View Full Version : I'm a newbie Hi Everyone!!
12th November 2004, 01:46 AM
Hi All :D My name is Dee I'm 38 (same as hubby David)and we have a son Ryan 9 who's just been diagnosed with scoliosis.We are off to see his brace and have a fitting on wednesday..he's having a boston brace for 23 hours a day..they hope! When Ryan was born they said he may have spina bifida as he had dimples on his spine but he was discharged by the hospital at around 4..We are waiting for an MRI which we hope to have in the next week or so.I also have Michael who is 6 today,he has special needs and am panicking as to how he will take to Ryan in his brace as any excuse for a fight is great by him..when he sees Ryan in 'body armour' I've had it!!! Scott is my eldest at 13 he's a wise old man LOL and keeps his daft old mum in check...Well thats a little about me and my brood am hoping to gain any hints and tips I can from you all! Also as Ryans birthday is Boxing Day..I know BAD timing LOL and hes going to be a new brace boy any suggestions as to what to get him for xmas/birthday?? He asked for loads of sports stuff as he loves rugby and wanted a spacehopper too...
12th November 2004, 02:04 AM
Welcome to the site. I am the site fossil. I am 53 years old, ex soccer Mom who has three curves with huge numbers (150,88,50) I have not had surgery nor have I ever been braced. I have many problems now that I am aging. (I am on full time Oxygen etc.) Check out our xrays and you can see my progressions. Just in case you ever think you shouldn't be so aggressive with your son's curve. Stay on top of his health - you are his best bet to get good care for him. Get a notebook-take notes, write down questions for the doctor, write down his answers,ask for photos or copies of xrays, and what the doctor is putting in your son's chart , write down your thoughts or your son's complaints. Know that you will need this information for years to come. Now then, try to relax - you are doing a good job and that's proven by your attention to his health. We are all great listeners and lots of fun too. Check in when you can. We can help.
12th November 2004, 02:05 AM
12th November 2004, 03:22 AM
Welcome! I'm 23 years old and I have 2 curves of approx 50 and 30. I am waiting on insurance to see if it has progressed. I'm thinking I'll talk to some doctors about surgery.
Hope your son does well in his brace. I never had one so I don't know what it is like. We thought about it when we found out about my scoliosis at age 15 but by then I was done growing and my doctor said it wouldn't be worth it.
12th November 2004, 03:34 AM
Hi Dee! I'm 21. Had surgery at the age of 20 for a single curve of 52, which was straightened almost completely in the fused part of my spine. Still a little crooked below my fusion, but thats ok.
Welcome to SSO!
12th November 2004, 10:56 AM
Hi Dee. Glad you came over and had a look. You know about me from spinekids, so I won't repeat it again. Welcome to the site. Hopefully there'll be lots of people here who can help you to understand the feelings your son will be going through in his new brace, and what the future may hold.
You don't mention Ryan's curves. Do you know what they are?
There's also a separate forum for infantile and juvenile scoli, and I tend to use both, but you may want to have a look there too.
12th November 2004, 10:56 AM
Hi Dee and welcome.
Lots of our members have been braced, some from a very early age, some more successful than others.There are plenty of pictures of Boston braces in our gallery as many have been through the scoliosis routine in Stanmore.Jonny and Carly will have lots of tips for your son to help him to adjust to his brace.The vital thing is that he wears it....a brace on top of a cupboard stands no chance of helping. I got my brace at seven and didn't wear it full time and ended up with a curve of 110 degrees.He has so much growing to do, there's a lot of scope for curve progression if he doesn't wear it.
He'll probably rebel against it and he can expect to find exercise and running a bit restrictive but he'll do ok! I'm currently watching my seven year old daughter and five year old son for scoliosis and so far they're ok.
How bad is his curve and what hospital is he attending? Sorry for all the questions but we're looking forward to getting to know you and will be delighted to help in any way we can.
