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LindysMom
28th September 2004, 03:11 PM
Hi there. My daughter was recently diagnosed with congenital scoliosis. She's only ten months now and was about eight months old when she was diagnosed. Her doctor has told us that she needs to have corrective surgery when she is about 18 months old. My husband and I are so scared and heart-broken over this. I'm looking for other parents who have children with this condition who have been through a similar experience. I don't know what to expect with the surgery and I'm going out of my mind imagining the worst. I can't stand the thought of her hurting. Any words of adivce or comfort from anyone who knows anything about this would be very welcome. Thank you.

BlueIce
29th September 2004, 09:43 PM
well, I can't really help you since I've had my surgery a month before turning 20. But there are some people over here who've had surgery as a kid, and parents as well.
Try not to be too worried. I know it's hard, but lots of us have gone through surgery and you'd be amazed of what they can do nowadays. On the other side, imagining the worst isn't always such a bad thing. I did that too and in the end I had to admit that it wasn't as hard as I expected it to be.
Hang in there! You'll get more help very soon :-) And welcome to the site btw.

titch
29th September 2004, 10:49 PM
Hi,

:welcome2: There are several people here who had infantile scoliosis, including Kimberly (jfkimberly) who had surgery when she was about a year old, Toni (tonibunny) who had plaster casts and bracing from very early, and there is also Andrea who is Erin's mum - Erin has just turned 2 and is currently wearing a cast to correct her curve.

I can only imagine how hard it must be to have your daughter going through this. I hope that we can help you - at least we can listen and be here for you, and between all the members there is a lot of experience and knowledge.

DublinPauline
29th September 2004, 11:15 PM
Hi
Welcome to SSO! I am 38 and have congenital scoliosis. I was diagnosed at two but didn't get treated until I was 10 - Big Mistake. :-)

You'll find my story in the Medical History thread and there are some photos of me in my brace age 11 and following surgery aged 13 in the Gallery.

Toni here is very up to speed on treatment for infantile scoliosis and will be able to reassure you about the success of current treatments. There are also a couple of other Mums of young children going through plastering and they are very well versed on the treatment options.

I have a (nearly) five year old girl and know I would find it difficult to deal with the prospect of her having surgery but it really will set her up for life. Don't forget, we're all here to support you any way we can.

Where are you based? I'm in Dublin (Ireland!),

Amazed Jean
30th September 2004, 03:39 AM
Hello I'm Amazed (Jean) I have untreated scoliosis that just grew and grew and grew. I am now 53 years old and am 4'9' tall and I should be 5'6"(they figure this out from the length of my arms. I also have between 10 -15% lung capacity. My torso is twisted and distorted to make room for all my bones and organs. I have a hunch shoulder and have lots of things that ache and burn and are miserable. I was untreated because we trusted one doctor and kept listening to him say that it shouldn't progress and it wouldn't give me any trouble. Now my quality of life suffers greatly. I am on full time oxygen and probably soon go to biPap at night. If I could just talk to you person to person it would be to say, First trust yourself. Then get a doctor that knows what he is talking about and then ask questions,ask questions and ask some more questions. Keep a notebook and write down what doctors say and repeat it back to them until you are sure.until you are talking together about the same things. If you have to find another doctor and start over do it but DO NOT do nothing. I don't want to scare you. I am a Mom of a 27 year old daughter,. I have a great husband. But I am also miserable a lot of the time because we didn't do more aggressive research and not many people knew much about scoliosis when I was young. My mother is now 85 years old , has raised seven children, 15 grandchildren and 10 great grandkids and has lived through some very ugly and difficult things (totally unrelated to my scoliosis) and her one regret - that she still crys about, is that she didn't know what to do when I first showed signs of scoliosis years ago.

jfkimberly
30th September 2004, 07:56 AM
Hi Lindy's Mom! Welcome to SSO. You are so fortunate to have found this site... I wish my mother had a place like this when she was dealing with my diagnosis and treatment 30 years ago.

