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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Occipital Nerve Stimulators (ONS) http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1221233650 Message started by wildhaus on Sep 12th, 2008 at 11:34am |
Title: Re: Occipital brain stimulators (OBS) Post by Karl on 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.
|
Title: Re: Occipital brain stimulators (OBS) Post by DennisM1045 on 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- |
Title: Re: Occipital brain stimulators (OBS) Post by thebbz on Sep 12th, 2008 at 1:22pm
I'm with Dennis. Good luck, you deserve something that works for you.
all the best thebb |
Title: Re: Occipital brain stimulators (OBS) Post by Jean on 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. ::)
Much luck, Jeannie |
Title: Re: Occipital brain stimulators (OBS) Post by Batch on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by Batch on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Sep 29th, 2008 at 1:59pm |
Title: Re: Occipital brain stimulators (OBS) Post by danaj60 on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by E-Double on Oct 8th, 2008 at 1:17am
much love to u brother.
a happy new year and a peaceful journey |
Title: Re: Occipital brain stimulators (OBS) Post by maalstroom on 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. |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Oct 19th, 2008 at 9:58am
one more week.........
and then? Micahel |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by flipperlips on 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=hug.gif] Jen |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by thebbz on Oct 27th, 2008 at 8:04pm
Thinking of you and hoping for relief.
all the best thebb |
Title: Re: Occipital brain stimulators (OBS) Post by Batch on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by Jimi on Oct 28th, 2008 at 12:22pm
We are pulling for you Michael. I am hoping this will be your magic bullet.
|
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on 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 (St Gallen 311008498) |
Title: Re: Occipital brain stimulators (OBS) Post by Jackie on Oct 31st, 2008 at 7:23am
Positive thoughts and vibes to you, Michael.......such a journey you are on, Sir....
Updates very informative....thank you. Wishing you well, Jackie |
Title: Re: Occipital brain stimulators (OBS) Post by thebbz on Oct 31st, 2008 at 9:05pm
Still pulling for ya here Michael. Hey you think that has enough power to start the car? ;) Just kidding. Keep up the fight.
the bb |
Title: Re: Occipital brain stimulators (OBS) Post by Batch on Nov 1st, 2008 at 1:57pm
Michael,
Your photos give a new meaning to the term "Wired." Hang in there... I know this can't be a pleasant phase for you, but I'm confident the end results will be worth the pain and discomfort associated with this procedure. Take care, V/R, Batch |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Nov 3rd, 2008 at 12:34pm
Hi
Just finished the second round.... very much groggy... Michael |
Title: Re: Occipital brain stimulators (OBS) Post by thebbz on Nov 3rd, 2008 at 12:38pm
Hope ya get some rest and shock the demon into submission. 8-)
the bb |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Nov 4th, 2008 at 5:34am
Hi
As it seems for the moment, with only some pain meds. that I shock the demon away....... I cant say with high certainty that it works..... as I still do use some pain mads for the surgery wounds...... but the attacks are now 1 (tolerable) in the morning, at 5 am, and if I use the “Shocker” correctly and supplement with O2 at 30 Lt./min. With a proper mask (I AM AN O2 PUSHER). I have the attack under control with in about 5-7min. Again it is way to early to judge, and hauler, I have the magic bullet, for start it is not the magic bullet, and I don't think it will ever be! It is simply a good tool to reduce the suffering, mainly for sufferers that are limited in the choice of preventives, or have no preventive that work for them...... or are limited by other medical condition. But I do believe, and confident that this alternative is a very comprehensive alternative for CCH'ers, and if any one would like to have more information do ask, I will try to provide with an answer, or ask the Dr's if they can help me and provide with a proper answer..... or talk to the specialists from the manufacturers Advanced Bionics in Boston and in Switzerland. Michael |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Nov 4th, 2008 at 10:35am
Tks. Chuck for posting the link.....
I didn't feel like being stigmatized as a “shocker” pusher I am already tainted as an O2 pusher...... (and very proud of it) No need to add to the titles..... Michael |
Title: Re: Occipital brain stimulators (OBS) Post by Lizzie2 on Nov 4th, 2008 at 10:59pm
Glad to hear it is helping, Michael!
