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Occipital Nerve Stimulators (ONS) (Read 30742 times)
wildhaus
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Occipital Nerve Stimulators (ONS)
Sep 12th, 2008 at 11:34am
 
On the (long) road to the surgical procedure OBS (occipital brain stimulators) that will (I hope) reduce the CH attacks to about (and below) 20% of the “normal” count of attacks without (?) dependency on the “pharmaceutical”
reatment / world.

The long road is due to the fact that the current treatment (GON)  See  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register   have “scarred” my defence systems to the
point that any surgical attempt has to be “prepped” to avoid any possible risks, risks that can accrue with any surgical procedure, and more so with “stressed” defence system.

I will try, and describe and provide, as much as I can “first hand” information, subjective at times, but mostly
objective, I can not promise to post every thing, I lately lack the discipline to do it on a regular basis ,but I will try
to take you, if you’d like, with me on this journey.

I will start the process end of this month, with a meeting with all the involved parties, but mainly with the neuro-
surgeon who will give me a detailed description of the procedure, risks, during and after the surgery, the “healing”
process, adjustment to living as a “cyberbrain” man.

I am, at the moment, at the point where I am “forced” to take this step; I was happy where I was with my “Injection”
but my body was not.
After the “no choice” decision to take the step, I have gone back to Carrie’s posts, and some other posts, trying
to start and build a picture of how it will be, after the surgical procedure the day after the week after and a year later, but some how I find my self very uncertain, almost pessimistic (at the moment), most likely it is normal, and the pessimism will subside along the way, the more info. I will have, the clearer the picture will be, the easier to understand the situation I am facing, and with that most likely I will start and look forward to the up coming (possible) change, positive or negative.

Michael
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« Last Edit: Feb 25th, 2009 at 11:26am by wildhaus »  

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Karl
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Re: Occipital brain stimulators (OBS)
Reply #1 - Sep 12th, 2008 at 11:44am
 
I am very interested and want to follow you on this journey. i have read about this and would like to hear first hand account.
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DennisM1045
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Re: Occipital brain stimulators (OBS)
Reply #2 - Sep 12th, 2008 at 12:22pm
 
This is a huge step Michael.  I know from reading your posts that you have really been through a lot.  I make no judgements.  I only wish you luck on the road to some well deserved PF time.

-Dennis-
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
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thebbz
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Re: Occipital brain stimulators (OBS)
Reply #3 - Sep 12th, 2008 at 1:22pm
 
I'm with Dennis. Good luck, you deserve something that works for you.
all the best
thebb
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Re: Occipital brain stimulators (OBS)
Reply #4 - Sep 12th, 2008 at 1:34pm
 
Best wishes to you.  Try to stay positive as you embark on this journey.  It may help for a more pleasing outcome.   Roll Eyes

Much luck,

Jeannie
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Batch
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Re: Occipital brain stimulators (OBS)
Reply #5 - Sep 12th, 2008 at 10:49pm
 
Michael,

You know wherever this journey takes you, we'll be following along sending our very best and strongest vibes.

Pete & Joyce
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wildhaus
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Re: Occipital brain stimulators (OBS)
Reply #6 - Sep 27th, 2008 at 10:29am
 
As promised some time ago I have gathered the history of my CCH as well as look into the future with
OCCIPITAL NERVE STIMLATION
As the document is way to big to dump it on DJ or ask him to help me put it on CH.com
and waste band width that is not my to abuse I have set up a website with all the info.
I am a beginner in website design, I am sorry for some mistakes
spelling as well as in the design, I will improve with time……
Plese do visit it and do comment (on this thread) I don’t have all the info.
I probably  have mistakes in some of my inf. I do need your help…….
If you know of articles research or other info that I should add to the
info. I have do send it to me I will add it ……..
This is the link:

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Michael
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Re: Occipital brain stimulators (OBS)
Reply #7 - Sep 27th, 2008 at 12:15pm
 
Michael,

Thanks for the update.  I can tell this is going to get more and more interesting with each update.

