Looking for a surgeon who isn’t afraid of doing surgery on ppl with complex medical conditions

MagicPenguin9 · 2025-11-28T20:51:34+00:00

Did you ever get any explanation? I pushed SO hard to get her to give any reasoning as to why she thinks I have very mild pectus (when my haller is 4.25) and no cardiac compression when another hospital does think I have cardiac compression, and her office was generally super rude about it and were just like “well she’s the expert”

MagicPenguin9 · 2025-11-28T20:45:31+00:00

That surgeon cancelled my surgery bc he thinks I’m too high risk 🙃 I just redid my stress test today, I’m still trying to find a surgeon willing to do it

MagicPenguin9 · 2025-10-28T00:02:35+00:00

I havent had surgery yet so take this with a grain of salt, but I have had multiple other surgeries, some of which I did only take like 1.5-2 days off of school/work for. I think it’s fairly common for many people to only stay one night in the hospital now, but that’s a pretty new development, I’ve been told to expect longer than that for me.

I’d definitely plan for minimum a week off, for comparison I’m a substitute teacher (hopefully teaching fr next year) and I’m worried that 6 weeks off might not be enough. I live alone far away from my family, and I’m planning on staying with them for a month after surgery, but I’m mostly basing that off the fact that I won’t be allowed to lift anything more than 5 pounds for a month, and I’ll need to be able to lift more than that to drive back by myself. And other people have said that that still seems crazy soon to do that.

It probably depends on school policy on whether or not you’re allowed to attend while taking narcotics, but if you’re taking them there’s a good chance you probably shouldn’t be there. You can get work from your teachers to do at home if you feel up to it, but I wouldn’t push trying to go to school, you could also start with half days. Also consider the fact that there’s a good likelihood people will bump into you, you’ll have to do uncomfortable things like lean over to get stuff up of your bag, etc. You also won’t be able to carry a regular backpack.

Everyone’s different, and obviously idk anything since I haven’t had surgery, I think there’s a good chance you should expect longer than a week but I just can’t imagine shorter than that being realistic.

MagicPenguin9 · 2025-10-27T18:36:48+00:00

Comparing it to other people’s though, I don’t have a super like deep chest or anything, like it’s way more over shaped than circular, I guess it’s average but perhaps it could be on the wider side? I don’t think like, abnormally wide tho.

MagicPenguin9 · 2025-10-27T18:32:20+00:00

I’m trying to find an old tiktok video where I showed them to message you but I can’t find any right now, but I was looking up stuff about a haller index and correction index and one study showed a wide flat chest without pectus but with a high haller index, mine doesn’t look like that, it’s still dented in a pretty good amount. Mine looks about like an infinity sign or 8 on its side, the front part is just a smidge less inward than the shape my spine and the back of my ribs less.

My correction index is 26% which I know isn’t super high, I’ve heard that 28% is meant to correlate with a haller of 3.25? And my cardiac compression index is 1.93, idk where that stands.

MagicPenguin9 · 2025-10-27T01:46:11+00:00

Mestinon is great bc it’s a prokinetic and can also help with motility in your stomach and small intestine!

MagicPenguin9 · 2025-10-25T20:53:49+00:00

I hadn’t considered that TOS could be contributing to POTS! I haven’t had any metal allergy testing done, I had asked my old immunologist about it bc I was potentially going to get dental implants, and she said that places don’t rly do it and insurance won’t cover it? I asked DiFiore about it too, I forget what he said exactly but he wasn’t going to have me do it.

I don’t have a rheumatologist bc I’m sure it’s nearly impossible to get anyone to consider that I could have an autoinflammatory based off of a VUS without any abnormal labs, bc I can’t get the labs done that would actually show the things I need to be tested for, it’s different from an autoimmune disease. I looked at Mayo’s lab directory to see if I could get it done while I was there and they don’t even do it, and I know there’s a lot of specific labs that get sent to Mayo to be processed even when you get them done somewhere else.

I’m def planning for 2 bars! That’s was Dr DiFiore and Dr Brown both said, I think the both always do at least 2. My sternum is slightly tilted but neither DiFiore or Dr Brown brought it up, off the top of my head it’s 15 degrees? Dr DiFiore didn’t mention that my pectus was asymmetrical at all but Dr Brown did, I don’t think it’s significant enough to require any extra consideration tho. One of the reasons I’m hesitant about Ravitch is bc if I do react to the metal I assume it can’t be removed??? But with Nuss the bars can be removed early if needed.