I, too, am happy to talk to anyone interested in occipital (and supraorbital) nerve stimulator implants for chronic cluster headaches. My device was made by Advanced Neuromodulation Systems (ANS) which is a division of St. Jude Medical. I have researched extensively into this, and I am very happy with the results I got out of this surgery. There is a smaller company working solely to fight cluster headache thru a slightly different stimulation device, but I'm not at liberty to really talk about it as it is still under new development, but I anxiously await updates about this other technique as well! Michael -I understand the desperation one feels to get to this point. I hope it continues to have the success for you that it had for me. I count each day until I can get my stimulator re-implanted now that my infection is gone. PF wishes, Carrie :) |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Nov 6th, 2008 at 9:48am
as I am at home with way to much time on hand
I will put a full report until now, as well as why I am useing the OBS I am uesing...... I need to get some more information and Pic. to have a comprehensive summery...... Michael 61108748 |
Title: Re: Occipital brain stimulators (OBS) Post by Garys_Girl on Nov 8th, 2008 at 6:06pm
Michael, thank you so much for sharing all of this with us. I'm so sorry things have not gone as smoothly as any of us would have hoped, but it does seem that the results are promising!!!!!!!!!! It looks uncomfortable, but I hope well worth it.
All my best, Laurie |
Title: Re: Occipital brain stimulators (OBS) Post by ClusterChuck on Nov 15th, 2008 at 7:22am wildhaus wrote on Nov 15th, 2008 at 7:01am:
Hmmmmm ... Michael are you talking to me? LOL! Yes, I mentioned this to my neuro, last week. They are setting me up with an appointment to the pain clinic, here in town. It looks like I may have to jump through some hoops, first, before I can progress very far into doing this. I am still very interestd in doing more research into this path of battle. Thanks for the update, Michael, and I hope you continue to improve in your battle plans, with fine tuning and all. Chuck |
Title: Re: Occipital brain stimulators (OBS) Post by Lizzie2 on Nov 15th, 2008 at 11:47am
Glad to read your updates, Michael. I am glad you have found such success thus far, and I think your technical data recording is excellent. I, myself, am scheduled for a new implantation on January 6 with the ANS Eon Mini, and, like you, have spent a good deal of time analyzing the benefits of each device, but have chosen the one recommended to me by my neurosurgeon. To the best of my knowledge, my neurosurgeon will implant any of the 3 major devices out on the market, the ANS Eon Mini (or other ANS devices), the Medtronic RestoreULTRA, and the Boston Scientific Precision. He did recommend which one he felt was best for me and why, and I chose to go that route.
I'm very anxious to hear how you will be optimizing the use of your nerve stimulator. Will you have a handheld programmer device that allows you to view your used programs and settings? I wish you the best of luck in finding the optimal programs to achieve the best pain relief possible! Take care, Carrie :) |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Nov 15th, 2008 at 1:13pm
in Reference to my post of today, and Carrie’s comment,
the hand held unit or better called remote control I have is the same as any one would get that is using the device I have implanted, the only difference is that I have some more functions that I can control, and soon I’ll be able to download the accumulated info on the remote to my lap top, so I can map the use and the obvious info such as CH episodes or shadows to the map; the different factors used against the CH episodes, so I can see what constellation on the Stimulator (Marta, my wife calls it Stimi) is providing me with the most efficient relief, and what constellation yields the highest preventive effect. At the moment I think that, as CH has very different orientations, no situation is the same as the last, other than time, and the excruciating pain characteristics’, it will be very difficult to find a ‘one for all’ programm, or for that matter 5 base programs. But it is way to early to speculate, it is a mountain of data to process and make sense of, so it will take some time, and “playing” to find some answers to very many open questions. I will try and find some answers for my self, and try and provide honest and non subjective information along the process of adjusting to living with Stimi and I do hope that some of our fellow sufferers will try and go this test period venue….. the more try the more info we have and there for better base for educated choice, and it is not about what device and manufacturer, its about the idea of nerve block electronically. Carrie, I wish you all the luck this time around, you know what you are going into, and what benefits you have gotten, and will get soon again. Micahel |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Nov 15th, 2008 at 1:26pm ClusterChuck wrote on Nov 15th, 2008 at 7:22am:
talking to you? who are you? Yes chuck, but not only to you, we do have some fellow sufferers that are meds resistant / sensitive or do have medical condition that prevents them from using main stream medication (preventive or abortive) and I believe it could be a new possibility, to look closer, and to talk it over with a neurologist and a neurosurgeon, and get an input considering the situation one is in be it meds sensitivity / resistant or medical condition Micahel |
Title: Re: Occipital brain stimulators (OBS) Post by Lizzie2 on Nov 15th, 2008 at 2:06pm
Thanks, Michael, for your information. Very interesting regarding your remote and the ability you will have to track your program use, and so on. I think that's wonderful!! I have charts that I keep to track my headaches and also the stim programs I use, but nothing as exact as what you are proposing. I'm curious about it because it would be really something I'd be interested in doing myself, if it is possible with the ANS system! I've not yet asked my ANS representative, who has been incredibly helpful with so many things related to the device. The reason I asked about the handheld programming device is because I've seen him work with that and be able to "see" what programs I am using, and how frequently. I'd love to find some way to be able to see these things myself, without requiring the handheld programming device!
Take care, Carrie :) |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Nov 16th, 2008 at 2:20am
Carrie, do ask the ANS rep. most likely he has the programs the same or even better then my.
As most (if not all) of the stimulators have been developed for Spaniel pain and some other disorders, and not for CCH or such, the use of Stimulators on CCH is a new field that needs to be properly explored, documented, and there for the manufacturers should provide you with tools to help you map and document the effectiveness of the stimulator, its to there benefit, and to all of us, it will make it simpler for the sufferers that will choose this venue at a later time to have the information on hand. Carrie, in reference to your post on the MB, I wish you, again, all the luck this time around, it is so nice to have a tool that provides hope, and more, a higher quality of life with less pain, you have been in the (somewhat) PF zone, go for it and try again, it can be a jolty journey, but at the end it is as if the light sheins just a little bit brighter………. Michael |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Nov 20th, 2008 at 1:36pm
In the past few days I have noted a few new experiences when using the ONS,
the one that is some what disturbing for me: it seems that on an onset of an CH episode, if the timing and set up of the ONS are not adjusted correctly, or the intensity increased on time, speculating time, (will it turn up to be an CH episode? or “just” one more shadow) the reaction time is very limited and mostly missed…… When “cranking up” the ONS to the CH “episode mode”, it seemed to intensify, or better said sharpen the “sensation” of the episode…. but I am not confident I have this observation correctly “noted” or was it just simply inner rage for missing the signs or bluntly ignoring the signs. I have also observed that with lower intensity I achieve a greater preventive effect…also for “shadows” again this is rather speculative as I‘ve been trying this constellation (low impulse) just for the past 2 days…. I did go at the beginning of the week through a rather rougher time, a CH episode in the morning and one more in the late evening, I cannot place the occurrence of the episodes, unless I can attribute the change to a light cold I am having, some thing that in the past seemed to intensify (in No. and intensity) of the CH episodes. I do seem to find a fine balance, a less distracting sensation to the pulse of the ONS during concentration periods, with out diminishing the preventive effect. During CH episode, I still do not have a set up that will abort the episode, it seems that I have a good set of constellations that “take” the edge of the episode in combination with O2 at 20 Lt./min. I still do avoid the use of Meds, be it preventive or abortive, had to use Zomig nasal only 2 times since the ONS was “put into me”. I do seem to have a rather prolonged recovery time (in my eyes) I still feel some what sore, and hurting at times at the abdomen where the ONS Generator was implanted, and very limited in physical activities… as well as working…. some thing I dislike, and makes me feel useless, and unproductive…. a feeling that dose not add a positive aspect to the recovery period……. Michael 201108977 |
Title: Re: Occipital brain stimulators (OBS) Post by Guiseppi on Nov 23rd, 2008 at 1:34am
Awesome news Michael. Here's hoping you've turned a corner you won't be looking back on anytime soon. Sleep well brudder!
Guiseppi |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Nov 24th, 2008 at 1:56pm
I will return to the hospital for the first time after the surgery, not that I am keen to see any of the team
that helps me at the medical centre in St.-Gallen (Switzerland), (KSSG), I have to be honest I have had more then I had ever “planed” to be under the “hand” of the (very competent) Dr’s, so I do not feel any desire or need to see them! but I have to, I need to be cleared to work again, so Ill be nice / good “boy”, and I might “get lucky” and will go again to work, I need to return to my normal routine! I most likely will be a bit nicer / friendlier person…….. I Visit the hospital also for a routine check-up, adjustments to the ONS, down-loading the info from the remote control of the ONS and add missing / further info for the ONS case study. Micahel |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on 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 naïve, 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 2511081075 |
Title: Re: Occipital brain stimulators (OBS) Post by Garys_Girl on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on 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 512081163 |
Title: Re: Occipital brain stimulators (OBS) Post by Garys_Girl on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on 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 0912081212 |
Title: Re: Occipital brain stimulators (OBS) Post by ClusterChuck on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Dec 12th, 2008 at 6:19am ClusterChuck wrote on Dec 12th, 2008 at 1:41am:
Quote:
Quote:
will let you know..... as well will post it, if I can.... Michael |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus 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….
