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BOL?

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Damn!, I wasn't there. They released him to his mother a little while ago with a script for Dilaudid saying that there was nothing else they could do. I'm sure they also tired of spending 25K/day and the efforts of several big-buck doctors on a HA. He's just one person among billions. And, he's getting better treatment and advocacy than almost all of them (us). We'll persevere. BOL is just around the corner. It's all okay. I'm sure it's difficult to impress trauma personnel in an ER. He impressed them - I think mostly by his spirit and endurance - and I think they did the best they could. No despair. He's got me and his Mom and Sister and all of you. Thanks for the love.

Ron

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[split] [link=http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1317878886/0#0][splithere][/link][splithere_end]

Sorry folks, I move the post   from +21 on her request and I accidentally grabbed some wrong messages with it.

I think I have it all corrected, let me know if not.

FG

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Hey Kaboomski,

Well last night (3 AM actually) I came across this thread and despite Ron's attempts to reassure us, I of course was pretty horrified by what's happening to Michael.

You know how the mind races when it's emergency CH time, and the only thing I could think of was to email Peter Goadsby, the preeminent CH specialist, telling him what's been happening and making a desperate type plea for him to consider getting Michael into a trial of the latest "no implant" technology or something.

The reality is that Michael traveling up to San Francisco isn't actually so do-able, but Doc Goadsby replied to my email immediately at 1 AM PST (!!!!) and wants to help somehow (his guy has also emailed Ron). So last I heard Ron hopes to get Goadsby consulting with Michael's current neuro and I imagine Ron's been busy faxing all kinda things'n stuff.

Really hoping here that I haven't just loaded Ron up with a bunch of faxing busywork and that something positive can come out of it.  :o

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And bless you, Jerry and everyone else here. This is the kindest, most open and loving group of people I've ever in my life been involved with. I'm honored to be among you.

Yeah, the Jeebs really outdid himself on this one. He emailed Dr. Goadsby, told him about Michael and asked if he would help. Dr. Goadsby sent an email to me offering to help my son. Wow!

Hey Jeebs. Anything I can do for you? Wash your car? Mow the lawn? Want a kidney? A chunk of my liver? Anything? Love ya, Dude.

Ron

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I'd go for some kidney pie with a side of liver'n onions, but fortunately for you I'm vegetarian, Ron!  :D

And thanks Jerry - of course there's always more to every story.....Ron has come through for me big time in the past in a way that required much more significant involvement and effort than my sending that email off!

Pretty darn tootin' cool of Doc Goadsby to have actually responded immediately and personally like that wouldn't ya say?  :o:)

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Other minds may race, Jeebs sir, but few as compassionately, wisely, and boldly as yours.  What a beautiful thing to have done.  And now, new HOPE.  Bless you, bless Michael, bless Ron.

DITTO...DITTO...DITTO...

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What can I say . . . . I love you all, you are the most selfless group of people that I have ever been associated. 

Praying for Michael that he will finally get some relief, and that everyone here gets back what they give 10 fold!!  No one deserves it more.

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Damnit Ron,

Lee Ann told me about this thread. Sorry I haven't been here to offer my friendship and support.

I hope you and Michael get the relief you are due.

The stay in the ER might be just what's needed to jelly Michaels brain out and get a fresh start. I hope so.

Back to the BOL thing. I got the investors prospectus a year or so ago and the suggested retail is supposed to be $400 for three doses. All things are subject to change but if the price stays in that ballpark it should be a win/win for everyone.

Sending best wishes your way.

Dan

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Jeebs da Man, all right. I was expecting Dr. Goadsby to come out to our place to treat Michael, however. He expects us to go to him! The nerve! I'm a very busy man; what with all the TV watching I gotta do and shit. All kidding aside, the good doc just feels (far out, me saying how he feels) that he needs to see Michael, talk to him and generally check him out before he's comfortable giving any advice. I don't think I'm betraying any real confidence (I asked the Jeebs first) by letting you read the exchange of emails (read from bottom up, of course):

My final email to Goadsby:

You are so kind to offer to help my son. Thank you. I will bring him to S.F. I need to know where and when and what you'd like me to bring.

Ron

Goadsby's response to my 1st email to him:

On Oct 7, 2011, at 2:53 AM, Goadsby, Peter wrote:

I understand regarding the travel

It is very difficult to offer advice on a complex problem at a distance.

I would be happy to see him if that were possible

My 1st email to Goadsby:

________________________________

From: Ron Leyva [layvuz4@nethere.com]

Sent: Thursday, October 06, 2011 10:43 PM

To: Goadsby, Peter

Subject: Mike Leyva, CH patient

Hello Doctor,

I received an email from you this morning, very kindly offering to see my son, Michael. His case is as, or more severe than anyone in our Cluster Community (ClusterBusters.com<https://mail.ucsf.edu/owa/UrlBlockedError.aspx>) has come across. We made two trips to the ER this week and Mike was finally admitted to Alvarado Hospital (we live in San Diego) thanks to Dr. Omar Ghausi (619-287-0147) to see what they could do to ease his pain. They really didn't have much success but I'm sure it wasn't for lack of trying.

