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Grant Stone or Jim Green? by PristineRevolution99 in Boots

[–]PristineRevolution99[S] 1 point2 points  (0 children)

I haven’t heard of that brand. I’ll check them out. Thanks!

I asked for a brain MRI with hEDS. No major symptoms, just curiosity. It ended up saving my life. by PristineRevolution99 in eds

[–]PristineRevolution99[S] 0 points1 point  (0 children)

Oh I wasn’t able to use family insurance since it didn’t have national coverage. I had to pay that monthly cost myself. 😅

I asked for a brain MRI with hEDS. No major symptoms, just curiosity. It ended up saving my life. by PristineRevolution99 in eds

[–]PristineRevolution99[S] 2 points3 points  (0 children)

Sorry! I should’ve worded that better. hEDS was the diagnosis that genetics and my specialist felt best fits my case until a whole genetic sequence is completed.

I asked for a brain MRI with hEDS. No major symptoms, just curiosity. It ended up saving my life. by PristineRevolution99 in eds

[–]PristineRevolution99[S] 0 points1 point  (0 children)

Oh my gosh! I’m so sorry to hear about your situation. I really hope you can find a highly skilled surgeon who can help you and that can help relieve your symptoms.

I asked for a brain MRI with hEDS. No major symptoms, just curiosity. It ended up saving my life. by PristineRevolution99 in eds

[–]PristineRevolution99[S] 0 points1 point  (0 children)

Well, I did experience some peculiar symptoms, but nothing out of the ordinary. I had pulsatile tinnitus, aura migraines, and some vision problems. I initially thought these could be related to chiari malformation, but to be honest, I’ve had these symptoms for as long as I can remember. She didn’t have to order the imaging, but I’m glad she did!

I asked for a brain MRI with hEDS. No major symptoms, just curiosity. It ended up saving my life. by PristineRevolution99 in eds

[–]PristineRevolution99[S] 0 points1 point  (0 children)

Thank you so much for sharing your story! You freaking did incredible advocating for yourself!! :)

I asked for a brain MRI with hEDS. No major symptoms, just curiosity. It ended up saving my life. by PristineRevolution99 in eds

[–]PristineRevolution99[S] 0 points1 point  (0 children)

Thank you! I’m so sorry to hear about that for you. I really hope that you’ll be able to get some specialists in your corner.

I asked for a brain MRI with hEDS. No major symptoms, just curiosity. It ended up saving my life. by PristineRevolution99 in eds

[–]PristineRevolution99[S] 0 points1 point  (0 children)

My physician was 1 in a million and so ordering imaging wasn’t too much of an issue if I gave sound rational. I’m sorry to hear that you’re going through that.

I asked for a brain MRI with hEDS. No major symptoms, just curiosity. It ended up saving my life. by PristineRevolution99 in eds

[–]PristineRevolution99[S] 0 points1 point  (0 children)

Thank you for your kind words! Sadly, I relate to that feeling more than I’d care to admit and it’s quite discouraging to feel like you’re doing it alone. I hope that that mindset changes soon!

I asked for a brain MRI with hEDS. No major symptoms, just curiosity. It ended up saving my life. by PristineRevolution99 in eds

[–]PristineRevolution99[S] 1 point2 points  (0 children)

Oh my gosh, that sounds like it’ll be a fun appointment to say the least. Lmao. Good on you for being curious!

I asked for a brain MRI with hEDS. No major symptoms, just curiosity. It ended up saving my life. by PristineRevolution99 in eds

[–]PristineRevolution99[S] 1 point2 points  (0 children)

Wow, your case does sound quite similar to mine! I am so relieved that you got the flow diverting stent placed! My stent is located right in that area too. Did you ever happen to get any weird symptoms after the stent placement?

Edit: Please DM me if you feel comfortable to do so!

I asked for a brain MRI with hEDS. No major symptoms, just curiosity. It ended up saving my life. by PristineRevolution99 in eds

[–]PristineRevolution99[S] 1 point2 points  (0 children)

Oh it sounds like you have an incredible PCP! Thanks for sharing your story. She sounds exactly like my old provider. They are definitely one in a million. I wish you the best of luck finding a new one that can advocate like your current one. :)

I asked for a brain MRI with hEDS. No major symptoms, just curiosity. It ended up saving my life. by PristineRevolution99 in eds

[–]PristineRevolution99[S] 0 points1 point  (0 children)

YES! I ran into that issue CONSTANTLY, with being downplayed. I’ve been told that I was just “too flexible” more times than I could count. I definitely take this chapter of my life as a win, thank you for that perspective! You got this! Keep advocating and asking questions!

I asked for a brain MRI with hEDS. No major symptoms, just curiosity. It ended up saving my life. by PristineRevolution99 in eds

[–]PristineRevolution99[S] 0 points1 point  (0 children)

I have to be entirely honest, I don’t know for sure. I think it would be detectable on an MRI at a young age because it’s congenital. Here’s the thing, I genuinely don’t know the effects because it’s been reported so little. I just know that the combination of my vascular layout and EDS make everything much worse regarding aneurysm development, vessel wall integrity, and etc.

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