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 |
Title: Re: Occipital brain stimulators (OBS) Post by ClusterChuck on Dec 17th, 2008 at 4:45pm wildhaus wrote on Dec 17th, 2008 at 2:20pm:
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:
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 |
Title: Re: Occipital brain stimulators (OBS) Post by The Mad Viking on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Dec 18th, 2008 at 2:37pm ClusterChuck wrote on Dec 17th, 2008 at 4:45pm:
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 |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Dec 18th, 2008 at 2:46pm The Mad Viking wrote on Dec 17th, 2008 at 4:51pm:
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 |
Title: Re: Occipital brain stimulators (OBS) Post by Lizzie2 on 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. :) Hugz, Carrie :) |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Dec 18th, 2008 at 5:02pm Lizzie2 wrote on Dec 18th, 2008 at 3:06pm:
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 |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on 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 2012081371 |
Title: Re: Occipital brain stimulators (OBS) Post by ClusterChuck on Dec 21st, 2008 at 2:26am wildhaus wrote on Dec 20th, 2008 at 3:15pm:
Great news, Michael! wildhaus wrote on Dec 20th, 2008 at 3:15pm:
WOOHOO!!!! That is SO good to hear! wildhaus wrote on Dec 20th, 2008 at 3:15pm:
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 |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by Batch on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by Rolomatic on 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. ;) |
Title: Re: Occipital brain stimulators (OBS) Post by Garys_Girl on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by ClusterChuck on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by Artonio on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on 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 |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Dec 29th, 2008 at 2:30am
Stitches are out.... doing much better.... still some irritation from the
surgery.... head.... a higher frequency of CH episodes, so success rate is at about 75% at the moment, have no explanation, but looking for solutions.... all that did not stop me from skiing yesterday, some thing that have caused some pain at the abdominal “pocket”, oh-well seems that one can not have it all...... Michael |
Title: Re: Occipital brain stimulators (OBS) Post by Heather on Jan 1st, 2009 at 11:06am
I hope your doing well Michael. What is CB?
|
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Jan 6th, 2009 at 4:14am
At the moment I experience higher pain and higher CH episodes, per day 3 episodes of about 7Kp, we do not know why, it sets the results rate at 50% at the moment.
The most likely reason will be, due to my way to early, returning to “normal way of life” that is extensive skiing which most likely has shifted the positioning of the “sensors” in the head, I have started to do sports – skiing just under a week past the last surgical procedure, oh well, but it is my way of cooping with recovery.... even if it is in a way contra productive.... as it seems, it is a speculation and has to be yet confirmed...... I will have some tests and Imaging done soon to try and see what is going wrong! or try an identify the cause of the reduction in efficiency of the ONS. We do believe that the “set back” can be fixed, and achieve higher yield, back to 80% and higher, just needs better self control, and less of “arrogance” on my behalf....... be more self controlled....... and less reckless..... I do go on with my normal life schedule, and sports, at the moment skiing, and avoid any medication.... only the use of O2 to abort the CH episodes and with the exception of a Zomig Nasal about once a week, as well as the on going treatment for Secondary Adrenal Insufficiency, which has no connection (we believe) to the CH episodes....... Michael |
Title: Re: Occipital brain stimulators (OBS) Post by E-Double on Jan 6th, 2009 at 6:28pm
Wishing you a ton more PF times.
good luck |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Jan 28th, 2009 at 12:58pm
I haven’t posted for some time now about my journey with the ONS (occipital nerve block), the improvement rate is at about 80-83% (1 episode a day with ONS / average of 6 episodes before with minimal or without preventive medication) I have days without any episodes at all (shadows or attacks) and (rarely) 2 episodes a day.
I still experience some skin sensitivity around the scar sites be it at skull base or at the lower abdomen at the “generator / Battery” position, as well as some irritation (nerving) due to “Stimulation varies with head position” – a situation that demands adjustment of the pulse, depending on the current activity, when using the ONS as preventive, about 22 hours a day. I have to mention that it takes some time to get accustomed to all the variations, feel in the head, and the need for disciplined reaction to the situations, increase intensity at onset of an episode, and carry at all times the controller for the ONS, I still forget at times to carry it with me..... I am still very carful with suggesting, or recommending to choose this venue, I believe it has a big potential, but it is still not fully ripe, from reports that I have obtained and have gotten from fellow CH’ers it needs still more research and development, to be used as a comprehensive method for CCH (Chronicle CH), although I would urge CCH sufferers that most or all the common methods have failed or have not gotten satisfactory relive to look deeper into this venue, it has a comprehensive potential. The ONS is a good method for me in combination with O2, and very rarely I have to resort to Zomig Nasal 50mg mostly when on the road without O2, and in stress situations. Michael 2801091814 |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Feb 8th, 2009 at 2:28am
I am still having a solid result with the ONS, the few CH episodes are mostly night episodes, and very rare CH episodes during day time, mostly due to poor reaction and low discipline.
