View Full Version : New member - never diagnosed, but
15th March 2006, 04:37 AM
Where do I start? The title says it all. I'm 39 years old, but unlike the majority here (I gather), I have never discussed my kyphosis with anyone. I admit I don't know for sure what it is, but after searching the internet, I'm convinced it's Scheuermann's; I have all the outward signs.
I've never had it diagnosed because so far, it doesn't cause me too much pain. I get muscle fatigue right at the apex if I stand too long, and riding in a car ranges from "uncomfortable after a couple of hours" to "painful after a few minutes", depending on the shape of the seat. For years, I haven't been able to touch my head to the headrest without going into an extreme swayback position. It's uncomfortable to lie on my back on a hard surface. All the weight of my upper body is on the apex, and if I can relax enough to let my head touch (hard on my neck), I'm not looking up at the ceiling, but more toward "overhead".
What bothers me most, though, isn't the discomfort, or even the repulsive appearance; it's that my dad has the exact same thing (more evidence for a genetic cause), but neither he nor my mom has ever said a word about it. The only possibilities are that they never noticed it, or are in denial. Both of those are inconceivable to me! They sent my brother and me to private school, encouraged us in music, arranged for braces for our teeth, got me to an eye doctor when my teacher said I was having trouble seeing the board, etc., but not a word about my hump. I might not have worn a brace, but I certainly would like to have had the opportunity! I don't have any kids, but if I do, you can bet I'll be watching for it, and I'll have them at an orthopedist at the first sign.
Well, that's my intro, and my rant. I admire those of you who have gone ahead with the surgery. I've heard all the horror stories about different types of back surgeries, and it always seems like they don't work. As much as I'd like to have it fixed, I have to admit I'd rather be a (mostly) pain-free hunchback.
15th March 2006, 06:44 AM
Hey. Welcome to the SSO site. You will find a home here and lots of listeners. I am 54 years old and wasn't offered a brace or surgery until I was married a few years. Our "specialist" seemed to be in denial. I have never had surgery or any type of bracing. I wish I had been given some early advice to go elsewhere for a specialist. However that was back in the mid 60's and people just beleived what their doctor told them without a second opinion. I admit that by the time I was advised to have surgery I was 22 years old and recently married and didn't want to take 2 years off for the then reccommended hospital and "in bed" confinment that Mayo Clinic said was what was necessary. I guess I just floated along and let my spine be what the hell ever it wanted to be. I hope there is still time for you to look up a good doctor and find out about surgery. When I finally found a surgeon last year I was told that my lung function would be a major factor in preventing me from surgery at this point. As my spine curve progressed it has crushed off my lung function to be about 12 -15% of normal. I am on full time oxygen. I have a huge spinal hump which I hate. I have no great advice for you except to let you know that there is a lot of knowledge here for you and acceptance and understanding as well as compassion. We are also a fun loving bunch that has never missed a chance to help. Welcome and glad to see there is another person oin the States.
15th March 2006, 09:47 AM
Hello welcome to SSO :welcome: i like you have never had or been offered surgery. My parents took me to the Drs once and when he reeled of all the horror stories that was it. I was however diagnosed with Scheuermann's but not measured. So that was it till i started looking into it a couple of years ago and i found this site. All the members here are wonderfully supportive and we have a wealth of information so if you have any questions do not hesitate to ask. I don't blame my parents they were a s clueless as the stupid Dr who examined me. I'm now 35 and have a lot of pain so i'm once again exploring the different avenues open to me. Howver i have a lot going on in my life at the minute and can't afford to be out of action for 6 months. I hope you can find someone who will look at your situation and you get the best advice and treatment possible.
15th March 2006, 09:48 AM
Hi J ..
Well believe it or not, just because it is noticeable doesn't necessarily mean a doctor will do anything about it. My scoliosis was picked up when I was 8 prior to kidney surgery. A letter was sent to my gp and it was mentioned in it. The consultant nor the GP never mentioned this to me or my parents. It started to really show when I was about 13 and even when I did see a gp they never made any remark to it. Neither did an endocrinologist who I saw when I was 17. Fast forward a couple of years and by chance I learned my back problem actually had a name for it and even then noone said that anything could be done.
3 years ago when I was 30 when I found information on the internet stunned. I eventually got a copy of my records to see what was on them and was equally stunned to see that doctors knew and didn't say anything. My parents just thought I'd developed the problem because of carrying a really heavy schoolbag.
