View Full Version : Panic!

04-23-2004, 06:01 AM
I've just been told that my 16 year old daughter will require surgery to fuse her spine and I'm currently scared stiff. Our doctor moved from "I think we should do something about this" to a list of possible problems - starting with death and moving down through paralysis to infection and the possibility of further surgery - before I could even catch my breath.
We've been sent away to think about it for a couple of months and come back with a list of questions. I could really use some advice from someone who's been through this.
My daughter has cerebral palsy (spastic quadraplegia) and is very dependent. We have had some fairly major surgery for various things in the past but nothing as big as this.

04-23-2004, 01:10 PM
I was one of those patients that surgery was the only option. I had kyphoscoliosis and it was progressing at a huge rate. My list of future problems was the same. I was 13 and my whole family was terrified. For me the surgery was a godsend! The majority of my spine is fused except for the lower 6 inches. I am permanently ram rod straight! I have had none of those dire predictions come true. In fact, I am 28 and happily married. I guess the question is whether or not you daughter's future will benefit from this. Do you think fusion will give her a better adulthood? For me the answer was a solid yes. My advice is to try and ignore the predictions for the moment. How will this surgery enhance her life? Will it make current health problems easier for her? Are there current problems caused by the curvature? An example would be my dad. He had spinal fusion because his kyphosis curve was pushing his heart and lungs into his ribcage. They couldn't perform normally. The surgery eased this and he has had no more problems. I sincerely hope that this gives you a way to think about the decision without the panic taking over. You know what is going on right now, so consider that 1st. Then you can add in the future possbilities.

04-27-2004, 08:30 AM
Thanks! Three deep breaths and a large gin later I am thinking a bit more like a rational human being.
It was just the shock threw me for a bit: I went into the consulting room with a healthy, if severely disabled youngster and came out with one who needs a major operation, is probably too thin (I thought she was doing OK) and may in any case have a restricted life span - something no-one else had suggested to us - and it was just too much all at once.

Mary Lou
04-27-2004, 01:24 PM
I'm glad to see you've calmed down a little. I understand why you are so concerned and you should be! We Moms all have our moments of "freaking out" when it comes to our children's Scoliosis. I'm sure you have never taken surgery on your daughter lightly and now isn't the time to start. Have you thought of a second opinion? Usually, unless the Scoliosis is causing problems with the heart or lungs, surgery isn't an emergency situation. You have time and make sure you take all the time you need to research the surgery, the doctor, etc. There are several good books out there telling about the surgery, which you can find at the book store on this forum. Also, there are many people on this forum who will gladly tell you their stories of surgery. Hang in there and know you aren't alone in this.
Mary Lou

04-28-2004, 07:28 AM
Thanks Mary Lou. We're going back to see our consultant in about six weeks with our list of questions - which I think will be rather more pertinant thanks to reading the info on this site - so I'm hoping to have a much better idea of exactly what's likely to happen then.
Once that's happened we'll have plenty of time to think as, being the UK, we'll go on the year-long waiting list. You're quite right, it's not an emergency situation. The idea seems to be to stop it from getting to that stage and therfore improve my daughter's quality of life in the future.

06-08-2004, 11:06 PM
hi my name is jasmine and i am 15 years old. i have been detected with scoliosis but my doctors says i dont need a brace because my body is still growing but im scared because im young an active and i feel my life getting tired i think im going to be all deform. im embarresed to tell my boyfriend but people notice sometimes rib sticking out.My boyfrined says im perfect but he doesnt know the truth about my spine. i mean you cant really tell unless you stare hard, but i feel bad withing my self because sometimes i can't even help my mom mop or something because i get tired of bending over. i feel a hard pinch like a knot then i have to bend over in a chair to strecth my back but please help me feel better. Im so uncapable of making myself feel better because im skinny and wear tight shirts and my right side be always sticking out. Im worried i feel awkard. if u would kindly reply me at my email i would appriciate that. it is Jjasmine832@aol.com

Thank you

06-10-2004, 11:15 AM
Hi Jasmine
I'm sorry you are feeling so bad about yourself at the moment. Just a couple of things to think about:
Nobody, but nobody, has a perfect body - everybody worries about something. What really matters is the person living in your body, the real you, and I'm sure that's who your boyfriend thinks is perfect.
I think you should tell him about your scoliosis and how you are feeling. It's almost certain that he'll reassure you and make you feel a whole lot better about yourself. If he doesn't then he might not be good enough for you anyway - you might want to show him the door.
I'm sure that whether you can help around the house is the last thing your Mom is worrying about - I bet she's just worrying about you and how to help you get through this and get better.
You might want to talk to your doctor about how worried you are about what's going to happen to your body long term. He or she may well be able to dispell a lot of your fears. Whatever the doctor tells you it will be less frightening to worry about what's real rather than the much worse things your imagination can come up with left to its own devices - that's what I've always found anyway.
Idon't know if any of this helps but just remeber that we're thinking about you.


