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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Brain Surgery Reply #25 - Sep 11^th, 2009 at 3:38pm Brew wrote on Sep 11^th, 2009 at 1:48pm: Well, tie me to an anthill and smear my ears with jam. I'd have been on yesterday's flight out of Copenhagen. This truly sounds like Frankenstein stuff. Sci-Fi.? Potter
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Marc Ex Member Gender:	Re: Brain Surgery Reply #26 - Sep 11^th, 2009 at 3:59pm bejeeber wrote on Sep 11^th, 2009 at 12:30pm: Oxygen addictive? OK my impression of general medical professionals in general just sunk a few more levels, and it was already way down in the basement. Don't know about the rest of the profession, but it gives me a very uncomfortable feeling about this Doc.
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Sophia

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Re: Brain Surgery
Reply #27 - Sep 11^th, 2009 at 4:32pm

Brew, lets go fishin, ok? I could use some runnin away from home. And boy oh boy I really want to video the conversation I will have with my neurosurgeon again when I tell him yet again to kick his oxygen habit he annoys me. I will supposedly have access to physical and mental therapy but it will be in danish and as I have said my danish sucks big time and I have to take homework to the hospital with me. And nope, I have had a friend reread what I have translated and she said I heard and translated correctly, no meds what so ever. Just out of curiosity, how much pain is too much? When you have been like I have the past few days (out of pain meds and no refills, screw my bad luck!) and crying constantly or does it actually get worse than your head on fire, white hot pokers in your eyeballs, your teeth feel like they will pop out of your head and the world is much too loud and you wish everyone would please be quiet and just let you die. And then to add insult to injury you start vomiting because your migraine set off a cluster headache which set off a trigeminal neuraligia attack which made you grouchy and nauseated. I wanna go fishin with Brew!!! Lets go for salmon ok? Or trout? You can have the brew and I will have root brew and we will have a lovely time!
Hanging on by my toenails, Sophia

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MattyAA CH.com Veteran Offline I Love CH.com! Posts: 242 Poland, EU Gender:	Re: Brain Surgery Reply #28 - Sep 11^th, 2009 at 6:55pm I may sound stupid and perhaps rude and I apologise in advance for it, but have you tried every possible thing for all these malady? Botox injections, hallucinogens and others I cannot think that could work for at least 2 of these diseases.
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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Brain Surgery Reply #29 - Sep 11^th, 2009 at 7:45pm Never heard of physical therapy being in a foreign language. Potter
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Sophia

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Re: Brain Surgery
Reply #30 - Sep 14^th, 2009 at 4:02pm

Physical therapy in a foreign language is point and grunt as far as I am concerned. The therapist will say things like go do this with that and I am standing there going what? I dont understand you please slow down and finally it is just point and grunt or I ignore her. I go to hospital tomorrow and will be out of touch for 2 long weeks. Thanks for the support everyone. If I survive this crap I will be back a week from Tuesday. Probably fasting and grouchy but that is my last resort. Oh and for anyone going off serious addictive narcotic pain relievers.... in my opinion you are not addicted if you can white knuckle it thru the DTs after letting the doc take you up to 15 to 20 mgs of morphene a day and then tells you that you are a serious addict and cant stop cold turkey. I did it!!! And I aint listenin do the stupid doc again about that stuff. The DT business wasnt fun! And that will teach me to believe that docs know what they are talking about here. Pain management my big toe. Oxygen addictive but morphene is safe and then when push comes to shove the docs still arent happy. Well at least now I know and wont do that again. I did try shrooms and the doc refused to listen when I asked about botox. I have tried nearly all the headache remedies without ibuprophene or aspirin since I am severely allergic to those and nothing works but sometimes oxygen and caffiene. I did make a nice topical solution of olive oil, lavender oil, peppermint and eucaliptus oil and rubbed that over my temples and hairline for migraines and it worked pretty good. But the doc will probably say that is addictive as well so .......
See you all in 2 weeks!
Sophia Huh

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MattyAA

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Re: Brain Surgery
Reply #31 - Sep 14^th, 2009 at 4:37pm

I think this doc treats all patients as clueless people that when asked about what is heart organ doing, they will say that is responsible for eating...

I think he just dismisses you big time, because he is used to be an ass as doctor.

I hope all goes well because I think you deserve as every person pf time and lots of it, I hope they will at least offer you some botox to nerves and in future maybe ONS!

Also I guess you said you tried mooshies and they did not work at all even when dosing mulitple times? Unless you couldnt get off meds because of how severe your condition is so you tried with meds?

And is Botox helping you big time?

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« Last Edit: Sep 14^th, 2009 at 4:43pm by MattyAA »

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bejeeber

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Re: Brain Surgery
Reply #32 - Sep 14^th, 2009 at 9:13pm

Sophia - you will survive this crap!

What with everything you've withstood, you're up to it, this one won't get ya. I'm not particularly religious myself, but I'm trying to beam you good vibes and junk at least. Grin

Sounds like you have unfortunately stumbled across the equation that all too often holds true:

Doctor = arsebag.

BUT the surgeons do still tend to be good technicians and they'll do you right this time.

See you in 2 weeks when this phase is HISTORY.

Hang in there and come back and hang out here

-Bejeeber

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« Last Edit: Sep 14^th, 2009 at 9:13pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Pixie-elf

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busting is the best!

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Re: Brain Surgery
Reply #33 - Sep 19^th, 2009 at 1:56am

MattyAA wrote on Sep 11^th, 2009 at 6:55pm:

I may sound stupid and perhaps rude and I apologise in advance for it, but have you tried every possible thing for all these malady? Botox injections, hallucinogens and others I cannot think that could work for at least 2 of these diseases.

For one of the conditions she's having this done for, there isn't a lot of options.

I have the same condition, idiopathic intracranial hypertension/ pseudotumor cerebri. They're cutting the hole in her head to put in a meter to constantly monitor how much fluid is around her brain. They usually do it to see what exactly is going on, and to try to decide on the best course of treatment for it.

We've got a few options: Diuretics, Pain meds, Lumbar punctures (repeated often) or surgery.

None of these is a final means to an end with this condition. Sure, you can have a shunt put in like me, but there is no guarantee it'll be a success. (Or that it won't make things worse for you.) A lot of people have multiple surgeries just trying to get it right. This surgery isn't minor in the least, for it being put in the back like mine, the recovery time is 3 months. For it in the head? 6 months.

Marinol is known to help, there's a problem with that though. If it vasodialates like THC, it would trigger her clusters.

Depending on how high her pressure is though, she may be getting relief while in-hospital because if it's over 20, they'll drain it off to protect her vision. They may do it anyways just to see how quickly the spinal fluid builds up.

Hope this helped explain some of this.

Praying for you Sophia. Hopefully through this they'll come up with a way to give you some relief for the PTC.

PFDAN
Mystina

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bejeeber

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Re: Brain Surgery
Reply #34 - Sep 27^th, 2009 at 11:03pm

Okay Sophia, expecting to see you back here pretty soon and anxious to hear a report when you can muster one.

Hoping this will mark the beginning of a path with much less suffering for you, and maybe even a visit back to the homeland.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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bejeeber

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Re: Brain Surgery
Reply #35 - Oct 2^nd, 2009 at 10:32pm

Still keeping the porch light on for you here Sophia.

Hoping to hear from you as soon as you're able.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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