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Cyberknife radiosurgery? (Read 29519 times)

QnHeartMM

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Re: Cyberknife radiosurgery?
Reply #25 - Jul 31^st, 2010 at 5:12pm

Oh Potter, ever so eloquent with your words as usual.

Neal, seems scary to me what you're about to undertake, but since you and your doctors have decided it is your best option, best of luck to you. As someone else said, please report back your progress (or perhaps have someone report on your behalf during your recovery).

One thing about this group, we're interested in how others are doing and certainly learning more.

Christy

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Neal

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Re: Cyberknife radiosurgery?
Reply #26 - Jul 31^st, 2010 at 11:08pm

Potter wrote on Jul 31^st, 2010 at 4:41pm:

So who exactly is gonna piss test you? I'm guessin nobody. Before I let someone stir my brain with a swizzle stick I would exhaust all of the options offered.

potter

You very well may be right. But then again, my employer, per company policy, can drug test me anytime they like, any type of test they like (urine, blood, even CSF), and testing positive for something (or refusing a drug test) is grounds for termination. And in this economy, getting another job is even more difficult than usual. Especially one with benefits as good as this one (the insurance is covering 90% of the cost of the procedure). They may not pay me very much right now, but at least some $ + excellent benefits counts for a lot.

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Neal

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Re: Cyberknife radiosurgery?
Reply #27 - Jul 31^st, 2010 at 11:29pm

QnHeartMM wrote on Jul 31^st, 2010 at 5:12pm:

Neal, seems scary to me what you're about to undertake, but since you and your doctors have decided it is your best option, best of luck to you. As someone else said, please report back your progress (or perhaps have someone report on your behalf during your recovery).

One thing about this group, we're interested in how others are doing and certainly learning more.

Christy

   Christy - It scares me too! But this crap is killing me, I'm now getting nailed about 3x/day, I'm utterly exhausted, and I am about to completely LOSE IT!!! (sorry for shouting).
   Everybody - Dont worry, I will be reporting. Just wondering if I should report the results, whether good, bad, or ugly, in this thread, or if I should start a separate thread. Opinions? Bueller? Bueller?

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Lizzie2

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Re: Cyberknife radiosurgery?
Reply #28 - Aug 1^st, 2010 at 5:04am

Have you looked into occipital nerve stimulation? It's done by a neurosurgeon and doesn't involve destroying a nerve. It has some risks involved, but these include post-op infection and more surgical-related complications rather than loss of any permanent function as is associated with what you are planning to do.

More power to you if you feel you have to go this way, but I agree with all above that it should definitely be a last resort. I'm a nurse so I get what you are saying about the alternatives (although NOT about drug testing CSF), but still...by the time I went for my nerve stimulator implant I'd been chronic for 5 years. I had tried everything out there known to man with the exception of the alternatives.

Best of luck if you choose to go through with it...

Carrie

~~"Don't know much about your life. Don't know much about your world, but Don't wanna be alone tonight on this planet they call Earth."~~

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Headache Boy uk

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Re: Cyberknife radiosurgery?
Reply #29 - Aug 1^st, 2010 at 5:27am

HI Neal

This is just a thought so ignore me if it is just ridiculous
I take it that your employer knows about your problems with CH , if so could you have a conversation with them about trying the cluster busters method ? do you think that they would allow you to try an experimental method of dealing with them before you, as potter so eloquently put it, let someone stir your brain with a swizzle stick .

If you were totally up front about it do you think they might cut you some slack as long as it didn't interfere with your work?

God bless

Nigel

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Some people cause happyness wherever they go, others whenever they go

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Brew

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Re: Cyberknife radiosurgery?
Reply #30 - Aug 1^st, 2010 at 8:19am

You should know, too, that a second trial is planned at the McLean Hospital at Harvard for either late this year or early next using 2-BOL, a non-hallucinogenic form of LSD which seems to have the same prophylactic properties for CH patients.

Being non-hallucinogenic means that chances are very good for a fast track to approval through the FDA.

