View Full Version : New member, saying Hi!
9th January 2008, 03:38 AM
Hello, my name is Justin. I have suffered from Kyphosis for years. I'm 26 and i think i was diagnosed when i was around 14 or 15. Being the stubborn person i am, i did not wear my brace due to fear of humiliation.(the curve was easier to hide than a huge ass back brace like the one worn by joan cusack in sixteen candles.)
After reading some of the post here i see alot of people who are just like me. I seriously thought i was alone in this whole ordeal.
My question is, is there anyone who can refer me to a specialist in this area? and question about insurance also rise. I know it would be hard to get a surgery like this with little insurance. So any information on these topics would help alot.
Thank you all for taking the time to read this.
9th January 2008, 04:23 AM
Hi Justin Welcome to the site! :D
Unfortunatley, I have worn my brace to school for about 3 years, and have stopped wearing it because I keep out growing it, and because of people annoying every darn sec.
I would urge you to get insurance for the surgery, its costly, I'm getting mine done this summer.
Um, about referring you for a specialist, I don't know any in your area, but i'm sure this site can help you, they have many referrences on other pages.
Again, welcome hope you find your answers.
9th January 2008, 08:53 AM
Hi Justin... welcome to SSo! I'm guessing you're somewhere in the US, since you mention insurance issues, but I don't see where you indicated your area. *puzzled by jamielynn's post* Am I just overlooking it? I do have a cold, but... *confused*
Anyway, let us know more about where you are, and I am pretty sure some specialist names will pop up for you. Do you have the resources to pay out of pocket for care?
9th January 2008, 10:02 AM
I live near the Seattle area in washington state. Currently im on state insurance. I go to my family doctor on the 23rd to talk to him about it( i just finally got insurance where i dont have to pay any co-pays, so thats why i feel like i can talk to a doctor about it.) The last time i talked to a doctor about this, was when i was still a freshman in highschool and under military health care. Like most people here i was told to just deal with it. The brace they made me, limited my mobility too much. Also being a big guy, i felt if i DID wear the brace, i wouldnt have fit right in the small desk/chairs they had for you to sit in, resulting in even more torment from other people at school.
I've been called every name in the book. I still havent seen that disney movie, and really dont plan to. Its just like i want to forget about my condition, and also i catch myself looking at other peoples backs, too. Its weird, and I wouldnt have even noticed i had a problem untill some asshat in PE pointed it out and got the whole Varisty football team to "come look at the hunch back" Ever since then i just fade into the shadows.
Also my wife is pushing me to get something done about it, because i do notice it getting worse. The pain is also getting worse. And it also causes me to have a shortness in breath sometimes too. My wife has also been a big help too. She never even noticed it untill i showed her, and that wa son the 2nd date or so. Even then she has still stood by me every minute of the day.
After reading these post from other people, again i have to say im glad im not alone. Thank you all for taking the time to read these.
9th January 2008, 10:32 AM
Welcome to the site. Looks like we're quite similar. I was diagnosed with kyphosis at a similar age to you and had to wear a brace. After only 3 months though my doctor stopped me wearing it as it was making my pain worse. I think I probably would have stopped wearing at that point though anyway even if the pain had improved as it was like a big cage and I hated it. I was also a big guy so there wasnt anywhere for me to hide. I had my surgery in 2004 and my life improved dramatically so I'd definately recommend that you seek out specialist help and look into that as an option.
I cant really help when it comes to insurance as I'm in the UK so luckily we dont have to deal with such issues. But I just wanted to make it clear that you're not alone.
And btw, I was always conscious about my hump. And again recently I've been getting worried as I'm sure that its getting bigger again. But all my friends and family say that its not something they have ever noticed. They just say 'well kinda' but only after I've pointed it out. People dont tend to really notice backs as much as other parts of bodies so try not to let it get you down. People really dont notice it as much as you do.
Anyway I wish you luck and hope you can get something sorted out.
9th January 2008, 02:12 PM
Justin, I grew up with military health, too, but I guess I was more fortunate than you, as I was always at the right place at the right time and got excellent care. Well, the best care available at the time. Had I been born 20 years later, I would've been a VEPTR candidate, and I wouldn't have near the problems I have today. And I'd be taller. *wistful sigh* But small is cute, right?
Anyway, even with state coverage, if you're to a point where you don't even have co-pays anymore, you should get a good reception from your doctors... when I got it worked out that I had no co-pays, my doctor's eyes lit up because he knew I was so well covered that they would definitely get paid. I have had brain surgery and septoplasty under my current coverage, and haven't had to pay for anything at all.