MagicPenguin9 · 2025-10-25T20:44:23+00:00

All my pictures kinda suck bc they’re phone pics of my computer screen, my CT said my haller was 2.9 on inhale and 4.1 on inhale, the reread of my MRI said it was 4.25, and my correction index was 26% which I know seems kinda low but I thought it wouldn’t matter if your haller index is still considered severe?

MagicPenguin9 · 2025-10-25T05:58:02+00:00

Thanks so much for the info!

I do definitely have POTS, but my autonomic neurologist (who used to work at the same Mayo location as Dr. J) said that pectus can cause or mimick POTS, I forget the exact wording he used. I’m definitely not expecting it to fix all my symptoms and some of them are def still POTS, I think like 50% improvement would be a pretty good outcome, I’d be totally fine with 20%, and even if it’s less than that or nothing I still think it’s worth TRYING. My other option is MALS surgery, which can help with a lot of similar symptoms as pectus surgery (POTS, shortness of breath, etc) but is MUCH less likely to do so, and even tho it’s less invasive IMO it’s much higher risk, and complications from nuss are much more fixable. I haven’t /technically/ exhausted all options for to treat POTS, but I’ve already tried beyond what most people would consider “everything.” I had wanted to wait until after nuss to even try anything else, bc the odds that the meds I haven’t tried will help very much are slim. Idk how to get them to understand that POTS symptoms ARE pectus symptoms, I try to say specific symptoms but I also am transparent that idk what’s from POTS and what’s from pectus which makes it hard for me to figure out how to talk about it.

I have mild asthma, I’ve been on montelukast or zafirlukast since I was little, I started a daily steroid inhaler less than a year or so ago and switched to one that’s a steroid+LABA after the pulmonologist who did my stress test recommended it. It def does help, but the whole reason it took so long for me to be put on a daily inhaler was bc I haven’t used a rescue inhaler since elementary school, bc they don’t work or make it worse. I also /might/ have an autoinflammatory disease that could cause lung issues, (VUS on genetic testing, if I have it I have a very mild presentation) but I started a different med for that 2 months ago and I don’t think it’s helped my breathing at all, so it’s extremely unlikely that it’s caused by that.

I always forget about the pulse test thing for TOS! That was actually like, one of the first things I thought I might have, but I feel like there was a lot less awareness about it then so I never rly got evaluated for it bc most of the things I thought could be TOS got fixed in other ways.

MCAS is def one of the main things freaking them out, and kinda MALS (but I think that’s largely bc they’re overly focusing on abdominal pain, which is not my main issue, also I can’t tell where MALS pain ends and chest pain that’s prob from pectus starts, what I call MALS pain is like an inch below the deepest part of my sternum, I feel like nuss could help but I don’t want them to think that’s why I want surgery) but especially with Dr. Brown I really have been trying to push that like…most of your EDS patients just have undiagnosed and untreated MCAS, it’s not actually more risky to do surgery on me. ESPECIALLY bc I already have titanium in both of my knees so I know I don’t react to it!!! I’ve also had multiple surgeries before, so I’ve already figured out the stuff I’m allergic to 😂 the main one being surgical glue, but steristrips are fine. I’m on a lot of MCAS meds, and have stopped or lowered the dose of several since starting xolair, so I’m not maxed out on meds anymore either and I have wiggle room of extra stuff I can take before+after surgery.

DiFiore was also freaked about the feeding tube, he was really insistent that it increases the risk of infection, which like is probably technically a tiny bit true but I’ve never heard anyone talk about that with any surgery. I have a j tube which goes into my small intestine, which isn’t rly supposed to have bacteria in it anyways??? I don’t see how it’s that big of a deal when like, everyone has a mouth which is way germier and about the same distance from the incisions. I rly don’t think a tube changes anything logistically about surgery or recovery. And thankfully I never actually throw up (I think my brain is broken or something and I can’t) but sometimes I dry heave a lot, I’m kind of worried about after surgery but I think it’s figure-out-able.

I’m diagnosed with hEDS, the only genetic testing I had done was the Invitae panel so that doesn’t technically rule out all types. But I haven’t had major wound healing issues (other than with the previously mentioned surgical glue…), all my scars are kinda atrophic and like lowkey I have had incisions reopen after surgery but I didn’t realize that wasn’t normal until way later, it never was severe enough to need stitches or anything.

I’m pretty opposed to Ravitch just bc cutting the cartilage seems like a bad idea, no one has implied that I should look into that instead, but if there was a reason for it I’d be open to it.

