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Mat

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the mayo clinic
Apr 3^rd, 2009 at 7:40pm

So my new doc get gave me a referral to the mayo clinic in Minnesota and they accepted me, because neither he nor his colleges have any experience with clusters, has anyone here been there and is it worth going? I've been getting hit pretty hard lately and imitrex only works about half the time for me now (not sure whats up with that). The usual round of steroids didn't work for me this time and O2 only works as long as I'm on it even with a clustermask. If they can help I'm all for it, but if they aren't going to know any more than I do whats the use in going?

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LeLimey Ex Member	Re: the mayo clinic Reply #1 - Apr 3^rd, 2009 at 7:48pm Nothing ventured nothing gained - give 'em a try and if nothing else educate THEM!! Good luck
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Redd CH.com Sponsor Offline Posts: 8457 Stevens Point USA Wisconsin Gender:	Re: the mayo clinic Reply #2 - Apr 3^rd, 2009 at 7:54pm I believe that John (magick) had gone there. Might be worth trying to get in touch with him?
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Iddy CH.com Alumnus Offline Smile Posts: 486 Toronto,Canada Gender:	Re: the mayo clinic Reply #3 - Apr 3^rd, 2009 at 7:58pm I think that there has been a member go to the Mayo clinic. I'm sure if he/she reads your post you will hear. If not I agree.Go ahead with the visit. Arm yourself with all the info poosilble from the site and educate. There is nothing more satisfiying than finding an MD who is willing to listen. Best of luck
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ClusterChuck

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Re: the mayo clinic
Reply #4 - Apr 3^rd, 2009 at 8:22pm

Mat, buddy! I am SO sorry that you are getting slammed with no little to no help from meds.

You say that the oxygen only works, while you are on it, even with the O2PTImask. What regulator are you using? Is it only a 15LPM, or does it go higher? We have recently discovered that higher flow rates help those that are not getting proper results with the 15LPM.

Chuck

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CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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Linda_Howell

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Re: the mayo clinic
Reply #5 - Apr 3^rd, 2009 at 8:28pm

Mat, the only experience I even remotely had with them is when a family service contact told me they gave her 6 yr. old son....get this...Pred, Imitrex, Topomax and a few other drugs I can't remember at the moment. FOR A SIX YR. OLD.!!!!!!!!

You're an intelligent adult so this case scenario probably won't apply, but thought I'd throw it out there anyway. Sheesh....you'd think the Mayo Clinic would be better informed though.

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gore2424

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Re: the mayo clinic
Reply #6 - Apr 3^rd, 2009 at 11:58pm

Hi Mat after being chronic since Nov 1999 after many meds in many combos in May 2002 I went there and seen Dr. David Dudly about having the gamma knife thingy done he said had had no luck but they did the trigeminal rhyzotmy where they cut the trigeminal nerve completely and its not reversable 8 chronics had this done with (5) almost total relief (2) 75% relief and (1) 50 % so after thinking I had it done BUT only got a little over 4 months relief then right back to hell thats my story. Terry

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Karla CH.com Alumnus Offline One of Many and Never Alone - Join OUCH Posts: 3837 x1\|Madison WI USA Gender:	Re: the mayo clinic Reply #7 - Apr 4^th, 2009 at 9:20am My dr gave me the option to go there or to our local pain/ha clinic. I choose the local one. I am glad I did. Is there no ha clinic near you that is closer? I had great results with the local clinic. If not by all means try the mayo clinic it can not hurt you to go.
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Mosaicwench CH.com Sponsor Offline www.mosaicwench.com Posts: 3507 Near Milwaukee WI, USA Gender:	Re: the mayo clinic Reply #8 - Apr 4^th, 2009 at 12:57pm Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or In case you haven't seen it.
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Kevin_M

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Re: the mayo clinic
Reply #9 - Apr 4^th, 2009 at 2:14pm

Mat wrote on Apr 3^rd, 2009 at 7:40pm:

So my new doc get gave me a referral to the mayo clinic in Minnesota and they accepted me, because neither he nor his colleges have any experience with clusters, ...

Rock and a hard place, Matt.

I see abortives and stopping with pred for awhile but no search for a preventative, unless that has been exhausted already.

I've found that without attempts to pen in by a prevent, the beast more frequently finds a free range to dominate the landscape at will and likes the expansive lifestyle, lingering out stubbornly even giving a hard time to the abortive MPs.

Personally, withstanding an 8 without abortive help seems my limit, but then subsiding down to a 3 only to begin ramping up again. Sometimes oxygen gets it down to a 2 and I'll be exhausted, my temple sleeping on an icepack from there has helped at times.

I take it your situation is worse. There can be a time to consider a tilling with an alternative seeding throughout its stomping ground, also.

Lotsa vibes, bud.

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« Last Edit: Apr 4^th, 2009 at 2:18pm by Kevin_M »

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Redd CH.com Sponsor Offline Posts: 8457 Stevens Point USA Wisconsin Gender:	Re: the mayo clinic Reply #10 - Apr 21^st, 2009 at 3:25pm Any updates Matt?
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Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: the mayo clinic Reply #11 - Apr 21^st, 2009 at 4:55pm Ask them to consult with Dr. Dodick at the Mayo in AZ. He's a major player!
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