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News Story out of Boise (Read 4529 times)

Mrs Deej

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News Story out of Boise
Jul 7^th, 2009 at 11:13am

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I'm not sure if this story has been posted already or if Ryan has visited ch.com before, but I just got off the phone with the newsroom at KIVI-TV, I left a message for the anchor who ran the story. I'm sure with the MANY years experience here we will be able to help him through his journey, and get him in touch with information that could get him back to his "normal" life!! If I'm way behind here, someone please let me know... LOL (It's hard to keep up)

I think it's a little extreme to be getting DBS after only being diagnosed for 7 months, I could be wrong though!! It will be interesting to see what he has tried as a preventative, or lack thereof, and if he has tried O2, or even heard of the therapy.

I will keep everyone posted!!!

"I don't know the key to success, but the key to failure is trying to please everybody" - Bill Cosby

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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 #1 - Jul 7^th, 2009 at 11:23am I am glad that you saw this article and are in the process of contacting the anchor that ran the story. I hope they will contact or allow you to contact this family and see if they might come here and see if we can at least help him with some of his pain. Keep us posted Steph.
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Val_

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Re: News Story out of Boise
Reply #2 - Jul 7^th, 2009 at 12:42pm

Just a side note, UCSF - the place he was diagnosed and it appears where he will be treated - is where Goadsby is director of the UCSF Headache Center at the moment... Starr, the man who wrote the letter to the insurance Co.is also a UCSF and 'is an investigator for the largest formal clinical trial of deep brain stimulation (DBS) currently taking place in North America: "A Randomized Trial of Best Medical Therapy versus Deep Brain Stimulation of the Globus Pallidus or Subthalamic Nucleus for Parkinson's Disease."'
Quote:

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Not saying they jumped the gun on trying this treatment for him, but he is in good hands IMHO.? Tongue

THAT or they are using him in the clinical trial? guinea pig? Shocked

Thanks for the article. Hopefully he does contact you and can get help with proper O2 use, or talk to others who might be able to help - anything other than DBS, as it is only successful with a bit over half of the cases as of yet. I would think in such a short time this is a big procedure to try.
I read a journal article on DBS that laid out the participants trying all of the different types of preventatives and abortives for a substantial amount of time before being considered for the clinical trial. Not everyone had good results, the batteries died for many, others didn't have enough results that they thought it was worth it, etc.

Val

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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: News Story out of Boise Reply #3 - Jul 7^th, 2009 at 1:30pm Good catch Steph... now maybe the anchor will call you back and you can tell him/her what's what... That guy needs to come here and meet the family... Hugs BD
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: News Story out of Boise Reply #4 - Jul 7^th, 2009 at 1:39pm Don't we have a blue-handled ambassador in Boise?
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ClusterChuck CH.com Alumnus Offline The BEAST rises again, and again, and again, and . Posts: 5394 Greenville, North Carolina Gender:	Re: News Story out of Boise Reply #5 - Jul 7^th, 2009 at 1:54pm Hey, Stephanie! GOOD catch! I guess you are not the ditzy blonde that the shaved, scarred headed dude said you were! (OOOPPPSSS!! I think the big guy is gonna kick my ass !!) Thanks for passing this on! Hopefully we can get a message through to him and his family ... *OXYGEN !!!* Chuck
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Shawn

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Re: News Story out of Boise
Reply #6 - Jul 7^th, 2009 at 2:21pm

I wouldn't have the surgery even it it was free. My neuro says it's the last thing on the list that I haven't tried (well, that and gamma knife Trigeminal Nerve Rhizotomy which I also steadfastly refuse).

In this case, 7 months is hardly long enough to try all the various pharmaceuticals that might work. Surgery seems premature.

Shawn

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George

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Re: News Story out of Boise
Reply #7 - Jul 7^th, 2009 at 4:17pm

Brew wrote on Jul 7^th, 2009 at 1:39pm:

Don't we have a blue-handled ambassador in Boise?

We do indeed.

Steph and I have been in contact. Figured I'd wait to see whether or not she hears from Ryan or the news anchor at KIVI, and see what develops from there. If need be, I'll be happy to do whatever I can from this end.

Best,

George

"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: News Story out of Boise Reply #8 - Jul 7^th, 2009 at 4:26pm I think that's the picture under your name at the left, George. The Blue-Handled Ambassador.
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Batch

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Re: News Story out of Boise
Reply #9 - Jul 7^th, 2009 at 4:32pm

Steph,

Good on you!!!

My son Ryan and his wife Laura live in Boise and sent me an email on a similar article by a reporter at KTVB-TV at 02:30 this morning. By 05:30, I'd received another email from a long time friend on the same KTVB-TV article.

Needless to say by 06:00 I had an email off to my son and his wife to contact Ryan Stockdale and another email to the KTVB-TV reporter with the same message to come and visit the CH.com and OUCH websites. I also called the KTVB-TV news room to leave the same message with the attendant and on the reporter's voice mail.

I think the folks in Boise have the message... All we can do is hope they pass the messages to the Stockdale family.

Take care,

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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Karla CH.com Alumnus Offline One of Many and Never Alone - Join OUCH Posts: 3837 x1\|Madison WI USA Gender:	Re: News Story out of Boise Reply #10 - Jul 7^th, 2009 at 11:56pm Great advocacy guys!
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Re: News Story out of Boise
Reply #11 - Jul 8^th, 2009 at 12:42am

thank you steph. i hope that we can get the chance to help ryan. i posted a link on facebook to the petition. if my step father in law wasn't my landlord years ago i would have been homeless. i don't know how i survived that cycle. the last cycle could have been just as bad but i had information and a knowledgeable caring support group. Wink

thanks for being there. hope we can help ryan.