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Cyberknife radiosurgery? Reply #31 - Aug 1^st, 2010 at 9:52am To your question......definitely use this same thread. Posting on it will move the topic back to the top and allow those of us with fading memories to refresh on details! Joe
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Neal

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Re: Cyberknife radiosurgery?
Reply #32 - Aug 1^st, 2010 at 6:17pm

Headache Boy uk wrote on Aug 1^st, 2010 at 5:27am:

HI Neal

This is just a thought so ignore me if it is just ridiculous
I take it that your employer knows about your problems with CH , if so could you have a conversation with them about trying the cluster busters method ? do you think that they would allow you to try an experimental method of dealing with them before you, as potter so eloquently put it, let someone stir your brain with a swizzle stick .

If you were totally up front about it do you think they might cut you some slack as long as it didn't interfere with your work?

God bless

Nigel

Not ridiculous at all. But I really don't think that would go over too well with them. I think being "totally up front about it" would just cause even more problems. Sad

Sad

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Neal

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Re: Cyberknife radiosurgery?
Reply #33 - Aug 1^st, 2010 at 7:07pm

Lizzie2 wrote on Aug 1^st, 2010 at 5:04am:

Have you looked into occipital nerve stimulation? It's done by a neurosurgeon and doesn't involve destroying a nerve. It has some risks involved, but these include post-op infection and more surgical-related complications rather than loss of any permanent function as is associated with what you are planning to do.

More power to you if you feel you have to go this way, but I agree with all above that it should definitely be a last resort. I'm a nurse so I get what you are saying about the alternatives (although NOT about drug testing CSF), but still...by the time I went for my nerve stimulator implant I'd been chronic for 5 years. I had tried everything out there known to man with the exception of the alternatives.

Best of luck if you choose to go through with it...

Carrie

I just did some research on ONS and although it looks promising, I'm not sure I could deal with having a device inside me though. Shocked

Shocked

   Not to mention that I do martial arts, and I think getting thrown around, slammed on the mats, punched, kicked, etc etc, might mess the thing up. However it's been several months since I've been to class thanks in large measure to The Beast ....
   As to "drug testing CSF", I mean taking Cerebro-Spinal Fluid (via spinal tap) and testing that. If I remember correctly from a "Drugs and Human Behavior" class in college (I minored in Psych), testing the CSF is the most accurate way to test for psychedelics usage and type, and I think the metabolites hang around there for a lot longer than the few days in one's urine and/or blood. Granted that method is, I imagine, expensive, invasive, and highly unlikely to be used in 99.9999999% of cases, but it is possible.
   I just wish this @&$! Would STOP already!!!!!

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Neal

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Re: Cyberknife radiosurgery?
Reply #34 - Aug 1^st, 2010 at 7:17pm

Brew wrote on Aug 1^st, 2010 at 8:19am:

You should know, too, that a second trial is planned at the McLean Hospital at Harvard for either late this year or early next using 2-BOL, a non-hallucinogenic form of LSD which seems to have the same prophylactic properties for CH patients.

Being non-hallucinogenic means that chances are very good for a fast track to approval through the FDA.

They had something on tv a while back about psychedelics, and mentioned the "bromo" for CH. I think it was on Nat. Geo. I watched the whole thing to see if they mentioned psychedelics for treating CH, but they merely glossed over that part and most of the show was about "hippies" and recreational drug use.
As to the FDA, I didn't know they "fast-tracked" anything. I think the average time between a company actually creating a drug and its being approved by the FDA is somewhere around 8-10 years. Angry

Angry

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Brew

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Re: Cyberknife radiosurgery?
Reply #35 - Aug 1^st, 2010 at 7:28pm

Neal wrote on Aug 1^st, 2010 at 7:17pm:

They had something on tv a while back about psychedelics, and mentioned the "bromo" for CH. I think it was on Nat. Geo. I watched the whole thing to see if they mentioned psychedelics for treating CH, but they merely glossed over that part and most of the show was about "hippies" and recreational drug use.
As to the FDA, I didn't know they "fast-tracked" anything. I think the average time between a company actually creating a drug and its being approved by the FDA is somewhere around 8-10 years. Angry

Angry

That's exactly what I'm talking about - 2-Bromo LSD, or 2-BOL.