The night CH episodes, about every 4-5 days, at a level of 6-7Kp, the simplified explanation, the night set up (program) is a compromise between comfort (tolerability) and efficiency, a very difficult fine line which most of the time fulfils its purpose, preventive for night time CH episodes. Day time CH episodes, about every 8-10 days, are the ones I have the most difficult “time” with, due to my poor judgment and low discipline, the CH episode flares to and beyond control, adding to it is the situation at work, stress at times or just the simple the wish of “pleas don’t see me in my agony”, and the (silly) hope that the on setting CH episode is just a shadow, and it will pass soon, although I am aware that it is a full scale CH episode, as I say poor judgment, and still very normal.... for me..... the day time CH episode then gets out of control and the day is just an on going CH episodes, up to about 4 a day (and more) which I need to at time “kill” with Zomig Nasal, or in most cases with O2 (soon to be a demand valve) one thing that works for me almost every time! Mid month (Feb. 25, 2009) I will most likely undergo another surgical procedure, to “fix” and alien the sensors (line) better over the Occipital Nerve, this in order to try and achieve a better preventive effect from the ONS, Try to provide a higher yield with low stimulation, and with the better enlightenment avoid (?) or reduce (?) the occurrence of the night time CH episodes, all this depends upon successful (extensive) imaging of the ONS and the brain (explicit the Occipital nerve) with the hope to get a good imaging of the ONS and the nerve in deferent positions and situations, in order to try and “map” the highest efficient position of the ONS to the nerve (Occipital Nerve)in the deferent positions, I am positive (but not totally convinced) that this imaging will help understand better the efficient functioning of the ONS, and yet hope for good results. I will try and have some of the images posted, with the proper explanation soon after the hospitalization...... Micahel 0802091890 |
Title: Re: Occipital brain stimulators (OBS) Post by wildhaus on Feb 23rd, 2009 at 12:30pm
And again a trip to the neurosurgical department at KSSG (the regional medical centre St. Gallen), and probably once more adjusting the leads and the ONS “contacts” over the Occipital nerve, with the idea of achieving a grater effect, and there for a higher yield, mostly at night, as the ONS is set on night programming, preventive program.
As the night program is a fine balance between comfort or better said tolerance to the signal, to provide a peaceful sleep pattern, and an effective preventive pattern, the proper positioning of the leads and the ONS “contacts” “over” the nerve (Occipital Nerve) with the hope that a better alighenment will provide me with a better control over the night CH episode (about 4 times a week) at 23:00 (11PM) and with this (possibly) improvement the ONS will provide me with about 85-87% improvement, and I will probably not be satisfied.... I believe that with proper placement, correct use, and mostly on my end, a higher sense of discipline adjusting the ONS at the “right time” I can get to over 87% . I am positive that this alternative (Occipital Nerve Stimulation) is a very comprehensive alternative! but not for “every one”, only for the extreme cases, the ONS needs still to be researched and developed to be used as an alternative for “every one”, it is a radical and invasive procedure, (it is reversible), it bears some risks, as in any invasive procedure, but I would do it again.... if asked, and I recommend to all the extreme cases with CCH to look into this alternative, to explore it, and to seek guide’s by a neurosurgeon, it just might be a good thing for some, an alternative to provide some with a comprehensive treatment. Michael 2302091995 |
Title: Re: Occipital Nerve Stimulators (ONS) Post by MITYRARE on Mar 16th, 2009 at 11:04pm
Hi Michael,
I hope you are doing well. I have been following your journey for some time, including your own site. Very interesting stuff...you are a brave one, and I applaud you on fighting for your own relief. I have a close friend that has a benign brain tumour, and has chronic head pain...done everything from all the regular CH meds to Botox to morphine addiction and back...the docs had said there is nothing for her, but recently one suggested ONS and it has been written up recently in a Canadian Chronic pain sufferers publication... I have made her aware of your site and successes and disappointments and have printed of some of your stuff for her... it is a big decision for her, she is alone and one daughter at a distance... but with no other alternative she finds herself considering doing ONS ...the Docs are saying only a slight chance of any success and everything hinges on her tumour growth. Thoughts? Paul |
Title: Re: Occipital Nerve Stimulators (ONS) Post by mle134 on Mar 18th, 2009 at 8:09pm
Michael:
I want to thank you for making this information available. I have been accepted into an occipital stimulator study for a different headache condition and reading these posts has helped me put the procedure in perspective. I have a month to go before I even find out if I am eligible for a stimulator implant, but it's a little less scary after reading these posts. I hope you have continued success with your implant. :) Emily |
Title: Re: Occipital Nerve Stimulators (ONS) Post by wildhaus on May 2nd, 2009 at 1:11pm
2 weeks ago I have been for a visit to the neurosurgical department at the medical center in St.-Gallen Switzerland (KSSG), to try and adjust the stimulator, or better said to program the stimulator with the experience accumulated
since the initial programming (November 2008). I have had (prior to my last visit at the hospital) a notable decrees in the effectiveness of the stimulation, the night CH episodes are daily, up to 3 CH episodes a night and about 1 day time every 3 days, and 1 CH episode every 3 days, I used to be at a rate of 1 CH episode every 3-4 days until about 4-5 weeks ago. It was an improvement to my situation of about 85% from 5-8 CH episodes a day (av. 0f 6 a day) now I am at 50% !!! not that I complain, it is just puzzling, and more (for me) annoying! The new programming didn’t provide me with the hoped improvement! For the moment I (and my Dr.’s) do not know what the reason for this notable change is, and it is rather semantic.... I have to live with it and do what I always do, work, and enjoy life, and “hug” my O2 tank when I need it...... Will be at the hospital next week, and then we will start to make sense of the new situation, and find a way to improve the effeteness of the stimulator..... as well as do the on-going endocrinological tests and treatments, only 4 more to go..... Michael 0205092828 |
Title: Re: Occipital Nerve Stimulators (ONS) Post by wildhaus on May 6th, 2009 at 10:16am
Visit to the medical centre in St.-Gallen (Switzerland) is past me.....