12th November 2004, 11:41 AM
Hello Everyone thanks for all the great welcomes!Andrea told me all about this place and I'm so glad to meet you all. I have no idea what his curves are at the moment as we were too shellshocked and really didnt know what to ask last week..Since I got home from the diagnosis I joined SAUK and have spoken to a wonderful lady on their helpline and just surfed constantly for more info.We go back on Wednesday for his fitting armed with a lot more info on what questions to ask etc thanks to sites like this one.He has 2 curves the bottom one didnt look too bad?? but the top one is quite severe with a rotation and his ribs on the right stick way out.He also has a dropped right foot,thinning to the bones on his left side and tends to stagger rather than walk...He is looking forward to just getting his brace sorted out but I dont think it has all sunk in properly with him yet. We are in Surrey so he is so far being treated at Queen Marys Hospital for Children in Carshalton but they dont have a scoliosis specialist he's based up at Epsom General(fortunately the two hospitals are part of the same trust tho)I am chasing them up for his MRI as I need to know if its 'just' the scoliosis we face or something else too...My mum has it and my dear old nan did so hes not sure if its in the family but theirs was very late onset nan was in her 70's and my mum in her 50's..I am more worried as he said quote 'with a rotation it normally suggests there is something in the bone structure causing it eg spina bifida..' thats why he ordered the mri and Ryan WAS investigated for that at birth,we are now thinking 'did he have it all the time and we missed it?' I am already kicking myself for not noticing it sooner..it seems to have developed in literally the last month or two?He had his shirt off most of the summer and I didnt see it..the only 'weird' thing was his shoes..I kept telling him off for wearing the sides out so fast but when I checked its not the shoes its how his foot actually is so he has to walk like that!I am just sorting out some stockinette to run up some improvised 'undies' for him for under his brace when he first starts wearing it..I am a sewing machinist luckily so after struggling to find t shirts without any seams I decided to make my own for him..I just need to be 'doing something' to keep me sane LOL Dee :D
12th November 2004, 12:09 PM
Don't kick yourself, please! Although he seems a little young yet, Ryan could be in a growth spurt. It is possible for scoliosis to seemingly appear "overnight" when there is rapid growth. If nobody noticed it this summer when he was running around without a shirt on, it probably wasn't so visible then.
I'm curious why they suspected he could have a spinda bifida when he was born. Were there other signs of problems?
Anyway, I haven't actually said it yet, so let me finally WELCOME you TO SSO! I'm Kimberly, aged 31, in the U.S. I have severe congenital scoliosis and casting/bracing was ineffective for me so I had a fusion at 11 months, and a re-fusion to correct pseudoarthrosis at 18 months. I haven't had any further surgeries and haven't been in a cast or brace since about age two, but the severity of my case and early fusions left me with extremely limited lung capacity. Now I'm awaiting a referral to see if I can receive the so-far-only-for-children titanium rib implant to increase the size of my right ribcage (my thoracic curve is concave to the right) and improve my lung capacity on that side.
Glad you could join us!
12th November 2004, 12:27 PM
Welcome to our mad wonderful wonky family Dee :welcome:
My name is Leona and I'm 28. I've never had surgery or bracing since I only have mild scoliosis(2 smallish curves) but I wanted to say hi. :D
I hope Ryan doesn't have too many problems with his brace and that it helps.
12th November 2004, 12:30 PM
Hi Kimberly when Ryan had literally just been born they were doing his 'checks' and found a large dimple on the left hand base of his spine and a smaller one on the right.They looked like holes as they were (and still are)really deep.He had scans and xrays and was under the hospital til he was about 4 to see if the 'dimples' were connected to anything.He developed normally so we breathed a sigh of relief and he has never had any trouble walking or anything til now..I think you're right about the growth spurt he's tall and skinny like me :D I always thought spina bifida was very severe but apparently there are 3 types the most common being the less severe non presenting one..Thankyou for sharing your story with me Is it hard to get surgery in the states for this type of thing? We are lucky here in the UK as we have the NHS even though we all moan about it!! Surely you should get some sort of surgery if your lung capacity is so poor,but I suppose it works differently out there as its all private insurances isnt it?
12th November 2004, 12:46 PM
hey, welcome to the site! My name is Abbi....I am 18 years old, and I have two curves of 80 degrees. Im having surgery around sept 2005
I'm so glad you have found us...welcome!
I myself belong to spinekids....its great there...are you new in spinekids?
Andrea, I didn't know you go on spinekids? I have pobably posted you messages and not realised....!
12th November 2004, 12:57 PM
Hi Dee & Ryan! :welcome2:
I'm 21 years old and I live in Belgium. I was diagnosed with scoliosis when I was 9 years old (Summer of 1992). My curves were 22 and 20 degrees. I wore a Boston brace for 23 hours a day during many years until I had surgery in 1999 (I'm one of the cases were the brace didn't help at all)! A couple of months ago I found out that I have spina bifida occulta (the innocent and most common type of spina bifida) of my S1 vertebrae (the top of my sacral bone). I don't have a dimple or another visible malformation there, and according to my surgeon it has nothing to do with my scoliosis (which is roughly between my T2-L2 vertebraes). I hope you have an appointment for a new MRI soon and good luck with the brace! :niceone:
12th November 2004, 01:06 PM
Actually, insurance isn't a problem for me because my dad was in the military the whole time I was growing up, so I've got excellent coverage through that... I've been to several specialists since July, and haven't had to pay a bit. I even get free prescriptions.
