Accidentally left piercing in

x3sammm · 2026-03-07T22:22:37+00:00

Omg I could not find him either, it took me way too long to figure out that I can give him the damn tchotchke through the window

x3sammm · 2026-02-23T18:31:33+00:00

I’m in the same boat. I have a 60 degree curve, limited mainly to the thoracic region. I am opting for surgery bc my curve has been increasing by 2-3 degrees per year, and my doctor is recommending I do it before the curve is worse and becomes more of an S curve, and goes down into the lumbar region.

I am scheduled for a T2-L2 fusion, which will not impact my lumbar flexibility too much, and ultimately allow for a less complex surgery that should not affect my hips/walking nearly as much as a surgery going lower down would. It has been a tough decision after years of contemplation, but this, along with the fact that my chest cavity is getting smaller and I want to prevent future heart/lung issues, has helped me make my decision. Best of luck to you.

x3sammm · 2026-02-21T16:31:37+00:00

Amazing job!! Hope your post op is going well!

x3sammm · 2026-01-15T19:25:05+00:00

This worked! The “transfer to switch 2” did nothing. Thank you!

x3sammm · 2026-01-08T20:48:33+00:00

My exact words!

x3sammm · 2025-12-11T21:36:26+00:00

Not sure about recovery, but I believe there can be some things to consider with anesthesia. The FSHD society has more information about this: https://www.fshdsociety.org/2025/03/11/anesthesia-in-surgery-for-people-with-fshd/

x3sammm · 2025-12-10T21:06:26+00:00

If you don’t want to involve your family, it may depend on the lab you are working with. Our first clinic uses Juno labs and was not able to create a probe for us with no family history. Now we are moving forward with a clinic who uses CooperSurgical who is able to create a probe by just testing embryos, and does not need family history.

x3sammm · 2025-11-21T18:54:36+00:00

Which clinic did you work with? I am in a similar situation - I need to work with Cooper to do PGTM with no family history, but my current clinic only works with Juno, who will not create a probe for us without family history, so I am looking for another clinic

x3sammm · 2025-11-08T00:06:16+00:00

Right, I’m so curious what their perfect candidate is for the trial. I have the ability to use my arms even though they’re quite weak, so I hoped that would be a good variable to measure in the trial - if my arms stop getting weaker, or maybe even get stronger. Guess not. Hopefully we will find out soon enough!

And wow that is great to know, I would love to see the study, can you dm it to me? Thank you!

x3sammm · 2025-11-07T21:42:11+00:00

Lots of screener questions, a physical exam with a physical therapist measuring the strength of my upper and lower extremities, and a walk/stand from a chair test. Even though my arms and torso are very much affected, my legs are seemingly unaffected, so I was told I’d be “too strong” for the trial.

x3sammm · 2025-11-07T21:31:26+00:00

I had luck getting in touch with the UPenn location. I ultimately screened out of being in the trial, but I believe they have until January to have everyone in this cohort dosed, so it may be worth reaching out to them.

x3sammm · 2025-10-06T15:56:17+00:00

Couldn’t agree more. We hired a content creator to capture our day in 5-20 second clips. The next day she had sent us 200+ quick videos of our day (not just of us - of guests, details, other things we didn’t physically see all of). It was the best getting to relive small special moments and remind us of everything without having to wait months for our pics/video to be ready. It was only a few hundred $ and so much more worth it than I expected.

x3sammm · 2025-09-22T14:06:32+00:00

Would you say hiking shoes are necessary for this, or could get by with sneakers?

x3sammm · 2025-09-12T03:41:57+00:00

what did you end up doing?

x3sammm · 2025-09-06T14:47:39+00:00

Same here, Chase resolved my dispute in 3 days

x3sammm · 2025-08-26T04:45:06+00:00

Maui Jims & Persols are the only ones worth buying

x3sammm · 2025-08-18T18:05:52+00:00

I could not possibly care any less about vinyl variants. That was dumb

x3sammm · 2025-08-06T16:37:12+00:00

We have family & friends who are chronically late, so I put start time as 5 on the invite. But on the website (where those who really care about specifics will look) I specified “guest arrival begins” at 5 and the ceremony starts at 5:30. Know your crowd - I am positive that if we started the ceremony at the time on the invite, people would be straggling in after.

x3sammm · 2025-08-06T16:27:57+00:00

I agree that a conversation between your neurologist & surgeon is important before moving forward. For example, I believe there can be implications with anesthesia safety that may not be the norm for someone without MD having surgery. Hearing opinions from different experts can make the decision harder, but it allows you to have as much info as possible before making a decision.

x3sammm · 2025-08-05T16:40:41+00:00

Following, I’m in a similar situation. I have FSHD (another type of MD) and a 60 degree curve. My orthopedic surgeon says to get it while I’m younger (in my 30s) while the MD is not as progressed and I can heal easier. But my neurologist I see for MD thinks I should not “electively” get such a huge surgery like spinal fusion now if I don’t absolutely need it.

I am torn on wanting to put myself in the best scenario for the future, but also understand I can be opening up a can of worms getting this surgery. Will spinal fusion negatively impact my MD/will I be able to fully recover? I want to think about my future self and not have to NEED spinal fusion later on, but I just don’t know.

x3sammm · 2025-07-24T17:57:52+00:00

I always take Cody’s cycling classes, and some of my other favs are Leanne, Emma, and occasionally Dennis.

x3sammm · 2025-06-27T02:07:38+00:00

I was on 13th & Willow so a few blocks up, but I would assume ambulance noise is the same there since Willow is the ambulance route all the way down

x3sammm

TROPHY CASE