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You just never know... (Read 2174 times)
Gator
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You just never know...
Jul 23rd, 2008 at 5:09am
 
...where you are going to meet another clusterhead.  I went for a neurosurgery consult for ONSI on Monday.  I was in the exam room waiting for the doc to come in when a nurse pops her head in and asks if I am the guy with cluster headaches.  I told her I was and she said she gets them too.  I asked her what treatments she was using and she said none, she just goes to the ER when it gets too bad.  I explained that there were treatments that could possibly make her life a lot better when her next cycle comes around like oxygen, imitrex injections, verapamil and lithium.  I told her about OUCH and invited her to check out the Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register and clusterheadaches.com. 

In the end, it turned out that she was the person in the neurosurgeon's office that dealt with the insurance companies and the Medtronics people and such.  Assuming that she can get the insurance company to go for it, I am tentatively scheduled for ONSI surgery on September 4th.

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Melissa
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Re: You just never know...
Reply #1 - Jul 23rd, 2008 at 8:20am
 
AWESOME Mike!!!!

Smiley Smiley
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George
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Re: You just never know...
Reply #2 - Jul 23rd, 2008 at 8:50am
 
Wow, talk about serendipity...

Keeping my fingers crossed for you, Mike.  Hope the surgery comes through.

Best wishes,

George
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Jennifer
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Re: You just never know...
Reply #3 - Jul 23rd, 2008 at 10:42am
 
very cool!
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Re: You just never know...
Reply #4 - Jul 23rd, 2008 at 11:02am
 
That shows, once again, that clusterheads are everywhere. Great story, Mike. Smiley

Sanna
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thebbz
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Re: You just never know...
Reply #5 - Jul 23rd, 2008 at 12:16pm
 
Good luck with the surgury Mike. Shocked
all the best
thebbz Wink
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DennisM1045
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Re: You just never know...
Reply #6 - Jul 23rd, 2008 at 12:28pm
 
Talk about paying it forward!  You just never know where clusterheads are gonna show up. 

Good luck with the ONSI...

-Dennis-
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Re: You just never know...
Reply #7 - Jul 23rd, 2008 at 1:26pm
 
You're right, Mike - you just never know!  What a great story.

Good Luck - I hope it all works out for you.

Carol
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Sandra von der Laage
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Re: You just never know...
Reply #8 - Jul 23rd, 2008 at 1:59pm
 
Please, what is ONSI surgery?  I am sure that we perform it in Germany but the initials are different.  We do perform DBS, and it is always referred to in English.  Thank you and good luck Mike Smiley!
Sandra
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Re: You just never know...
Reply #9 - Jul 23rd, 2008 at 2:28pm
 
WOW, good luck Mike!   Smiley
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Re: You just never know...
Reply #10 - Jul 23rd, 2008 at 2:34pm
 
That Rocks  - Good luck  Smiley
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Re: You just never know...
Reply #11 - Jul 23rd, 2008 at 4:22pm
 
Coolness!  Smiley
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Re: You just never know...
Reply #12 - Jul 23rd, 2008 at 5:08pm
 
Mike,

So glad to hear this!  I was at my neurosurgeon today and met a guy in the office - he didn't have CH, but he heard me on the phone saying I was waiting for my surgeon (said his name into the phone), and he came over.  Started talking to him - he may need spinal surgery - turns out this guy was in WWII and Vietnam.  Told some INCREDIBLE stories - and  it was quite possibly one of the neatest conversations I've had in awhile.  I'm glad he came over to talk to me.

Glad to hear you will be getting the ONSI hopefully!  I have a question, but will ask via PM at some point.  Going to lie down in a minute.  Since I started back to work, I've been exhausted, which is why I haven't really been around.  Also had yet another post-op infection and just finished the abx on Monday.  All is well now and the stim is working great.  We've made a few adjustments - me and the company rep, that is.  I'm very happy with my stim.  Have made 3 weans off my 1 med....which is exciting. Smiley  Let me know if you have any questions!!  Oh and what company are you going with?  And are you planning to have a trial first?

Sandra - ONSI is Occipital Nerve Stimulator Implant.  Small leads with electrodes are implanted under the skin over the occipital nerves.  It is thought that stimulating the occipital nerves indirectly stimulates part of the brain associated with migraine and cluster headache, thus reducing the pain.  So you have these leads and electrodes under the skin on the back of your head, and the wires run to a battery pack/IPG (Implantable Pulse Generator) that is implanted in the chest, abdomen, or buttock.  (Although sounds like some new and upcoming ones will have some interesting implant options!)  It is then controlled via remote, and most people get rechargeable batteries implanted.  The recharge occurs about once a week or so, and then the battery needs to be replaced years down the road, as long as everything is going well.  There have been 2 studies showing efficacy for cluster headache and recently the 1st study showing efficacy for migraine was released at the American Headache Society mtg a few weeks ago in Boston.

Good stuff.....very good stuff.  I also have the supraorbital electrode which is making quite a bit of difference for me, but that falls outside the "theory", so is an atypical addition to the implant.  My neurosurgeon is looking at the role that the supraorbital electrode plays in reducing the pain.

Mike - I'm happy to hear that this is becoming an option for you most likely!  It's making a HUGE difference for me!

Hugz,
Carrie Smiley
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Re: You just never know...
Reply #13 - Jul 23rd, 2008 at 11:32pm
 
Super news Mike on both counts!  I really hope it works for you, and that you can get it soon without any complications. 

Glad you were able to talk with the nurse as well.  One by one we are getting the word out.

Jerry
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