It was on Sixty Minutes Australia last night - they don't have a video of the segment up yet - but they do have a transcript!! Maybe this can help you. It seems as if the woman - all her medications have stopped working too.
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Sweet! I've got a fairly clean X-Acto on the floor here somewhere...an extra bunch of wires and a cell phone battery...hmmm....
Could be worth investigating further, LOA- maybe even comtacting the show's producers (or the woman herself if she can be reached).
Reminds me of a disturbing episode of Ghost In The shell: stand alone Complex.
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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Ironic that you bring this up - I'm sitting in SeaTac airport right now, waiting to beging my long day at Swedish Medical Center where they do this very type of implant.
It's called an Occipital Nerve Stimulator. One of the doctors on staff at Swedish specializes in stimulators. Mayo Clinic and several other large hospitals in the country are doing trials with the stimulators to treat chronic migraine patients.
It's not a cure-all solution - but it's one that we'll be looking at. I may or may not qualify for this type of operation. It's hard to say. And it's costly. $30K. Approximately every 5 years, the battery pack needs to be replaced, and the leads that are attached to the nerves can come loose or break, which results in other surgeries, so there is a lot of maintenance that goes with it.
Several people in my migraine support group have stimulators though, and until they were implanted, they were 100% unresponsive to medications. Since the stimulators, the headaches have been brought to a manageable level, and preventatives and medications work for the first time ever. That, to me, makes it work investigating.
Again though, I won't know if I qualify until I go through a couple of steps - usually they start with occipital nerve blocks - that's an injection in the nerves that will temporarily "deaden" them. If that helps, then they move to a trial stimulator - that creeps me out. It's a stimulator where the leads are put inside, but all of the wires and the battery pack are outside. Just to see if it will work before they go all the way. Freaky. Then they put in the full system, if everything goes as planned.
That's a normal process, at least.
So I'll wait and see what the specialist says today - see if my symptoms qualify and whether it's time to go down that road, or if she wants to explore other avenues first.
Since the occipital nerve stimulator is not yet approved as a standard migraine treatment, it can be a bit difficult to get insurance coverage for it, so even if I DO qualify, I may have that problem - I don't really have $30K laying around right now.
So we'll see what happens....
Interesting article though... the more I hear about this application of the stimulator (it's been in use for years for back pain), the more I believe it's a valid medical treatment for migranuers.
Registered: Mar 1999
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Actually - mum wanted me to look it up on the net - that 60 minutes article... she gets bad headaches - they don't seem to be as bad as yours or the girl in the article. Mum has had nerve blocks for some other areas of pain in her body.
I thought of you straight away when reading this interview (I don't know why they just can't put the video straight onto the web?).
I'm glad that it's not just available in Australia.
Registered: Mar 1999
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I went to the doc only to find my wound worse and the Apligraf treatment doing dick...the skinless area is reaching arpund to the back of my leg now. Hoo-boy, I dont know which is worse- the general horror of it or my apathy to it at this point.
Talk of admitting me into hospital for a week for (my favorite!) I.V. antibiotics...possibly as soon as Wedensday or Thursday.
Fuck, I'm just re-livng all the shit I tried with my old doctor.
Plus, I gotta go to court today- busted driving with a suspended liscence, no registration and no insurance....it's all been taken care of and I'm hoping the judge dismisses the charges. Else I get jailtime (unlikely but possible), lose my job, apartment and possibly my flippin' leg.
Pretty concerned, but keeping it together- like McCay commenting on how pretty the Wraith aerial bombardment looked from within the failing shield.
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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Things didn't go so well for me yesterday, either.
The Neuro told me that "there is no long term treatment" for my condition, my current neuro has "left no stone unturned" and I have the "most thorough file" she's ever had referred to her.
She said the only REAL hopes I have are to try to get into some trials later on for a stimulator, PFO, etc, but the nearest trials are more than a year away.
She's keeping me high on the list though since those are my only hopes.