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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 #12 - Jul 8^th, 2009 at 1:46am Tried everything? In 7 months? It took me 20 years to try everything. I don't care who the expert is that says the last resort here is DBS, but he/she is .......well, is......wrong. What are they going to tell the guy if the DBS doesn't work?? Send them an invitation to the OUCH convention. Bob
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Val_

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Re: News Story out of Boise
Reply #13 - Jul 8^th, 2009 at 2:31am

Karia, Ryan's wife, stated in a 20min interview that his CH started episodic 5 years ago. 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

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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: News Story out of Boise Reply #14 - Jul 8^th, 2009 at 9:00am Damn. If it wasn't so public, he could try the alternatives also. It is possible he has not tried that route either. Anyway, thank you Val for the additional information. It helps answer some questions I had.
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QnHeartMM

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Re: News Story out of Boise
Reply #15 - Jul 8^th, 2009 at 5:22pm

So I saw the Facebook site dedicated to Ryan's petition and sent a message to the administrator:
Quote:

Caroline, many of us who collaborate on a cluster headache support website are following these events. Can you ask Ryan to register at Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

and share with the group what he has tried over the years for treatments etc. There are many people successful at reducing the impact of CH and we would like to help him through our message board and share information. We have a threat under General Posts called "NEws story out of Boise" on this topic.

She replied:
Quote:

I've actually been looking at clusterheadaches.com quite a bit. I did read through the "News Story out of Boise" thread and I want to make sure that people understand that Ryan is the most severe case these cluster headache experts have ever seen. This surgery really is his last option and that’s why we’re working so hard to help him before it’s too late. Unfortunately, Ryan is unable to use a computer because of the severity of his condition, but I’m sure Ryan’s wife, Karia, has spent time on your site during her extensive research and appreciates the support that your community offers to Ryan and their family. If you wouldn't mind, please spread the word about Ryan's petition at Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

. Thank you for your concern and your support.

To which I replied:
Quote:

Yes, we're passin the word around but please understand that most doctors, including headache specialists, do not fully understand CH and do not prescribe O2 treatment correctly. Can your or Karia at least read the o2 information we have posted (left side of page, highlighted in yellow)?

There are people willing to talk to Ryan or his wife to help. We have helped SO MANY people with sufferer to sufferer interaction. I myself am not a CH sufferer but my husband is and I have been helping him deal with it for 20 years.

Thank you SO MUCH for checking out the site and please can you check out the O2 information and perhaps let one of our members call Karia? I promise you we're not a bunch of freaks!

Christy

I guess this is all we can do at this point (other than sign their petition which I reluctantly did --reluctant because of the information it required me to give. Hopefully they will check out more on the Oxygen link to at least make sure he was using it at the most optimum way.

Treat people with kind words.

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-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: News Story out of Boise Reply #16 - Jul 8^th, 2009 at 5:33pm i signed the petition on facebook. i got a pm from them today. they sent me a link for donations via paypal. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: News Story out of Boise Reply #17 - Jul 8^th, 2009 at 5:41pm Thanks Steph. I just emailed the link to my boss. Although she is extremely supportive and understands the severity of Ch, I often wonder if the Corporate Gods fully understand the potential impact CH might have on an employee. This article really drives it home.
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lashultz CH.com Veteran Offline Posts: 237 x0\|Milton\|USA\|\|0\|0\|WI,Wisconsin Gender:	Re: News Story out of Boise Reply #18 - Jul 8^th, 2009 at 6:49pm He and his family need to join this family.
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Mrs Deej

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Re: News Story out of Boise
Reply #19 - Jul 8^th, 2009 at 7:43pm

I have been in contact with Karia, we are in the process of finding a mutual time that would be best to chat on the phone.

I'm really excited to get her the PROPER O2 info that will hopefully help him. I am also going to see if she will become part of the "family" here so we can all collaborate together to get them the info they will need.

Wish me luck!! Wink

"I don't know the key to success, but the key to failure is trying to please everybody" - Bill Cosby

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QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: News Story out of Boise Reply #20 - Jul 8^th, 2009 at 8:13pm Oh that's just fabulous Steph!
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stevegeebe CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1687 Mandeville, LA Gender:	Re: News Story out of Boise Reply #21 - Jul 8^th, 2009 at 8:27pm Incredible. Good catch. Steve G
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midwestbeth CH.com Sponsor Offline Posts: 1123 Edwardsville, IL Gender:	Re: News Story out of Boise Reply #22 - Jul 8^th, 2009 at 9:44pm That is great news Steph!
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Mrs Deej

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Re: News Story out of Boise
Reply #23 - Jul 8^th, 2009 at 10:07pm

Well, GREAT news, I just got off the phone with Karia just a bit ago. We talked about the things they have tried, the things that haven't worked and the GREAT things about proper O2 use that hopefully will!! She will be a proud owner of an O2ptimask tomorrow..(thank you ~~Chuck~~ angel)...and has been informed of the higher lmp. We talked about the DBS, obviously they are worried about the evasiveness but they really do feel that it is the last option on the table, but with us here to guide them down the right path, maybe that won't be necessary.

I begged her to come back on the message board so we could begin helping them with possible new therapies. I'm thinking at this point they might be up for anything.

I will be keeping in close touch with her. I did my best, hopefully it was enough!!

Karia...thanks for the opportunity to help!

Steph

« Last Edit: Jul 8^th, 2009 at 10:09pm by Mrs Deej »

"I don't know the key to success, but the key to failure is trying to please everybody" - Bill Cosby

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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 #24 - Jul 8^th, 2009 at 10:21pm You did good girl.............
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