Flying up to Mayo today

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Flying up to Mayo today

Postby hotsauceman » Sat Apr 20, 2013 4:25 am

Flying out of Greensboro to Atlanta then Minni and Rochester. Going to wander around Rochester for a while before I have to find my appointment at 7:30 Monday morning.
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Re: Flying up to Mayo today

Postby gunflint » Sat Apr 20, 2013 6:18 am

Good Luck hotsauceman. It may be pretty white as we got a lot of snow this past several days around the state.
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Re: Flying up to Mayo today

Postby hotsauceman » Sun Apr 21, 2013 6:22 am

Raining. a little cool but over all not bad. All the snow seems to be north of here. All the farms look really cool from the plain. found out my wife is not good at the flying thing.
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Re: Flying up to Mayo today

Postby syrinx48 » Sun Apr 21, 2013 7:05 am

Good luck tomorow!

Annemarie
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Re: Flying up to Mayo today

Postby syrinx48 » Tue Apr 23, 2013 6:47 am

How did your appointment go?
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Re: Flying up to Mayo today

Postby hotsauceman » Thu Apr 25, 2013 7:20 pm

Flying home Saturday. The only thing they have to offer is to shove a shunt up the syrinx long ways. This requires another Mylo-incision that could possibly paralyze my legs with no guarantee it will help my hands. I guess I'll have to get a lot worse before I'm ready to take that gamble.
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Re: Flying up to Mayo today

Postby gunflint » Fri Apr 26, 2013 2:17 pm

I was hoping that you would have better news. i was thinking about you the last couple of days.
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Re: Flying up to Mayo today

Postby hotsauceman » Sat Apr 27, 2013 8:10 am

At least I had Dr.s that understood and were sympathetic to my future. My neurologist's mother has syringo myelia and she her syrinx was barely visible on a mri but the symptoms continue to get worse. So feeling less alone in my battle. Just sitting here in the hotel lobby waiting on my shuttle.
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Re: Flying up to Mayo today

Postby gunflint » Sat Apr 27, 2013 11:13 am

You're not alone. Even though things seem to be slowing down a little on the forum here there are many that still check every day.
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Re: Flying up to Mayo today

Postby passmass » Sat May 11, 2013 11:27 pm

Hey, I went to Mayo in 2006, learned a lot and ruled out somethings but did not get a lot of long term help. I went to The Chiari Institute in Great Neck, NY.. They put everything together for me.
I had Tethered Cord surgery at TCI. I had an excellent experience there. Really helped me.
Just a thought!!!
PASSMASS
EDS, SM C5-T2, CM, DDD, De-Tethered (Jan. 07), Fibromyalgia, Central Sleep Apnea, Central Pain Syndrone
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Re: Flying up to Mayo today

Postby marymac » Fri May 17, 2013 8:06 am

Hi Ho Hotsauceman

I'm loosing my hands now as well; don't know what you've got til it's gone is how I'm feeling. Do yours wake you up hourly? I never dreamed it would keep me from my piano but has gotten to that point. Do you have arthritis/osteo as well? Do think warm soak in epsom salts helps temporarily, but this is really obnoxious. Always try to think on the positive side but this positively stinks. . . being right handed -- that's the one the worst -- still can't do squat with the left. Have you found anything that brings relief? Have Voltaren, but that's so short. . . just wondered how you're "handling" it, total pun intended. Sorry they didn't offer you any other solution, especially after all that travel. At least we can share notes here. . . have the best day you can.
Fake smiles & sunshine
Marymac
Central disc herniations C5-6 and C6-7, extensive syringohydromyelia cavity throughout the cervical & thoracic cord (large syrinx from C6 inferiorly.)

"Every day is a gift: Thats why it's called the Present"
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Re: Flying up to Mayo today

Postby hotsauceman » Thu Jun 06, 2013 4:09 am

I take Ibuprofen for the pain but that only takes the edge off. I basiccally deal with the pain mentally. A far as sleeping my neck is the problem. It feels like someone is stabbing me behind my left ear. I can only lay in one position for a short while. My wife and I sleep in seperate beds because of my constant noving and array of pillows. My left hand can hold something very light if I use my right hand to curl my left fingers around it. My right hand I've noticed is burnig a lot more and becoming more stiff. As for arthritis, my mother has had RA for many years but they say I'm clean.
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