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28th March 2006, 05:34 PM
I'm Katiecustard's mum and I have joined this support group on behalf of Kate and me (Kate does not have internet access). Kate is 23 years old and a single mum with 2 beautiful boys aged 5 and 3. The boy's father has disappeared off the planet so no support there but that's ok because they and Kate have their nanny and grandan (that's me and Kate's step father) to support them all.
Kate's story so far:
We went to see Mr Harrison at The Royal Orthopaedic hospital, Bolsover Street, London on Friday. This was a private appointment to see if a) to assess Kate's back and b) if treatment was needed, whether this could be funded under the NHS. After xrays, Kate's was diagnosed as having Scheuermann's Kyphosis measured at 82% (35% would be normal for her age). The wheels are now in motion for surgery under the NHS (we are promised) in about 15 months: I suspect that's not a bad waiting period.
Kate was initially very angry at me for not getting her "back" seen to when she was a lot younger. I don't actually know how I missed it, although Kate always had a ramrod straight back and it was only when she was in her early teens: always slouching and constant nagging from me to "pull her shoulders back" landed on deaf ears as only teenagers can! Her father (we divorced some 18 years ago and who died about 10 years ago) also had "round shoulders" but he always said that was because he was 6'4 and was teased relentlessly at school because of his height. Kate too was teased at school because she was quite well endowed in her early teens and tended to "round her shoulders" as a distraction. Perhaps that's how I missed it or perhaps it was pure ignorance (or denial): I just thought she took after her father.
I have read some of your discussions and looked at some of your photos (scarey). It would be really helpful to know what's in store as neither of us have a clue to the procedure.
Kate is a very fit girl (skinny but very strong) and she rides her horse daily, mucks out 2 other horses, etc. so is really fit. She does smoke, however, not much, but it looks like those of you who were smokers gave up before the op (not surprising considering the length of the op).
As I said the hour's consultation with Mr Harrison was not very informative and both Kate and me would be so grateful for your support and advice.
You may have guessed that I've never engaged in a chat room before - perhaps I'm not too old to try something new after all! I've just noticed I should have posted this in the Kyphosis form so I'm going to copy and paste it there too!!!
Hope to hear from you.
28th March 2006, 06:15 PM
First of all :welcome: to you and your daughter to SSO you have come to right place to get the information we now have a good few members with Scheuermann's and a lot of surgery experience both John (zerodegrees) and phil along with Andy and Sally have all had surgery Scheuermann's.
Your daughters story seems to be no different from a lot of ours so don't blame yourself for not getting things checked out whe your daughter was younger. I had the same reaction from my parents about standing up straight etc etc and i had a lot of the bullying at school.
I am once again looking into surgery for my Scheuermann'sm but it isn't the right time at the moment as i have a young toddler and am in the middle of an MSc and i'm 35 and married so i am kind of used to living with my back.
I think your daughter will miss her horse riding as that will not really be allowed for at least 6 months after surgery and she is going to need a lot of help bringing the children up so gran and grandad are going to be very busy i think.
I would ask Phil or John about the restricitions they had placed upon them or read some of the posts in the Kyphosis forum theres tonnes of information in there that should help you.
Once again welcome to the site
28th March 2006, 06:54 PM
Thanks Mark for your prompt reply!
28th March 2006, 07:03 PM
Hi and welcome to SSO.
There's no doubt kyphosis is a challenging surgery, but don't beat yourself up about not getting it seen to before now.For what it's worth, I believe with advances in spinal instrumentation and surgical techniques, she's better off having it done now than perhaps 10 years ago.
Stanmore is an excellent hospital and we have so many members here who have all come through their surgeries safely.
Once you've settled in and become acquainted with the kyphosis group, they'll be delighted to answer your questions and share their stories.
Your daughter is a very young woman who it seems can benefit both cosmetically and physically from the surgery.If she doesn't have the surgery, there is always the chance that it will keep progressing and cause more pain and disfigurement.However it is her choice.
She's very lucky to have support from you and she'll be able to approach her surgery, safe in the knowledge that she'll have you to help care for the children for the first 6-8 weeks.
Looking forward to chatting more.
29th March 2006, 09:11 AM
Glad you've found us. Ask Mark & Sinead said you've come to the right place!
My name is John, I'm 36 & had surgery for scheuermann's in October. My kyphosis was 80 degrees complimented by a 70 scoliosis curve. Surgery was a complete success with my kyphosis reducing to 39 degrees. Its been a tough few months but I'm nearly through the other side & very happy.
Don't go beating yourself up about not noticing. As you get to know us you'll find your daughters (& your) story is exactly the same as everyone else's! You may or may not know but Scheuermann's gets much worse during teen years possibly due to accelerated sudden growth spurts so what happened with you is classic.
