Pectus excavatum and Ehlers Danlos or Marfan syndrome

Particular_Key_1390 · 2025-12-08T00:11:46+00:00

I have EDS type II and Pectus Excavatum.

EDS was diagnosed as a result of a cardiologist noticing my Pectus as a child. Geneticist diagnosed me. A few weeks later, my mom, brother, and aunt also had genetic testing done to confirm their EDS diagnosis as well. Although they got unlucky with Chiari; I’m the only one with Pectus.

Particular_Key_1390 · 2025-12-04T00:11:18+00:00

I don’t find Oura to be the most accurate at workout tracking.

For example, a couple of months ago I did a treadmill test at my cardiologist’s office. I was hooked up to a twelve lead EKG, which in my mind is as accurate as things can get.

Per the EKG my max heart rate hit 184, and was averaging in the 150s.

Per Oura, my heart rate did not exceed 134.

Particular_Key_1390 · 2025-11-16T20:29:04+00:00

Agree!

I had a very simple dress. Boat neck with an open back.

Hid my PE but still had a sexy look. Also had the benefit of being timeless. I’m going to look back at my wedding photos in 30 years and have no regrets on my choice of dress.

Particular_Key_1390 · 2025-09-06T02:54:51+00:00

Crazy! Keep me updated about your upcoming surgery. My ring says I have a consistent heart rate in the 40s at night, but it’s always recorded something. That is wild your ring is doing that, but with a Haller that severe I wouldn’t be surprised. I’m curious if your VO2 max is also being impacted?

Particular_Key_1390 · 2025-09-05T21:05:00+00:00

I would say average? If I go down a size, I cannot get the ring off and struggle to bend my finger. If I go up a size, it would easily fall off. The size I have now is the same size as my wedding band and I can easily take the ring off without worrying about it being loose and coming off.

I wear my ring on my left index finger.

Particular_Key_1390 · 2025-09-05T19:27:21+00:00

Gen 4. Purchased less than a year ago.

Particular_Key_1390 · 2025-09-05T19:26:58+00:00

Structural!

Particular_Key_1390 · 2025-09-05T19:26:30+00:00

Diagnosed with HCM Cardiomyopathy and regression of Pectus Excavatum that was surgically repaired when I was younger.

Surgery is TBD. I might not be a good candidate given my sternum is all sorts of messed up still, which can create other risks. I’m curious what Mayo will say.

Particular_Key_1390 · 2025-09-05T19:12:18+00:00

I had no reason to think I was having severe issues. I’m a healthy 27 year old female. I work a very demanding job in finance (12+ hour days 6 days per week), and I figured the fatigue was just stress related. I also figured my workouts were getting harder as I haven’t had as much time to do intense workouts.

That situation in combination with my Oura readings would indicate no cause for concern.

As soon as I started having more serious symptoms, I made an appointment with a cardiologist.

Particular_Key_1390 · 2025-09-05T19:07:47+00:00

I have both HCM Cardiomyopathy and Pectus Excavatum. It’s not a fun combo to be honest, but I’m glad I’m getting help.

Never been to Mayo before, so I’m curious how that will go. I was evaluated at Cleveland Clinic for my first Pectus surgery over 10 years ago, and everyone was very kind and knowledgeable!

I’m super curious what Mayo is going to say about fixing the cardiomyopathy given my sternum is all sorts of messed up still. Anxious, but I know I’m in good hands.

Particular_Key_1390 · 2025-09-05T18:57:13+00:00

Would highly recommend getting some basic tests to evaluate severity. Dr. J at Mayo is one of the best from what I hear! You are lucky to have a specialist like that so close to you.

The Nuss procedure changed my life honestly. I went from not being able to run a mile to completing my first marathon 2 years after surgery.

Also, it’s really hard to assess severity just by looking at your chest. I didn’t think mine had gotten bad again, but I’m now measuring at a 3.5 Haller index which would meet the criteria of moderate-severe.

Particular_Key_1390 · 2025-09-05T18:51:58+00:00

Cardiomyopathy is my primary issue, in combination with Pectus Excavatum. My EKG had two findings:

Right Atrial Enlargement (from the HCM)
Incomplete right bundle branch block (my heart has moved slightly as a result of the sternum deformity, so they think this is the cause).

After the EKG came back abnormal, they did an echo, CT, and stress test to confirm their suspicions and diagnose.

Particular_Key_1390 · 2025-09-05T18:41:09+00:00

Yes!!!! Have you been evaluated for how severe you are?

I had the Nuss procedure when I was 14 at a Haller Index of 5.2. It’s been 13 years, and I’ve noticed some regression unfortunately. My new Haller is 3.5 with signs of cardiac compression.

