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        Daily Chat >> General Posts >> Occipital Nerve Stimulator
        
(Message started by: Lizzie2 on Dec 23^rd, 2007, 1:30pm)

Title: Occipital Nerve Stimulator
Post by Lizzie2 on Dec 23^rd, 2007, 1:30pm

New news from me! On Wednesday, I went to the neurosurgeon to discuss the ONSI for both my chronic clusters and my chronic migraine (New Daily Persistent Headache). I had gone for a consult back in early 2005, as some of you might remember, and at the time I wasn't a good candidate for the surgery for a few different reasons. But now, things have really changed. A couple months ago, I was at an appt with my neuro and there were visiting neuros from England - one of which is like the world's 2nd top researcher on the ONSI (next to Goadsby), and they all thought it was the next best option for me, given that everything else has failed. My family and I didn't go into this lightly at all. However, we really liked the neurosurgeon last time, so we decided a talk with him couldn't hurt.

This time, everything is different! For one, he has now put in 35 stimulators for headache, and he put one in where he put both electrodes on the back of the neck for the occipital nerve and then also put one electrode above the eye. This is what would be the best option for me, since my headaches are so frontal. It would involve an incision (the size of which would only require 2 stitches!) at my hairline for the one above my eye. At least it won't be noticeable. They now anchor each electrode at 2 different places and since they started doing that, the neurosurgeon has not had the leads migrate for anybody. The batteries are now rechargeable, so it doesn't mean surgery every year to replace the battery. (Don't ask me how they recharge - I laughed at the thought of plugging myself into the wall for a few hours once a year! I still have to ask him how they recharge the batteries - cuz I forgot to ask!) The batteries are also now smaller, although the smallest only allows for 2 leads and I would have 3, so I'd have to go with the next size up - but it's still fairly small.

If I get the surgery, I'd have to stop my methotrexate (which supresses my immune system) for a week before and 3-4 weeks after the surgery until the incisions heal up.

The way things work, on January 4, I am seeing a pain specialist for a consult as he is the one who would ultimately do the trial stimulator. It used to be that the trial was used to rule out people for whom the stimulator does not work. They know now that the stimulator can take 3-6 months to work, and according to the visiting neurologist, even up to 1 year in some cases. So now the trial is used to determine those patients for which stimulation makes worse, so that they don't get the surgery. I think the trial period is 1-2 weeks, but I will find out for sure at the consult. I have to find out if I will be able to work with the trial stimulator in place. That will also determine when we decide to do the stim trial.

If I tolerate the stim trial well and would like to go forward, I would then schedule another appt with the neurosurgeon and then plan ahead for surgery!

So fingers crossed that this could work for me, because I really need something to help. Those who know me know that it has been a long, hard road in the search for something to help, and while I've been not as aggressive (as I used to be) in the last 2 years in searching for an answer, I'm turning to this with hope that something will help me! Just wanted to share!!

PF wishes,
Carrie :)

Title: Re: Occipital Nerve Stimulator
Post by LeLimey on Dec 23^rd, 2007, 1:35pm

Carrie did you know Mike Pollock has now had his removed as it was doing him no good at all?

Don't want to rain on your parade honeybun but I wouldn't NOT tell you either

Good luck
Helen

Title: Re: Occipital Nerve Stimulator
Post by Lizzie2 on Dec 23^rd, 2007, 1:36pm

on 12/23/07 at 13:35:18, LeLimey wrote:

Carrie did you know Mike Pollock has now had his removed as it was doing him no good at all?

Don't want to rain on your parade honeybun but I wouldn't NOT tell you either

Good luck
Helen

I know - and according to the visiting neuro who knows Mike quite well - Mike was unfortunately a failed case with the stim. Even the relief he initially got would not make his stim story a success.

But I have spoken with people for whom it works and for those that it has helped, it has been a huge blessing!

Title: Re: Occipital Nerve Stimulator
Post by LeLimey on Dec 23^rd, 2007, 1:39pm

From what I know of it - there is a recharger in a pillow or something like that! I'm not a 100% sure but it's sort of like putting the phone back in the cradle LOL

Title: Re: Occipital Nerve Stimulator
Post by Lizzie2 on Dec 23^rd, 2007, 1:43pm

on 12/23/07 at 13:39:14, LeLimey wrote:

From what I know of it - there is a recharger in a pillow or something like that! I'm not a 100% sure but it's sort of like putting the phone back in the cradle LOL

Really?? Hehe... I might become a bionic woman someday!

I do appreciate the warning above - I didn't want to sound like I wasn't taking it into account. I am. The last time around, speaking with Mike was very helpful for me, and then when I wasn't even a candidate, it was disappointing but understandable. Basically, a lot of thought and discussion has gone on behind this decision, and I am definitely proceeding with caution but also some optimism! :)

:-*

Title: Re: Occipital Nerve Stimulator
Post by Gator on Dec 23^rd, 2007, 2:14pm

Carrie, I know you've done your homework and tried tons of things to bring your pain under control, so I wish you very much success if this is the way you decide to go.

