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MAYO CLINIC

Posted by DENNIS on 8/18/01 at 15:51 (057110)

LIKE TONY O., I EXPERIENCE A GREAT DEAL OF FRUSTRATION, NOT YET TO THE EXTENT THAT HE IS FEELING. I LIVE IN NEBRASKA AND THE 'BEST THING' THAT WE HAVE IN OUR 'NECK OF THE WOODS' IS THE MAYO CLINIC IN ROCHESTER, MN. I HAVE THOUGHT ABOUT GOING THERE FOR HELP (NOT SURE HOW I'D GET THERE AS A 20 MINUTE CAR RIDE IS MY LIMIT DUE TO PAIN). DOES ANYONE KNOW IF THEY ARE EXPERIENCED IN THE AREA OF TTS? IF SO, WHAT WOULD BE THE ACTION NECESSARY TO GET INVOLVED WITH THEM? I KNOW THEY DO WONDERS AS I HAVE A GRANDCHILD WITH SERIOUS HEART AND OTHER INTERNAL ORGAN ABNORMALITIES AND THE MAYO CLINIC WAS ABLE TO PINPOINT THE PROBLEMS WHEN NO ONE ELSE COULD (SHE IS SCHEDULED FOR OPEN HEART SURGERY SEPT. 07). I HAVE ALSO CONTEMPLATED THE UNIVERSITY OF NEBRASKA MEDICAL CENTER IN OMAHA FOR A 'CHECK IN' UNTIL THEY COULD GET THINGS SORTED OUT. ANY SUGGESTIONS? WHAT DOES THE CENTER FOR RARE DISEASES (IN ATLANTA?) HAVE TO SAY ABOUT THIS CONDITION?

Re: MAYO CLINIC

BrianG on 8/18/01 at 20:53 (057124)

Hi Dennis,

I can't answer any of your questions directly, but I have a suggestion. Since you seems to be proficient with your computer, why not go to a seach engine and look up the Mayo Clinic and the U of Nebraska. Go to their web sites and look for mediacal information concerning your condition. Some of these places will take e-mail, and you can talk directly with the departments involved. Good luck

BCG

PS About typing with ALL CAPS. Some people have a hard time reading it. You might do better with lower case. Even if the capitol letters are not where they belong, we'll still know what your saying.

Re: MAYO CLINIC

Julie on 8/19/01 at 02:45 (057135)

Brian and Dennis, I agree about the CAPS. They really are difficult to read. That's because of the absence of ascenders and descenders - typographic terms for the bits that stick up above (as in the 'b' of 'because' and down below (as in the 'y' of 'really')). I'm saying this because I often find myself skipping over posts that are written in all caps: I can't take them in properly, and feel guilty about it!

Re: MAYO CLINIC

john h on 8/19/01 at 10:50 (057160)

dennis i would think that somewhere in Omaha there are some competent neurologist or an orthopedic foot and ankle surgeon (preferable with a fellowship in foot and ankle surgery) that might help you. TTS is a toughie. Hard to diagnoise. I had the TTS surgery. Wendy from Canada seems the most knowledgeable person on this board about this problem. my experience is it is to easy to misdiagnois TTS and jump into unrewarding surgery. read all you can about this condition on this board and what the people who have had the surgery say. it can be treated conservatively.

Re: MAYO CLINIC

DENNIS on 8/19/01 at 16:04 (057181)

SORRY ABOUT THE ALL CAPS, BUT MY EYESIGHT ISN'T THE BEST AND IT'S THE BEST WAY FOR ME TO SEE WHAT I AM SENDING. I HAVE A PROBLEM READING LOWER CASE MESSAGES, SO YOU SEE, WE ALL ADAPT TO WHAT WORKS BEST FOR US.

Re: CAPS

Julie on 8/19/01 at 16:23 (057182)

That's ok then, Dennis. Don't worry about it. I'll try to read your messages more carefully.

