We're back from the pain clinic and it didn't go well at all.  The doctor didn't really seem to understand CH and he wanted to give Phil some injections to treat neck pain from a slipped disc.  We we're both so disappointed.  We go back to his neuro in November.  Hopefully we can get some better results.  We didn't go in there asking can we do this or that.  Yeah, I heard you guys.  The only thing that we asked for was a different regulator.  If we could've come out of there with only that I would have been so happy.

After we left the VA in Ann Arbor heading back to Holland, we blew a tire on the car.  Talk about scaring the crap out of me.  I've never had that happen before.  Poor Phil, he's suffering and he has to change a tire on the side of the highway.  I could've tried to do it, but hey I'll admit I'm a girl and I don't really know that much about that stuff.  Then we were almost home and some idiot pulled out in front of us and we almost T-boned him.  What a day. I'm so glad to be in the comfort of my own home.  

I'm not trying to boo hoo, but I'm so frustrated.  I just want a PF day for my man (and everyone else) so bad.

Sorry for ranting, I know that others have it much worse than I do, but I just need to vent.

Jen  

Following is a list of sufferer recommended CH doctors in Michigan:

LIONEL GLASS
Bloomfield Hills

Dr. Todd Rozen
Ann Arbor

Chang Soo Kim
Eastpointe

Dr. Michael Bolan
Grand Rapids

Dr. Richard Ferro
Lansing

Mike Ku
Portage

Dr. Joel Saper
Ann Arbor

Dr.James R. Gramprie
Howell

It's at least a place to start. Sorry for your lousy experience.

Jen,  

The story of coming back from an appointment and being angry and totally disappointed is fairly common around here.  Try some opf the names Brew gave you and if all you are looking for is a regulator that goes to 25 lpm you can find them on e-bay.

I have sent out all the 25's I had and only have one 15 lpm regulator left.   If you think you would like to try that...pm me your full name and address and I will send it to you.

Linda

Thanks for the list Brew. :)  I really appreciate it.  We'll have to do some checking around for sure.  The VA is really letting us down.  They've done some really great things for Phil in the past, but not really for his CH.  Any advice you have is welcome.

Linda thanks for the offer.  I'll check with Phil and get back with you.

You guys are all so awesome, I feel so overwhelmed with emotion right now knowing that we are not in this alone.  I acutally have tears in my eyes.  

I love you, Luinda - you too Brew.  you guys RAWK.

Jen, sorry but not surprised to hear about your day. Bet the adrenaline surges of the tire changing and the near t-boning were great abortives for him though, huh?  It's a little drastic but we supporters have been known to trip and fall in front of our sufferers in the midst of an attack and *boom*  attack gone, because they think we've hurt ourselves.  it's the adrenaline surge - best abortive going.  a wee bit hard on the heart though (and the supporter if we keep breaking bones).  

Hang in there, lady - there's hope on the horizon.  With this crew on your side, i'm sure they'll find the magic bullet you need.  

Big hugs to you.

Tripping and falling, hey if will help him abort I'm on board.  LMAO ;D

You are so right Margi, with all of our new family here we're going to find something that works.  I just know it.  Can you feel my positive vibes?  I'm so hyped up right now.  I'm sorry I haven't slept in about 26 hours now (I'm a 3rd shifter).  It was worth it though to be with my man today.  

Love and Hugs to all!!!!!!!

You've got the right attitude, Jen......good girl!!!  

Sorry for the 'shit' day.....that' whole deal SUCKS!

It takes some doin' but I'm betting on you two....you'll get there.

Much Love & Big Hugs,
Jackie

Just wanted to give you a huge hug for being a supporter. My wife was the driving force behind finally getting me a diagnosis, then found the original CH board way back when to get me my sanity back...(shut up chuck ;D)...please don't ever under estimate the role you supporters play in our lives! [smiley=hug.gif] [smiley=heart.gif]

Guiseppi