I started finding someone who took it all seriously and I'm awaiting surgery now to mainly try stop any further nerve dmage happening and try align my head over my pelvis. Not looking forward to it really.
Just wondering if you parents have ever talked about it between themselves? and could you try talk to them about it now?
Where are you located J?
Maybe we can point you in the direction of a speciliast in this area?
15th March 2006, 09:54 AM
Glad you've found us! My name is John, I'm 36 & had surgery to correct my Scheuermann's last October & I am still currently off work recovering (doing well I might add!). A few of us have had surgery, Phil's just had his & so has Andy. Mark is on the fence! So your in good company.
It certainly sounds like you have Scheuermann's from the way you describe it but you would obviously need a professional diagnosis. You'll find the longer you hang around this site that what you have/are going through is a familiar pattern with most of us! I was told there was nothing could be done for me & lived with it until I finally found out that it is possible to correct it only a few years ago. It took me until last October to go through with it.
There is a lot of ignorance amongst the medical profession on both sides of the atlantic regarding scheuermann's & scoliosis. Many doctors aren't even aware that it can be treated!
Going ahead with surgery is a major step & not everyone does it or actually meets the perameters for surgery. Over here from memory they wont operate unless your curve is over approx 70 degrees. Mine was 80. You are considered as having abnormal kyphosis when your curve excedes about 40 degrees.
Have a look in the member galleries & you will see photos of some of us before & after surgery. Myself (zerodegrees) & Phil have photos specific to scheuermann's.
Anyway, we're all here to offer you advice & support whenever you need it. Everyone is a bit mad but we'll soon have you converted too!
15th March 2006, 10:06 AM
Hi J and welcome.
I can understand where you're coming from regarding reluctance to undergo surgery for kyphosis, but there are many successful surgeries done nowadays if your condition warrants such intervention.
It may be a good idea to have some xrays taken and a diagnosis done by a spine specialist,even if you don't opt for surgery, those measurements could be useful in later years should any pain develop or problems arise.
Once again welcome.
15th March 2006, 02:42 PM
Hello J and welcome to SSO.
I'm around 12 weeks post op and life is yet to settle down for me in appearance or acceptance however even though it's a rough ride I don't regret it.
I'm 21, was diagnosed at 16 with Scheuermann's and told no treatment needed, it would not get worse. I had kyphosis only at around 48 degrees then. In December my kyphosis measured at about 71 degrees and the surgeon noticed i had developed a 33 degree lumbar scoliosis curve in a matter or 9 months.
My parents trusted the original Dr when i was 16, so i got my surgery alone and told them after. They were in denial themselves i guess.
My advice is to get it seen to, go through the motions just to get on record and then that will open you options if not now for the future. None of knows what we will be like in 10 years so i really think it's best to get seen.
Great bunch here, you are no longer blind :)
15th March 2006, 06:30 PM
Hi J!!! Altough I completely understand your reluctance about correcting your kyphosis, I believe it's important that you get yourself checked, and if need be, get yourself sorted out.
Even though, as Phil has put it, it's a rough ride, chances are that you won't regret it once done. I suffer too from pain free kyphosis, but I do not know wheter my condition is stable or not. Just as much as your parents, mine were in denial too. My grandmother has it, my mom has it too (their shapes are identical to mine) but still thinks her back is straight, even though I wholeheartedly disagree with her. In my case, when I was young, it was always something on the line of: "Stay straight!" and my parents would magically think that just because they ordered me to do so, my hump would transform automatically to a pianist posture. Well Mum, I don't think so!!!
Obviously even though I wanted to, I wasn't able to by myself. When I got myself checked at the age 13 my curves were around 55 degrees and I had started developing a slight scoliosis too on my right side. I suppose that by now, the situation has worsened. I am seriously considering surgical correction, if anything also for the sake of looking a bit better, but I think I'll have to wait to be out of home, since my parents still kinda deny that I have a problem (great people and always supporting, but everyone has his flows). Surgery is also something serious, because of the pain, scarring, and long recovery time, but in some cases it could be life saving!
Therefore, do not hesistate to get yourself checked and your situation assessed; you might actually (if worse comes to worse) find out it's a necessity. Don't hold back and go for it anyway. The end decision will still be yours, but at least you'll know exactly what you have and you'll be able to act accordingly.
Again, welcome in SSO
15th March 2006, 07:02 PM
Originally posted by sticktrix@Mar 15 2006, 10:30 AM
In my case, when I was young, it was always something on the line of: "Stay straight!" and my parents would magically think that just because they ordered me to do so, my hump would transform automatically to a pianist posture. Well Mum, I don't think so!!!
