songspinner (![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
songspinner) wrote2017-04-16 07:01 pm
songspinner) wrote2017-04-16 07:01 pm
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Posting here as well, since I'm in the process of switching over.
The journey to Mayo Clinic was what we'd hoped - some answers and some pending for our daughter. One thing that has a possibly simple fix for at least part of it, and one very complicated thing (a dysautonomia syndrome) that explains a hell of a lot about the last 5-7 years. That doesn't have a cure, but it has treatments and things that will ease the symptoms and maybe give her part of her life back that she's missed. And more possibilities for the future. The rest is pending because there are more test results and interpretations to come. There were a lot of tests - 4-5 appointments a day. And she got to see the inside of her heart. (she loved that, little science nerd that I've raised) Mayo Clinic is absolutely amazing - it's a medical city, literally. The main hospital is attached to a few big hotels (including the one where we were staying) by skyways and tunnels. It has its own food court, mall, pharmacies, patient education centers with classes when you get a diagnosis, free shuttles to satellite facilities, and a TON of help while you're there. So ridiculously organized! She had no bad experiences, and in fact had several doctors reassure her that no, her pain and other symptoms were not in her head, that the other doctors who said that were just plain wrong, and that they were glad she came to them.
We're exhausted, happy to have the beginnings of answers, a little scared at what this will now all entail, but hopeful for the first time in a long time.
The journey to Mayo Clinic was what we'd hoped - some answers and some pending for our daughter. One thing that has a possibly simple fix for at least part of it, and one very complicated thing (a dysautonomia syndrome) that explains a hell of a lot about the last 5-7 years. That doesn't have a cure, but it has treatments and things that will ease the symptoms and maybe give her part of her life back that she's missed. And more possibilities for the future. The rest is pending because there are more test results and interpretations to come. There were a lot of tests - 4-5 appointments a day. And she got to see the inside of her heart. (she loved that, little science nerd that I've raised) Mayo Clinic is absolutely amazing - it's a medical city, literally. The main hospital is attached to a few big hotels (including the one where we were staying) by skyways and tunnels. It has its own food court, mall, pharmacies, patient education centers with classes when you get a diagnosis, free shuttles to satellite facilities, and a TON of help while you're there. So ridiculously organized! She had no bad experiences, and in fact had several doctors reassure her that no, her pain and other symptoms were not in her head, that the other doctors who said that were just plain wrong, and that they were glad she came to them.
We're exhausted, happy to have the beginnings of answers, a little scared at what this will now all entail, but hopeful for the first time in a long time.