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Occipital Nerve Stimulators (ONS) (Read 30163 times)
wildhaus
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Re: Occipital brain stimulators (OBS)
Reply #50 - Nov 25th, 2008 at 10:08am
 
So the visit to the hospital is past me, unfortunately it is not the last one.
The data of the ONS is being evaluated, and some settings have been discussed and I will need to try and find better set up for on set CH episodes, and better set up for shadows, I have some more features that I can play with, but I don’t think it’s the features, its more doing things right at right time, some thing that seems I lack the discipline, or I am just being naďve, and taking the time when a CH episode is starting to build up, and do the necessary things to abort the episode, be it higher up the various signals to “abort mode” or just simply go to the O2, but that is me……..
The visit has also reviled the need to potion the leads that are going along the back (parallel to the spein) as it seems they are somewhat exposed and are causing some irritation, and the need to place the ONS “generator” in the abdomen some what better to avoid the discomfort it is giving me, and at times painful situations the procedure will take place on Dec, 17th, the delay is due to me hoping the situation will stabilize and things will get better, and there for save my self another round on the Surgical table, being optimistic.
But all in all, it seems very positive, and the successes is above our set targets, which were set at about 50-75% relive and the current rate is at just about 94%, so I should not complain……

Michael

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Re: Occipital brain stimulators (OBS)
Reply #51 - Dec 2nd, 2008 at 7:03pm
 
Oh Michael - 94%?  That's amazing!

Hoping you can get it straightened out and won't need to go for another round of surgery.

But overall, what fabulous news!  Thank you so much for sharing so much and documenting all.

Laurie
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wildhaus
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Re: Occipital brain stimulators (OBS)
Reply #52 - Dec 5th, 2008 at 3:04pm
 
It is some time now since I have updated my thread about the ONS.
It is, by now just over a month, and as it seems I still suffer from the surgical procedure, sort of sore feeling at the abdominal area, the area the ONS “generator” is placed, as well as in the back, the “cables” cause me some discomfort, all of the above will be “taken care off” in the upcoming surgery (Dec. 19.2008).
The ONS is still giving me very good relief from the daily pain, at the rate of 79-80%, and a better control over the “shadows”.
The preventive setting seems to do the “job”, at a very low setting, during the night I am at over 90% pain free, during the day it seems to work in a lesser efficiency (the preventive set up), I have to go to CH episode mode every day, almost, at about 10:00AM to abort the CH episode, a situation that takes about 10-15 min. with at times the help of O2.
I have noticed that the preventive set up level needs to be adjusted upwards, every few days, or change the frequency, or the pulse rate, in order to achieve the preventive effect, this development makes me wonder, and I have notified my treating Dr, about it, as I interpret this, the nerve seems to accustom to the pulse and the level needs to be adjusted, it dose not need to be a higher level just a deferent set up, and still this is a worrisome development, a development that needs to be looked closer, in order to develop a flexible pulse / set up.
One more puzzling development is the need to change frequently the abortive set up, the pain seems to be aborted, and after a minute or so the pain “jumps” over the hurdle set, and an acute need to higher the levels of the set up, this situation, about 5% of the CH episodes, seems to develop a life of its own, and are equivalent to the CH episodes that, prior to the surgery, have been episodes that can not be controlled nor by O2 or Zomig Nasal (in my case) or any other abortive method I had in use.
I am still convinced that the ONS was the right decision for me! I do get a high rate of relief, and I think all the “little” set backs as described above will be solved with time, and corrected. The ability to get a full night sleep, with out the need for medications, be it abortive or preventive, and a daily routine, work, as well as family life, and social life with out the need for any preventive meds. and only 4 Zomigs Nasal in about 4 weeks, has improved my life, as well as my health. I do still need the O2 as described above for the non controllable CH episodes.
I do need still to take the medication to fight the adverse effects of the nerve block with corticoids, but it is for a limited time….

Michael

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Re: Occipital brain stimulators (OBS)
Reply #53 - Dec 5th, 2008 at 6:12pm
 
Michael, sadly, the beast is a clever one.  But I'm sure you're smarter and you'll figure out the right set up to beat him back!

I'll be thinking of you on the 19th.