If your regular GP gives you any problems, I recommend changing to another one... and keep doing it until you get one who is willing to work with you. Despite what the US medical establishment seems to believe, they work for you. If you're not happy with your care, "fire" them by going to someone else. *smile*
Meanwhile, we've got about two weeks to scrounge up some names of specialists in your area for you to request referrals to. We'll get on that. *thumbs-up*
Edited to add: I saw the Disney movie you referred. It wasn't a pleasant movie for me, as I knew it wouldn't be.
9th January 2008, 02:59 PM
I think most people here will be able to relate to you :)
Being in Seattle - you'll be in close proximity to the University of Washington facilities which are top notch from what I've read. You should start your search there for a trained surgeon.
There are also a lot of great surgeons in California as well - does your coverage only work in Wash State or can you go anywhere in the US?
9th January 2008, 06:39 PM
My coverage only works in the state as far as i know. well once i see the doctor i'll give him the info that i have researched and see if he can help me.
9th January 2008, 06:46 PM
Welcome to the site. I had my one stage op in 2004 when I was 14 and then had to wear a brace for a number of months afterwards. Hopefully my last appointment is in February..fingers crossed:)
Let us all know how you get on at the doctors
9th January 2008, 07:14 PM
Hi Justin :welcome:
I can't be much help with your search for a surgeon as I'm also in the UK, but I can certainly relate to your feelings of isolation and self consciousness. Finding this site has been a Godsend for me, everyone here is friendly, helpful and supportive (and a bit mad! :glee: )
Good luck, I'm sure you'll find a willing surgeon now you have your insurance sorted!
Keep us updated, yeah?
9th January 2008, 07:33 PM
Justin Am 32 years old and also have 92% kyphosis.
I have had this disorder for many years and also been called lots of names even when i was at school many years ago and back then my kyphosis was no were near as bad as it is now..........................
I understand how we try to cover our curve up with clothes , jackets i always were 2/ tshirts under my normal clothes......
I am having my surgery within the next couple of mth i really hope you get to the specialist and get the treatment you desired............
9th January 2008, 08:57 PM
I am 16, and recently had surgery for kyphosis. My outcome was amazing and I definitely know how you feel about being teased, and I HATED that disney movie.-couldn't finish it. Now my Kyphosis is in a normal range and I feel so much better. Now in school the people who made fun of me before can't even LOOK at me! My friend Jen says that its from embarrassment, well I sure hope so from all that torment they put me through! Good Luck with finding a surgeon and getting treatment. :squeeze:
9th January 2008, 11:06 PM
Welcome to SSO :welcome2:
I really hope that you're able to get some insurance sorted so you can get proper treatment for your back. The results of surgery can be amazing. I also wore the Milwaukee brace that you had (Gareth had this brace too, but most people here wore corset style TLSO braces which aren't as noticeable) and I really sympathise - I wore mine as a young child, and think it must be much worse to wear it as a teenager when everyone is so conscious of the way they look.
Anyway, good luck, and welcome to our family :squeeze:
10th January 2008, 12:25 AM
Welcome to our wonky world
I hope you enjoy the site and find it useful for info and support
10th January 2008, 07:28 PM
Welcome to SSO. I took the name Amazed because that is how I felt after being alone with scoliosis for over 40 years. It is great to know that there are others. I really hope we can help you get sorted to consult with a scoliosis specialist. I waited too late and now I am left to deal with shrinking height, more pronounced hump and various breathing issues. Good Luck and ask away.
11th January 2008, 06:15 PM
Hi Justin :welcome2:
I'm also in the UK so can't help with insurance. I just wanted to say hello and I hope you find the site really helpful.
Take care :niceone:
28th February 2008, 02:07 AM
Originally posted by ariec924@Jan 9 2008, 08:57 PM
I am 16, and recently had surgery for kyphosis. My outcome was amazing and I definitely know how you feel about being teased, and I HATED that disney movie.-couldn't finish it.
What Disney movie are you guys talking about ?
28th February 2008, 11:44 AM
the hunchback of notre dame, eh? i hate that movie. and i can't believe it's actually called the HUNCHBACK of notre dame :/ in norwegian it's just ringeren i notre dame (the bell-ringer of notre dame), but it's still awful to watch. it's so depressing how he's considered a monster..
anyway, i just wanted to welcome you and wish you good luck! i have kyphoscoliosis, although my scoliosis is more severe. have had surgery twice (will be having my third this summer) - do look into this treatment if your kyphosis is severe. can't help with insurance-stuff either, as i am in norway :)
29th February 2008, 01:58 PM
Hello, and :welcome2:
Well done for finding this site :)
2nd March 2008, 09:41 PM
Hi Justin, sorry I can't help you with insurance issues as I'm another one in the UK. I did have mine privately though. I had kyphoscoliosis and the op corrected both in 2006. Fused T11-L3, 1 rod and 5 screws.
I hate the thought of that movie. Just eugh!
welcome to sso
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