V/R, Batch
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wildhaus
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Re: Occipital brain stimulators (OBS)
Reply #8 - Sep 29th, 2008 at 1:59pm
 
I have added some technical info today to my “home page – my CH”
about Occipital brain stimulators

Michael

LINK:

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290908140
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« Last Edit: Sep 29th, 2008 at 2:00pm by wildhaus »  

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Re: Occipital brain stimulators (OBS)
Reply #9 - Sep 30th, 2008 at 8:07pm
 
Michael, I too, have investigated the surgical implant of  Medtronics device to stimulate the Occipital Nerve.  My headaches have been a part of my life for 30 years now.  I am not the typical male - therefore, I was incorrectly diagnosed for years.  I have been on just about all treatments known to mankind.  I had to go through extensive phsycological and physical testing to determine that I was indeed, a candidate for this implant.  However... prior to scheduling this proceedure, I tried a relatively new proceedure - radio frequency of the occipital nerve.  I had success with this proceedure for six months.  I just, this week got the CH back and am scheduled for next week for radio frequency.  Please keep me posted on the outcome of your surgery.  I am still contemplating this.

Dana
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Re: Occipital brain stimulators (OBS)
Reply #10 - Oct 8th, 2008 at 1:17am
 
much love to u brother.

a happy new year and a peaceful journey
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Re: Occipital brain stimulators (OBS)
Reply #11 - Oct 8th, 2008 at 11:32am
 
Hi Michael,

Just visited your website. First, it looks great. Second, I found it very interesting and learnt some new things.

Keep up the good work.

Pascal.
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wildhaus
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Re: Occipital brain stimulators (OBS)
Reply #12 - Oct 9th, 2008 at 5:50am
 
I up dated my website (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register) today, have some problems with the FTP server which I will  try and solve in the next few days…… also I will try to have my CH table with all the info
I collect on line.

Michael

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Re: Occipital brain stimulators (OBS)
Reply #13 - Oct 10th, 2008 at 7:55am
 
Hello Michael,

best wishes for a happy new year to you and your family!

There is a new article about ONS for Hemicrania Continua, some of it may be valid for CH too?

Brian Burns, Laurence Watkins, Peter J Goadsby: Treatment of hemicrania continua by occipital nerve stimulation with a bion device: long-term follow-up of a crossover study. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Published online October 8, 2008. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

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pf wishes,
Friedrich

 
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Re: Occipital brain stimulators (OBS)
Reply #14 - Oct 10th, 2008 at 9:32am
 
There was a literature review about ONS earlier this year,

Jasper JF, Hayek SM.: Implanted occipital nerve stimulators. Pain Physician. 2008 Mar; 11(2): 187-200. Review. Free full text: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

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wildhaus
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Re: Occipital brain stimulators (OBS)
Reply #15 - Oct 10th, 2008 at 12:47pm
 
Hi Friedrich, (and all)

Tks. for the wishes for the New Year!

I am still at work (it's 6:30pm and will stay until 10:30pm on a Friday evening) so didn’t get to go over the links you have send me, but will do it on Sunday!!

Any old / new article about ONS and headaches is of interest for me and
more so for CH.
Do (all) pls. send me any thing you find.... it good to know more
even if at times it not so promising, its still one "more brick in the
"wall" of know how.... and understanding what I am going to go through
with all the hopes and possible disappointments.

And for some of us, that is CCH’ers that can not / does not react positively to the various
medications, this might be a very good alternative, as its for me, a light at the end of
a tunnel.

I have to add that the situation I am in now, with no comprehensive preventive “plan”
and being “hammered” to the extent that I might have to consider giving up my job,
and that would be for me, a “death sentence”. I simply can not see my self not working,
I am not ready for it!
This is not a cry for help or what ever; it’s just that I am not ready to give up!
I have to find a way to have it the way I would like it to be, to win (loose) one more battle
and with lots of optimism win the war!

You all have a nice week-end

Michael

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wildhaus
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Re: Occipital brain stimulators (OBS)
Reply #16 - Oct 19th, 2008 at 9:58am
 
one more week.........

and then?

Micahel
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wildhaus
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Re: Occipital brain stimulators (OBS)
Reply #17 - Oct 25th, 2008 at 12:51pm
 
Tomorrow I will be admitted…..
the long road to the surgical procedure OBS (occipital brain stimulation) that will (I hope) reduce the CH attacks to about (and below) 20% of the “normal” count of attacks without (?) dependency on the “pharmaceutical” treatment / world, is at its end…..
To be honest, until today it was a far and obscure thing, not that I did’nt know what I am going in for
I have educated my self, I am ready in the impirical way, but now that I stand befor it seems
that I gat sort of tens, wonder how it will go, will it do what I am so hopeful it will do for me,
how long for positive results (if at all) to show, will it be (another) disappointment……..
will see…..  I am though confident I am doing the right thing (for me)……
I will (try) and inform,

Michael
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Re: Occipital brain stimulators (OBS)
Reply #18 - Oct 26th, 2008 at 12:22pm
 
Good luck to you.  Please keep us updated.  Sending prayers and vibes your way that this works for you.

