Requesting Help With Hiding Pointed Chest, Back hump, and uneven shoulders

[Scoliatic]

Hello, I am scoliatic and I require assistance. I have a fairly large back hump, my chest is pointed, and I have like many of you, uneven shoulders. I have been home-schooled my entire life and am going to public school next year and want to minimize the stares or constant questions. Does anyone know what types of shirts, sweaters, or patters help hide my disfigured figure? Also I am new to this site and am hoping to help and receive help from fellow humans and cyborgs. Lastly, if anyone is interested I started a scoliosis blog a month or two ago if anyone's interested the link is https://scoliaticblog.blogspot.com/

[Scoliatic]

Scliatic again, I can't figure out how to make my profile have a picture please help I can't seem to figure out how to do it.

[titaniumed]

Welcome to the forum Scoliotic! You are our first MAGEC poster! Or MAGEC member!

We did have a parent with a son many years ago when that system was first launched. I am trying to remember....just search magec and you will see the threads and posts.

I personally won't be of much assistance with dressing or clothes, but someone will chime in on that subject.

How old are you now? and at what age did your scoliosis surgeries start?

Also, when are you getting fused?

Ed

[Tina_R]

Welcome to the forum Scoliotic! You are our first MAGEC poster! Or MAGEC member!

We did have a parent with a son many years ago when that system was first launched. I am trying to remember....just search magec and you will see the threads and posts.

I personally won't be of much assistance with dressing or clothes, but someone will chime in on that subject.

How old are you now? and at what age did your scoliosis surgeries start?

Also, when are you getting fused?

Ed

How do you know they are getting surgery? Don't scare him/her away.

Oops. Never mind, I just read in the other thread that Scoliatic has already had a bunch of surgeries.

[Scoliatic]

I am a 14 year old male man of manliness and am turning 15 next month. I was diagnosed with scoliosis when I was either 3 or 2 and got my rods at age 3. I later changed to MAGEC rods later in my pre teen years and actually managed to break one in my body during dance class it hurt like crazy but I'm fine now and have another rid for extra support. I am getting my final fusion this summer not exactly sure when but I think we're scheduling it next week.

[Tina_R]

I am a 14 year old male man of manliness and am turning 15 next month. I was diagnosed with scoliosis when I was either 3 or 2 and got my rods at age 3. I later changed to MAGEC rods later in my pre teen years and actually managed to break one in my body during dance class it hurt like crazy but I'm fine now and have another rid for extra support. I am getting my final fusion this summer not exactly sure when but I think we're scheduling it next week.

I read some of your blog. You've been through a lot. I like your writing style. I don't know what it is about scoliosis, but there are a lot of younger people with scoliosis who can think and write about it with great maturity and wisdom (I read other forums; there aren't too many young people on this one right now).

Why did you need so many surgeries? And it raises a question I never thought of. Since young people are still growing, do they need their rods replaced every so often? And do you have some kind of rods that expand along with your growth? I'm not sure what an expansion is that you are referring to.

I thought you were making up Big Picture and Why Not You Academy, but they're real.

I think you asked about posting pictures. For some reason they don't show except as a link. Other sites that look like this one and should work like this one, you can see the picture in the post. I don't get why you can't on this site, we are all words and no pictures.

Unless you click on the link >>> Primrose.jpg

[titaniumed]

I am a 14 year old male man of manliness and am turning 15 next month. I was diagnosed with scoliosis when I was either 3 or 2 and got my rods at age 3. I later changed to MAGEC rods later in my pre teen years and actually managed to break one in my body during dance class it hurt like crazy but I'm fine now and have another rid for extra support. I am getting my final fusion this summer not exactly sure when but I think we're scheduling it next week.

I see...

So, You did many growing rod procedures growing up.....I guess you are pretty used to pain doing all the surgeries that you did, You're a trooper....I take it all these surgeries were done up in Seattle?

I am not sure when they started using growing rods.....maybe Linda would know. The whole scoliosis scene has changed leaps and bounds since I was diagnosed at age 16 in 1975. We don't have many young people here and extremely happy that you are posting....I think it's pretty important that you do post, it has a lot of value.

How big are your curves now? And how is the pain? I went through your blog really quick, I am going to take another peek here soon....

If you have any x-rays or photos, post through the system. It's saved on the NSF server and only members can view.

When you do a post, look down and find manage attachments
In the box that pops up in the upper right corner, click add files, then choose file
I always throw up a file on my desktop. Find the file, select, then click upload
The icon will be in the lower left highlighted. Click done
Click preview and it will show up below as an attached image.