06-13-2004, 06:10 PM
Well, we've been back to see our consultant and my daughter is now on the (long) waiting list for surgery.
Much better consultation this time - we saw the consultant throughout rather than spending time with the registrar who scared the like out of us last time. I took my list of questions and he went through them with us (my husband managed to get time off work to come this time which helped a lot) one at a time.
The x-rays were convincing - my daughter seems to be trying to do an excellent imitation of a corkscrew and she will need to be fused from about T3 right down to her pelvis. Whether she needs one operation or two will depend on how flexible her curve is when we get to the head of the list.
For the moment we have to spend some time trying to get her to understand what is going to happen to her and why. That's going to be a toughie as her understanding is limited and I don't want to just scare her. I think I'm going to have to either get hold of a model or build one out of cotton reels in true Blue Peter style!
Surgery will probably be a bit under a year away so we've got a bit of time although if her scoliosis progresses fast we would be bumped up the list as being urgent. We go back in October for more x-rays. Think she'll glow in the dark soon!

06-14-2004, 03:16 PM
have u heard of ASCO scoliosis treatment?

06-14-2004, 04:07 PM
Hi there,

I've visited the ASCO website and there would be quite a number of problems in trying to use it.
It aims to treat idiopathic scoliosis only and that is not what my daughter has - her problem stems from the brain damage she suffered at birth and, I think, would qualify as being part of a 'disease process' which the site says is a contraindication to treatment.
In addition, she would not be capable of the exercises which form part of the treatment as she has very little voluntary muscle control of her back - in fact, I wouldn't swear she has any.
Last, but not least, as far as I can see it's not available in the UK.

Thanks anyway but I think it's going to have to be surgery for us.


Mary Lou
06-15-2004, 06:22 AM

I don't want to scare you, but most doctors say the most important time to wear a brace is while your body is still growing. The purpose of wearing a brace is to try to hold/stop the progression of your curve. If you can, please get a second opinion.

Mary Lou

06-15-2004, 02:04 PM

You are still growing and your doc says you cannot wear a brace BECAUSE you are growing? Sorry, but your doc is talking complete nonsense! A doctor, also when he has studied for years, can be wrong. Doctors do not know everything and they can be wrong like everyone of us! Therefore I do not think that it is a good strategy to trust your doctor too much. It is your body, your pain and your future and therefore your should do some research. At least, please, please get a second opinon!

best regards,

09-08-2004, 09:47 PM
Hi Lorrie,
My name is Tiffany. I have been through 3 surgeries for my scoliosis. It is definitely not fun...but ya gotta do whatcha gotta do..... God Bless

12-21-2004, 10:33 PM
err this post is for jasmin
[sorry first time on this thing - hope it works right]
anyways. im 17 and i've had scoliosis since i was born (im a premie) it is ABSOLUTELY POSITIVELY IMPERRATIVE that u talk to another doctor (no offense) but, the MOST IMPORTANT TIME to be wearing a brace is when u'r growning, so that the brace can "adjust" as u grow (does that make sense?) i've had to wear a brace since i was 6 until i was 16! that's 10 years! and my spine is still not completely straight. i'll admit i hated wearing it and never wanted to. my school has uniforms and i would DIE before wearing it too school. it was just so hard y'know?
well anyways my point is....plz get a second opinion bcuz once u stop growing, that's it. ur' spine can't 'adjust' (like it could while u are growing) ...yea

02-01-2005, 12:46 PM
Having a bad day today. We haven't got a date yet but we did get a letter from the hospital today saying that we'll be admitted in the next 6 - 10 weeks and it just made eveything a bit immanent. We've also been told we'll be called in for pre-op tests about a fortnight or so before. Can anyone tell me what these involve? - when Geeve has had surgery previously we've just been admitted the day before.

