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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 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.

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."'
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Not saying they jumped the gun on trying this treatment for him, but he is in good hands IMHO.?  :P  THAT or they are using him in the clinical trial?  guinea pig? :o

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

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

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

Hey, Stephanie!  GOOD catch!  I guess you are not the ditzy blonde that the shaved, scarred headed dude said you were!   ;) ;D [smiley=biggrin.gif] [smiley=gossip.gif] [smiley=oops.gif] [smiley=smartass2.gif]

(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

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

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

I think that's the picture under your name at the left, George.

The Blue-Handled Ambassador.

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

Great advocacy guys!  

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. ;)

thanks for being there. hope we can help ryan.

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

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

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.

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 START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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 START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. 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.

i signed the petition on facebook. i got a pm from them today. they sent me a link for donations via paypal.

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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.

He and his family need to join this family.

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!!   ;)

Oh that's just fabulous Steph!

Incredible.

Good catch.

Steve G

That is great news Steph!

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

You did good girl............. :-*

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.

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.

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

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. :(

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

I sure hope it works for him. :(

Me too!!!!  

Thanks Chuck for talking to Karia!!  And Steph too!!!!   8-)  
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 START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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

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..!

"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.

and I'm really also excited about you stepping up at OUCH.

Chuck, you're a doll.    Oh, and you too, Stephie!


;)    

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.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I just wanted to update you all...  :'(

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

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

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

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

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.
:-?

B~

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

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

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

Update on Ryan Stockdale in the local media:

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Best,

George

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