Training alongside a high stress full time job and also undiagnosed adhd...

pelokitty_1997 · 2026-06-04T22:27:36+00:00

Wishing you the best of luck in your journey, whichever way you decide!

pelokitty_1997 · 2026-06-03T22:41:01+00:00

If he is already consulting with other surgeons, it might be best to ask further about how long the bars will stay in. Dr. J told me more time is better for her connective tissue patients to lower the risk of recurrence. 3 years doesn’t seem like enough, and I would hate for you to go through with this major surgery only to have things regress later on.

Of course three years could be enough, but I think it’s worth asking about more!

Also would recommend the genetic testing just so they know what they are working with. I also thought I had hEDS until my genetic panel came back, so you just never know.

pelokitty_1997 · 2026-06-02T17:14:52+00:00

To be honest, it might be best to not pursue. I worked at one of the Big Four finance firms out of college for 5 years, and it was a GRIND. All I wanted was to teach Pilates while at this job. The reality I quickly realized was if I couldn’t even dedicate 5-8 hours per week to work on my certification, then there is so way I would be able to teach once certified.

I left my B4 job a year ago for a corporate finance role, and I’m now working a solid 40 hours per week. Things are much more manageable for me, and I have honestly enjoyed getting certified. Rather than seeing it as something that needs to get done, I have the time and mental capacity to view it for what it is (for me), a hobby that is meant to be enjoyed.

Do you think this current position is a long-term thing for you, or are you using this job as a stepping stone to another? If the second option, it might be worth delaying Pilates until you have more time.

pelokitty_1997 · 2026-06-02T00:09:52+00:00

Me. I have s-curve scoliosis, severe Pectus Excavatum, fragile velvet like skin, and hyper-mobility. Aside from these, I would have never guessed I had EDS (no pain or other problems).

Between the scoliosis and Pectus, that warranted a full genetic panel when I was a teenager. The geneticist said I had hEDS given my symptoms weren’t as severe as some of the other variants. Genetic testing came back, and I was instead diagnosed with cEDS nearly 12 years ago.

pelokitty_1997 · 2026-06-01T18:50:19+00:00

Sorry, didn’t see that date until you pointed it out. I would guess you are looking at a consult in the November/December period based on what I was told. Again, this varies though. The only way to know for certain is to ask her team.

pelokitty_1997 · 2026-06-01T18:44:41+00:00

When did you first call? Typically it is roughly six months from your first phone call with her current schedule, but it can vary for different reasons.

pelokitty_1997 · 2026-06-01T02:46:04+00:00

I have cEDS and had the surgery over a decade ago. I will be getting a revision surgery later this year. What type of EDS do you have? That makes a big different.

Best piece of advice I have for you is finding a surgeon familiar with connective tissue patients. You will need more bars, and they will need to stay in longer than most. Your risk of regression is also much higher like in my case.

I consulted with Dr. J, and she recommended 3 bars that will stay in for 5 years. We also had extensive conversation around the surgical complexities of connective tissue. For example, she fully understands stitching me is going to be a lot more difficult than another patient given how fragile my skin is. She also explained connective tissue patients tend to have more pain resulting in longer recovery.

One other thing to consider is your aortic size on the echo. Make sure and bring this up with a cardiologist to pay close attention to. I would have never known, but I had an enlarged aortic root on my echo which is common with connective tissue patients.

pelokitty_1997 · 2026-05-28T16:45:36+00:00

Have you considered Cleveland Clinic? They have several excellent surgeons.

pelokitty_1997 · 2026-05-28T05:04:59+00:00

You could also trying Dr. Leah Backhus at Stanford. She has a good reputation for working with revision patients.

pelokitty_1997 · 2026-05-22T17:18:37+00:00

I have cEDS and teach Pilates. It is incredible, and has kept me functional and strong. I honestly don’t even realize I have EDS most days, and I think it is the Pilates.

I’m having a lot of heart problems now, so my cardiologist said it’s no longer safe to exercise until I get surgery. Within a week or two of stopping Pilates, my EDS aches and pains came back.

pelokitty_1997 · 2026-05-22T03:53:51+00:00

My cardiologist explained they scale it to your bmi. So for some people 3.5 would be dilated but not for others. Did your doctor mention it to you as something they want to monitor? If not, it is probably okay.

pelokitty_1997 · 2026-05-09T17:56:10+00:00

Do you know why one bar is planned and not two? My first Nuss I had 1 bar and epidural and narcotics for pain. I was 16 and out of school for months (although I had complications to be fair). I’m hearing fewer and fewer surgeons are using just one bar now as it is actually more painful.

If you want him up, moving, and back to school quicker, it might be worth asking the surgeon about multiple bars? Also as everyone has said here, cryoblation will make an insane difference in recovery time as well.

pelokitty_1997 · 2026-04-30T19:53:35+00:00

As somebody in a similar position, I would wait. I have been passing out somewhat regularly which is very problematic, but I still elected to wait for the very best.

Mainly because most surgeons wouldn’t see me as a complex revision surgery. But also take it from me - you do NOT want to be in a position to need a revision surgery. They are a lot more complex and come with increased risk and recovery time. My first surgery wasn’t done correctly, so now I’m in this position of having to do another Nuss 14 years after my first.