As Titch said, I have congenital scoliosis and it was already very severe at diagnosis (just after I was born), and worsened despite plaster casts. When I was 10 months old, I had my first operation... it was stopped due to a complication. I had a second op at 11 months, during with I had fusion of several vertebrae in my thoracic spine. A third operation at 18 months corrected pseudoarthrosis. I haven't had surgery [for my scoliosis] since then. I just turned 31 on Sunday, and my fusion appears to be solid, but I've had compensatory curve and rotation below the fused area. I'm currently seeking a consultation to see if I can get some correction of this. I see my third orthopaedist since July on October 19th... hopefully it's true that the third time's a charm.

What kind of surgery do they anticipate doing when Lindy is 18 months? Is it the Vertebral Body Stapling (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=432)? Not a fusion, I hope? Are they doing anything to attempt to stop progression of her curves in the meantime? Casting? Brace?

Let me know if I can answer any questions for you. Oh! I can tell you that with my surgery happening when I was so young, I don't remember a bit of it. I don't have any pain in my spine (I do have some rib and muscle aches, though... but those are relatively new and a result of the non-fused portions progressing).

Kids are very resilient. If surgery is necessary, it will be hard to face in the present, but trust me... she won't remember much of it. Do everything you need to do to protect her quality of life in the future, no matter how hard it may be. She'll thank you for it later.

(Sorry if this is a bit disjointed... It's rather late here, and I've been really busy (read: sleep deprived) lately.)

andrea
30th September 2004, 10:43 AM
Hi Lindy's mum. I'm Andrea and my 2 year old daughter Erin has ideopathic scoliosis. She is currently in her second plaster cast, which is attempting to at least hold and hopefully improve the curve, which currently stands at 36 degrees. I remember only too well the initial emotional rollercoaster that you go through at diagnosis and my heart goes out to you and your family. However, it does get better. As you meet people who have been through it, or going through it at the moment, and you realise that there is life on the other side of surgery or treatment, your emotions settle down.

I'd be interested to hear more about you - where are you from, what surgery are they proposing and what treatment, if any, she is receiving at the moment?

Whatever surgery she is going to have, be assured that it will worry and trouble you far more than it will her. She'll bounce back and won't remember any of it, whereas you'll be the one sitting there wishing away the minutes of surgery and recovery. We come home the same day after Erin's anaesthetic and she's full of beans straight away. If she remembers it, it doesn't trouble her in any way.

Please stay in touch and between us we'll help in any way we can.
Take care
Andreax

tonibunny
30th September 2004, 10:59 AM
Hi there Lindy's Mom,

Welcome to SSO! I grew up with scoliosis, having been diagnosed at the age of six months with a 60+/40+ degree double curve. However, my case was idiopathic (no known cause), so I am not as up-to-speed on treatments for congenital curves.

I will do some research for you.....there are many brilliant treatments for infantile scoliosis now. These include telescopic rods that hold a childn's spine straight while they grow, so that they don't need to be fused immediately, and also serial corrective plaster casts, which have been successful in "curing" curves of under 50 degrees in children aged under 2 with idiopathic scoliosis (though I am not sure this method can be used with congenital cases).

Hopefully I will be able to reassure you about the effect of treatment on your child.....I spent a lot of my childhood in hospital and it was perfectly normal for me, I had a great time playing with the other kids there and didn't find it at all traumatic. I actually used to look forward to going in! I wore plaster bodycasts and Milwaukee braces for the first ten years of my life, and then had my first fusion at the age of ten. Andrea is right - this is probably tougher on parents than children, who take everything in their stride. Children also deal with pain a lot better than adults - I cannot remember being in ANY pain from the surgeries when I was ten, whereas I was in a huge amount of pain when I had further surgery eight years later.

Please try not to worry - we are all here to support and help you. Do you know the degree of your daughter's curvature?

