Here it is - the product of surgery number one! (TW: medical waste)

I still do not have the energy/capacity to write out a full update, and for that I apologize. This post will not have much substance as a result. However, I wanted to share this image I just pulled from MyChart because… well, it’s obvious, isn’t it? Goodbye “rod of rebar” number one! I cannot wait for your friend to eventually join you (from side: left).

What a DOOZY. No wonder my life had been sucked dry, right out of me, right?

Edit: I did want to update briefly to let y’all know that I was discharged from the hospital, today, around 1230pm. So, I was at the hospital for just over 24 hours (arrival time was 11am, yesterday). However, I was not taken back to pre-op until 1230pm, yesterday - making me a patient for essentially precisely 24 hours. The weather in NC (RDU is where we are for all of this, but it’s the entire state) is BAD, today, and the docs/nurses and my mom and I wanted to get me out of there and safely to the hotel before it all got worse. We have had tornado warnings, flash flood warnings and so on this afternoon and evening, so I am very glad to be safely where I am. I am in a lot of pain but I am okay. I will post a full update and talk about the surgery/hospital stay/Dr. Hackman later this week!

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Wow! So happy for you ))).

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WOW! @slekeille!! That’s a WHOPPER!! Indeed it explains why you were so miserable & I’m sorry there’s another one like it waiting it’s turn for excision but am thankful you have found an amazing surgeon to deal with it. :hugs:

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Thank you!

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Isn’t it massive? I literally cannot believe it. I knew, in theory, it was that big based on imaging and palpation - but I obviously wasn’t able to fully picture and appreciate it in its full form and glory. What a NIGHTMARE. Lol. I am so glad it’s out. It’s intimidating to know it has a twin snuggled up in the other side, and that I have to go through this all again, though…

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It’s definitely better out than in! A beastie…take care of yourself & glad you’re safely at the hotel :hugs:

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Nothing I can disagree with there, that’s for sure. I am really looking forward to having the energy to tell my surgical story and share my operative notes etc., but that day is not today. Lol. Thanks for your unwavering support, this past year. It has meant so much. I am not sure where I’d be without this forum, but am almost certain it would not include being post-op. :slight_smile:

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Congratulations on being on the road to getting the real you back! That is a huge SP, you poor thing. I hope you’re doing alright today and that the NC weather has improved a bit. I lived there for a few years and this California girl does not miss the scary weather. I never did toughen up when it came to the weather and would dive into an interior bathroom with my first born in tow. Glad you’re safe and sound. Have a good rest.
:heart:Heather

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enormous!!! You will feel SO much better as you heal!

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We are very glad you found us too! I hope the weather is settling down now, looked awful from what I saw on the news!
No rush to share your story, just get yourself stronger , although looking forward to hearing it! :hugs: :pray:

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The weather went back to sunny, safe and serene 12 hours later!

I am post-op day 3 and that is statistically the worst, pain wise. It hit me like a train when i woke up (way too late, past my alarms and hours after two missed doses of pain meds - oops). Because I am in palliative care, my normal pain med dose I take throughout each day was simply upped, so this routine should not be hard for me. And yet, I’ve done this two mornings in a row because I have slept more the past two days than I have in a year (not exaggerating - I average about 3 hours of sleep per night and I slept from 1130 to 8am on Tues night and about 4am to noon last night into today).

I am resting. I am recovering. Tomorrow will be better!

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Glad you got some sleep !! That was surely necessary and hope more is to come ))).

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You obviously needed the sleep! Hope you can get the routine sorted soon :hugs:

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Hi @slekeille ~ congrats on getting through surgery!

I have fast approaching surgery, considering options for post-op care… saw that you mentioned palliative care. Wondering…

  • Are you still in the hospital with the palliative care, or does someone come to your home?
  • How did you go about getting this set up?

Hope you continue to heal well :slight_smile:

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Hey! I’m sorry for any confusion. Palliative care is not something that you would qualify to get set up with simply because you are post-op. You will have post-op pain management options to discuss with your surgeon.

Palliative care is a long-term treatment option for those with a life limiting condition (meaning, it likely shortens their life expectancy, and impacts their activities of daily living on an ongoing basis). I am a palliative care patient because of my primary diagnosis (vEDS), not because of eagles syndrome.

To answer your questions, they come to my home every month and they manage a lot of my chronic symptoms, social needs, and so on. If I somehow accidentally implied that this would be an option for others without qualifying conditions outside of eagles syndrome, I genuinely apologize. If you have another qualifying condition, please ask your PCP to refer you to palliative care. This would be something that you did outside of your surgery.

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Thanks for the response, that makes sense!

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I just saw this, and WOW. I’m so happy for you with that being out of there. Looking forward to hearing about your healing and your journey.

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@slekeille how are you doing? Are you back home yet? :hugs: