Hi All,

     I know I should post to the Gettin to Know Ya first, but time may be of the essence here. I'll post the intro later.
     I have had CH for 20 years now. I have tried almost everything. The other day my neuro suggested having a "Cyberknife" procedure done. Not sure how close it is to GKRS, but similar idea - zap the trigeminal nerve where it exits the brain (or mighty close, anyway).
      My question is, has anyone heard of this particular procedure - the Cyberknife, that is - or had it? What, if anything, can you tell me about its effectiveness?
       So far they have done an MRI & a CT scan. They will overlay the 2 images, come up with a plan, and do the procedure. The team will consist of a neurosurgeon, a radiation oncologist, and a physicist. Both my neuro and the neurosurgeon seem to think there will be good results, with limited (if any) side effects.
       Right now I am half-scared (messing around with my brain with radiation) & half-hopeful (the potential that I could experience a "normal" life - whatever that is). Anyone who can, please advise me about this procedure and any potential side effects. If it works, though, it may end 20 years of Hell and help my career tremendously; as I'm sure y'all all know, this $&!@ can be rather disastrous to one's career (as well as family, relationships, etc etc).
        Any advice you can give me will be greatly appreciated!

Thanks guys n gals! 

black wrote on Jul 13^th, 2010 at 10:12am:


     "zap"= irradiate it till it stops working; IOW, yes, cutting, but with radiation rather than a knife.
      "time of essence" = they think they can schedule it within a week or two, and once "Obamacare" goes into effect, the insurance company may have even more reason not to pay (still waiting to hear about approval).
       Believe me, I am not considering this lightly, and have been researching this and other similar procedures, such as the "Gamma Knife". I think CKRS & GKRS may use the same type of radiation, but the CK is more accurate and precise.
       What I've learned so far is that, as far as GKRS is concerned, it has helped some folks a lot, and they go long periods without any clusters, and when the clusters do strike, they are less frequent and less severe than previously. It has also NOT helped numerous people. The side effects I saw most from GKRS were loss of sensation on the CH side of the head; facial paralysis the CH side of the head; losing the ability to blink on the CH side of the head; and something I think was called "deafferentiation pain syndrome" (sorry, but I left my notes at home), which is essentially similar to the "phantom limb" syndrome of an amputee. So yes, the side effects can be problematic and permanent. But so is living with The Beast (although, unless I have indeed gone chronic, there are PF respites)....
        I have also contacted a physicist friend of mine who works in the Radiation Oncology department of a local hospital, and am awaiting his response.
        I do realize that the CKRS procedure is relatively new, and there seems to be scant evidence of its effectiveness, as well as scant evidence of its ineffectiveness. IOW, there's little evidence either way.
        But one thing that makes part of me want to do this is that it might actually lead to more knowledge about this disease and this procedure in relation to it, and may lead to a very effective treatment for it. Kind of like donating my body to science & medicine before being dead! The other 75% of me is scared $%#+less.         
        I have been praying constantly (when not working or researching the CKRS) for the LORD to guide me and grant me wisdom in making this decision. Please y'all do the same for me.   

I too have considered this type of surgery, but as Ray pointed out to me, you wouldnt be able to feel if something gets in your eye, and mine HAVE switched sides once, and the procedure is permanent.  Thanks Ray~ you talked us out of this one, the risks and side effects in our opinion are just not worth it, just slow down and research.

If you haven't tried the clusterbuster.com methods, and given them an honest try, then you haven't reached the point of going the surgical route. Not even close.

Plus we really should check with you to see whether you've tried the newer and more effective high liter flow, non rebreather method of O2 use as outlned in the oxygen info link on the left of this page.

