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

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

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

ClusterChuck wrote on Dec 12^th, 2008 at 1:41am:



Quote:
You dont have to, you see I am still going......

Quote:
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

wildhaus wrote on Dec 17^th, 2008 at 2:20pm:

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

The Mad Viking wrote on Dec 17^th, 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

Lizzie2 wrote on Dec 18^th, 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

wildhaus wrote on Dec 20^th, 2008 at 3:15pm:

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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,
a reversible procedure, but as any other surgical procedure, ! 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

We cannot change the cards we are dealt, just how we play the hand

After seeing those pic's, I know why I keep putting off my C6-7 fusion...

Thanks for posting them Michael,

Roland.

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