It took me until I was 30 to find out I could be helped & then it was only last year that I swallowed the "brave pill" & went ahead with surgery. The surgery is complex but has a good success rate. Medical advances mean you are now very well protected during surgery from spinal cord damage.
Anyway, if you have any questions just let us know. We're all a bit barmy here but we'll soon have you converted!
29th March 2006, 10:05 PM
Hi there! :welcome2: You've certainly come to the right place as the SSo guys are lovely and will be able to give you lots of friendly and helpful advise.
I'm Ali, I'm 24 and have Spina Bifida with Kyphoscoliosis. I'm going into hospital for a small operation to untrap some spinal nerves at the end of April.
Firstly, like the others have said, please don't beat yourself up about the fact that you didn't notice your daughter's kyphosis earlier. You weren't to know and the most important thing is that something is being done about it and she has your support now and you sound like a lovely mum! :-D
If there's anything we can help with or you ever need a chat about anything...you know where we are.
31st March 2006, 11:11 AM
Does Kate suffer from any pain?
31st March 2006, 11:59 AM
Yes Kate does suffer a bit, but not it appears as much as some of the members I've read about here. Pushing the buggy does the most damage, a combination of leaning and pushing, I suppose. As I have said, she rides most days and that doesn't seem to cause her any problem, but then she's always popping some anti-inflamatory or other, and wouldn't complain about the riding even if it was killing her!! To give you an example, I asked Kate to let me have a list of questions to post on the site, which she said she will let me have this weekend when I see her. He first question, however, was does anyone know if the operation will affect her "seat" and balance when riding - bless her. I think there are more things at stake than riding, but then again she loves it so much!!!!!
Mark, I cannot thank you, Sins, John and Ali, enough for your interest and support. I am completely in the dark about this condition and as Kate says, "you can't even pronounce the words correctly, mum" and she's right. Understandably she is much more knowledgeable than I am, although I'm learning fast, but she only lets me know, also, what she wants me to know!
31st March 2006, 01:24 PM
I have a young daughter, she's 20 months now and getting bigger by the day. So i know what you mean. I think riding may be out for a while i'm afraid. We do have a lot of horsey people on the site especially Blair so you may want to send her a PM. She has a horse and competes in the ring so she may be a useful source of advice.
Whenever you get to post your list of questions i'm sure between us we be able to answer them all. I'm glad we can be of some help surgery can be a frightning thing so let your daughter know we are all here to support the both of you
31st March 2006, 01:32 PM
Hi and welcome.
I had kyphosis surgery in December and am still very much on the road to recovery however things are returning to normal slowly but they are sure getting there. The cosmetic results are great and the pain is getting less and less all the time.
I to had a bit of a complaint with my parents about not getting me checked out sooner and for me having to tackle the NHS much myself, however blame does no good cause its the system and lack of awareness that bugs me.
All the info you and Katie need is about these forums so happy trawling through the threads. Any questions feel free to ask :)
Hope things move forward and decisions come as easy as possible.
31st March 2006, 03:53 PM
Here's a link to a thread started by Emily (RocketQueen) mentioning balance and horse riding
hope its of some help
31st March 2006, 04:32 PM
Hi and welcome to the family.
I'm Maria 35yrs old, have kyphoscoliosis(80 & 90 degs pre-op/60 & 40 degs post-op ). I had surgery in April 2005.
31st March 2006, 04:59 PM
Found Blair's diary today and have been trying to read it in between work! Nice to read about someone who's equally made about horses like Kate is.
Kate rang me earlier, slightly spooked. She's received a copy letter from Mr. Harrison to her GP strongly recommending surgery. The surgury procedure mentioned in the letter, however, is double dutch to us and reads as follows:-
"Single stage posterior reconstruction of the thoratic spine with multiple transverse osteotomies through to posterior vertebral structures" :help:
I'm sure you will all say "oh yeah, that's such and such", but can someone put it in layman's terms, please.
Thanks a bunch and everyone have a great weekend!
31st March 2006, 05:10 PM
Mark, sorry I forgot to thank you for the "thread" about balance while riding - excellent, thanks again.
....I'll get the hang of this sometime soon :idiot:
1st April 2006, 01:10 AM
hi there and welcome to SSO!
i'm becky, you can read my scoliosis details below, and to the left is a picture of how my back looks after surgery.
direct any horse related questions THIS way :D, i've been riding since i was 4 (i'm 19 now) and i got back on a horse at 9 weeks post op (though i've not heard of anyone else back in the saddle so early... the bad news is some surgeons want you to wait up to a year).
regarding kate's riding question, my instructor insists i now sit better. it makes sense: if a surgeon gets any significant degree of correction then your spine will be more balanced, therefore you can sit better etc.