will have some of the results tonight, but some will take a few days to analyse..... As for the procedure, didn’t go all to well, I had a massive CH episode during the testing, and some what panicked (how stupid of me), and took all the probes that I was hooked to of me, something that was very dumb, but it was to late, I had taken it off, so we have only some partial results about pH levels O2 saturation and some other data. The CH episode was not only violent, I could not get it under control with O2 or the stimulator (stimulator was off since Midnight), the O2 unit that was ready for me was a wrong set-up (only up to 10lt/min) with the wrong mask....... until the right unit had come, I was in way to much pain, anger and agony, to do things the right way, and lost totally the control of the situation, and panicked even more.... the next thing I did was to “hit” on a Zomig, and with that the test or what was left of it was out of the window....... and Marta’s (my wife) voice over the telephone, I called her, had helped me to get my self under control, and relax..... a simple “remedy” that works so often and so good for me...... I hate my self for getting so out of control, but with all the stuff looking at me so pitiful and not totally knowing what to do, and the wrong equipment just didn’t add to the situation...... Oh well some blood tests (about 120 min, Should have been over 5 hours.) are in..... but the CH episode and past episode data are simply not in...... I handled things wrong..... and we will have to repeat all of it in 4 month...... the extensive pre test values.... (testosterone and cortisone) are (I Hope) in, will know tonight Wonder what it will be..... The Bonviva (Osteoporoses Treatment), only one more time to go, and then (we believe) all the adverse reactions to the Occipital nerve block are corrected, and the adrenal gland is in good shape..... again! Michael 0605092896 |
Title: Re: Occipital Nerve Stimulators (ONS) Post by Batch on May 6th, 2009 at 2:40pm
Michael,
Sorry you had such a rough time during the tests at St.-Gallen. I know you're breaking ground with a lot of these tests and wanted to make sure you collected as much data as possible. Don't be too hard on yourself... but do start a check list... There have been times in my life when what I thought were carefully planned evolutions went out of control shortly after they started and turned to crap with astonishing speed resulting in far from expected results... I was fortunate to have someone more experienced around to view the the aftermath the first couple times this happened and they asked the simple but pointed question... "Did you learn anything?" and then follow up with the time tested adage... "P7" or "P7" also better known as "Proper Prior Planning Prevents Piss Poor Performance." I'll bet you pre-flight the oxygen therapy equipment before you try the next round of tests... Hang in there my friend. V/R, Batch |
Title: Re: Occipital Nerve Stimulators (ONS) Post by wildhaus on May 9th, 2009 at 2:55pm
I have in the past week or so lost another 20% of the effectiveness (I am now at 30% and less) using the stimulator that is about 5 CH episodes and more a day (day time and night time), I have no indication or plausible reason for the decrees in the effectiveness,
the Neurosurgeons as well as the manufacturer will try, with me to find out why...... it is a test unit and from the start of this journey I know that there will be set backs, and that it could be a rocky road; well it is now that the road is very rocky....... I do feel I am back to square one...... and I hate it.... Michael 0905092989 |
Title: Re: Occipital Nerve Stimulators (ONS) Post by MattyAA on May 9th, 2009 at 3:58pm
Do surgeons mentioned that perhaps body got used to the 'supression' on the occipital nerves and found 'bypass' to let neurons still to front of the face? Not sure about the idea behind this system, but it is vital for us all if it helps, I am sad it loses its work over time, actually I am fucking mad, because I want to see one day solution to this organism's fucking defect.
