Yes there are some around here that have gone that route.  Lizzie2 is one.  She needed to have the surgery done twice due to complications from infection the first time around.  From what I understand the 2nd time went better.

Battery and controller technology is getting smaller all the time.  So the equipment is getting easier to live with.

However, I'm with you on this, it is brain surgery  :o  Only you can say if you are there yet.  This is very risky stuff IMO.

Have you had your Testosterone level tested?  I went through a lot of your posts but didn't see it anywhere.  I appologize if I've simply missed it.

HRT is my magic bullet right now.  It's a simple blood test and is worth exploring before consider such desperate options.

How have you made out with higher flow O2?  25-60lpm really works well for me.

I hope you find something soon...

-Dennis-

Hormone Replacement Therapy.

-Dennis-

Chris, you'll see that most of us use a minimum of 15 LPM and quite frankly I could use more than that when a hit is bad.  My reg. only goes to 15 LPM, but luckily maxing it out has been successful enough for me.  I've learned that whatever these nueros say when it comes to O2 flow, I think they're full of boloney since they're not feeling the pain.  My saying is, "if it works, keep at it".  I'll have to dig out some of Batch's explanations to bring along.  He's the Jedi Master of oxygen.

I'll explain more on Sunday :)

Chad

Carrie (Lizzie2) works at Jefferson.  You might ask your Dr to have her contact you.  Haven't seen her on here in a while, but she is a very gracious young lady who spoke at the OUCH convention last summer telling about her experience.  She is a proponent of ONS.  Tell her I said Hi and we miss her around here!

Jerry

Have you tried busting first?

you can also read her story about that here

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I don't have her permission to give out her name.  That is why I suggest you ask your Dr to contact her and ask her to contact you.  I know, knowing her that she would not have a prob with me giving her name, but I would not want someone giving mine out without letting me know first.  She had the ONS done there, and is well known in the HA center, so it won't be a problem for your Dr to know who she is.  If you can't get it that way let me know and I'll try to reach her and get permission.

I'm not trying to be difficult, just courteous. :)

Jerry

Chris H wrote on Nov 4^th, 2010 at 9:12pm:

I haven't tried busting yet. I want to know as much as possible about all options. -Chris

I can't imagine opting for something as permanent as ONS before trying something that has about a 75-80% success rate and comes straight from God's green earth. But that's just me.

Brew wrote on Nov 5^th, 2010 at 11:03am:

I can't imagine opting for something as permanent as ONS before trying something that has about a 75-80% success rate and comes straight from God's green earth. But that's just me.

Brew, he is getting there.  Me and another guy from Clusterbusters are going to visit him this Sunday.  I plan on introducing the whole "busting" thing which he seems very curious about.  People must remember, it can take time for the whole busting thing to work.  It took me a lot of trial and error till I figured out my attack plan.  You know what mean....

All I'm saying is that if it were me, I'd be first trying something that I could leave behind if it failed, with no lasting effects.

Callico wrote on Nov 5^th, 2010 at 10:30am:

I don't have her permission to give out her name.

You might try sending her a PM.  If she has e-mail options set up for received PMs she would get it. I believe this is the default setting.

-Dennis-

Chad wrote on Nov 5^th, 2010 at 11:41am:

Brew wrote on Nov 5th, 2010 at 11:03am: I can't imagine opting for something as permanent as ONS before trying something that has about a 75-80% success rate and comes straight from God's green earth. But that's just me. Brew, he is getting there.  Me and another guy from Clusterbusters are going to visit him this Sunday.  I plan on introducing the whole "busting" thing which he seems very curious about.  People must remember, it can take time for the whole busting thing to work.  It took me a lot of trial and error till I figured out my attack plan.  You know what mean....

That's awesome.....no amount of research, facts and figures, holds a candle to the personal touch. Bless both of you.

Joe

Guiseppi wrote on Nov 5^th, 2010 at 1:22pm:

Brew, he is getting there.  Me and another guy from Clusterbusters are going to visit him this Sunday.  I plan on introducing the whole "busting" thing which he seems very curious about.  People must remember, it can take time for the whole busting thing to work.  It took me a lot of trial and error till I figured out my attack plan.  You know what mean....That's awesome.....no amount of research, facts and figures, holds a candle to the personal touch. Bless both of you. Joe

Thanks Joe!

I'm just spreading the word like those who helped me.
It's the least I can do.

When doctors(except for those few who get it) and the medical profession fails, it's time to take matters into our own hands. 

Chad wrote on Nov 5^th, 2010 at 11:41am:

Brew wrote on Nov 5th, 2010 at 11:03am: I can't imagine opting for something as permanent as ONS before trying something that has about a 75-80% success rate and comes straight from God's green earth. But that's just me. Brew, he is getting there.  Me and another guy from Clusterbusters are going to visit him this Sunday.  I plan on introducing the whole "busting" thing which he seems very curious about.  People must remember, it can take time for the whole busting thing to work.  It took me a lot of trial and error till I figured out my attack plan.  You know what mean....

Just talking with another clusterhead face to face will make a tremendous difference in his life.  Good for you!

Jerry

Chris,

I respect and understand your reluctance to go that route.  I have not either, but mine is because of family in law enforcement.  I won't compromise their integrity, although I keep close tabs on progress on that side of the house.  I try hard not to be envious.

We each have to come to our own conclusion and live by it.  If you do decide bust just don't advertise! :D

Jerry

[quote author=29272A28204B0 link=1288878778/8#8 date=1288925350]you can also read her story about that here

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Thanks for posting that Black...that was a remarkable read!  I always like to learn something new every day about CH.  Carrie is a courageous woman and a trailblazer!

Chris, you've got a tough choice.  Whatever you choose we'll be here for you...take care...

Pickles lol  ;)

Testosterone level testing and Hormone Replacement Therapy are new in interest and cannot be understood without doing a little research.  Just because you've had your level tested "once" just doesn't do it.  It has to be checked several times a month as it wanes and ebbs.

Some have gotten their lives back by doing the research, finding a doc who is willing to work with them and using the right method of application.

Check out the thread down a bit below this one, entitled "WHY don't we pay attention to this?"
« Pages 1 2 ... 10 11 12 »

It isn't sexist, or scary or hard to understand if you just take the time to read........and there are testimonies by our own ch community in progress that will change your thinking about HRT. It doesn't work for everyone, but it's worth a shot........almost anything is, before you agree to surgery.

Please, take the time to read it!!

Your welcome, Chris.  Let me know what you think about the other thread.

Hi,

I am going to TJU as well and just got recommended to have a stimulator put in as well.  I have some confused version of hemicrania continua with cluster-like components.  Have you started this process?  I am curious how it works- I see Dr. Young who mentioned that they would put in an occipital and trigeminal stimulator.  I am supposed to go to pain clinic in a couple of weeks to be evaluated for the trial system.  Where are you in the process and can you tell me how this works?

Thanks,
Carolyn