For attaching to your signature, something seems to have changed in the software and I can't figure out how to add attachments to the signature. Under signature permissions in edit signature, uploading images for signature is highlighted as "No".

For now, just add attachment files to a post.

Ed

[Scoliatic]

So Ive had two types of rods, VEPTR and MAGEC. I first got the VEPTR rods when I was two or three and it helped straighten out my spine a ton. So much so that it changed my center of balance and I had to relearn how to walk. I don't know how much of a curve i have right now but its not too severe. However if you look at my chest its all mangled and weird. The VEPTR rods had to be expanded every fourish months with surgery. They would have to cut me open, adjust the rods, and sew me back together. Once I get too tall for the rods entirely they had to replace them with larger ones. I just realized that some people might not know how the VEPTR rods elongate; they are made of two main pieces that slide into each other like a curtain rod and they have little holes that pegs are put into so that the rods don't move unless removed. Then when I was I think 12 I got the MAGEC rods. This wasn't to much longer after one of my surgery's went slightly sideways and I got an infection in my hardware, that sucked. With the MAGEC rods I wouldn't need anymore surgery's. They just have my lay on my back and they attach a magnetic device that always gives me the chills from previous expansions not being enjoyable. They make some magnetic parts of the MAGEC rods spin with the device and my rods get longer while I'm awake and can feel pain. It often hurts from a little to Oh gosh please no. They make them longer until I hurt to much to continue or the rods get stuck. At home my pain isn't to bad but it has different forms. I either have sharp pains that go away quickly but hurt a lot. My back just being sore and hurting from either sitting in a chair to long or other things. this pain usually isn't as bad but lasts a while. Then if someone smacks or runs into my back hump or other things can trigger it too, it will feel kinda like it's on fire, not sure exactly how to explain it. My scoliosis doesn't really stop me from doing much except not move my spine, have to sit out in dance class for a bit if my back is being a butt, and hating car rides (my back hump and scoliosis don't agree on me sitting in a car for long periods of time). All in all my scoliosis isn't that bad in the way that it affects me now but it's also been fixed a bit with the rods.

[titaniumed]

Again, I see....

Since there are not too many younger folks here, the VEPTR rip expanders are not mentioned all that often....It been years since any parents have posted. Maria comes to mind....I see that they were made by Synthes. I have a Synthes rod system. It's the Pangea system. All Titanium, Ti-6Al-7Nb There are many different types of Titanium alloys.

I did look at pointed chest photos online and the photos didn't look too bad..... There are some incredibly large scoliosis rib humps.....some of the ladies in the past have done thoracoplasties for these humps. I have a small rib hump now, and my lumbar hump is now minimal. My lumbar hump would get sore and I would lay on cliffs (before fusion) to try to push it back in. I would use a mayo bottle about 4" dia for this. Also would do this on my rib hump laying supine. Thoracoplasties or (Costoplasties in England) are not all that common anymore with the new hardware systems as they are good are correcting rotation. I had really bad rotation but didn't have a really large rib hump. The best way to check is with CT. Below is my CT looking for Gall stones. You can see the screws and it looks like my worst vertebrae corrected to about 20-25 degrees or so. This is looking "feet to sky".

We had a poster years ago with pectus excavatum...(sunken chest) but again you are a first that I know about with pointed chest.

Are you a left thoracic?

Infection can happen. We have members here that have done battle with infection....Usually Staph, and a P-Acnes case. It seems that they all get through this....I guess we all owe thanks to Sir Alexander Fleming
https://en.wikipedia.org/wiki/Alexander_Fleming

There are many different types of bacteria. I was taking Amoxicillan for a Periodontal problem, and was basically infected above my 2nd molar for probably 2-1/2 years. Amoxicillan will not kill off all bacteria. The doctors have to select the right ammo for the job. I eventually had injections done into the roof of my mouth for this infection of my Maxilla.

Sharon (Pooka) is a member here and mother of 2 scoli kids. She has been a lot of help looking at MAGEC and did report the situation a few years back on the hardware breaks. It's a tough engineering problem. Sigh. I hope she chimes in, if not I will send her a PM soon.

Can I ask how you found us? Your a smart guy coming here.... Many of us here have been long term scolis, some members operated in the late 1950's before the Harrington rods were introduced. The used casts and stayed in the hospital for really long periods, like a year in a cast.