Best wishes,
Toni xx

sins
30th September 2004, 12:21 PM
I'm a big fan of the National Scoliosis Foundation in the USA.They so a lovely simple article to explain why surgery is considered for congenital scoliosis.
http://www.scoliosis.org/resources/medical.../congenital.php (http://www.scoliosis.org/resources/medicalupdates/congenital.php)
If there's any way we can offer help and support we'll be happy to do this and we can try to locate parents in similar circumstances to your own. I know it's heartbreaking to face such a big surgery in such a small child but it's better than leaving things to chance.
If all goes well it may be her one and only surgery and she can face a normal life at school without interruption for medical treatment.
As for worries about fusion surgery in a small child they fuse far less of the spine than in the past.She will still have growth as normal above and below the fusion bit in my opinion it's better to have a shorter straight back than a shorter crooked back.
Don't be afraid to ask your doctor questions about her lung function and how this surgery will impact on it.If you can get a second opinion as well.
Sinead

LindysMom
27th October 2004, 04:09 AM
Thank you to everyone who responded to me. I can't tell you all how much better I feel to have found this forum. I don't feel so alone in this now. We are scheduled to bring Lindy back to her doctor next month to further evaluate her progress. I'll have more information on her situation to share with you all then. When she was diagnosed I did not ask many of the questions that I now have. My head was sort of spinning from the shock of the news.
I found each of your responses very helpful. Please keep them coming. I desperately need the support from people who can understand what we are going through.
Some of you expressed an interest in where we are from. My family and I are from a small town in Louisiana. (U.S.A. for those of you who are not familiar)
I'll be back with more info. soon. Wish us luck and I'll remember you all in my prayers. Thanks.

jfkimberly
3rd December 2004, 03:29 AM
Lindy'sMom, I am so sorry I haven't responded to your posts, yet. I started to a couple of times, but either had to run, or wasn't quite sure what to say. I didn't want to scare you with all the things that I went through, so when I got to a certain point in my previous posts, I deleted it all and promised myself I'd come back to it later... Anyway.

I have congenital scoliosis, and it was pretty severe... Your daughter is already in a much better position to me, because by the time I was 10 months old (when Lindy was just being diagnosed!), I'd already been through failed casting and they attempted my first spinal fusion. At that first operation at 10 months, I arrested on the operating table, and they had to stop the operation to revive me. They waited a few weeks for my wound to heal, and then tried again. This resulted in correction to 60 and fusion of my thoracic spine at 11 months.

At eighteen months, they had to go in to re-fuse because the original fusion didn't take (they used a cadaver bone graft in the first one, because I didn't have enough of my own bone to harvest, but they took some of my hip bone for the second fusion).

Because of the severity of my curve and the early fusion, I've got 30% lung capacity. Based on armspan, it's estimated that I would have been 5'5" tall, but with the scoliosis and fusion, I stand at only 5'0" with shoes. Neurologically, I'm intact. I can walk, have above average intellect (if I say so myself), and I'm pretty happy to be alive. And my case seems to be much worse than Lindy's...

My spinal anomalies seem to be part of Klippel-Feil Syndrome. Consistent with this syndrome, I also have some heart valve malformation, short neck, slight facial asymmetry, and a single "horseshoe" kidney. Due to the reduced lung capacity, I had frequent pneumonia when I was very small, but the pneumococcal vaccine put an end to that when I was between 5 and 7 years. Now I'm just basically breathless with the slightest exertion, and I don't breathe sufficiently when I'm asleep, so I just started using a BiPAP machine to assist me at night (ugh!).

But Lindy's ahead of the game if they're still only evaluating her and she's already over a year old. Plus, if early surgery should prove necessary, there are alternatives to fusion for Lindy that weren't available in 1974 when my scoliosis was progressing so rapidly... As Sins mentioned, there's a doctor in San Antonio (or Austin... I never did figure out where he's based) who invented a Titanium Rib Implant that can be adjusted as Lindy grows to help straighten and stabilize her spine and grow her chest cavity without fusion. Being in Louisiana, you're within driving distance... his name is Dr. Robert Campbell... just Google for information on him.

Gah... I have so much more to say, but I don't want to overwhelm you. Please please research your options with Lindy, and ask me anything. I'm happy with where I'm at, considering what was available when I was an infant and my prognosis at that time, but I want so much more for your little girl!