Mike

Title: Re: Occipital Nerve Stimulator
Post by Charlotte on Dec 23^rd, 2007, 3:48pm

good luck Carrie. I hope this works for you. My fingers are crossed.

Charlotte

Title: Re: Occipital Nerve Stimulator
Post by Rosybabe on Dec 23^rd, 2007, 4:09pm

Wishing you the best of lucks dear Carrie!! I really hope this treatment works for you.

Hugs

Rosy.

Title: Re: Occipital Nerve Stimulator
Post by DennisM1045 on Dec 23^rd, 2007, 4:26pm

Hi Carrie,

It sounds like you are going into this for the right reasons and with the right amount of expectation and caution. Good luck. I hope it brings you the relief you need.

-Dennis-

Title: Re: Occipital Nerve Stimulator
Post by Lizzie2 on Dec 23^rd, 2007, 4:30pm

Mike - Thanks. I definitely have spent a lot of time researching and have been the guinea pig for a lot of the new treatments that have come out in the past few years at least at our headache center. When I went for consult 3 years ago, I would have been one of the earlier stimulator patients at Jefferson (for headache), and the neurosurgeon told us at the consult that he hated the stimulator back then - and a lot of it had to do with not having fully developed the technique he uses now. He's put in over 500 stimulators for pain (mostly in the back), and now 35 for headache, and he said the last 15 have had no issues at all. (By issues, I mean with leads migrating, batteries dying or malfunctioning, or other surgery-related problems.) There are only a few treatments I have not tried, and those lie in the alternatives, to be honest. I don't want to start a whole discussion on that here, but I really will never be able to try the shrooms due to past history of psychosis (from medication) and severe depression. The seeds, I've never been able to determine if they would be safe with all the other medications I'm on for other conditions (the most serious of which being methotrexate), and I'm just a little leery of risking that. The benefit of the stimulator is that if it works, I could come off of the meds I'm on for headache and then subsequently even be able to come off of some of my reflux meds, since my GI stuff is so much worse due to headache meds. I recently had an abnormal EKG that is possibly due to verapamil (480mg/day), so even that would be good for me to get off of. I'm not putting every last drop of hope on the stimulator, but I do feel that a positive attitude going in can be a benefit and allows the treatments to have their best shot. I'm just hoping maybe the stimulator can improve the quality of my life some!

Charlotte and Rosy - Thanks so much for your well-wishes! They mean a lot to me!!

Hugz and PF wishes to all,
Carrie :)

Title: Re: Occipital Nerve Stimulator
Post by Lizzie2 on Dec 23^rd, 2007, 4:33pm

Dennis - Thanks so much! As I said to Mike, I have spent a lot of time being a guinea pig for things and also researching available treatments. I have taken significant risks in the past, and I have a rather long list of negative things that have occurred thanks to some of the things I tried - but I don't regret them....I really was trying to get some PF time. I have had my chronic migraine for 7 years straight this January, and the clusters have been chronic since 2003. Will the stimulator be a cure? No... But I must go in looking at it positively in order for it to have the best chance at working. I realize that it might not work for me, but I'm hoping like crazy that it will bring me some benefit!! :) If it doesn't work, then someday I'll have it removed, but at least I'll have tried. If it does work, then it will be such a huge blessing for me. :)

Hugz,
Carrie :)

Title: Re: Occipital Nerve Stimulator
Post by cash5542 on Dec 23^rd, 2007, 5:40pm

Carrie,

I so hope this works for you! Please keep in touch and let us know how things procede. What is the recoooperation time like for the surgery?

I hope you and your family have a wonderful holiday!

Charlotte

Title: Re: Occipital Nerve Stimulator
Post by E-Double on Dec 23^rd, 2007, 8:30pm

Wishing you the very best.
You are due for some relief!

love ya

Title: Re: Occipital Nerve Stimulator
Post by Charlie on Dec 23^rd, 2007, 9:52pm

All my hopes that you'll get a break from this.

I know you'll be one of the success stories.