I post because many (45) years ago there was no internet and no scoliosis support at all. I thought I was the only one....They didn't want to operate on me back in 1975, and the rest is a really long story.....deformity changes our lives...and a sign of intelligence is the ability to adapt and change no matter what happens.....and you have done that.

Ed

[Scoliatic]

So what do you mean by left thoracic? I'm used to baffling people with my slight knowledge of medical terms and smart sounding words but now that I've come here there are a lot of words that I don't fully understand. I came across this site when I was surfing the web about scoliosis and trying to find others like me and found this. I'm kind of surprised that there aren't a lot of younger people on here since many teenagers are obsessed with social media. My back starts right under my shoulder and goes to a little bit above my hips sticking out from my back maybe 3 inches not sure, it's hard to measure with an odd back like mine. It should decrees a lot when I get my final fusion but my pointed chest will stay. The pointed chest actually helps me because it's more room for my lungs to expand. One of my lungs is hypo plastic and I have asthma, that plus my scoliosis gives me 40 percent lung capacity of a normal human. How I still do dance I don't know.

[Scoliatic]

I'm re-reading my last reply and it's kind of messy and unorganized whoops.

[titaniumed]

Most of us are generally right thoracic.... Sometimes with infantile scoliosis, (possibly congenital) some kids have left thoracic curves which can indicate (but not always) an underlying cause, things like Marfan Syndrome, Ehlers Danlos Etc. Connective tissue disorders....There were a few Ehlers posters on the British forum years ago....Doctors usually look real close when they see left thoracic curves in young males..... Curve progression can happen quickly at a really young age, that's why I asked. X-rays tell the story.

When you do an Adams bend test looking for scoliosis, looking from behind, for a right thoracic, the thoracic rib hump will be on the right side. It's the opposite for left thoracic. Left T curves are a small percentage of scoliosis patients. Many structural curves start in the thoracic, with compensating curves below. I had 2 structural curves with my S pattern.

https://www.columbiadoctors.org/cond...osis-pediatric

With the medical sciences, learning never ends. Its constant discovery and constant learning. My Goddaughter is a PED trauma surgeon and many years ago I told her that once you start med school, it's never going to end. She knows that. Careful what you ask for! Doctors and Surgeons do what they do because of compassion.

There is a left thoracic video testimonial from a girl on Dr Boachie's FOCOS site. Dr Boachie saved her life. He was one of the old TCSC fellows from the old days. He operates on some of the most difficult scoliosis/kyphosis cases in the world. He is one of the masters of spine.

Don't worry about medical terms....learn them one day at a time....There is always something new.

Do you remember your first surgery at age 3?

Ed

[Tina_R]

The way to hide imperfections is supposedly with loose clothing, complicated cuts (pleats or whatever), distracting patterns. Men don't have as many options as women when it comes to variety of clothing. Maybe plaid button-down shirts.

When I was still crooked the thing that looked the very worst on me was a clingy one-piece dress in a solid light grey that I tried on. You could really see my crooked spine snaking along in that dress. And my warped ribcage. The opposite of that outfit would be much better clothing for me. Two-piece, dark colors or a pattern, looser.

I think anything too complicated or too different and it looks too obvious that you are trying to hide something.

[LindaRacine]

There used to be a lot of kids here, but they eventually moved on. I've found the same thing happening with almost all scoliosis support efforts for kids. I think that they are interested for awhile, typically when they get diagnosed or when they start undergoing treatment options, but eventually lose interest after treatment is discontinued or completed. It's important for you to understand that your scoliosis is probably significantly more of an issue than the vast majority of other young scoliosis patients, and that you may continue to have issues throughout much of your life. You seem to have your act together, and I have a lot of respect for how you're handling it all.

--Linda

[Pooka1]

I agree with Linda both about how most kids move past scoliosis after treatment and that you are handling your case expertly. I admire you, Scoliatic.

Most cases are AIS and you are EOS. Even the AIS cases that are surgical resolve for years if not for life. My two daughters had T4-L1 fusions in 2008 and 2009, respectively. They have both done crazy physical internships... backpacking into the mountains carrying a lot of fish shocking gear, pulling out heavy fish traps from mountain rivers, cleaning hippo enclosures, throwing 50 pound bales of hay to zebra and eland or whatever, etc. etc. etc. They don't think about their backs. Their main problems now are foot issues and shoulder dislocations related their connective tissue disorder. One wears a foot brace and the other is looking into getting one but they can still work hard. Science continues to save them.

Science will hopefully step up more for EOS folks.