Re: MAYO CLINIC

Pauline on 8/20/01 at 09:33 (057247)

Dennis,
I'm sorry I'm late with this post, but my experience with the Mayo Clinic
has always been extremely professional and top notch. Because of the way their program is set up you will probably see all the necessary physicians within a 2 day period and then be given your diagnosis and treatment plan.
I have found on a whole because of their efficiency the cost and certainly the time that is involved is less than you would spend elsewhere.
My concern as with all new physician visits is that you go, not with all your hopes hanging on the visit and without regret for any monies spent.
This way your sure to return home with a happy person regardless of the report.
Wishing you the best.

Re: MAYO CLINIC

Pauline on 8/20/01 at 09:35 (057248)

Sorry that's as a happy person, but if you can bring a happy person home with you that's ok too. We all need cheer in our lives.
Again wishing you success.

Re: MAYO CLINIC

BrianG on 8/18/01 at 20:53 (057124)

Hi Dennis,

I can't answer any of your questions directly, but I have a suggestion. Since you seems to be proficient with your computer, why not go to a seach engine and look up the Mayo Clinic and the U of Nebraska. Go to their web sites and look for mediacal information concerning your condition. Some of these places will take e-mail, and you can talk directly with the departments involved. Good luck

BCG

PS About typing with ALL CAPS. Some people have a hard time reading it. You might do better with lower case. Even if the capitol letters are not where they belong, we'll still know what your saying.

Re: MAYO CLINIC

Julie on 8/19/01 at 02:45 (057135)

Brian and Dennis, I agree about the CAPS. They really are difficult to read. That's because of the absence of ascenders and descenders - typographic terms for the bits that stick up above (as in the 'b' of 'because' and down below (as in the 'y' of 'really')). I'm saying this because I often find myself skipping over posts that are written in all caps: I can't take them in properly, and feel guilty about it!

Re: MAYO CLINIC

john h on 8/19/01 at 10:50 (057160)

dennis i would think that somewhere in Omaha there are some competent neurologist or an orthopedic foot and ankle surgeon (preferable with a fellowship in foot and ankle surgery) that might help you. TTS is a toughie. Hard to diagnoise. I had the TTS surgery. Wendy from Canada seems the most knowledgeable person on this board about this problem. my experience is it is to easy to misdiagnois TTS and jump into unrewarding surgery. read all you can about this condition on this board and what the people who have had the surgery say. it can be treated conservatively.

Re: MAYO CLINIC

DENNIS on 8/19/01 at 16:04 (057181)

SORRY ABOUT THE ALL CAPS, BUT MY EYESIGHT ISN'T THE BEST AND IT'S THE BEST WAY FOR ME TO SEE WHAT I AM SENDING. I HAVE A PROBLEM READING LOWER CASE MESSAGES, SO YOU SEE, WE ALL ADAPT TO WHAT WORKS BEST FOR US.

Re: CAPS

Julie on 8/19/01 at 16:23 (057182)

That's ok then, Dennis. Don't worry about it. I'll try to read your messages more carefully.

Re: MAYO CLINIC

Pauline on 8/20/01 at 09:33 (057247)

Dennis,
I'm sorry I'm late with this post, but my experience with the Mayo Clinic
has always been extremely professional and top notch. Because of the way their program is set up you will probably see all the necessary physicians within a 2 day period and then be given your diagnosis and treatment plan.
I have found on a whole because of their efficiency the cost and certainly the time that is involved is less than you would spend elsewhere.
My concern as with all new physician visits is that you go, not with all your hopes hanging on the visit and without regret for any monies spent.
This way your sure to return home with a happy person regardless of the report.
Wishing you the best.

Re: MAYO CLINIC

Pauline on 8/20/01 at 09:35 (057248)

Sorry that's as a happy person, but if you can bring a happy person home with you that's ok too. We all need cheer in our lives.
Again wishing you success.