Charlie

Title: Re: Occipital Nerve Stimulator
Post by Lizzie2 on Dec 23^rd, 2007, 11:07pm

Charlotte - Thank you for your kind words!! When we were talking to him about the fact that I'm on methotrexate, he said that he usually has patients stay off it for 3-4 weeks, or as long as they can until their arthritis gets bad or the incisions heal up. I found out from Rachel (NNP at the headache center) that after the surgery, you have to wear a soft neck collar to keep from moving your neck around too much. I know the trial stimulator is 1-2 weeks in length, and what would be nice is that if I had to go out on short-term disability for work, do the trial stim for 2 weeks and then at the end of that time, have the permanent one placed and then recoop for the next 4, leaving me out for 6 weeks total. However, I think what is more likely to happen is that I will get the trial stim for 2 weeks (hopefully I will be able to work with it, but if not I may have to use up 2 weeks of my vacation and then take less of a vacation with my family this summer), and then I will plan to have the implanted stim put in a few weeks to months later. He said the longer we wait for the surgery, the newer the technology will be that comes out. He thought that if I waited a few months, the smallest battery maker might come out with one that holds 3 leads, and that would be ideal. He said every day they are coming out with newer technology for this stuff, and to me it feels like buying a computer or other piece of technology. As soon as you get it, there's a brand new and better model out the next day! That's a little scary to me, but at least what is out now is loads better than what was out before. He said patients before were under the clinical trial to receive the implant and just a few weeks after the trial, the rechargeable batteries came out (means battery has to be replaced every 8-9 years versus every year with the nonrechargeable), but because the patients were paid for by a clinical trial, the company didn't want to throw out the data they had already collected and start from scratch, so all the patients had to deal with the nonrechargeable batteries! Sucks that right after that the new batteries came out! But at some point, you just have to take the plunge and do it!

In terms of surgeries, the literature states that probably THE most effective surgery is deep brain stimulation. BUT - that is not nearly as safe as they would like it to be (for other parts of the brain, it's a different story), and the occipital nerve stimulator, which is outside the skull, may be slightly less effective than DBS, but has a LOT fewer risks. The only real risk with the ONSI is infection plus whatever intraoperative risks one faces when going under anesthesia, but in terms of the surgery, the risks are far fewer. So even though it's a surgical procedure, it seems like a low-risk one for me to take. They won't be permanently cutting through or damaging any nerves, so it shouldn't have any permanent negative effects like some of the other surgeries out there for headache. I'll definitely keep you and Lisa posted! Plus everyone else here of course!! I'm really hoping I can be one of the successes for this thing, and hence make it less scary!

E-dub - Thank you! I agree that I am due some relief. 7 years of nonstop, never pain free time is a lot to take.....some days it makes you feel like you are going insane! But mostly it's just depressing. Then the clusters on top of it which are much more painful than my constant migraine - and while at least they come and go away, the unpredictability of being hit with extreme pain is frustrating for all of us - the worst is getting hit at work when I am unable to even walk away from the baby's room. I keep thinking there has got to be a better way!

Charlie - Thank you! I hope that I am one of the success stories as well! I really would love for this to work and for people to know that it is an option when all else fails!

Hugz and PF wishes to all!
Carrie :) (Who has to work 7a-7p the next 2 days and is kinda depressed about that, on top of everything else! haha)

Title: Re: Occipital Nerve Stimulator
Post by Callico on Dec 23^rd, 2007, 11:30pm

We will be praying that it works for you even beyond what you expect. have a great Christmas.

Jerry

Title: Re: Occipital Nerve Stimulator
Post by Miz_D on Dec 24^th, 2007, 12:18am

Hi Lizzie,

I am so excited for you and truly hope this is successful at providing you some much deserved PF time!

Danielle

Title: Re: Occipital Nerve Stimulatorcharging much like
Post by Mike_P on Jan 1^st, 2008, 6:34am

Carrie, I wouldn't say it was a complete failure. My attacks rarely reach anything above a Kip 7 these days. I actually had the stim removed because the battery pack went flat every 10 months or so and the effectiveness of the stim seemed to plateau after a couple of years. Of the eight ONSI procedures done over here there has been mixed results. The new stims recharge as Helen said by laying on a pillow overnight, the batteries are much smaller than the one I had, and work in a similar way to the rechargeable toothbrushes. My battery pack is the size of a cigarette packet. Anyone want it? Hardly used! Made of Titaneum, bodywork good, cost me $30,000 new, free of charge!

Mike

Title: Re: Occipital Nerve Stimulator
Post by LeLimey on Jan 1^st, 2008, 7:25am

Can we have it for a paperweight Mike?! [smiley=laugh.gif]

Title: Re: Occipital Nerve Stimulator
Post by Mike_P on Jan 1^st, 2008, 7:30am

Yes of course Helen, I'll drop it in to you. ;)

Title: Re: Occipital Nerve Stimulator
Post by Tiannia on Jan 2^nd, 2008, 2:59pm

Sweetie, Do what you are comfortable with. You know what is a right choice for you and everyone here understands that. We just want you to go into this with your eyes open and great hope in your heart.

That is part of the cruse and blessing of CH, the a$$ hits each of us different and what works for one does not seem to work that way for another. I know hat there was a time that I would have been willing to do just about anything to get even a week of PF time. And let a pain doc strip my Occipital Nerve. Dumbest damn move I ever made, and it did not work and made it honestly worse because it ended up giving me Occipital Neuralgia on top of the CH.

I hope with all my heart that it works for you and gives you some relief.

Tia