i'm not too hot on medical terminology but i know some of that stuff you just posted. single stage means "one operation" (that's good news, going through two, i think is a huge mental challenge and i salute those who do it). posterior means "through the back", they literally open you up by lying you on your front and making an incision down your spine (sorry that's a bit graphic - i've just had anterior surgery, through my side). thoracic refers to the upper section of your spine. each vertebrae has a number and a letter (a bit like grid references on a map). T1 - T12 are thoracic vertebrae, they should have ribs attached to them basically! L1 - L5 are lumbar, and these are in your lower back, L5 is attached to your pelvis. above them in the neck is your cervical spine and below in the pelvis is the sacral spine (those disks are naturally fused together, they're not "free" like those in the C, T and L sections)
and the rest is where i get a bit lost too! i'm probably wrong but osteotomy rings a bell relating to ribs?!? the others will be able to tell you. in medical terms, "ectomy" means removal and "otomy" or "plasty" i think are the same thing (again, may be wrong) and that means reconstruction or reshaping.
i've probably flooded you a little with information, but your daughter's under what is widely regarded as being very good care. the other thing i'll mention is smoking: it can inhibit the spine's fusion process and i think surgeons reccommend that not only do you give up, but you also steer clear of passive smoking whilst in the early stages of fusion. again, that's probably not good news for you but it's one of those things where the earlier you're prepared the better.
you can easily keep tabs on kate's progress up the waiting list by getting mr harrison's secretary's phone number and asking where she is periodically (perhaps once a fortnight) you'd be amazed how often pieces of paper get lost and people slide down the list!
good luck, and any questions, don't hesitate :-)
1st April 2006, 05:25 AM
osteo means bone, and otomy is to do with cutting, so osteotomy is
Surgical division or sectioning of bone
In this case I presume the bones in question are the vertebrae
(ribs are something like costo, so it's easy to mix the two up)
3rd April 2006, 10:28 AM
Normally when an osteotomy is done during scoliosis surgery, it is actually during a salvage surgery to rebalance the side view of the spine in someone who has a forward lean because of old fashioned rods that don't maintain the balance of the spine. In that case it involves cutting a wedge of bone out of the back of one or more of the vertebrae, and using the rods to pull the spine "closed", which corrects the forward lean by recreating a lordosis (the inward curve at the back of the waist).
I would imagine therefore that as it is for Scheuermann's kyphosis, the osteotomies will be done at the apex of the curve, to compensate for the wedging of the vertebrae there (Scheuermann's is diagnosed based on 3 adjacent vertebrae being wedged by 5 or more degrees each - ie they are shorter at the front than they should be, a sort of collapse at that level).
Hope that helps a little!
3rd April 2006, 07:31 PM
Hello Katies Mom, :welcome:
Here are some websites. I also have a great book on scolosis surgery....cant recall the author and I do not have the book with me but if you want to email your address, I would be more than happy to mail the book.... of course it would be snail mail coming from the United States. firstname.lastname@example.org
My mother went through guilt because school found a curve in grammar school and recommended a brace but I was too stubborn to wear one. I was also an early bloomer and tried to hide by slouching. To this day, there is no guarantee that a brace works. They did find the curve before I bloomed around 12 so I say Kyphosis is a disease and is not caused by slouching but of course it does not help.
I was just diagonosed at age 43 in 2005 that I had Schuermanns Kyphosis and degerative disc disease 92 degrees. I have seen other othorpedic doctors starting after my son was born in my 20s. I received all kinds of strange findings and recommendations. I had one tell me that I should get a breast reduction...not that well endowed 36D and another tell me that the progression of my curve is my imagination and that the pain was caused from depression so there is definitely no fault of yours for your daughter's late diagnosis. Technology has improved tremendously....there is now a lab grown fushion material that is being tested to replace cutting bone from the hips and ribs...for us that had the surgery...this is a big breakthrough.
If you have any questions there are a few of us that have had surgery.
Curvy 92 degrees Schuermanns Kyphosis w/ degenerative disc disease
Surgery date Feb 10 2006 40 degrees Age 44
Stanford Hospital, California
3rd April 2006, 08:14 PM
Heres the link to a book you have, i don't know if its the same one.
How are you feeling post op that sounds like a great correction.
6th April 2006, 06:43 PM
Thanks everyone for the feedback. Been a few days since I checked the site as I've had to get back to actually working for a living!
Becky, I will definitely direct Kate's horse questions your way and thanks for translating the medical terminology that was in the letter from Mr Harrison - gosh if you don't think you're medically terminology minded, heaven knows how much someone who is knows!!!
Curvy, hope you're feeling ok. I wonder when that lab grown fusion material will be available. When we went to see Mr. Harrison, he said he was researching a new type of disc material, didn't give any details, but again great news.
6th April 2006, 07:14 PM
there's a fine example of someone more terminology minded than me: titch! although compared to a lot of people around here my experience of scoliosis has been very straightforward so it's unsurprising, though i do manage to keep up with my surgeon during consultations these days as opposed to having to ask what every second word meant three years ago.
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