LindysMom
4th December 2004, 09:34 PM
Hi Kimberly. Thank you so much for your response. It means more to me than you know. I'm going to find out as much as I can about Dr. Campbell, as well as the titanium rib. Lindy is going to go for a CAT scan in 9 days from now. I'm dreading it. On our last visit with her doctor we found out that the area where she has congenital kyphosis is actually worse than her scoliosis. That's where her fusion is to be done. I'd rather avoid a fusion surgery if possible, but I'm not optimistic about our chances of doing so. Do you have kyphosis as well as scoliosis?

Her doctor assures me that there won't be much pain assosiated with her procedures. I don't know that I believe him. I suspect he's trying to prevent me from having a total emotional break-down! He promises that they'll keep her heavily sudated so she won't feel much. I just don't know how long they'll be able to keep that up. I just don't like not knowing what we're in for. I feel like I need to mentaly prepare myself. She's only 12 months old, so thre's no preparing Lindy. Poor baby. I can only pray that she won't remember any of this.

Her doctor said that, like you, she will be shorter than she would have been otherwise. I'm not sure by how much though. I'm a little worried about that because I think she is destined to be on the shorter side anyway. The women in my husband's family are shorter than the women in my family. Lindy already seems to take after them. She has very small bone structure. Adult size organs in a small body seems a little scarry. I hadn't really thought about lung function until only recently. Her pediatrician also thinks that being pregnant could possibly not be a good idea for her. Do you have children? If so, what was pregnancy like for you? I hope I'm right in assuming you are a woman. (Kimberly)

Were you limited physicaly growing up? My oldest daughter is a dancer and I would love nothing more than to see Lindy follow in her footsteps. (if she wants to) I worry that she won't be able to do and enjoy the things she'll want to do. I don't want to see her stuck sitting on the sidelines. Were you and are you still active? I hope so.

Thank you again for your response. I found it to be very helpful. Also, thank you for the offer of answering my questions. I have so many.

Holly

sins
5th December 2004, 07:44 PM
Hi Holly,
hope you don't mind me putting my nose in here.I have a 120 degree curve after my surgery.Doctors failed to intervene surgically when they could have and perhaps should have.I have both a short torso and a crooked spine.I think perhaps to have a straighter spine and a short torso is preferable.There's no doubt that her lung function will suffer from early surgery, but that's where the titanium rib might help.if it can expand the rib cage to allow extra organ growth it can make a big difference to her.
As for the idea of pregnancy, it's far too soon to think of such things.
In 20 years time there will be so many reproductive options from surrogacy to goodness knows what else.A friend of mine in australia has 21% lung capacity and is trying for a baby.She had her fusion at over a year old.You would never know she had scoliosis and looks really cute and petite at 4 ft 10.She found a respiratory consultant in the UK who had done research into pregnancy with low lung capacity and it's possible to have a successful pregnancy as long as non invasive ventilation is used from second trimester onwards.the delivery would be at 34/36 weeks so don't give up hope just yet.It's impossible to predict that far into the future.
Sins

sins
5th December 2004, 07:49 PM
I forgot to add I have 49% lung capacity and two children

LindysMom
5th December 2004, 08:34 PM
Hi Sins
Gland to have you put your nose in. In fact, I welcome it. You're right. I need to not worry about what could happen in so many years from now. I guess it's just my nature to do that. I just don't want to make a decission now that will end up being the wrong thing later, but I realize that our options are pretty limited. Nothing is ideal with any of this. I'm getting more and more interested in the idea of a titanium rib as this goes on. I intend to find out if it's an option for Lindy.

Thanks for your reply and input.
Holly

jfkimberly
6th December 2004, 04:04 AM
Hi again, Holly.

I have only a very slight kyphosis in my thoracic region. Nothing especially pronounced, and my fusion has been stable in all these years, so the only changes I've seen have been below my fusion, in the lumbar region.