She also said that at this point she recommends a hospitalization for a med that is extremely dangerous in women of child bearing age to try to break the cycle - she thinks it's my only hope, and it's NOT guaranteed. Most Neuros won't let someone like me take this med, including her, but she doesn't feel there's any other option.
This med can make hair fall out, cause severe birth defects in babies, and cause complications that will result in death for women who accidently get preggers after taking in. All fun.
I also had an occipital nerve block injected to see if that will help at all. I won't know for several days, but since they don't believe my migraines are caused by occipital neuralgia, there's a good chance it won't help. Until it "kicks in" in a few days, I have to ice the injection point a lot - it hurts like a mother - they injected INTO the occipital nerve near the base of my skull. F*ck. I can't describe THAT to you. So I've been icing the area a lot, because even flicking my hair back hurts it.
As for work, she recommends that I stop trying to fix my body so I can work, and instead fix my job to adapt to my body. Accommodations, if possible, or carreer change were her suggestions. She just kept reiterating, "there is NO long term solution - you need to enjoy the little reprives when you get them, and learn to adapt to the bad times when you don't."
So I have two choices - take her word as final since she IS a world renowned expert on migraines, and then wait and see if there's any type of trial that comes up in the future that I will qualify to get into.
Otherwise, I can try to see another doctor in IL - that's the next closest stop. Chicago. And risk hearing the exact same diagnosis and prognosis.
It's a bit disappointing, that's for sure. But life will go on.
On the plus side, she is coming to town to meet with my Neuro on Thurs to discuss some cases, so there's a CHANCE that between the two of them, they can brainstorm something together. But it's slim.
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Ug. I LOVE it when a doctor suggests you just stop working to improve your chances of healing: there's literally no way I can go into the hospital right now- my rent is two weeks late as it is, and even if my shitty work would allow me to use the 100 hours of vacation I still have racked up to cover a week in the hospital, the resulting check would not cover my bills.
So, this week, I'm working 70 hours and hoping for the same next week- I have considered this at length, and see no option. I cant go into the hospital only to be homeless when I get discharged.
So, I went to court today to resolve my driving faux pas, and got a suprise: the judge is on vacation and supposedly notices were sent out informing people, but the jerkoff ahead of me ws yelling his head off about it, so I decided not to harass the poor court teller and just accept it. Now I have to go back next week and have another week in suspense to find out what's what.
No way am I paying Geico shit untill I go to court- if my case is dismissed, I'll have zero points on my liscense and will only pay $95 each month instead of the $200 they're hosing me for minimum coverage.
The whole "possible birth defects" thing is scary as hell- I was on Thamilidyde for a month or so two years ago- that's the scariest shit ever for defects and I have no idea how long the risk lasts. Not that I've any prospects in the ol' reproduction department just now anyway- tough to explain the limp and the whole "wound that will not heal" thing to women- pity is not sexy.
Have you considered having some of your eggs frozen for later insemination? If the procedure is risky to your child bearing, it might beworth considering.
quote:So I have two choices - take her word as final since she IS a world renowned expert on migraines, and then wait and see if there's any type of trial that comes up in the future that I will qualify to get into
Yeah, that's rough- my current doc sent a biopsy to forensic specialists all over the country (four people in other ststes I think total) and guess what? It's NOT Pioderma Gangranosum. So much for the diagnosis of my prior world-reknown-textbook-writing-Dermatlogy Professor.
Back to "unknown cause/ unknown pathology".
I'm looking into snake-handlers, faith-healing and Santeria next.
Hang in there, Liz- we's pulling for ya!
Hmmm...once the injection site heals up, if there's a mark, you could tape some white wire from it into an iPod, go on the train and pretend to be rocking out to music. Freak some commuters out.
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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What about medical maggotts, Jason? Sounds utterly gross - but they cultivate maggots to eat away dead and necrotic tissue to allow wound healing.
-------------------- "Bears. Beets. Battlestar Galactica." - Jim Halpert. (The Office)
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That's for debriedment, which does not seem to the an issue with me- each time my dressing is changed it "mechanically debrieds" the wound. This mean that the gauze pulls away most of the fibrin coating of nasty stuff that can grow on a wound bed.