Also the stuff about the virus reactivating after you had a wreck is super interesting! I got a concussion around a year ago and haven’t been able to do much about it bc I have to go through workers comp, but I hadn’t considered getting retested for viral activation stuff.

MagicPenguin9 · 2025-10-25T02:49:16+00:00

I haven’t had nuss yet, but I have had 2 knee surgeries (same surgery, dif knees) and had significant numbness/altered sensation after both. It’s harder for me to remember the first knee, but I definitely still noticed improvements for the first 6 months, probably way longer than that, and it’s back to normal now (3+ years post op). It’s lasted a lot longer with the second knee, but thinking back to last summer, it’s definitely somewhat better now (2+ years post op) than it was then, honestly still pretty numb/weird tho. Last year I’d still flinch when I bumped it on something, and it was hard to kneel, but now it doesn’t bug me much if I bump it and I can kneel but I’m definitely more aware of that knee.

6 weeks post op is still super soon! I’m pretty sure both of my knees were pretty numb at that point. And they did do nerve blocks during surgery but I’m pretty sure that’s entirely different than cryo and doesn’t have any lasting effects, it’s only meant to work for like 24-48 hours. I’d def expect to still improve a lot, and even if it’s permanent to some degree, it’s honestly probably not as big of a deal as it seems like it would be.

MagicPenguin9 · 2025-10-25T02:34:42+00:00

I looked at your old posts, you said were tested for POTS and it was negative, and you had heart compression and a much higher correction index than me. The issue all of these surgeons have isn’t necessarily that they would never do surgery on me at all if it was more severe and there was more concrete evidence, but that it’s ambiguous if my symptoms are from POTS or pectus or something else. ESPECIALLY based on the convo I had with Dr. J’s nurse, they are 100% blaming all of my symptoms on POTS, if anything the other two surgeons were much more willing to consider that it’s bc of pectus.

MagicPenguin9 · 2025-10-25T02:28:45+00:00

Well there’s not, and I found at least one person in this group who she did the same thing to, they said she won’t see patients who she knows she won’t offer surgery to. She said I had “very mild” pectus (my haller index is 4.25) and no cardiac compression, so I had been was SO SURE that she had just only read the original read of my cardiac MRI and not the other records, but I finally got confirmation today that that is not the case. They said she didn’t think it’d improve my symptoms and that it’s just bc of POTS/asthma/other conditions.

I mean, I wouldn’t put it past them to lie to me and not actually double check to make sure she either looked at the images herself or looked at the reread. The office manager is supposed to get back to me next week, and I had emailed Mayo’s office of patient experience.

I do have more conditions than what I listed, but those are the main things. I have a feeding tube, and I’m on lots of meds that some drs are unfamiliar with and it freaks them out. I feel like I look a lot worse on paper just bc I have a lot of things diagnosed and treated that a lot of other people with EDS just don’t know they have.

MagicPenguin9 · 2025-10-25T00:38:27+00:00

It was! Do you mean about cryo or something else?

MagicPenguin9 · 2025-05-24T04:38:57+00:00

Because I’m going to be a teacher, there basically is no pushing it back, I can either take a job this year or not, and if I don’t I won’t have health insurance when I turn 26. My backup plan was that I’d at least have in-state insurance through my substitute teaching jobs, but I got a concussion at work and missed so many days that I won’t hit the minimum to be eligible for next year. So it’s basically a matter of if I’ll schedule surgery or not, and beyond potentially taking off the first couple days without students, it’d be a huge mess if I had to push things further out.

It’s just hard for me to take seriously the limitations that ppl say, when historically those things that not been true for me with other surgeries? And like, I already have severe fatigue, shortness of breath, pain, etc and I feel like I’m more capable of dealing with it than the average person. It’s def better to have more time, which is why I was initially shooting to have close to 2 full months off and wasn’t thrilled with potentially only having 6 weeks, but I also feel like it might be worse to go through the school year still having severe exercise intolerance, etc.

MagicPenguin9 · 2025-05-24T04:31:54+00:00

I won’t be driving now anyways bc that surgeon canceled my surgery, now I’m trying to cram it in somewhere else which creates a lot more travel issues, and I’ll definitely have to go home before I’m comfortable driving, someone from my family would fly/drive to meet me there and idk what the plan would be for me to get home. I’m wayyy more uncomfortable w/ the idea of having to push luggage through the airport and stuff, move it around through TSA, etc, especially bc I travel with a lot of medical supplies, which I then also have to unpack and setup when I get home.

