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News Story out of Boise (Read 4545 times)

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Re: News Story out of Boise
Reply #25 - Jul 8^th, 2009 at 11:24pm

Val_ wrote on Jul 8^th, 2009 at 2:31am:

. It just started getting really bad 7 months ago apparently.

Karia stated that they've done it all in their trials - O2, Occipital nerve block, IV DHE, stellate ganglion blocks, & "all drug trials" - 20 to 30 of them and that Ryan "peaks all day he is at an 8 all day peaking to a 10 nearly 20 times a day." She said that the UCSF experts told her that Ryan is as bad as they've seen a sufferer...

I know the article did not give all the info - so thought I'd shed some light on some of the rest. I do agree though - maybe talking to someone about how he's using O2 might help, or trying something else before DBS - Occipital Nerve Stimulation even before DBS? Docs like to jump to the latest and greatest procedure too quickly IMO.

Val

Sorry folks but this guy needs to get off the drugs wich are potentially causing his circumstances and get a new doctor.

He needs some work on his phsyce and attitude, he needs to try the o2, and his wife needs some even better education.

If anyone can do it its you guys.

Now I suffered many years straight with K-10 CH and 24 hrs a day, but never 20 full on hits in 24 hours (phew) max 12 for me.

Trust me its the continual change up of drugs and experiments. Been there. That doc is literally making a killing.

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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: News Story out of Boise Reply #26 - Jul 9^th, 2009 at 2:08am Jimi wrote on Jul 8^th, 2009 at 10:21pm: You did good girl............. Agreed. Let me know if there's anything I can do at my end. Middleton's just a hop, skip and a jump.
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ClusterChuck

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Re: News Story out of Boise
Reply #27 - Jul 9^th, 2009 at 5:05pm

OK, I just got off the phone with Karia, Ryan's wife.

From the sounds of it, he needs the DBS. He is under the care of the uber specialist, Dr Goadsby. He can't get any more competent care than that!

He HAS tried virtually everything. When he got under Dr Goadsby's care, they went back through, and retried all the meds and treatments that Dr Goadsby knows about and NONE of them have worked. Dr Goadsby is the one who has decided that the DBS is the way to go.

In my mind, that settles any questions or queasiness that I had. If Dr Goasby calls for it, then that is the way to go!

Ryan has lots of other medical issues that are making it difficult to treat him, too. So there are many issues to have to deal with.

Karia was very happy to talk with me, and I gave her all the little tricks that I know of, to take the edge off, like hot; cold; melatonin; energy drinks; etc. I told her how many people are concerned with Ryan, and wondering how they can help. She was quite touched to hear that, and thanks you all VERY much. I also told her to call me at ANY time to ask questions, cry, scream, swear at me, or whatever she needs. She said she would.

I guess now, the best we can do for them is to send any and all vibes, prayers or whatever to him, and them. His life is shit right now. He has NO family life. He can't do a thing with his kids. He is about at the end of his rope, and the rope is frayed.

It breaks my heart to talk with Karia, but she is one AWESOME supporter! She also is VERY learned about clusters! She HAS done her homework and done a LOT of research. She KNOWS what she is talking about! Ryan is very lucky to have her in his corner! I have invited her to this site, and she said she would try to check us out.

An O2PTIMASK^TM is on its way to them, being sent out today. They already have oxygen, and a regulator that goes up to 25 LPM. I explained how to hyperventilate, and can only hope it helps him.

We also discussed 'shrooms and clusterbusters. There are valid reasons they have not gone that route.

So, send them all the prayers, vibes, good ju-ju and anything else you can find!

