My Journey with Ehlers-Danlos Syndrome

"On the girl's brown legs there were many small white scars. I was thinking, do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived."

- Little Bee by Chris Cleave

Friday, July 20, 2012

The News

I heard back from the specialist who I saw in clinic with my EDS specialist. The news is a bit confusing and complicated. I've discussed earlier the readings of my shoulder MRI, which we had sent to this specialist as well. Shoulder MRIs can be tricky to read because there is a lot going on in the shoulder, this makes it hard to see and be precise about possible damage.

Just to summarize about the reading of this same MRI; the first shoulder surgeon who I saw thought there was no possible tear. He recommended doing more PT and things would get better. The next should surgeon I saw said it was too hard to tell if there was a tear, and that if there was one she thought it was small and that waiting for surgery would not cause any damage. The shoulder surgeon I saw most recently thinks that there is a tear and that I need to have surgery sooner rather than later.

Even with this new news, I still feel as though I am not ready to have surgery. Like I've said before, having surgery as an EDS patient is complicated. There are many possible complications that will occur, understanding that I strongly feel that surgery is absolutely the last resort and I can't come to that until my quality of life is effected on a daily basis.

I will be checking in with the second shoulder specialist I saw to get her opinion once again, but I don't think there will be any changes in our plan. (she's the one who really understands EDS and me as a patient, the other two just don't get it- see "You Win Some, You Loose Some" post explaining what makes a good doctor for EDS patients).

Keep calm and carry on.

1 comment:

  1. Hi madeline
    My name is Jenna, you are an inspiration, beautiful and a hero.
    I was born with a rare life threatening disease, and have 14 other medical conditions, and developmental delays.
    I wrote this poem
    Each of us are Special
    Each of us different,
    No one is the same
    Each of are us are unique in our own way,
    Those of us who have challenges, we smile through our day.
    It doesen't matter what other's say
    we are special anyway.
    What is forty feet and sings? the school chior
    http://www.miraclechamp.webs.com

    ReplyDelete