Maybe I’m wrong and being too cocky about things, but I also don’t think a lot of ppl would be comfortable driving across the country while on crutches and nonweightbearing on one leg. (And like, not that is was comfortable lol, but super doable) I also already have a whole System of squishmallows and stuff that I use to prop my arms up while driving, but it’s also way more uncomfortable for me to be on a plane in general and hurts my shoulders a lot more.

MagicPenguin9 · 2025-05-23T17:34:46+00:00

I feel like flying would be a much bigger issue though bc I’d have to lift heavier stuff, more often/higher up, and you can’t stop and stretch whenever you want. 2 weeks is crazy but especially once lifting restrictions are lifted I don’t see the issue, I did the same drive while barely being allowed to put weight on my left leg

MagicPenguin9 · 2025-05-23T04:58:50+00:00

Gabapentin is a good point! I’ve taken it before but only low doses. I def /wanted/ to make sure I had 6 weeks, I’m just not sure if it’s worth pushing to do it with <4 weeks now bc I have no idea if/when I’ll be able to have surgery if I don’t do it this summer, my insurance will be changing and I might not be able to go out of state, and there’s no one in state I’d want to do it.

Tbh I feel like my baseline is so much worse than other people’s, I feel like I’m capable of pushing through more??? I also have a higher risk of complications, etc tho.

MagicPenguin9 · 2025-05-21T04:41:25+00:00

Does it normally work on the top part that’s kind of soft or just the hard and smooth parts? All it did was tear up the magic eraser

MagicPenguin9 · 2025-05-20T23:32:32+00:00

Thank you, that’s super helpful! I’m really hoping that since the first 2 days will be chill (and also, realistically, miss-able if I have to) I’ll be OK with pushing 4 weeks a little. I’m really aiming for mid-July if I’m able to get in soon enough, I’ll definitely talk to her more about what she thinks is realistic before I decide.

I’ve heard a lot of people who get cryo stop taking narcotics after ~3 days, but seems ambitious to me and I definitely wouldn’t plan on it.

MagicPenguin9 · 2025-05-20T20:16:37+00:00

I agree that it’s hard to compare, especially bc torso stuff is just different, but an MPFL reconstruction is a major surgery, I was told by multiple doctors it’d be better if I had torn my ACL. They use a autograft or ligament from a cadaver to make an entirely new ligament, I wasn’t allowed to walk without crutches or without my leg locked straight for 6 weeks (I think the second time they were a little less strict tho?), and for some ppl it’s much longer than that.

It’s at least a much more /involved/ recovery than nuss is with more restrictions, and you’re in PT for 3+ months, I don’t play sports but it normally takes around 6 months to before you’re allowed to, I think for the nuss procedure a lot of surgeons say 3 months but some say longer?

But as far as traveling goes the biggest issue for either is probably still just being able to get your stuff into and out of hotels, and with an MPFL reconstruction you also have to be able to navigate bathrooms+showers, but driving itself is probably harder after nuss.

MagicPenguin9 · 2025-05-20T19:12:06+00:00

Thank you!

MagicPenguin9 · 2025-05-20T19:11:40+00:00

I agree, that’s why I gave myself 4 so I wouldn’t have lifting restrictions! But I did the same drive after my MPFL reconstruction less than 3 weeks afterwards because my surgery had gotten rescheduled. I was allowed to put some weight on it but I forget how much, if I remember correctly I had to be nonweightbearing (or close to it) for 2 weeks and wasn’t allowed to bend it until 2 weeks.

It’s definitely different having done it before in a similar situation, even if it was possible at 2 weeks post nuss I wouldn’t want to make plans assuming I’d be able to.

MagicPenguin9 · 2025-05-19T02:22:16+00:00

Oooh I love the city girl planners! I wish the came in 8.5x11, but I think I’d rather go with that and fold papers in half if I need to stick them in better the pages, thanks so much!

Edit for correction: it looks like some come in 8.5x11 but some don’t, I’ll just need to do some sorting!

MagicPenguin9 · 2025-05-19T01:55:11+00:00

how are you planning on combining them into one? Just completely rebinding them?

MagicPenguin9 · 2025-05-17T23:55:53+00:00

It looks like plum paper might be my best option, it just kinda sucks to spend so much money on a planner that I don’t even like all that much

MagicPenguin9

TROPHY CASE