Chuck

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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Jimi CH.com Moderator CH.com Alumnus Offline Don't feed the moderators Posts: 4925 Madisonville, KY Gender:	Re: News Story out of Boise Reply #28 - Jul 9^th, 2009 at 5:14pm Well it sounds like we have done all that we can from this end. I agree with you Chuck, if Prof. Goadsby has been on this case for a long time, he knows what he is doing and must be desperate to try this one last thing. I sure hope it works for him.
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Val_

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Re: News Story out of Boise
Reply #29 - Jul 9^th, 2009 at 5:27pm

Jimi wrote on Jul 9^th, 2009 at 5:14pm:

I sure hope it works for him. Sad

Me too!!!!

Thanks Chuck for talking to Karia!! And Steph too!!!! Cool

They will be giving the petition to Omnipure with more signatures every day until a decision is made apparently. They are asking for people to keep getting the word out to sign the petition at Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

I guess now they just need people putting pressure on Roger Reid, President of Omnipure Filter Company to approve the petition that they turned in yesterday? I don't know if that would help or hurt actually - but if it were done based on the humanity of Ryan and the pain this causes? I don't know.

Omnipure has 60 days to decide if they approve the appeal that Karia et al turned in. This is the last appeal they can request.

Val

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Lefty CH.com Alumnus Offline Posts: 759 Gender:	Re: News Story out of Boise Reply #30 - Jul 9^th, 2009 at 5:47pm Great work folks...! Once again this illustrates the importance of this small community. I really hope that there is positive outcome of this story for Ryan and his young family. Lefty..!
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Re: News Story out of Boise
Reply #31 - Jul 10^th, 2009 at 1:32am

"In my mind, that settles any questions or queasiness that I had."
qoute Chuck

Thats good enough for me.

Wishing the very Best of luck and the good docs skills to the both of them.

I can imagine what they go through but its hard to comprehend.
Every time in a moment of self thought that we think we have it bad theres allways one who is worse off then ourselves.

Good job folks.

« Last Edit: Jul 10^th, 2009 at 1:34am by MJ »

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Kevin_M CH.com Sponsor Offline withered branches grow green again. Posts: 8754 Michigan, USA Gender:	Re: News Story out of Boise Reply #32 - Jul 10^th, 2009 at 8:51am and I'm really also excited about you stepping up at OUCH. Chuck, you're a doll. Oh, and you too, Stephie!
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Re: News Story out of Boise
Reply #33 - Jul 20^th, 2009 at 8:21pm

So the last petition for Ryan's surgery was denied by his company Omnipure. Guess Omnipure would rather pay $30K/month until a man dies than $140K in a one shot deal for a man to live. What a fu(k1ng shame.

Here is an article stating their decision. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

I just wanted to update you all... Cry

Poor guy. I really feel for him and his family right now and am hoping Something works out - their kids need the filtration system that their home was set up with and selling it is the only way Karia was going to come up with the $140K for the surgery. Ouch. Unless we ALL give a few and/ or pass this along? That's how the 4,000 signatures came to be!!
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Val

ETA article I forgot

« Last Edit: Jul 20^th, 2009 at 8:29pm by Val_ »

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QnHeartMM

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Re: News Story out of Boise
Reply #34 - Jul 24^th, 2009 at 10:46pm

Hey everybody - check out this email I just got:

Dear friends,

Thank you all for your support for Ryan and his family. As you may already know, Omnipure denied coverage for Ryan's surgery. While the decision was extremely disappointing, the community%u2019s support for the Stockdales has been overwhelming. In 24 hours, generous individuals, businesses, and community organizations have stepped forward to raise more than $90,000. Because of this, Ryan will be able to proceed with his surgery. We thank you all for your support and ask that you pray for a successful surgery and a quick recovery.

Sincerely,

Friends of Ryan

Be well Ryan....speedy recovery

Treat people with kind words.

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ClusterChuck

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Re: News Story out of Boise
Reply #35 - Jul 25^th, 2009 at 12:37am

Thanks for passing that on, Christy. Shame on me, but I got information from Karia, about that, when I spoke to her on Wednesday. In the rush to pack and get to the airport, I forgot to pas the information on.

