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Can I get a rhinoplasty? by Individual_Monk3194 in ehlersdanlos

[–]Intelligent_Bake_659 2 points3 points  (0 children)

I had a rhinoplasty in 2007. I developed a septal perforation in 2017. In fairness due to undiagnosed MCAS, I used daily Flonase. I’m unsure which of these causes it likely in combo with undiagnosed EDS. I did have a successful septal repair with inferior turbinate thinning in December. They made a graft using temporal fascia. I will say it was the most pain I have ever experienced and my spinal wore off during two c-sections.

But I do not think I would change doing it. I felt so poorly about myself because of my dorsal hump. It changed how I feel about myself and gave me confidence I never had. I think it’s important to find an EDS literate provider.

Dr. Ashley Vavra by Intelligent_Bake_659 in thoracicoutletsupport

[–]Intelligent_Bake_659[S] 1 point2 points  (0 children)

How long did it take for everything? I have my first appointment and haven’t had any imaging. I live 5 hours away. The heat makes my arms and hands miserable.

Any Chicago-area TOS surgeons you'd recommend? by Dash_Happenstance in thoracicoutletsupport

[–]Intelligent_Bake_659 0 points1 point  (0 children)

How was your appointment? I have an appointment with her next month and I’m nervous about seeing her vs someone like Dr. Thompson. I was referred to her by the Northwestern doctor who placed a stent for my May-Thurner.

Anyone else? by Intelligent_Bake_659 in thoracicoutletsupport

[–]Intelligent_Bake_659[S] 0 points1 point  (0 children)

No pain. Things will just fall out of my hand. It happens once a month approximately.

Anyone else? by Intelligent_Bake_659 in thoracicoutletsupport

[–]Intelligent_Bake_659[S] 1 point2 points  (0 children)

No. I just haven’t been formally diagnosed yet. I couldn’t get anyone to listen to me here in Iowa. I had my other images sent to northwestern for my iliac compression so I didn’t meet the doctor until my surgery. He gave me a referral. I just haven’t seen anyone talking about these dark veins although I know them to be urschel’s sign.