Do a Google search on "Orphan Drugs" or "Orphan Drug Law." The hope is to get this through under this status.

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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Neal

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Re: Cyberknife radiosurgery?
Reply #36 - Aug 1^st, 2010 at 7:33pm

CKRS Report Part I - Preliminaries

   1. The day before the procedure, I am to start a Medrol (methylprednisolone) "dosepak". This is for any "swelling" that may occur as a result of the surgery. It will be taken in gradually lowering doses for a total of 6 days. (My past experience with steroids has been that they can virtually eliminate the CH for a few days to a week or 2, but then The Beast comes back with a vengeance, so any quick relief may be a "false positive".)
   2. An hour before the procedure, I am to take a single Ativan (lorazepam), 1 mg.
   3. It may be at least 2-4 weeks before the trigeminal nerve root is sufficiently "dead" to provide the advertised relief.

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Neal

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Re: Cyberknife radiosurgery?
Reply #37 - Aug 1^st, 2010 at 7:52pm

Brew wrote on Aug 1^st, 2010 at 7:28pm:

Neal wrote on Aug 1^st, 2010 at 7:17pm:

They had something on tv a while back about psychedelics, and mentioned the "bromo" for CH. I think it was on Nat. Geo. I watched the whole thing to see if they mentioned psychedelics for treating CH, but they merely glossed over that part and most of the show was about "hippies" and recreational drug use.
As to the FDA, I didn't know they "fast-tracked" anything. I think the average time between a company actually creating a drug and its being approved by the FDA is somewhere around 8-10 years. Angry

Angry

That's exactly what I'm talking about - 2-Bromo LSD, or 2-BOL.

Do a Google search on "Orphan Drugs" or "Orphan Drug Law." The hope is to get this through under this status.

Interesting. I just did a little research and found that they had a hearing/public comment just a little while ago. Although the hearing has passed, they will still accept public comments. See the last sentence of the second paragraph of this document: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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All you clusterbusters should comment!

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Brew

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Re: Cyberknife radiosurgery?
Reply #38 - Aug 1^st, 2010 at 8:07pm

Neal wrote on Aug 1^st, 2010 at 7:52pm:

That's exactly what I'm talking about - 2-Bromo LSD, or 2-BOL.

Do a Google search on "Orphan Drugs" or "Orphan Drug Law." The hope is to get this through under this status.
Interesting. I just did a little research and found that they had a hearing/public comment just a little while ago. Although the hearing has passed, they will still accept public comments. See the last sentence of the second paragraph of this document: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Login

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All you clusterbusters should comment!

Done. Months ago.

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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boski

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Re: Cyberknife radiosurgery?
Reply #39 - Aug 2^nd, 2010 at 2:21am

Just the bar! Eat the seeds! Shrooom, see if it works!

If not! then let them at it. But try, Do they stand at the
door with a cup? Don't think so! Man more guys in your
profession are druggies than you know! think about it,
what if they cut the smart part and your a dope like me
forever! Cheesy

Cheesy

Maybe hope for me one day when I get off dope-o-max!

Peace,

Boski

It's your brain and you only have one. And I would be
afraid of a reboot like that. But you have Brass ones man!

In no way am I making light of it! But just trying to make
my point hope I didn't offend any one.

« Last Edit: Aug 2^nd, 2010 at 8:50am by boski »

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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Cyberknife radiosurgery? Reply #40 - Aug 2^nd, 2010 at 7:43am Prayers are with you, sir. Let us know how you make out. God bless! lance
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Neal

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Re: Cyberknife radiosurgery?
Reply #41 - Aug 2^nd, 2010 at 8:58pm

Brew wrote on Aug 1^st, 2010 at 8:19am:

You should know, too, that a second trial is planned at the McLean Hospital at Harvard for either late this year or early next using 2-BOL, a non-hallucinogenic form of LSD which seems to have the same prophylactic properties for CH patients.

Being non-hallucinogenic means that chances are very good for a fast track to approval through the FDA.

Brew,

Just in case it doesn't work, would you please post or PM me the information so that I could apply for a spot? It would be greatly appreciated!

Thanks and eternal PF days & nights to you, sir!

