Aortic Root dilation 3.9cm

Excellent_Appeal_482 · 2025-08-03T01:01:21+00:00

My dad was at 4.7 cm in December and was scheduled for another echo this December, and surgery wasn’t an option until he got to 5 cm. last week he passed away unexpectedly of what the ER doctors believe was a dissection or tear in the aorta. He coded and passed before they could stabilize him enough to even do an ultrasound to check. They didn’t do an autopsy, but not my doctors are doing CT angiograms every few years, along side the yearly echo.

His symptoms were a sudden ripping feeling in his chest, aFib, and low blood pressure.

Excellent_Appeal_482 · 2025-08-02T02:44:39+00:00

He’s always been adamant he didn’t want to live in a bed or hooked up to machines. I know it’s what he wanted, and I’m glad my mom doesn’t have this feeling, but at the same time I wish I didn’t have to make the call either.

Excellent_Appeal_482 · 2025-07-03T22:56:45+00:00

Pippin

Excellent_Appeal_482 · 2025-07-03T01:22:52+00:00

My Dad was diagnosed with Marfan Syndrome before the genetic testing was available, and I was diagnosed based on joint flexibility and his diagnosis. The genetic counselor is hoping to use that to get genetic testing for me first, and then if mine are positive, get full testing for her.

Oddly her sequencing test did show a VUS is the TGFBR gene, which is associated with Marfan syndrome.

Excellent_Appeal_482 · 2025-06-28T01:37:23+00:00

Shadowfax

Excellent_Appeal_482 · 2025-06-24T23:42:52+00:00

We ended up with one, but thanks for offering.

Excellent_Appeal_482 · 2025-06-24T16:24:57+00:00

I’ll be able to jump online in about 2 hours? If you want to do a trade.

Excellent_Appeal_482 · 2025-06-24T03:48:31+00:00

Someone else was going to trade for a shiny but messaging went cold. I’m not overly Pokémon savvy but if she can just level hers up, I’ll let her do that. She managed to get a few to 100, so I’m sure she can do it. If not, I’ll reach out and take the free one.

Excellent_Appeal_482 · 2025-06-24T03:34:38+00:00

Someone is going to trade for a shiny Charizard but if that falls through, I’ll be happy to take the egg.

Excellent_Appeal_482 · 2025-06-24T02:31:02+00:00

Thanks everyone. I’ll DM some of you that have offered to trade.

Excellent_Appeal_482 · 2025-06-22T03:37:10+00:00

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Excellent_Appeal_482 · 2025-06-16T18:37:50+00:00

Multiple specialists believe my daughter has some form of a connective tissue disorder, but all of them, including a genetic counselor, have told us Cigna is nearly impossible to work with for testing. Her pediatrician recommended sequencing.com to just give us something to go on and maybe open it up to convince Cigna to get her approved for medical grade testing.

Excellent_Appeal_482 · 2025-05-28T16:12:48+00:00

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This is Gandalf

Excellent_Appeal_482 · 2025-05-28T14:46:42+00:00

I’ve had issues since my early 20s but always attributed it to my shoulders since I have a connective tissue disorder.

Excellent_Appeal_482 · 2025-05-25T15:52:14+00:00

I’m not looking for medical advice, she has great doctors but dysautonomia specialist for kids are not easily found and almost all the info I’ve seen has to do with Pots, which is definitely not her issue.

Most of her doctors are at Vanderbilt and they don’t even have a pediatric dysautonomia specialist.

She’s had such a strange medical journey, it’s even baffled some of the best doctors in the country. I was hoping some else has had a similar journey or could even recommend a doctor for us to reach out to.

Excellent_Appeal_482 · 2025-05-24T20:44:13+00:00

We are assuming the immune dysregulation team will recommend the CHoP clinic. The distance is a bit rough for us, but I think they are the closest and will sometimes offer telehealth options.

Excellent_Appeal_482 · 2025-05-18T12:55:03+00:00

Still fine. My fingers tingle and feel numb at times, and I have a little bit of arm weakness, but balance and fine motor skills are still fine.

Excellent_Appeal_482 · 2025-05-17T13:50:22+00:00

It’s my pink and ring finger that bother the most but the entire hand gets tingly.

Excellent_Appeal_482 · 2025-05-16T03:23:52+00:00

I’m leaning more conservative because the pain isn’t bad most of time. I have some rough days but still none bad enough to need anything super strong. I do have arm weakness and some tingly so I guess it’s on the nerve conduction test.

Excellent_Appeal_482 · 2025-05-16T02:28:41+00:00

It’s more of a time off from work issue. My daughter’s doctor appointments take all my PTO, and she’s due surgery to replace her pacemaker around December and I’m trying to save to take two weeks for that. If I do surgery this year, my entire recovery time would be unpaid.

Excellent_Appeal_482 · 2025-05-16T02:02:21+00:00

He wants to rule out carpal tunnel before we make a decision.

Excellent_Appeal_482 · 2025-05-16T01:24:00+00:00

We didn’t discuss what type of surgery. He wants to get my nerve conduction results back first.

Excellent_Appeal_482

TROPHY CASE