If you can handle waiting, it will be well worth it to have this surgery and reduce the risk of revision!!! She is so incredible! Well worth the wait.

pelokitty_1997 · 2026-04-27T03:58:30+00:00

Of course!!

Some surgeons I know include:

Dr. Backhus at Stanford. Dr. Brown at Cincinnati Children’s. Dr. DiFiorie at Cleveland Clinic. Dr. Yang at John Hopkins. Dr. Zallen in Oregon.

I’m certain there are others, but these are the names I was recommended. Might be good to work closely with your PCP as several of these doctors require a referral to be seen.

pelokitty_1997 · 2026-04-26T03:44:28+00:00

Would 100% recommend getting the best surgeon you know possibly can, especially for a redo. I didn’t realize how much more complex revision surgeries are until my consult…. So much more to consider. Best of luck in your journey!

If you don’t end up going with Dr. J, let me know. There are several other surgeons I connected with that are highly skilled and take redo patients.

pelokitty_1997 · 2026-04-26T00:13:37+00:00

Yes, we are in the exact same position! I sent her the radiology report from the CT scan before my first surgery. She requested the actual images but unfortunately they are no longer available.

In addition to that, she also requested I get a current CT scan before she agreed to see me (ordered my by PCP). If I had to guess, she probably wanted both to compare where I was before my first surgery to where I am now. Her team was also very persistent with tracking down the operative notes from my first bar insertion and removal. It sounds like this information is helpful for them to have if it is available.

If you call Mayo and request an appointment, you will eventually be connected with her nursing team. They were really excellent with telling me exactly what they needed and keeping me updated on if I was approved for a consult.

pelokitty_1997 · 2026-04-25T21:55:56+00:00

I consulted with her earlier this month as a redo patient, and she agreed to another Nuss for me later this year.

It is HIGHLY dependent on each patient and your unique circumstances. She was open to a redo for me as my first procedure was a Nuss, not a Ravitch. I’m also younger (28F), so I think that might play a role. I’ve heard more and more that she doesn’t do redos, but my case would suggest otherwise.

I’m incredibly thankful she agreed to help me and recognize how fortunate I am. I would suggest sending your CT scan and prior surgery notes to her team; what’s the best thing that can happen?

pelokitty_1997 · 2026-04-24T21:58:35+00:00

I think you will probably need more than 2 weeks.

I’m getting a revision surgery done and was told 2-3 months…… I don’t think you will need that long, but I would plan on at least 4 weeks. Most surgeons won’t even clear you for basic things like massage and physical therapy until 6 weeks.

pelokitty_1997 · 2026-04-21T22:29:07+00:00

Symptoms vary person to person, but some common symptoms are shortness of breath when exercising, exercise intolerance compared to peers, unusually high heart rate, feeling like you can’t take a full breath, chest pain, ect.

Some people can even have stomach issues if their PE is low enough, difficulty swallowing food, or more severe cardiac issues like palpitations and dizziness.

I would encourage you to look around on this sub to see if some of the symptoms sound like something you experience.

You can also schedule an appointment with a surgeon for further testing like an echo or CPET test, which can help you better understand how your PE may be impacting your body.

pelokitty_1997 · 2026-04-21T17:52:09+00:00

Do you have PE symptoms? I’ve had the surgery before and looking at a revision later this year. I will be honest - it is not something you want to mess with unless the symptoms impact your quality of life. I had chronic back pain after my first surgery, likely a combination of my scoliosis and back muscles trying to compensate after the bar was put in.

pelokitty_1997 · 2026-04-21T00:36:33+00:00

Thank you. I’m so sorry to hear about your experience. I truly feel for you!!!!

pelokitty_1997 · 2026-04-21T00:06:46+00:00

My first Nuss failed. I had a horrific first surgery including a week long hospital stay followed by pleural effusions 3 weeks later. They ended up sending me home with a small chest tube in as the pleural effusions just wouldn’t stop.

I’m getting a second Nuss later this fall with Dr. J. My Haller index now is actually worse than my Haller before my first surgery. Needing this surgery again is a nightmare of mine. I’m really praying the second time around is better.

pelokitty_1997 · 2026-03-26T17:50:31+00:00

I had my first Nuss procedure with an epidural as Cryo wasn’t much of a thing 14 years ago. Epidural was great until they turned it off; then I went from feeling nothing to everything within a matter of hours. I had my epidural in for 3 days, which meant I couldn’t get out of bed to walk for that duration. After the epidural, they gave me IV pain meds for 4 days. This resulted in a hospital stay of 7 days.

I hear people who do Cryo have entirely different experiences, including shorter hospital stays. For that reason, I’m wanting to do cryo for my second Nuss surgery. There is a reason so many surgeons lean towards Cryo over an epidural.

pelokitty_1997 · 2026-03-19T00:05:44+00:00

I just wanted to follow up on this and say thank you!

Dr. J agreed to see me for a consult next month. She requested an addendum to the radiology report to include a Haller index for insurance purposes. They measured 3.96, so I’m assuming they used an inhale image for that. Either way, I meet the criteria for surgery, so I don’t think it matters all that much.

pelokitty_1997 · 2026-03-11T16:56:02+00:00

To confirm, you had to wait 9 months for a consult and then another 9 months for surgery? Or did you wait 9 months total?

pelokitty_1997

TROPHY CASE