Some unfortunate news, though. They got set up with a demand valve and 25LPM regulator (with DISS fitting for the demand valve) so that Ryan might get some relief from some of his pain. Unfortunately, the inverse happened. He got on the demand valve, and did the proper hyperventilating, and it PEAKED his pain, not diminished it! It threw him into a SEVERE period that lasted for four days. This news devestated me, and I am sure that Ryan was not happy with it either.

But, it does prove that oxygen, even though it is the best thing for most of us, does not work for every one of us.

Ryan and Karia, my prayers are heading out to you still. I will keep in touch and call regularly.

I pray SO hard that Ryan gets the releif he needs!

Chuck

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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Sandy_C

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Re: News Story out of Boise
Reply #36 - Jul 25^th, 2009 at 1:07pm

Val, thanks for that link as to the decision made in Ryan's case.

Have any of you scrolled down and read the comments posted on this link?

There is a guy named Scott who posted that CH is a form of Gulf War Syndrome and that Imitrex will stop the hits, and Melatoin to manage them so they don't come back. He feels that Ryan's surgery is not necessary because his ex-roommate can now control his CH.

I think he is concerned for Ryan, but is terribly uninformed, and is putting out incorrect informatin.

I registered and posted. Hope I didn't step out of line, but this guy really pi**ed me off with his Gulf War comment.

Sandy

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Pinkfloyd

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Re: News Story out of Boise
Reply #37 - Jul 25^th, 2009 at 3:12pm

ClusterChuck wrote on Jul 25^th, 2009 at 12:37am:

[size=16] He got on the demand valve, and did the proper hyperventilating, and it PEAKED his pain, not diminished it! It threw him into a SEVERE period that lasted for four days.

If you feel bad about this any longer I'm going to hop in a car and drive to SL and kick your ass.

The beneficial effects of 02 won't last longer than the time it takes for the vascular system to return to normal so i find it hard to believe that ANY negative effects can last any longer than that.

I'm beginning to carry around an extra large grain of salt these days.
Huh

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Sean C

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Re: News Story out of Boise
Reply #38 - Jul 25^th, 2009 at 9:56pm

LOL go easy Pink LOL.

I find it hard that an inverse effect happened also, if it did, it wasn't because of the o2.

I've had shadows after SEVERE hits that stayed between the SEVERE hits many times, usually with a severe droopy face on my cluster side that sticks around for the ride.

I hate to say it, but I think this kid has multiple things going on, I'm no doc, its just my feeling, don't get upset over it.

Sean

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Charlie CH.com Alumnus Offline Happy to be here Posts: 18971 Jamestown, NY Gender:	Re: News Story out of Boise Reply #39 - Jul 25^th, 2009 at 11:34pm What a horror story for this in any event. I wish a horror story for Ominpure as well. Classic BS from them. CH being relatively rare looks like a safe one to deny assistance in favor of the bottom line. Charlie
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Pinkfloyd CH.com Hall of Famer Offline comfortably numb Posts: 1626 x0\|\|USA\|\|\|\|IL,Illinois Gender:	Re: News Story out of Boise Reply #40 - Jul 26^th, 2009 at 2:08pm Sean C wrote on Jul 25^th, 2009 at 9:56pm: I hate to say it, but I think this kid has multiple things going on, I'm no doc, its just my feeling, don't get upset over it. Sean Thanks Sean. You're right of course and I've < cough> swallowed a chill pill. Bob
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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: News Story out of Boise Reply #41 - Jul 30^th, 2009 at 1:09am Update on Ryan Stockdale in the local media: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Best, George
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Batch

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Re: News Story out of Boise
Reply #42 - Jul 30^th, 2009 at 4:14am

George,

Thanks. My daughter lives in Boise as well and has been keeping track of the situation with Ryan. She sent me the following similar update late last night...

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Let's keep our fingers crossed the DBS is a lasting intervention.

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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