Laurie
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wildhaus
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Re: Occipital brain stimulators (OBS)
Reply #54 - Dec 9th, 2008 at 2:17pm
 
So, If every thing is all right, I have my cold over, and nothing ells hits me, the last surgical procedure will take place on the 19th of December , I will join the “forces” of the hospitalized persons on the 18th in the late afternoon, straight from work…. during the procedure, the leads to the Occipital nerve will be adjusted, in the upper back, to avoid the discomfort I have from it now, and better strain / traction relief, in order to avoid the stress on the leads, or the muscle it is connected to. the “generator” will get a better placing, that is the “pocket” will be adjusted to avoid stress on the abdomen when bending, or during sports / skiing. The procedure should not take to much time, so will “run off” the hospital on Sunday  21st of Dec. or latest 22nd of Dec. and will see…. but I am happy I do get good relief from my CH episodes, and that the ONS “experience” is getting to an end.
Michael

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ClusterChuck
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Re: Occipital brain stimulators (OBS)
Reply #55 - Dec 12th, 2008 at 1:41am
 
Michael,

I just had my first visit to the Pain Management Center (the first step to me getting the same thing) and they were not too helpful.  They were trying to tell me that due to the pain being located in the front of the head, the Occipital nerve placement will not do anything positive for them.  They said that I needed to get two Sub-Orbital leads added to the system in order for it to work.  They are two very fine leads that travel around the head, just under the skin, and then are placed just above the eyebrows.

According to them, these are used in conjunction with the occipital nerve leads.  They recommended that I go see a doctor down in Fayettevill, NC (about a two hour drive for me) who used to practice out at Duke University.

I am a bit nervous of doing the occipital process, never mind adding two more leads.  Besides, I can't recall ever hearing about this procedure.

Does anyone know of positive (or even negative) results from the sub-orbital leads?

Chuck
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Re: Occipital brain stimulators (OBS)
Reply #56 - Dec 12th, 2008 at 6:19am
 
ClusterChuck wrote on Dec 12th, 2008 at 1:41am:
Michael,

I am a bit nervous of doing the occipital process, never mind adding two more leads.  Besides, I can't recall ever hearing about this procedure.

Does anyone know of positive (or even negative) results from the sub-orbital leads?

Chuck



Quote:
I am a bit nervous of doing the occipital process
You dont have to, you see I am still going......

Quote:
results from the sub-orbital leads?
I ahve just called the hospital and asked for Info. as well as a¨call to Bosten....

will let you know..... as well will post it, if I can....

Michael
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wildhaus
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Re: Occipital brain stimulators (OBS)
Reply #57 - Dec 17th, 2008 at 2:20pm
 
And again, tomorrow to the hospital, for another round, to adjust the ONS, the leads to the head, and corrections on the abdominal “pocket”…… so I will have it better after the corrections….
I didn’t think I should trade less CH episodes with discomfort due to the ONS, and the neuro-surgeon was the same opinion, wonders do happened…. Dr’s do agree with “normal human being”….. (just being sarcastic, if you didn’t notice) But he really is a very understanding and helpful surgeon…..
Michael
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ClusterChuck
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Re: Occipital brain stimulators (OBS)
Reply #58 - Dec 17th, 2008 at 4:45pm
 
wildhaus wrote on Dec 17th, 2008 at 2:20pm:
And again, tomorrow to the hospital, for another round, to adjust the ONS, the leads to the head, and corrections on the abdominal “pocket”…… so I will have it better after the corrections….

Yes, Michael, I have been watching the calendar, to know when you are due for another round, under the knife.  GOOD LUCK tomorrow!  We will be thinking of you!

wildhaus wrote on Dec 17th, 2008 at 2:20pm:
Dr’s do agree with “normal human being”…..

Yes, I have heard that they do listen to "normal" people  ...  But why are they listening to you?  I know you are FAR from "normal" ... LOL!!!

Chuck

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Re: Occipital brain stimulators (OBS)
Reply #59 - Dec 17th, 2008 at 4:51pm
 
I got a phonecall from Professor emeritus Ottar Sjaastad here if i would be interrested in this.From what i could understand from Ottar and from Michael have told us its the same thing.It is about to start in the spring here at the competencesenter for headaches at St,Olavs hospital in Trondheim.I have not given him an answer yet bc i am not sure what to do,and will use some time to think about it

Svenn
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wildhaus
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Re: Occipital brain stimulators (OBS)
Reply #60 - Dec 18th, 2008 at 1:08pm
 
Am in the hospital..... boring as can be..... wonder what  will be.......
and the Vampire (blood drawing Nurse) is looking for me......
so I better start to run......

I need to go to the Maldives.... for some sun....  fun...... and some vacation....


Michael
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wildhaus
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Re: Occipital brain stimulators (OBS)
Reply #61 - Dec 18th, 2008 at 2:37pm
 
ClusterChuck wrote on Dec 17th, 2008 at 4:45pm:
I know you are FAR from "normal" ... LOL!!!