As for pain from procedures, I assure you that I don't remember a bit of it. I had three major surgeries between the ages of 10 months and 18 months, and I have no recollection of them at all. I have one fuzzy memory of being fitted with a cast sometime after my last surgery, but I have no idea how old I was... and I only have a picture of the room/situation in my mind, no hint of whether the casting hurt or not.

I don't know how Lindy will turn out... only time well tell. I know that she'll be in better shape than me, though. I was active as a child, but due to my small size and my proportionally-smaller lungs, I was slowed a bit. I ran and jumped and played on monkey bars, just like the other children, but I got tired more quickly. Sometimes, I refused to stop until my parents made me take a break, though. They kept a close eye on me when we played in the pool... I had to get out and rest if my lips were blue. I don't know if it was the cold water or lack of oxygen (I favored swimming underwater, because I'm bouyancy-challenged) that caused my lips to turn blue, but taking a break in the sunshine cured it every time.

The thought of dancing never occurred to me growing up. I'm not well-balanced, and that's always been a bit of an issue. But on top of that, I just never viewed myself as graceful, because I don't gain weight easily so I'm really stick-thin (this contributed to the bouyancy challenge). Not something you want to see in a dance costume. But Lindy might feel differently... especially if her big sister is interested in it. I know I started playing softball because my big sister got into the sport.

My favorite activities as a child were roller skating (my preschool class went to the local skate rink for a field trip when I was 3-1/2, and my mom started taking my sister and I every other Saturday after that), riding my bike (I was 5 when the training wheels came off), and playing hide-and-go-seek in the neighborhood.

I admit that I grew somewhat less active as I got older. I can't really say when it happened. I still do things that are active... the occasional "hike," etc. But it's few and far between, and I stop to rest frequently. On the other hand, I got caught up in the Blackout in New York City last year, and had to walk between 10 and 15 miles from uptown Manhattan to the apartment I was staying in in Brooklyn (I don't know exactly how far we walked, because we got bad directions from some cops and ended up walking a few miles out of our way, and had to then double-back those few miles)... I managed that without a problem, though my sister was very concerned and asked me frequently if I was okay. I was fine enough on the walk, but I just about crumpled when we got back to the apartment building and it finally dawned on me that no electricity also meant no elevator, and I had to go up the stairs to the sixth-floor apartment.

On the other hand, on a bad day (I call them "low oxygen days"), I admittedly have to really push myself to go through the normal routine of getting up and showered and dressed. On days like that, my goals tend to be unimpressive... maybe a trip to the grocery store (by car), just to get out of the house. Maybe I won't even bother with that much. But I definitely have more good days than bad days.

Sins, I think you're right. I think a straighter-but-shorter spine is probably preferable to a longer-but-curvier spine. I think that with my early fusion, I got some stability that has resulted in less pain than I would have had otherwise.

jfkimberly
6th December 2004, 04:09 AM
Oh! Children...

I was told from a very young age that children would be a bad idea for me. So I grew up with that concept in mind, and managed to convince myself that I really don't want kids, anyway. Now I'm 31, and I have an absolute perfect baby niece... and it's got me wondering what my own child would have been like. Even before my niece was conceived, I started looking into the risks (to the baby) of a preterm delivery, and how long I would have to be able to support myself and a baby to reduce the risk of serious problems. I'm not married, and in fact, have never even considered marriage with any of my past boyfriends (currently single, to boot), so the whole question is kind of moot. But I have wondered about it even though I was advised against it.

Sins, I'd love to know more about your Australian friend's consultant.