Sorry for the language but I carefuly follow your topic and I had really hopes up. |
Title: Re: Occipital Nerve Stimulators (ONS) Post by wildhaus on May 18th, 2009 at 6:22pm
I am working nights (a total of 10 nights), by it self already very stressful for me, and very hard…..
I am not used to it…… and my “Bio clock” is all the way messed up….. The night CH episodes have shifted to day time, about one and half hours after falling asleep, and then every 2 hours, in total 3 CH episodes a “night” or better said day time sleeping! Prolonging the “trying” to sleep at day time and leaving me some what, not totally fit…… The night time – working time is mainly pain free and the ONS is running high to prevent any occurrence of CH episodes or even “shadows”…… For the Neuro this bit of info is very important, it is as going into deep sleep dose have traceable connection and “digitally” reproducible….. I have not worked over the week end, and got to sleep during night time, CH episodes had occurred during night time…… and the went to work night again and the situation repeated it self, just during the day (day time sleeping). A text book situation….. Not that it can help me much, just validate once more that I suffer from CH, something I still refuse to except……. yes I still live in denial!! The total Nr. of CH episodes per day is back to 3-4 mainly “night time” and the ONS is giving me an acceptable performance….. back to just over 50% success rate…. Michael 1905093106 |
Title: Re: Occipital Nerve Stimulators (ONS) Post by Garys_Girl on Jul 7th, 2009 at 2:43pm
Michael, I am so sorry for all the ups and downs, but I thank you greatly for the updates. I am torn between showing Gary the most recent updates and not showing him them. He isn't expecting much anyway, I guess, but he has decided to go ahead with the surgery. He still suffers a minimum of 5 hits a day, as many as 11, though the average is still 7. They've gotten longer, and he is still in pain 24 hours a day. I wonder what will happen with that?
Anyway, didn't mean to co-opt your thread. I just felt a great deal of appreciation for your sharing your journey with us, and wanted to let you know that. I hope you are able continue to adjust things with the result of seeing continued improvement. Laurie |
Title: Re: Occipital Nerve Stimulators (ONS) Post by wildhaus on Jul 8th, 2009 at 3:13am
I had my ups and downs, I had times when I was thinking this
ONS was just a waste of time….. but when I look at the statistics I do have in the over all a significant improvement……. in numbers, I used to have up to 8 episodes a day…. with an average of 6 episodes a day, and now I am on an average of 2.5 a day…… and that is (for me) a blessing. Most important is; I am practically meds free, preventive meds. And try to avoid the use of abortive meds. namely for me Zomig Nasal. I do use during an episode O2 at about 25 Lt. / min. Only if I am on the road or due to low discipline on my behalf I am forced to use Zomig….. I can with confidents say it did what I was looking for…… but it needs patience, endurance and discipline until the set-up of the Stimulator is on the right setting…. and to accept (in advance) that it is not a magic built or a cure….. it is simply a “technical device” a tool to provide us with relief…. and a higher quality of life. I suggest before submitting your self to any surgical procedure, as with the ONS to try and see if one gets any relief by using Occipital nerve block (Suboccipital injection) it can be a good indicator that a surgical intervention might bring relief above marginal level….. I will ask Boston Scientific, and a Neuro surgeon to provide me with the latest information and studies, if available, and will try and post the information...... Michael |
Title: Re: Occipital Nerve Stimulators (ONS) Update Feb. 2012 Post by wildhaus on Feb 9th, 2012 at 12:56pm
Hello All,
Well… after four (4) years of use following the two surgical procedures needed to complete the implant, and a follow-up surgery to re-align the stimulator electrodes that migrated away, I'm about to have my fourth and final ONS surgery… This time the surgery will be to remove the entire ONS apparatus completely. Once again, the stress relief loop has detached from the underlying muscle and one of the electrodes is trying to migrate away. I've gone through a lot in an attempt to make the ONS implant an effective tool to manage my chronic cluster headaches. I endured months of recovery from the original implant surgery procedures and frequent trips to the hospital to upload and preset adjustments to the stimulation patterns. My doctors and I arrived at the decision to remove the ONS system based on two main reasons. The first is my lifestyle. I refuse to let cluster headache rule my life. If I'm pain free for a few hours, I want to spend those few hours the way I have all my life… doing the things I like best… Any thing less than that and I'm cheating myself… I'm 51 and physically active. I live in the Swiss Alps and I love to ski. My sons and I can strap on our skis in the backyard and we can ski down to the nearest ski lift in a matter of minutes. If it's not too windy or snowing too hard, I go night skiing after work. It's all this physical activity that wreaks havoc on the implanted ONS system's stress relief attachments, wires and electrodes. With the prospect of another surgery to re-suture the detached stress relief loops in the wire to underlying muscle and become a house Hobbit with a bad attitude waiting for the wounds to heal for the next month… The