Ha! My dad mentioned it just once to me. I was about 13 to 15; at the time, we knew an older guy, in his 70s, who was extremely hunched. My dad said something along the lines of, "Stop slouching! You don't want to look like Mr. So-and-so, do you?" I didn't say anything, but I thought, "Yeah, right. Have you looked in a mirror lately?"
Comparing to Phil's and zerodegrees' pictures, my kyphosis is just a little milder, with no scoliosis that I can detect.
How has it affected the shape of your (whoever's reading) rib cage? I may be lucky, because my lung capacity seems good. My rib cage seems to have been forced from the normal elliptical cross-section (wide side-to-side, and flatter front-to-rear) into a more circular shape (narrower side-to-side, and larger front-to-rear), instead of collapsing. In fact, in profile, I have a chest like Arnold Schwarzenegger, even though I'm not too muscular. If I suck in my gut, my upper body in profile looks like a light bulb.
Interestingly, not many people have made comments. My brother called me Quasimodo when we were younger, and I overheard a couple of guys at work mention it once, but that's all I can remember. As far as people staring, either they don't, or I'm not observant enough to notice them.
You're all right in that I probably should have it looked at, just to get a baseline for the future if nothing else, but you know human nature - I'll probably go when (if) it hurts badly enough.
I'm in Albuquerque, New Mexico, USA. Good services of every kind (not just medical) are hard to find here - mostly you have to go to Denver, El Paso, or Phoenix for specialty services.
Thanks for the welcomes!
15th March 2006, 07:46 PM
I find my rib cage is more 'circular' and know what you mean J. As a gym user pre op i always noticed how hard it was to build my laterals up. makes sense really.
15th March 2006, 07:55 PM
Hey JJ welcome to SSO
As every one has said, I too agree that you should get yourself examined. Itís good to keep track of how your curve is progressing. If curve stays put then itís not a big deal as long as you are not in pain but if it progresses then you need to keep an eye on it and follow it
16th March 2006, 11:54 AM
Originally posted by sticktrix@Mar 15 2006, 05:30 PM
My grandmother has it, my mom has it too (their shapes are identical to mine) but still thinks her back is straight, even though I wholeheartedly disagree with her. In my case, when I was young, it was always something on the line of: "Stay straight!" and my parents would magically think that just because they ordered me to do so, my hump would transform automatically to a pianist posture. Well Mum, I don't think so!!!
Obviously even though I wanted to, I wasn't able to by myself. When I got myself checked at the age 13 my curves were around 55 degrees and I had started developing a slight scoliosis too on my right side.
we are most definately twins, just living on different continents
what you just described in that paragraph is my story exactly. My Gran had it my mum has it and i was always told to stop slouching andm stand up straight as if it would be a miracle cure. I too went to see a specialist at the age of 13 but i was never measured.
We even share the same name how spooky is that
I don't know if your on msn but if you are and you want to add me my address thingy is
16th March 2006, 05:12 PM
Hi again Mark! This is mine instead, in case anyone wishes to contact me on MSN!
Feel free guys! :rox:
16th March 2006, 06:57 PM
Even if you have no problems now I recommend you see somone, even if it is just to have a baseline of information as you say. At least if you have any further problems you have some recent information and assessment results to work from.
You dont have to do much more after an initial consultation if you don't want to, but at leats you will be in the system so to speak if you decide to go further.
16th March 2006, 09:22 PM
Just made an appointment with an orthopedist. They must be pretty busy, though; it's not 'til the end of April.
16th March 2006, 09:38 PM
Great news Jeff, i'm glad you've made the appointment. Lets hope they can now give you some answers.
16th March 2006, 09:43 PM
Originally posted by JJohnston@Mar 16 2006, 09:22 PM
Just made an appointment with an orthopedist. They must be pretty busy, though; it's not 'til the end of April.
That's still pretty close Jeff. It gives you time to decide what you nee to sk and get all your information together too. Don't worry, it will be here before you know it.
Glad to see you're not wasting any time in getting an official diagnosis.
Hope you get all the answers you want.
16th March 2006, 10:26 PM
Hi jeff, there's a list of scoliosis specialists in USA.perhaps there's someone on that list in your neighborhood.
17th March 2006, 09:07 AM
jeff, remember to write down all your questions as you'll find they completely disappear when you see the specialist!
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