Amazed Jean
6th December 2004, 07:42 AM
I think everyone else is right. Don't worry about tomorrow yet when it comes to will she dance etc. People with 100% healthy kids worry about that stuff too much. What will be will be in that area. Focuse on Now for your kiddo. She needs you to focus for her now - later she'll make her own choices.

sins
6th December 2004, 12:57 PM
The consultant is called Dr Anita Simmonds.She's a consultant at Brompton hospital in London.I think Vicki and some of the infantile scoliosis girls go to her.The charity SAUK arranged pre pregnancy consultations for my friend over phone and by sending her x rays and respiratory function tests by mail.She got a detailed recommendation by post and Dr Simmonds helped her locate a respiratory specialist in Sydney who would take care of her during her pregnancy.
I will post some reports of women with scoliosis and severe restrictive disease that were sent to me from my friend Merri.They make very encouraging reading for women like you Kimberly who may wish at some time in the furture to plan a family.It's still a high risk pregnancy though.
From a personal level all my spinal growth went into making the curve bigger and not increasing my height or thoracic capacity.I'm 4 ft 10 with an obvious deformity.Had I been fused earlier I would most likely be 4 ft 10 with a straight spine and no obvious scoliosis.
C'est la vie.
Sins

LindysMom
6th December 2004, 04:00 PM
Wow! You've all given me so much to think about. Thanks for helping me put things in perspective. Everyone is right. I do need to help Lindy through what she's going through NOW. I'll be there to help her get through whatever comes tomorrow too. It all makes so much more sense when I hear it from you guys because you've all been through this. (from her perspective)

I appreciate reading your stories. Things don't seem so bleak when I read about how full and good your lives are.

Kimberly, my sister is expecting her first baby. I'll be a first time aunt. I've given my sister two nieces and one nephew. She swears that the love she feels for them is the closest one can come to loving her own child. So think of it this way, you can experience a very profound love and bond with your little niece and won't have to worry about dirty diapers and midnight feedings! Motherhood is the best part of my life, but there is something to be said for getting a good night's sleep! Love your niece, spoil her rotten, take advantage of all the good things that kids bring to our lives and then just send her home to her mom to deal with the diapers.
Holly

jfkimberly
6th December 2004, 09:49 PM
In my efforts to schedule my appointment (which has turned into a big ordeal, and is a project nowhere near completion), I came across a phone number for the Titanium Rib Project. (210) 704-2988 I tried calling it, and it sounds like an answer line, where you leave a message and they return your call. But it's a start, right?

andrea
6th December 2004, 09:56 PM
Kimberly - I belong to another board (shock horror) and someone on that has just been accepted to the TRP. If you need numbers or something, perhaps I can put you in touch? I don't know, just thought I'd mention it.

jfkimberly
6th December 2004, 10:03 PM
*sigh* Well, I've got about 30 phone numbers. The problem is that I'm an adult. So the numbers aren't much use. Initially, Humana (the provider contracted with Tricare) lost the referral. So I called last week and found that out, and the clinic resubmitted it, and it went through right away... but then I learned today that they put the referral through to the wrong Dr. Campbell... they had me seeing a "general surgery" physician in Hot Springs, Arkansas, which would have been an utter waste of everybody's time. So I finally got the referral fixed and I'm set up to see the right Dr. Campbell... but when I called to schedule the appointment, I was told "He only sees children." I told her I was aware of that but my ortho referred me anyway, and she didn't care. So I couldn't make the appointment.

But when I saw Dr. Cyr/Dr. Schmitz in October and all this started, I was told to contact them when my referral was approved and they would make the appointment for me. So I'm trying to contact them again, so they can do it... but nobody's answering the phone there this afternoon. *grumble* I don't think I'll be getting in to see Dr. Campbell before my trip... which means I won't get in until sometime in January, because it'll be time for Christmas and New Year's when I get back.

And I'm SO SICK of being on the phone! *grudgingly tries calling again*

andrea
6th December 2004, 10:12 PM
That all sounds like bureaucratic pants Kim!! Sorry to hear you're having to go through all of this just to get an appointment. Fingers crossed for you having someone pick the phone up soon.

jfkimberly
6th December 2004, 10:16 PM
As it's fast approaching 4:30pm, I don't think I'll be getting through today. I was hoping to make an appointment for the end of this week, so I could pop down there and drive back up over the weekend... then I'll be back in time to leave for Paris on Tuesday. But it doesn't look like that will happen.

andrea
6th December 2004, 10:21 PM
That's a shame. It's always frustrating when things don't go to plan (even if they are only our plans). Look forward to Paris instead - you'll have a great time.