New Guy

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New Guy

Postby gunflint » Thu Jun 16, 2011 2:11 pm

It's been about 4 weeks since I got "the call." We found something on your MRI. After visiting my GP several times over the past year, a neurologist, a neurosurgeon, a physiatrist, an orthopedic specialist, and a physical therapist they finally found something. I had never heard of a syrinx and figured if it's just a cyst, how bad can that be. My whole future changed over the next few hours on the internet. Thankfully the next day I found this site.

I had been scheduled for a confirmation MRI and a consult with a different neurosurgeon the next week. Thankfully I had been doing a lot of reading here and had a lot more knowledge of what to expect. The NS said that I didn't want surgery because he had assisted in a couple during training and they were messy. Goodby NS # 2. I'm in the process of finding a NS in Minnesota that has experience in SM.

Now I'm in the process that most of you have gone through. Unemployment ( I was layed off because they had no lite duty work for me ) Short and long term disability insurance and SSDI. Most people don't realize that having a chronic / progressive disease is itself a full time job. At least until you get your finances and insurance in order.

Anyway I thought that I would introduce myself and say thanks.
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Re: New Guy

Postby kiminfla » Thu Jun 16, 2011 3:35 pm

Welcome to the board! Sorry you have reason to be here but glad you found us. I have Chiari, no SM, but we're all traveling this path of wellness and I wanted to wish you well. Again, welcome! You'll find a lot of caring people who can relate to what you're going through. Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Re: New Guy

Postby razzle » Thu Jun 16, 2011 3:51 pm

as you have read Mayo really isnt the place to go . You can type Mayo insearch box and read all the stories . I have the name of some new dr. and will have to find it and post later.But welcome to our site. R
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: New Guy

Postby razzle » Thu Jun 16, 2011 3:55 pm

Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: New Guy

Postby karenb » Thu Jun 16, 2011 7:05 pm

gunflint

Welcome to the board. I, too, have syringomyelia and you're right - when the doctor says "cyst" it doesn't really hit you. At least there's more reliable information available on the internet now than there was when I was diagnosed. I got about as far as the word "pathological" in Taber's Medical Dictionary and did a "deer in the headlights".

It sounds like you're taking the steps to take care of yourself, which is really good. There's lots of good info on this board, and also on our parent site (http://www.asap.org). I don't know if you're up for it, or can afford it, but the national medical conference for ASAP is in just over a month out in Colorado. I went a few years ago and found it very helpful - you meet people with the same condition, you learn a lot from the presentations, and you get to meet some of the real experts in this field on a one-on-one basis.

Best wishes - don't hesitate to reach out anytime you have questions or need advice (or doctors...).

Karen
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