We have started preparing her for the op - I managed to borrow a life-size plastic spine from a local hospital and that was useful. The trouble is that, to help her understand anything, you need to do lots and lots of repetition and she's started to get upset when we mention it. She's used to wearing splints to keep bits of her straight (arms, hands, legs not to mention the brace) so we've tried to explain that it's a bit like having a splint put inside so her back will be straight all the time. I'm so worried that I'll pass my feelings about it onto her so I'm trying to be very calm (that special calm voice you keep for when you're in a panic, my other daughter says!) Her school is helping - we've asked them to just treat it in a matter of fact way and talk about it just in ordinary conversation. Any suggestions of how to get her to understand without scaring her witless would be very welcome.


02-01-2005, 02:07 PM
[i]We've also been told we'll be called in for pre-op tests about a fortnight or so before. Can anyone tell me what these involve? - [/B]

For my daughter's surgery there will be the usual pre-surgical blood workup and a series of "bending x-rays", which seem to be, well, x-rays while bending to the side. This apparently gives the surgeon a sense of how much correction is possible and they use this to determine the nature of the hardware (rods and so on) they'll use.

New Zealand

02-01-2005, 05:23 PM
Hi Lorrie! I had herrington rods put in when I was 13 and can understand how hard this is! The post-op tests that I had included checking my breathing and blood pressure as well as final x-rays of my spine. There were more but those are the ones I remember.

I remember that the adults had alot to say about the surgery, my mom was positive that I would be paralysed (I'm not!), but they never listend to me! If your daughter is able to express her feelings (some youngersters just can't do that very well) have her talk about what she's feeling. This is extremely stressful and frightening and children tend to bottle those things up. By the time of surgery the last thing I needed was more surgery talk! Perhaps working on those feelings she's living with would help get her to understand better. There's something about fear that blocks understanding.

I wish that I was there to talk to her. I'd love to let her see my ramrod straight spine and let her know that everything came out just fine. It's hard and scary, but it turns out just fine in the end.

God bless and keep all or you!

02-07-2005, 05:34 AM
Thanks folks.
It's really hard for Geeve to express her feelings - she has not got a lot of speech and it's hard to get more than just 'sad' or 'fear' out of a symbol book. We have told her it's Ok to be scared and we're scared too - but that we'll be there to look after her.
Maybe I should just encourage her to have a good cry rather than trying to calm her down straight away.
I do take your point about getting sick of talking about it by the time you got to surgery. The trouble is G's understanding is quite limited and she needs lots of repitition for anything to stick really. I do want her to be as prepared as possible. She usually copes well with hospitals / surgery etc but this is such a biggie.....

02-07-2005, 04:08 PM
Sometimes having a good cry is the best medicine of all. Heck, even a little bity cry is good medicine! :D Perhaps trying to get her to understand that this like other hospital stays would help. It's scary alright, but it really does turn out okay. Just like other surgeries. And if things happen, then you'll always be there for her.

God bless and keep you!

02-08-2005, 01:26 AM

You might find it useful to get in touch with the
Scoliosis Association (UK). They might be able to put you in contact with parents of children with learning disablilities, who have had scoliosis surgery. Their website is


Another possibility is the Rett Syndrome Association UK.
(Children with Rett Syndrome have learning difficulties and muscular problems and frequently develop scoliosis)



03-19-2005, 11:15 PM
Dear lorrie,

My daughter too has to have surgery for her scoliosis, and she also has Cerebral Palsey. Marisa is 11 yrs old, I do everything for her and she is not going to understand this. i'm heart sick about the surgery, but I know it's the best thing for her. Risa

03-23-2005, 05:15 PM
Hi Risa

It's good to hear from another parent coping with cerebral palsy - although Genevieve is a bit older than Marisa (17). Like you, I have to do everything for Geeve.
Has Marisa had any other surgery? Genevieve has had quite a bit over the years but this is the biggest - and I don't seem to get any better at coping with it.


05-05-2005, 11:37 AM
It sounds like you are doing a great job of explaining it to her. I think your request to the school to treat it matter of factly was perfect. Most kids can adapt to the reality if it is presented in a non dramatic manner without the adults acting scared. Easier said than done and sometimes that backfires because your kid thinks you aren't in tune with their feelings. It's never easy!!