The problem with me getting surgery is that my case is so severe that there's not much can be done for me. My referral is to the doctor who invented the titanium rib implant (recently FDA-approved for use in children, but never tried on an adult). If Dr. Campbell can't help me, well... I don't really know what my next step will be. My orthopaedists (I've consulted a few by now) don't want to break down my old fusion and revise it because it has such a high degree of risk involved and there won't be much benefit from doing it even if it was "successful." So I guess if I can't have the implant, I'll be stuck with things as they are until/unless I start to decompensate with age.
12th November 2004, 01:07 PM
I'm 15, and from Norway. I had my anterior surgery in september 03, on two of my three curves (35, 57, 30). I'm having some trouble with the top, untreated curve, but I'm okay :P I've never been in a brace though.
I hope you like it here!
12th November 2004, 03:00 PM
Hi Dee Welcome to the site
12th November 2004, 04:15 PM
Welcome, Dee and Ryan! As you can see, we have another Dee here :joke:
My name's Toni, I'm 29 and live in London. I had infantile scoliosis and was diagnosed at the age of 6 months with a double curve of 65/40ish degrees. I wore Milwaukee braces and plaster bodycasts throughout my childhood until the age of ten, when I had my first surgery (to correct my upper curve). After that I had a Boston brace for a few months and then went braceless until I was 18, when I had further surgery to correct my lower curve. I had a Boston brace for a few months after that one, too.
Good luck with the brace! Children do adapt very quickly, and the Boston is quite comfy really, when you get used to it :-)
12th November 2004, 04:19 PM
Hi Dee and Ryan,
I'm Anne and I'm pretty new here too. I am 39 and was diagnosed with idiopathic scoliosis at 6. I agree with Amazed, make sure you ask lots of questions and write everything down! I wish my parents had done that, they were just very accepting of everything they were told and really didn't question anything :roll:
I have learned so much more about my condition in the last few years (mostly thanks to the internet). I applied for my medical records a little while back and was pretty amazed at some of the stuff I read (my records dated back to 1971).
I do know that scoliosis treatment has come a long way since I was a child, so try not to worry :-)
I wish you and Ryan all the very best :spin: :D
12th November 2004, 05:42 PM
Welcome Dee and Annie! My name is Kayla I am 14 but am turning 15 in less then a month and I had my spinal fusion the summer of 2002 i think or summer of 2003 oh jeeze I am so confused
12th November 2004, 10:28 PM
Welcome to the site! I'm Leen, 20 years old and from Belgium. I had surgery this year, at the end of june, to fuse two curves.
I hope you'll enjoy this site and get all the answers and support you need. Can't wait to get to know you better!
12th November 2004, 11:26 PM
Thankyou all so much for all your wonderful welcome messages and words of encouragement no wonder Andrea and Abbi say this is such a great place to be!! :niceone: I look forward to getting to know you all over the coming months and hopefully Ryan will join in too when he has any questions or worries.You can't imagine what a relief it is for us both to know there are people out there who have experience in dealing with this..and who have emerged the other side with their sense of humour intact!! :squeeze:
13th November 2004, 12:12 AM
Hello Pikey here , just a quicky to welcome you to the site .The treatment of Scoliosis has come along way lately and is progressing at a rapid rate .I know as a kid I never blamed my parents for my condition but really appreciated their love .Welcome to the site and i hope you find the answers and a lot of new friends here , Scoliosis isn't the end of the world .take care ,Pikey.
13th November 2004, 01:29 AM
Hey! Welcome! I'm 16 (well, almost) and from Chicago. I had surgery in July '03 to correct my 45 degree curve. I want to echo everyone elses advice. Pay attention at appointments and make sure he wears it. But assuming he's usually responsible about things, assume most of the time that he's wearing it. I know it drove me insane when my mother would suddenly call out in the middle of dinner, "hey martha, are you wearing your brace?" He probably will adjust fairly quickly. I was miserable in my brace after my operation, but I adjusted pretty quickly into my pre-op one.
13th November 2004, 06:08 PM
My names Becky, im 18 from Bolton UK. I think iv got a lumbar curve of around 40ish degrees and will have surgery early next year. Iv never worn a brace though.
Hey guys the next new member will be 200th member!!
13th November 2004, 06:10 PM
No? I think we're just 173 :roll:
14th November 2004, 12:20 AM
Sorry, got the late bus but :wave: welcome to SSO Ryan and Dee! I'm 16 from Bedford and have had a pre-op brace, surgery and a post-op brace so I'll do my best to help.
I lined my braces with special brace liners from a company called Gilbert and Mellish in Birmingham that import them from America. They're seamless and make everything more comfortable and a lot less sweaty. I'd offer you my old ones but they're worn down to about three threads each and a little disgusting :roll:
Yeah, next member 174 ;-)
15th November 2004, 07:39 PM
i clicked on the last new member and their member number was 199
15th November 2004, 07:41 PM
in fact ryan is 201?!?!? im confused now! it said 199 the other day
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