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Garys_Girl

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quick update - ONS
Jul 30^th, 2009 at 10:45pm

Some of you have very kindly asked to be kept up on Gary's journey with clusters.

The lastest is that he had the test ONS with supraorbital implants done this past Wednesday on an outpatient basis. His Doc believes the risk of infection (with the inability to close things up - leads sticking out of his head) is too great, so the test equipment will only be in for one week. The idea here is not to get to the goal of a minimum 50% reduction in pain - just to see if there's any indication they're going to help.

Gary is using ANS equipment, and though this is the first clusterhead the rep has worked with, he's great.

Gary was twilighted. He did have an attack during the procedure, but told the Doc he wanted to ride it out - so they never put him fully under.

The ANS rep programmed six programs into the unit. Gary's been experimenting with them, but had the thing on basically continuously. Did take an hour downtime. Not seeing any reduction in anything yet, but it is soon to expect anything. Of course the Doc's migraine patients get relief by now....

I'll keep you posted.

Laurie

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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: quick update - ONS Reply #1 - Jul 31^st, 2009 at 12:29pm Laurie, Gary and you both continue to be in my prayers. I really hope this works for him. He needs a break so badly. Hugs, Jeannie
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Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: quick update - ONS Reply #2 - Jul 31^st, 2009 at 3:36pm I've got my fingers crossed. It's been a long, hard struggle....you all deserve some relief. Keep us posted and we'll keep you both in our thoughts and prayers. Jackie
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QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: quick update - ONS Reply #3 - Jul 31^st, 2009 at 4:10pm In our thoughts here too....keep us posted and best of luck! Christy
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Garys_Girl

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Re: quick update - ONS
Reply #4 - Aug 2^nd, 2009 at 5:20pm

It was very kind of Michael to speak to Gary about the ONS. They're using different units, but his input was nonetheless very appreciated. Gary's now got a program titled "Michael 1" LOL

So far Gary is seeing no benefit. But given that it takes 3 to 6 months to really see the benefit, I'm not so sure what good a one week trial is.

I'm not sure what we'll decide to do.

Thank you for your good thoughts and support for Gary.

Laurie

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« Last Edit: Aug 2^nd, 2009 at 7:47pm by Garys_Girl »

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Garys_Girl CH.com Hall of Famer Offline Making biscuits Posts: 821 Planet Cat, NJ Gender:	Re: quick update - ONS Reply #5 - Aug 2^nd, 2009 at 7:46pm Gary talked to Doc today and asked if he can leave the test equipment in for an extra week. He said he'll take a look Wednesday, but hopefully it'll be a go. Hopefully that'll be enough time to at least see if there's going to be any change. Laurie
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Garys_Girl CH.com Hall of Famer Offline Making biscuits Posts: 821 Planet Cat, NJ Gender:	Re: quick update - ONS Reply #6 - Aug 11^th, 2009 at 11:47am The stims are staying in until Aug 19. Still not seeing any benefit in terms of decrease in number of attacks, duration of attacks, or intensity of attacks. Of course, true to his ongoing atypical nature, he's found a setting that at a high current strength actually triggers an attack. Laurie
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: quick update - ONS Reply #7 - Aug 12^th, 2009 at 11:49am Sorry Laurie...... I wish the news was better. Jeannie
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: quick update - ONS Reply #8 - Aug 12^th, 2009 at 2:14pm Laurie - I haven't kept completely informed on Gary's situation. Has deep brain stimulation been discussed? Apparently that guy from Idaho, Ryan, has had his life given back to him via DBS. Might be something to inquire about.
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Garys_Girl CH.com Hall of Famer Offline Making biscuits Posts: 821 Planet Cat, NJ Gender:	Re: quick update - ONS Reply #9 - Aug 14^th, 2009 at 8:28pm It's something he may have to consider at some point. But he'd probably go for the long term implants over that first.
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thebbz Ex Member	Re: quick update - ONS Reply #10 - Sep 6^th, 2009 at 11:23am Keep on truckin Gary. all the best the bb
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Lizzie2

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Re: quick update - ONS
Reply #11 - Sep 6^th, 2009 at 11:17pm

Hi Laurie,

I have been a really crappy friend. Sad

I'm sorry I never got back to you. I've been thinking about Gary and wondering how things turned out. I'm so sorry that I wasn't in touch. It sounds as though the trial didn't help. There are ways to program my stimulator which triggers an attack as well. When we hit upon those programs, the company rep quickly aborted them and tried new things. It took a lot of figuring out before we settled on programs that seem to help. Of course, I also have the supraorbital lead which I believe has been KEY. If I'd just had the occipital leads, I'm not sure I would have felt enough of a benefit to carry on with it, but since I didn't ever have a trial of just that, I cannot say for sure.

Anyway - I hope you're not too angry with me. I really am sorry. You are both in my prayers....

Hugs,
Carrie

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~~"Don't know much about your life. Don't know much about your world, but Don't wanna be alone tonight on this planet they call Earth."~~

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Garys_Girl

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Re: quick update - ONS
Reply #12 - Sep 17^th, 2009 at 6:24pm

Hi Carrie! I figured you were busy with life. It does happen.

I actually started getting worried about you though - we haven't heard much since the re-implants, and I was really hoping all was going well.

As to Gary... he had the trial stims in for 3 weeks. I wasn't sure how to update here, because he wanted to go ahead with the LT implants despite not seeing any benefit (at all). He did, in fact, get the insurance approval for the LT implants. But as it turns out, our insurance covers VERY LITTLE for implantable devices (including stuff like stents and pacemakers) - so even with a discount from ANS we are tens of thousands short on being able to afford it.

He's still working on getting 02 to help, but so far all he's doing is making his throat and lungs burn (from the cold) and usually making the attack worse.

I figure maybe someone else working with him on the breathing may help, so I've found a Tai Chi instructor that's in on my plan.... Gary'll do Tai Chi with me, but he won't do yoga with me. We'll see what happens over the next couple of weeks.

But thanks for the good thoughts for Gary.

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