in space and decreasing the risk of hemorrhaging. The surgeon told us he'd discuss the case with his colleagues, and then weigh the case based upon some memory and perception tests to be administered the following week.
Anyhow, Friday morning Warren's parents were called and yelled at by the neurosurgeon because Warren wasn't standing by the phone. Warren was at my place because he wasn't expecting an answer until after the testing. The gist of what the doctor said was none of the surgeons at the meeting would operate on Warren. Warren called to talk to the doctor, but he wasn't to be available till 2:45pm.
Warren's reaction was to drive up to Redwood City and see the neurosurgeon in person. I had worked enough hours that I was able to afford to go with him, so I did. The guy did meet with us, but he had already made up his mind not to help Warren. His feeling was "surgery is risky." Never mind that this thing could kill him if left untreated, he said "No one is willing to operate on him."
Warren pulled out the MRIs. The guy pointed to one that showed the top of the cyst (kind of like the tip of an iceberg) and made like it was small. We don't think he really looked at the MRIs.
Next we went to Patient Relations. We chatted with a woman there who agreed to set up a referral to the head of Neurosurgery. I'm convinced we're up against a brick wall and will have to go outside Kaiser; Warren thinks otherwise.
Yesterday Warren went for the testing. Instead, because he got there late (his car broke down, so he had to take public transit), the psychologist decided to "talk" to him "to get to know [him] better." Her reaction to him was, "You're stuck in a loop" and "You keep looping." Warren just wants to get his expletive-deleted surgery approved and done with so he can have a life.
Today Warren got a call from the woman at Patient Relations. According to her, the neurosurgeon we saw last week wanted to do the surgery, but he was outvoted by his colleagues. I don't get it.
I don't know whether Warren is going to have to go to Sacramento or outside Kaiser to get his surgery. The testing seems like it's going to be a waste of time.
Meanwhile, I've been trying to figure out how to get the surgery paid for if it has to be done outside of Kaiser (which is looking more and more likely). I am tight on cash, and he won't take what little I've got to offer, otherwise I'd ask Mom for help (not that she'd give it, but I'd ask...). As it is I've been paying off months of bills I hadn't been able to pay, and I still owe my friends P and S a huge chunk of cash.
If anyone knows where I could at least get a second opinion for Warren anywhere in the SF Bay Area, I'd most appreciate it.
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no subject
Date: 2002-05-14 04:30 pm (UTC)(no subject)
From:Re:
From:The surgeon general has determined that HMOs are hazardous to your health.
Re: The surgeon general has determined that HMOs are hazardous to your health.
From:some ideas
Date: 2002-05-14 08:41 pm (UTC)Brain and Pituitary Foundation of America
President
c/o Marlene Stephens
281 East Moody Avenue
Fresno, CA 93720-1524
559-434-0610 (Voice)
NIH/National Institute of Neurological Disorders and Stroke
"Brain Resources and Information Network" (BRAIN)
Bethesda MD 20824
Phone #: 301-496-5751
800 #: 800-352-9424
Home page: http://www.ninds.nih.gov/
http://www.clinicaltrials.gov/
http://www.rarediseases.org/
All I can think of is to think outside the insurance box when it comes to funding. Find a clinical trial; utilize what you can of the public health system; go to support groups not for the support but for the contacts; see if a doctor outside of the SF Bay area will work on it; search for grants or loans that will cover rare-disease surgeries. Otherwise, I wish you both the best of wishes and long and healthy lives. -H
Re: some ideas
From:What's the problem with health systems these days?
Date: 2002-05-15 02:52 am (UTC)If it comes down to outside funding, please let me know, I will do what I can to help, little as it may be. Otherwise there's not much else I can do except send positive thoughts to both of you and *HUGS*.
no subject
Christ, I wish there was something I could do to help.
This may be a little delicate, but what's your insurance like? A quick marriage might at least give you power of attorney if things go south; best outcome is having the operation done ASAP under your coverage.