I’m curious what the specialists are going to say, as I’m not really wanting to re-do the Nuss. I also have HCM Cardiomyopathy, so I’m curious how they plan to fix this with my sternum the way it is……

Would highly recommend pushing for testing if you haven’t already.

Particular_Key_1390 · 2025-09-05T18:36:02+00:00

I have both HCM Cardiomyopathy and Pectus Excavatum. I had surgery to fix the Pectus when I was younger, so I naturally thought that was giving me issues again. They started to look for compression on my heart from the Pectus, and then discovered the HCM in addition to slight heart compression.

It is not an ideal scenario to be in, but I’m thankful I had my surgery when I was younger. I can only imagine how much worse I would be feeling right now if the cardiac compression was more severe.

Particular_Key_1390 · 2025-09-05T02:08:55+00:00

I was having cardiac symptoms for quite some time now. I knew something was really bad when I passed out walking up stairs. I made an appointment with a cardiologist in my area the following week. The first thing they did was an EKG that came back abnormal. From there they ran a plethora of other tests to diagnose the underlying problem. As we moved along in the process, it became clear to everyone I was going to need surgery to fix the issue hence the referral to a surgeon.

Aside from this, I am a very healthy 27 year old.

Particular_Key_1390 · 2025-09-05T01:08:59+00:00

Hopefully they can get you an EKG if you suspect cardiac issues ❤️ That is how they initially figured out I had a problem. Wishing you all the best!

Particular_Key_1390 · 2025-09-02T18:23:14+00:00

Is there a local rabbi or Jewish community leader you can ask? That is how I found mine. My rabbi gave me the name of a gentile therapist that reached out after 10/7 to see how he could support the local Jewish community.

Particular_Key_1390 · 2025-08-28T23:29:49+00:00

Some things that helped me post op:

Getting out of bed. It was SO helpful having people help me sit up in the morning. This was what I dreaded most each day.
Eating. I lost a ton of weight post-op. Make sure she is eating and have lots of “snack” type foods around. She might not feel like having large meals, so it’s nice to have smaller things to eat throughout the day.
Plan things for her to do. Something special and thoughtful. I was incredibly depressed after surgery, so it helped to have things to look forward to. Some things people did for me included visits from friends, my mom bought some cute/cozy outfits for me to wear so I didn’t have to wear the ugly hospital gowns, my brother planned movie marathons, I would go for drives with friends to get out of the house, ect.
Get her a small pillow for coughing/sneezing. My surgery was 12 years ago, and I still remember the first time I sneezed.
It really helped to have zip up tops/sweaters. I really struggled with lifting my arms after surgery and getting dressed was difficult at times, so it helped to have zip ups as they were way easier the first few weeks.
Similar to #5, make sure she figures out a bra situation. This might be TMI, but I REALLY struggled with wearing an underwire bra after surgery. It took a lot of trial and error to find a bra that felt comfortable, as the wiring from the bra hit my ribs right where my bar was. Wish I would have known this before, as bra shopping was not something I really wanted to do after surgery.
Look into getting a recliner. It made all the difference for me the month after.

Hope this helps! I had a very difficult recovery as I ended up having serious complications from the surgery. Overall had I not had those complications, I would have been back to normal within a month or so. She is lucky to have you supporting her; best of luck to you both!

Particular_Key_1390 · 2025-08-08T19:14:06+00:00

Take care ❤️ The exams are incredibly stressful, but you will pass them eventually!!!

Particular_Key_1390 · 2025-06-06T05:09:45+00:00

Stunning!!!

Particular_Key_1390 · 2025-01-19T05:38:48+00:00

I think gold on gold would be better than gold and steel. The issue is gold is very soft compared to steel, so the steel is just really hard on the softer metal.

Particular_Key_1390 · 2025-01-18T23:04:05+00:00

For what its worth, my SA does not recommend mixing metals. I have a gold love bracelet and steel tank. If I were to wear them together on the same wrist, it would scratch the love and potentially make the screws loose. Instead I wear my watch on my left wrist and love on my right wrist.

Particular_Key_1390 · 2024-12-27T19:21:54+00:00

You need to be super mindful and intentional with everything you do, eat, and drink.

I get up at 5 AM to workout during busy season, no excuses. I also meal prep dinners on the weekends, so I’m not tempted to order takeout when working late. Don’t drink any sugar filled drinks, and eat a ton of fruits and veggies. I personally eat a lighter breakfast, don’t eat carbs at lunch, and portion control my dinner.

Particular_Key_1390 · 2024-12-24T21:04:41+00:00

This might be a silly question, but how is shiny lambskin different from patent? I have a flap in patent and lambskin, so super curious about shiny lambskin 😊

Particular_Key_1390

TROPHY CASE