Big Hugs  Smiley

Jen
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wildhaus
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Re: Occipital brain stimulators (OBS)
Reply #19 - Oct 27th, 2008 at 5:53pm
 
The surgical procedure is past me (the first one, one more to go) the stimulator are
in! on the left and right..... as well as an extra one for (if needed ) DBS........

Had 2 attacks and with some effort (training missing) managed to abort the attacks.....  and some O2
but cant say if it works or not..... need some time...... 
As I am still hurting from the surgery , didnt go as hoped, smooth, had an attack during
the surgery, they< had to put me to sleep all the way........... and did not implant the generator
in its place......

It was not a "walk in the park" I was hoping, but I will survive......

Michael
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Re: Occipital brain stimulators (OBS)
Reply #20 - Oct 27th, 2008 at 8:04pm
 
Thinking of you and hoping for relief.
all the best
thebb
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Re: Occipital brain stimulators (OBS)
Reply #21 - Oct 27th, 2008 at 10:59pm
 
I had the opportunity to Skype with Michael when he had sufficiently recovered from the general anesthesia for his implants this afternoon, but only after he had called to speak with Svenn...

That speaks volumes about the lengths fellow cluster headache sufferers will go to reach out to others in need...

Take care,

V/R, Batch
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Re: Occipital brain stimulators (OBS)
Reply #22 - Oct 28th, 2008 at 12:10pm
 
The stimulator is running, out of 5 attacks 4 aborted with out problems or prolonged treatment, the 5th attack I had to supplement with O2, which is rather normal......

The test now is to have the stimulator running at the times the attacks are "due" that is
to have it running before the "due" time and with that to "skip" the attack.....  we don't know how effective it will be, but its part of the "regime" and I hope it will be as successful as we hope it will be....
It is still way to early to make a "judgment", it will be very irresponsibly from me, but I do hope in the first place, and secondly I have promised to report abut this adventure.

Michael
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Re: Occipital brain stimulators (OBS)
Reply #23 - Oct 28th, 2008 at 12:22pm
 
We are pulling for you Michael. I am hoping this will be your magic bullet.
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wildhaus
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Re: Occipital brain stimulators (OBS)
Reply #24 - Oct 31st, 2008 at 4:35am
 
Hi

I am at home for the week end (until Sunday) the  ONS (Occipital nerve  stimulators) generator is hanging out of my body and 2 lead
weirs are going in to my body and up to the Occipital nerves (left and right) just under my shoulder.
I will post some pic. later in the day……
As to (very) primary results, it seems (like Lizzie said) very efficient, as the system that was put into me is
a new  version I have it “running” all day on a “maintenance” level, with the idea of using the generator and
the ONS leads on the nerve with a very low pulse frequency, intensity, and other factors as a Preventive
with the target of reducing the attacks by about 75% and mange to abort or control up to about 85% off the
episodes, and the rest to control using “normal” methods such as: primarily O2 as abortive and in my case
for extreme situations Zomig Nasal.

As the engineering company is located in Boston USA and there is no “modem” type connection to this type of
“generators” the programming is sort of a drag, and takes some time, also there is a very competent person
in Switzerland that dose the “on site” programming, but I do hope that very soon the hand held unit will be able
to “go on line” and we can refine the programming so I get a higher effect, will see…..

I did (last night) get a full night of sleep (10pm until 8am) with out even one single attack and that is some-
thing I didn’t get in 4 weeks……. I just would like to believe its due to the implant and not just a bizarre
coincidence, time will tell…..
I (in this post) do not encourage or promote this method - ONS, nor do I suggest it is a good way in fighting CH!
All I do is report what I have observed until now, my feelings and thoughts, as well as wishful thinking,
And yes I know that CB is a good way, and w very promising method, I have talked it over with more then one
Dr. and Professor I have talked to… and we all have come to the same conclusion, it bears more then just
potential, it is likely to be one of the future methods, but as long as it is on the ILAGAL end of the line, it is
a taboo for me for obvious resones… and (a taboo) for the team that try to help me in any way they can to battle this
malady.

I will try and add more info and the Pic. of the surgical procedure next week, as well as more info about the next
steps…..

Micahel



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