Hurts too, of course.
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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Several (eight? nine?) years back, I had a wound on my leg (tiny) that opened into a wound. I went to see a doctor who said (with no testing!) that I was hypoglycemic and that was the cause. the wound healed over, leaving a livid scar, I stopped eating sugar, freaked out over it and got tested by another doctor. My sugars were fine- I had nothing.
Four years ago I developed a small pustule near the site of the scar, it was like a pimple and red around it. I went to another doctor who said it could be a bite or sting (thogh you'd assume I'd have felt that). He scripted Keflex- an antibiotic). The next day it opened up to the size of a dime, I went back to the doc, he sent me to the nearest Wound care center, where the center's director pronounced it a Brown recluse bite, admitted me, and performed excise surgery on my leg (basicly removeing the entire area).
And that's how it started...
But it was never a spider.
And now it seems it was never Pioderma.
...and now i'm off to see my doctor!
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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The fact that your body is unable to heal that wound sounds like the key to the whole thing. Adding new skin probably wouldn't help until you knew why you couldn't heal to begin with. I take it nobody in your family has ever experienced anything like this? And that you've had other wounds since this started that have repaired themselves? That would probably eliminate genetic, nutritional, environmental, and autoimmune conditions. I'm guessing the nature of your condition makes repeated biopsy impractical? Otherwise you'd think they'd have tracked down whether it was cancer, bacteria, fungus, parasite, or something else actively consuming your skin. Is there any hope of tracking the cause down by looking at what treatments have made it worse in the past? Maybe something whatever nasty little bugger eats?
Or maybe you were bitten by a mosquito from Shadar Logoth...
-------------------- "This is why you people think I'm so unknowable. You don't listen!" - God, "God, the Devil and Bob"
Registered: Mar 1999
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Probably that mosquito thing. I've had nicks, bruises and cuts to my other leg during the time this has been going on, and while they've been worrisome, they've all healed up fine.
It's just that one area, on that one leg, but it's been steadily getting larger with no reduction in size (though in truth, it's as shallow as it's ever been- it was once 20 milimeters deep).
So I went o the Doc today, expecting him to sentence me to hospital and instead got some good news- the dressing combo they tried on monday (antibiotic gel coupled with silver Acticoat dressing and a compression bandage) has helped a hot and there's "budding" granulation (the base that the dermis and epidermis need to frow from) going on.
Good news there- and no hospital stay either: i'm not doing cartwheels or anything though: most treatments work for me initially but get rejected over time.
It's a big concern of mine that there may be antibiotic-resistant bacteria somewhere deep in the wound that new growth tissue has overlapped- this would constantly underine any new tissue over time and, even if the wound heals over, would eventually open up again.
A nurse asked me today how good it'll be to be all healed up and I was a bit taken off guard. I have no clear idea how that is, really- try to imagine exactly how you felt physically four years ago (shrugs).
That "house" joke is something I'd heard a few times too- I've never seen the show, but I gather he solves whatevr the medical mystery is each week.
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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Indeed. And always right around ten minutes before the hour. Funny how that works.
You're certain this "budding" isn't some sort of asexual reproduction? The last thing we need is for you to start cloning...
Registered: Mar 1999
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quote:Originally posted by Jason Abbadon: I went to another doctor who said it could be a bite or sting (thogh you'd assume I'd have felt that). He scripted Keflex- an antibiotic). The next day it opened up to the size of a dime,
This sounds like an interesting bit... why give you antibiotics so willy-nilly - they all know not to give antibiotics too often. For a wound too? Wouldn't you go with a topical antibiotic ointment!?! Maybe your body somehow reacted badly to the antibiotic!?!
You mentioned about resistant bacteria deep down - that's why I thought of the medical maggotts... don't they eat up the bacteria too??
Also - you said if you had the leg off... horrible thought - but what is to say that the wound around the 'stump' wouldn't heal either!?!
-------------------- "Bears. Beets. Battlestar Galactica." - Jim Halpert. (The Office)
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