decision was easy… Out with the ONS! The second reason for removing the ONS is even more compelling… I no longer need the ONS to control my cluster headache. I have a better and far more effective method of controlling them. I'm now using the ant-inflammatory regimen that Pete developed and it's working much better than the ONS. Unbeknownst to me, my wife Marta, had been keeping up with Pete's posts on the effectiveness of this regimen and finally sent him an email asking for the exact recipe of supplements… Pete responded within minutes and she placed the order for the supplements over the Internet with a source in the States. Don't get me wrong… Swiss medicine ranks among the best in the world, we just don't have the same selections of over-the-counter supplements… It's best to agree with your wife every now and then... Even more so if she comes from Texas... She has lived with my cluster headaches too… so I started the regimen... It took me a month on this regimen with an increase in the vitamin D3 dose from 10,000 IU/day to 15,000 IU/day, and two lab tests for 25(OH)D, before it finally started working. I'm not totally pain free, but the frequency and intensity of my cluster headaches have dropped considerably… My cluster headaches are now very manageable and the infrequent hits that come while sleeping are easily dispatched with demand valve method of oxygen therapy in short order. On top of that… I feel better, sleep better and I have more energy. For the cluster headache sufferers considering the ONS implant surgery, here is the benefit of my experience with it. ONS isn't for everyone who thinks they've reached the end of their rope. You must exhaust all other treatments and medications first… and I mean ALL… If that means trying oxygen therapy with hyperventilation… try it, but learn how to use it properly and make sure you have enough oxygen on hand in the larger home size cylinders, a good mask like the o2ptimask and a regulator capable of delivering a minimum of 25 liters/minute and preferably higher. The small E-size oxygen cylinders may be great for work, but they're only good for 3 cluster headache aborts… If you haven't tried the anti-inflammatory regimen, try it… but give it some time. These two methods work best for me… If you haven't tried busting… something I cannot do… try it too… Talk with the experts at ClusterBusters. If you've tried all these methods of controlling your cluster headaches and you've still not achieved acceptable relief from your cluster headaches, then, and only then would I consider the ONS implant surgery. I would start with an open mind, as best you can with cluster headaches, by learning everything possible about ONS, its effectiveness, limitations, failure rates, and the time it takes to make ONS work properly. Don't expect magic relief. It's going to take a lot of time, constant attention and you need to be prepared to put up with a lot of strange new things to do. Cost is also a consideration that cannot be overlooked. Be sure you know what is covered and what isn't if medical insurance is involved. There is also something else not many neurologists or neurosurgeons will tell you or be able to adequately describe to you… You're going to have an alien thing inside your belly and the back of your head… and you'll know it's there… The actual stimulation is not painful, but it can and will be distracting. It's something you'll need to adjust to in order to gain any confidence in controlling your cluster headaches. In the end, it's still a tough decision even after all the considerations… To be fair in my assessment of the ONS capability… It did work… I kept good logs on my cluster headaches and how well the ONS worked to control them… The highest effectiveness during the day was 90% and that was acceptable. ONS didn't work while sleeping. By the time I was awake enough to reach for the ONS remote controller to signal a stimulation pattern, the pain was usually too high for the ONS to have any meaningful abortive effect so I ended up at the oxygen cylinder with zomig at the ready. I remain confident that the ONS capability will continue to improve with time. Unlike today’s cardiac implants that can sense electrical irregularities in the heart and automatically trigger an appropriate pace making function, ONS still lacks the capability to sense the nerve impulses signaling a cluster headache is about to hit and trigger an appropriate stimulation pattern to abort the attack. Adding this capability will make a big difference in the overall effectiveness of this technology to control cluster headache. I fully expect to see the application of nanotechnology and ONS like implants the size of a grain of rice in my lifetime. However, technology like this will be developed for other neurological disorders like migraines not cluster headache… We're still an orphan disorder, and as such, dedicated funding for cluster headache research will remain limited. Michael (Pete, Tks, for your help) |
Title: Re: Occipital Nerve Stimulators (ONS) Update Feb. 2012 Post by jon019 on Feb 9th, 2012 at 8:40pm wildhaus wrote on Feb 9th, 2012 at 12:56pm:
WOW...what an absolutely awesome, informative, heartfelt and delightful post.... Once again I am reminded why I am here...with THIS family...it aint available anywhere else. Michael (Laurie and Gary too)...all I got...prayers, vibes, thoughts and best wishes...THANK YOU! (.....and that Pete guy, with his big heart, seems to know a thing or two too ;)......) Best, Jon |
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