       I'm sure many of you will condemn me for it, but I have decided to go ahead and have the procedure. I delayed having it done and have thought long and hard about it, but pretty much all else has failed. Granted, I haven't tried the cluster buster methods, but as they are illegal here in the USA (BTW - are they legal anywhere?), and getting caught would mean I lose a professional license I worked long & hard to get, (in spite of The Beast), I have opted to take this radical measure.
       My reasons are as follows:
       1. I have had in the past weeks an increase in the frequency and severity of the attacks;
       2. It seems quite likely that I have gone chronic;
       3. Over the past few weeks, as The Beast keeps getting worse, I have seriously considered suicide, including thinking on the where and how of it, to make them stop. This is the first time ever that my thoughts have been that serious about doing it, and quite frankly it scares the s&!t out of me;
       4. Regardless of what the "experts" say, it actually might work. A 50% chance of success is better than 0%. And even if it's only for a couple of years, it's better than no relief, and better (presumably) than killing oneself;
       5. I desperately want to stop taking loads of meds every day;
       6. Since it won't be too long before "obamacare" really starts to go into effect, this procedure likely may not be covered much longer by my insurance company, for treating "medically refractory cluster headaches". (Obamacare has nothing to do with increased quality of care for patients, or even very much about covering the uninsured; it's really all about cutting healthcare costs.) [side note on this contentious subject - whatever happened to the days when one's neighbors, community, places of worship, civic organizations, etc. would pitch in and help each other out in times of need? Nowadays it seems like it's "screw you, as long as I get mine," in the US. I think that is a terrible tragedy. How refreshing that this site seems to be an exception to that trend.]; 
       7. Believe me, if the CB methods weren't illegal, with the aforementioned potential loss of my livelihood, I'd be looking for some fungi right now! God damn the inane, asinine US "War on Drugs" (at least on the CB ones)! (I am a libertarian and wish the libertarian party were running the federal, state, and local governments (rather than the fools in Congress and the White House, state legislatures and governor's mansions, and city councils and mayoral offices)), then those methods would be legal, and many (if not most) of us could be virtually cured and able to lead a "normal life"! From what I've read over at CB, their methods seem to be highly successful. Sadly, science and medicine generally eschew "anecdotal evidence", because to them, "regular folk" couldn't possibly know what they are doing, and "regular folk" don't give 'em grant money. Not to mention the fact that companies and "government officials" don't make money off of things you can grow for yourself! If there were a study, or something that I could get into right now, where such methods would be legal, and I had immunity from prosecution and the loss of my license, I would try it. But again, losing that license would mean losing my job and the ability to afford the meds, doctors, and such that at least help somewhat.
          Speaking of studies, I read an article where the studies re: CB methods for treating cluster headache aren't actually for coming up with a cure for us, but rather to study their "mechanism of action". I suspect if they figure that out, some pharmaceutical company will create yet another expensive product to treat CH. 
       The procedure is set for this Tuesday. I will report how it goes. Wish me luck, prayers, no awful side effects, etc. And please try to understand why I am taking this path instead of the CB one, and don't condemn me for it. "judge not, lest ye be judged."
        Sorry for writing a freaking book here. Thanks for reading it! Eternal PF days & nights, many thanks, and and may God's blessings be upon you all!!!!      

Neal I do hear you!

suicide is also very permanent, and  illegal too.  Only have
a prob if you don't succeed. "I lose a professional license I
worked long & hard to get" I think suicide will do this too! 
I'm just saying and don't listen to me.   But, before I had
any nerve cut, I would try it go way in the wood and have
fun and by the time they chk your clear not like MJ.  But
your in charge and I know I'm on 14th floor so ez window
jump would do, and lord knows that pain is intense.

But man Try all, even maybe if a tad illegal.  I think if it is a
Medication that helps you stay sane and your not going to
use it all the time just now and then to keep the beast happy. 
Hey in to the woods I would be a going.

Good luck, Neal.

Things mentioned on clusterbusters don't stay in your
system long. Take a long weekend and a home piss test
with you and you should be good to go.  But I understand
and I'm with you, Kill the beast, sucker is mean!  Pot, takes
30 days to clear your system, most others are gone in
days, is all I'm saying.  Hey a 4 x 6 is not my idea of
pleasure that would be a reason for suicide!

Good luck in your answer, and God speed Neal!

I pray for your PF days!

Boski

No Condemnation here!  Dam I hold my head and scream
like a baby! 

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

          What is your profession?

            Potter

deltadarlin wrote on Jul 30^th, 2010 at 6:21pm:

Not illegal to possess. Illegal to consume.

Potter: I knew i shouldn't said anything about my profession. But since I opened the door, in answer to your question as to my profession, I am an attorney. Passed the Bar exam & got licensed last year. Currently working in a corporate legal department (was working there before passing the Bar). Just not employed there as an attorney at this time. Confusing, isn't it?

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