Chuck


Chuck,
Do I remained you of your faults? and on a public board.....

but on the other hand did you ever see a "normal" Clusterhead....... other then my self.......

Michael
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wildhaus
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Re: Occipital brain stimulators (OBS)
Reply #62 - Dec 18th, 2008 at 2:46pm
 
The Mad Viking wrote on Dec 17th, 2008 at 4:51pm:
.I have not given him an answer yet bc i am not sure what to do,and will use some time to think about it

Svenn


To give an answer is not to do it yet..... and to think about it, is more then OK....
Svenn the way I know you, I think you should look into it and listen to the ppl. in Trondheim, it might give you some answers, that will help you in your "thinking about it"

I cant say it is the right thing for you......  but do look into it, it just might help you the way it helped me......

Michael
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Re: Occipital brain stimulators (OBS)
Reply #63 - Dec 18th, 2008 at 3:06pm
 
Michael,

As always you know I wish you the best of luck.

Chuck,

My first implant was bilateral occipital with right supraorbital.  I only had one of the supraorbital leads placed, on the side with the worst CH's for me, and it seemed to help tremendously.  It is a bit of an older school of thought that the occipital nerve stimulator will not help with frontally located headaches, I'm afraid.  About 4 years ago, that's what I was told for the reason the procedure would not really help me.  Now there are 2 studies (One in Lancet and one in Lancet Neurology) who prove this to be false, that the occipital leads do indeed help people with CH, with pain located primarily in the front of their head.

BUT, having said that, there is a possibility that the supraorbital leads do add a benefit.  I, for one, believe this to be the case.  Most of the battery packs cannot sustain 4 leads: 2 occipital, 2 supraorbital.  Several battery packs CAN sustain 3 leads, which would allow for 2 occipital and 1 supraorbital on the side of your choice.  Additionally, they don't have to place the occipital leads bilaterally, but I feel that my CH would just switch sides and become worse on the left side if I didn't have the bilateral occipital leads.  I believe one of our own who had the ONSI w/supraorbital actually recently got bilateral occipital and bilateral supraorbital with 2 battery packs to allow for all 4 leads.

If you want to know more, I'd be happy to get any info you need!

Michael - sorry to jump your thread!  Just don't see the need to reinvent the wheel when a few of us have already gone through the supraorbital leads along with the occipital ones. Smiley

Hugz,
Carrie Smiley
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Re: Occipital brain stimulators (OBS)
Reply #64 - Dec 18th, 2008 at 5:02pm
 
Lizzie2 wrote on Dec 18th, 2008 at 3:06pm:
Michael - sorry to jump your thread!  Just don't see the need to reinvent the wheel when a few of us have already gone through the supraorbital leads along with the occipital ones. Smiley

Hugz,
Carrie Smiley



In no way you have "jumped " my thread..... It is not my thread, it is a thread for all of us, and any input is important.... the more we know the more info. we have, and the more knowhow we collect, the benefit for all is bigger.... and might help some more of us all.....

Michael
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Re: Occipital brain stimulators (OBS)
Reply #65 - Dec 20th, 2008 at 3:15pm
 
The surgery went as planed... I believe it is this time better, but we will have to see,
time is the judge of this things, but as an over all , it is and stays (?) a successful adventure,
I have  still an 83% success rate, and that is more then I would have asked for.... and am very grateful
for the gift I was given! Not only less CH episodes, also almost no meds to take, and soon when the
secondary adrenal insufficiency is again normal I will be meds free.....  I just hope I am not hoping to much, and being overly excited, or overly optimistic, and the the harsh realty of CH will find a way
to get back at me.....

Michael


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Re: Occipital brain stimulators (OBS)
Reply #66 - Dec 21st, 2008 at 2:26am
 
wildhaus wrote on Dec 20th, 2008 at 3:15pm:
The surgery went as planed... I believe it is this time better


Great news, Michael!

wildhaus wrote on Dec 20th, 2008 at 3:15pm:
I have  still an 83% success rate,


WOOHOO!!!!  That is SO good to hear!

wildhaus wrote on Dec 20th, 2008 at 3:15pm:
I will be meds free.....


Are you saying that you will not have to take anti-rejections meds?  I thought you would have to take those for the rest of your life.  Or is that just when you get an organ transplant?

Chuck

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Re: Occipital brain stimulators (OBS)
Reply #67 - Dec 21st, 2008 at 3:28am
 
I am done with the Hospital for now...... going home.....
so am very very happy........  even if  I still have some
pain, its better at home then staying at the hospital.....

