Shunt?? Panicking...

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Re: Shunt?? Panicking...

Postby drummergrl » Tue Jul 09, 2013 9:34 pm

Annemarie,

Thanks for your sweet reply. This board is full of such supportive people!

I have not heard back from Dr. Heiss yet...with last week having the July 4th holiday, my guess is they're a little behind. I'm hoping to hear this week or next. I think about it constantly. It really feels like my last shot at it...all of my other doctors have essentially thrown their hands up, and these symptoms certainly aren't getting better. But as I've been discussing with Reedy, if Heiss says I don't quite fit the criteria it'll be time for me to accept that these are the cards I've been dealt. Even though I was diagnosed 7 years ago, I still don't think I've really accepted that I will be dealing with SM forever. It's so disheartening. Anyway, didn't mean to get mopey!!!

I will definitely post something when I hear back from Heiss!
CM, SM, Scoliosis
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Re: Shunt?? Panicking...

Postby drummergrl » Tue Jul 16, 2013 6:30 am

Well, I did not get accepted into Dr. Heiss's study. I can't lie, I'm really bummed. The emails said that I don't fit all of the criteria and that Dr. Heiss doesn't know why my symptoms are progressing.

So that's that. I'm glad to have an answer from them, but it's unfortunate because I had been hoping so much that he could help me.
CM, SM, Scoliosis
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Re: Shunt?? Panicking...

Postby reedy » Wed Jul 17, 2013 7:25 am

I'm really sorry to hear that you didn't get on the study. :cry:
It is a long shot - a study has specific criteria that have to be the same for all participants, or balanced out across the participants, many of which are independent of your condition.
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Re: Shunt?? Panicking...

Postby syrinx48 » Fri Jul 19, 2013 11:36 am

I also am very sorry to reed that you didn't get into the study of Dr. Heiss. What are your options now? What are you going to do?
I wish I could give you more advise or hope for one way or the order, but I can't. I am not that familiar to the American system, only to tell you that I think of you!

Gentle hugs,
Annemarie
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Re: Shunt?? Panicking...

Postby drummergrl » Sun Jul 28, 2013 4:03 pm

Thanks for your thoughts, I really appreciate them. I knew it wasn't a given, but I had unfortunately gotten my hopes up.

As for what I'll do now, I'm not really sure. I guess there's really nothing that I can do. I have no physicians who are willing/able to do anything further, so I think that's that. I'm due to see my neurologist in about 10 months, so unless something really drastic occurs (symptom-wise) I'll just need to get used to my "new norm" and stop thinking about all of this. It's too disheartening to keep getting my hopes up only to have them dashed yet again. Thanks for your support!
CM, SM, Scoliosis
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