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Neal

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Re: Cyberknife radiosurgery?
Reply #42 - Aug 2^nd, 2010 at 9:10pm

   Well, tomorrrow's the day. 9 AM CST.
   If I post anything really loopy or over-the-top tomorrow, chalk it up to the Ativan! Never had it before but I am told it makes one "really loose and goofy," per a nurse friend of mine.
   But I do intend to make a report sometime tomorrow (probably mid to late afternoon).
   I'd like to thank everyone for the advice, kind words, prayers, thoughts, etc. that you all have offered. It is greatly appreciated, and may God (or whatever deity(-ies), if any, you worship) bless you for it!

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Cyberknife radiosurgery? Reply #43 - Aug 2^nd, 2010 at 10:12pm O.K. sport, you tried Oxygen at 11lpm. How's bout kicking it up to 25lpm. Can't hurt. Potter
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-johnny-

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Re: Cyberknife radiosurgery?
Reply #44 - Aug 2^nd, 2010 at 10:51pm

Neal wrote on Jul 30^th, 2010 at 9:00am:

not to mention an oath I took in regards to that license

out of all the reasons you gave for not busting thats the one i can't talk you out of. i once asked chuck why he didn't try busting and he told me that he made a promise to his daughter that he would not do illegal drugs. i respect that.

neal i skeptical about surgery but you if you sincerely think this is your only option i wish you the best of luck. please keep us updated

edited to add: yeah how 25 lpm? oxygen isnt illegal

« Last Edit: Aug 2^nd, 2010 at 10:54pm by -johnny- »

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Cyberknife radiosurgery? Reply #45 - Aug 2^nd, 2010 at 11:50pm Take a bit of time before you jump in the deep end, give the Oxygen at a high flow rate a chance. Potter
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Lettucehead CH.com Old Timer Offline I am very blessed... Posts: 293 Iowa Gender:	Re: Cyberknife radiosurgery? Reply #46 - Aug 3^rd, 2010 at 12:23am Good Luck! I'll be thinking good thoughts to you tomorrow!
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boski CH.com Alumnus Offline CH'S Suck for all that Suffer / The Pain The Pain Posts: 208 NYC Gender:	Re: Cyberknife radiosurgery? Reply #47 - Aug 3^rd, 2010 at 12:42am Hey Neal: Fingers, toes and every hair on my head crossed for you! Good Luck To You Man and All The Best! Peace, Boski
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gore2424

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Re: Cyberknife radiosurgery?
Reply #48 - Aug 3^rd, 2010 at 8:28am

Hi Neal in May of 2002 I went to the Mayo clinnic in Rochester Mn. and had my right side trigeminal nerve cut. I only got a little over 4 months relief. I feel nothing on right side of my face. One of the hardest things after surgery was when eating I keept biting inside my cheek and tongue & worst I have had 5 eye infection because you dont know if something was in it til too late. Once it was so bad after a couple of weeks trying meds they ended up sewing my eye lid shut except for a tiny bit to put in drops. I had a follow up in June of 2004 and out of the 13 surgerys like mine (done from 1995-2003) I was told (2) complete relief & it has worked for them for over 3 years, (3) 50-60 % better, (3) 75-80% better, and like me (5) minor relief but not lasting over 6 months. If you do go and get it done I wish you the very best. Terry

I said your hair looks nice Ü

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Re: Cyberknife radiosurgery?
Reply #49 - Aug 3^rd, 2010 at 10:29am

Neal,

My friend, please don't take any of our concern as criticism. I am one also who has not taken any of the CB alternatives, as badly as I have wanted to, for legal reasons. I have been chronic for almost 8 yrs though, so I know your fears, but I've found relief with Kudzu and O2 @ 25lpm.

Our purpose here at CH.com is support and advice. We will not attack anyone for a personal decision. The only ones we will go after are those who try to convince others to do something stupid. Personal choices may be disagreed with, but while we don't necessarily agree with it it doesn't affect anyone else, so we don't attack. Sometimes we try a little shock therapy to get one's attention, but that is the only purpose for it.

You should be in the procedure about now, and I've been praying for you for the last while, and I'll continue.

Jerry

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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