Michael
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wildhaus
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Re: Occipital brain stimulators (OBS)
Reply #68 - Dec 21st, 2008 at 1:30pm
 
I am back home, and kicking…. some what sore, and some pain, but all in all happy to be home!
I am adding some images of the surgical procedure, the implantation of the probes into my head….
as well as an X-ray of the probes…. in my head.
(I am using links and not images, the images are very descriptive)

The first image is of the marking on the top of the neck / base of the skull

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The next image is the base of the skull opened and the insurgent of the probes (right) into the skull base.

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next 2 images, both probes are inserted, in the second image the gloved hand is over the head.

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X-Ray image of the position of the probes in my head.

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“anchoring” the probes at the base of the skull.

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next 3 Images are leading the “cables” to the lower back

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I believe this will give you some better understanding of the process I have been going trough,
I do not try to convince or promote this procedure! I have promised to let you all walk with me trough
this journey and report as honestly and objectively as I can, with the hope that it will help me at the end
of the road, and might be of help for some fellow sufferers.
I would like to stress that this procedure is not trivial and should be considered only, as a last alternative,
IT IS
a reversible procedure, but as any other surgical procedure,
it is not without risk
! and as in a post from Bob Johnson,
Neurostimulation for Chronic-brief overview, and I quote „ONS has the advantage of being harmless and reversible. At this stage, it should be the preferred first-line invasive therapy for iCCH.”
I do not know if I am at the end of the road, and to be honest the 83% effectiveness I enjoy now are
an indication, but it is not yet a result, it is a trend, after about a year I will be able to say I have a tool
I can fight the malady, in a comprehensive and efficient way, BUT
IT IS NOT A CURE!
I still have CH
and I still fight, I just have a tool to improve the quality of life, and one step closer to win the war (?)

Michael


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Re: Occipital brain stimulators (OBS)
Reply #69 - Dec 21st, 2008 at 4:57pm
 
Michael,

Yikes!  The photos of your surgery give a whole new meaning to the lengths some cluster headache sufferers must go in order to regain a reasonable quality of life.  Thank you for sharing them with us and for the very sound advice.

Take care and get some rest,

V/R, Batch
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Re: Occipital brain stimulators (OBS)
Reply #70 - Dec 21st, 2008 at 5:05pm
 
After seeing those pic's, I know why I keep putting off my C6-7 fusion...

Thanks for posting them Michael,

Roland. Wink
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Re: Occipital brain stimulators (OBS)
Reply #71 - Dec 21st, 2008 at 7:57pm
 
Michael, I'm glad everything went well and that you're home and doing well!

Haven't gotten the courage up yet to look at the pics during surgery.

Hope that 83% number keeps moving up.

PFDAN,

Laurie
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Re: Occipital brain stimulators (OBS)
Reply #72 - Dec 21st, 2008 at 10:40pm
 
Michael, it was good talking to you, earlier.  Glad you are now home.  At least now you can sleep in your own bed, and recuperate in familiar surroundings.

Thanks you for this whole thread.  It is a very informative journey, that you have documented EXTREMELY well.  The pictures are great too.

I wish you continued success, and I will talk to you again, soon.

Chuck
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Re: Occipital brain stimulators (OBS)
Reply #73 - Dec 21st, 2008 at 11:23pm
 
Michael I'm delighted to know that you are home from the hospital and on your way to recovery... Thank you for the fascinating pictorial narrative.

As difficult as it will be....GET SOME REST!!!!!

... and Happy Chanukah to you and your family.


with warm regards,
Tony
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Re: Occipital brain stimulators (OBS)
Reply #74 - Dec 23rd, 2008 at 11:30am
 
An anecdote….. during my stay at the hospital - during the pre Op (pre-surgical) I got a CH-episode, must be the situation that triggered it, I don’t know, but the reaction of the team was very “amusing” they simply didn’t know what do make out of it……  it seemed to me as they were parallelized, and helpless, only after I told them to give me O2 (which was ready for me) and run to get a Zomig out of my room, and the appearance of the head anaesthesiologist, things got calmed, later I was asked by some of the team if that was CH-episode, and that they did know about the condition, and my personal condition, but have never been aware to the acute extremity, and the pain one must be suffering during a CH-episode, 2 of the “young” Dr’s said that the way my right eye “looked” is something you can not understand unless you see it “live”, the level of pain the face and the eye manifest, At the pre-op for the last surgical procedure it happened aging….. and seemed, to be in shock again…..  but way better reaction….. just send me into deep sleep……
Michael
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