I'm hesitant to make the trip to S.F. to see you. I don't want to subject Mike to the pressure of a plane ride and land transportation would take too long. I'm pretty sure I can get his medical records to both you and Dr. Ghausi tomorrow, if need be. I would very much appreciate your having a phone conversation with Dr. Ghausi to hear from him what was done in hospital and perhaps get from you some recommendations for Mike's further care.

Dr. Steven Horowitz (619-881-7896), Pain Specialist, has been taking care of Michael for the past seven years. It might be helpful if he were also a part of the conversation.

I should mention that psychedelics (LSD and psilocybe mushrooms) have given Mike the most pain-free time but they lost effectiveness a few months ago after about a year-and-a-half of help.

I can spend tomorrow doing what I can to organize. I'm at 619-445-0434. Maybe the first part of next week would work for everyone. Thank you, Doctor. You've been a hero of mine for a long time.

Ron Leyva

Goadsby's office's 1st email to me:

Hello,

Please have pertinent medical records faxed to 415-353-9539.

We have a quite a waitlist, though weÂ’ll do our best to accommodate an appointment expeditiously once records are received.

Thanks,

Chris

CHRIS FREY

UCSF HEADACHE CENTER

PRACTICE MANAGER

Goadsby's respose to Jeebs:

He certainly sounds in bad way.

I would be happy to see him to discuss what is possible.

It is hard to say what can be done without seeing him and getting a good history.

I copied the practice manager Chris Frey into the email for any arrangements that need to be made.

PJG

Jeeber's 1st email to Goadsby:

On Oct 6, 2011, at 0:55, "Matt xxxxx" <matt@xxxxxxxx.com<mailto:matt@mattxxxxx.com>> wrote:

Hello Dr. Goadsby,

I met you briefly and at the Nashville OUCH conference, enjoyed your talk, and found it to be genuinely informative.

I'm writing you not about myself (my CH is currently well under control) but about a young man, Michael Leyva who easily has the most severe case of CH I've ever heard of.

His CH escalated to unspeakable depths following a car accident years ago. Unable to reign it in at all (imitrex etc. ceased working for him), his doctors decided to put him in an induced coma.

He came out of it with no improvement. The only thing that took the edge off a little was high doses of methadone.

He then improved for a while after "last ditch effort before suicide" doses of hallucinogens, but is now back in as much unbearable agony as he ever was. He's been hospitalized with teams of neurologists throwing everything they have at him to no avail, finally discharging him today, breaking the hearts of the online CH community who know him and his story so well.

He can't be expected to hold on any longer without hope, hence my plea to you here:

Is there any way you could usher him into a research trial or something for the newest technology you spoke of towards the end of your talk?

I'm pasting an excerpt from the latest online update regarding Michael's condition (prior to his discharge) from his father and caretaker Ron, and I'm providing Ron's email address and phone number below - THANK YOU.

-Matt xxxxx

(Michael's father) Ron Leyva

phone: 619-445-0434

email: <mailto:layvuz4@nethere.com> layvuz4@nethere.com<mailto:layvuz4@nethere.com>

"There are now several local (I live in San Diego) neuros, including my neuro and my pain spc who are discussing what to do next. They're mystified that he can take the amount of narcotics they've given him and it doesn't even touch it. He was getting 100 mg of methadone 2x/day, which they dropped to 1x/day. Also, 2 mg of dilaudid every hour. It doesn't touch his pain! They're also titring a warfarin drip, currently at INR 1.1. He's been given depakote (I think one of the things that didn't work). He's on an ergotamine drip. They did the thing with the lidocaine-soaked cotton swab up his CH-side nostril. Didn't work."

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I'm speechless...nearly.

Jeebs - You have been a solid rock of support for so many of us.  You went above and beyond by taking the initiative to contact Goadsby.  I have the utmost respect for you.

Ron - I agree with Ting, you are a good man and have also been selfless in helping so many of us here.  What comes around, goes around. 

It's easy to develop a negative attitude toward doctors when you are bounced from one to the other and they seem clueless about CH or, worse yet, they have a condescending attitude.  Dr. Goadsby's kind gesture gave me a well deserved attitude adjustment.      

Reading this thread made my day.   :)

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I spent the day doing what needed to be done to get Mike's records from his doctor/hospital to Dr. G. Of course, my fax machine took a dump on me and I had to drive to a Kinko's in town. Mike's better today. He's up and around, still getting hit pretty hard - but better. He wants to go to work Wed. We'll see how he feels.

Ron

Thanks again, Jeebs!

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Tonight I read a lot of topics I missed past month's but this topic was make me feel sad.

Everybody with CH knows how each other with CH feels but reading about Micheal is hard to imagine. How in the world could someone get so much pain and getting no relief with every drug of herb there is available. 

I hope BOL-148 is soon available specially for Ron's son Micheal.

Ron, wishing Micheal and yourself relief very soon, you both deserve some good luck and strength !!!

Greetz Oscar

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