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smedina1
08-12-2004, 02:43 PM
My name is Sue, this is my first time posting. We just found out 4months ago my daughter Hannah has congentile scoliosis. She has 2 vertibraes that weren't fully developed and 14 ribs on one side and 13 on the other. We've seen 3 pediatric orthopeadic surgeons saying that she'll probably need surgery around the age of 3. They tell me they want to wait and see. She's had all tests related to this to make sure nothing else is wrong and they've all come back great. My question is that they say not to see a chiropractor and I was wondering if anyone has ever seen one and has had good results with it. I have seen a chiro and he says that he can help her. My heart is torn because I want to help her anyway I can, be it exercises, physical therepy or anything else that may help but the orthopedic says not to see a chiro, I want to do the right thing for my daughter. I'm so confused here's one who's telling me one thing and someone else telling me another. The chiropractor is very highly recommended and has been to the best schools. Can anyone help me? Any suggestions????
Thanks

Carmell
08-12-2004, 05:29 PM
Hi smedina1 - welcome to the board.

Having an infant diagnosed with congenital scoliosis can be an overwhelming experience. BTDT. Remember that you are not alone. There are quite a few kids around who have congenital scoliosis and lead very active healthy lives. Congenital scoliosis is a *condition* that you need to be aware of, but there is rarely a quick fix treatment.

A chiropractor who says they can help her makes me very suspicious. What can he *help* her with? Not much, IMHO. The bone structure in her spine and ribs (in that small area) did not form correctly during fetal growth. No amount of manipulation will magically make the bone structure normal again. Same with bracing for congenital cases - a brace can't fix what nature didn't form correctly in the first place.

The best you can do for your little one is to have a PEDIATRIC orthopedist who specializes in spine malformations watch her. She should have checkups and xrays every 3-4 months until age 2-3, then every 6-8 months after. Every persons spine goes through 2 major growth spurts in a life time. One by age 2-3, the other at adolescence. That's why you need to keep a closer eye on her before age 3. For example, my sons congenital curve measured 50 degrees at age 8 months. Six weeks later, it measured 75 degrees. His spine had gone through a major growth spurt and the congenital malformations did not support the growth on the concave side of the curve.

The other thing that will be very helpful to your daughter is to be VERY active. The more active she is, the stronger her back and side muscles will be. My son LOVED to hang on things. The PT told me that its because his body is trying to balance itself, but because of the bone structure, it couldn't. We made him a special "monkey bars" that he could hang on anytime he wanted. Hanging stretches the side weaker muscles and helps them be stronger then they typically would be.

I'm assuming the congenital curve is in her thoracic spine. You didn't mention if they gave you a degree of curvature... most curves over 35 degrees as infants will continue to progress and get worse. Another strong argument for having the RIGHT physician supervizing her care. If the curve in the thoracic (chest) spine gets too severe, it can cause pressure and trauma for the lungs and other internal organs. You don't want that to happen. Again, a good orthopod will know what to watch for. If the docs are recommending fusion surgery, PLEASE get more opinions. Fusion will stop the progression of a curve, but it will also stop the vertical growth of the fused part of the spine. Fusion has its time and place for congenital cases, but it should be avoided for most infants and young children who have growth remaining in their spines.

I hope this helps you sort out some of the variables involved. Good luck and keep us posted.

smedina1
08-13-2004, 06:44 AM
Thank you Carmell for replying to my post. I've never posted before. And thank you for your input. My husband and I have discussed what we should do. He said that he wouldn't mind any physical therepy, he said that would be great. My niece works alot with pt (excuse my ignorance with some of the lingo, I'm not very familar with it, I mean the abbreviations) and she said that she would set up some exercises that we can do and some aquatic excercises. My husband doesn't like the fact that the chiropractor is manipulating her spine. For her being so young.
I'm a little hesitant but I do understand somewhat of what he is trying to do. For now we are not going to take her to the chiro. I'm one who believes in chiros, but maybe for my daughter right now isn't right. We both have to agree on it.
Hannah's degree in her thoratic area was 53 degrees and that was 2 weeks ago. I just want to do something to help her and when the orthopeadic surgeon tells me just to wait and see, I just can't believe that there is nothing I can do, even exercises. We are seeing the best pediatric orthopedic surgeon in Michigan. They are at U of M Mott Childrens Hospital.
Can you tell me how your son is doing and how old he is now? Just being her mom wanting everything right for her. It is so nice to hear that I'm not the only one out there. I've been searching for people on the internet and this site seems to be the best one out there. Thank you so much for all of your help. It's so nice to know that I'm not alone and that there is hope out there.
Thank you again Carmell. Please keep in touch and I will keep everyone posted on how she's doing.

Carmell
08-24-2004, 11:47 AM
Hi smedina1,

You mentioned you are seeing an ortho at U of Michigan... is your surgeon Dr. Farley? I've heard very good things about her. She is supposedly doing research on congenital scoliosis. I've been trying to contact her about her research, but she's very busy and hasn't returned my emails, yet. I'm patiently waiting...

Braydon is doing very well. He is very active and does most everything a healthy 9yr old boy would like to do. He loves to ride his bike, play on the playground equipment, play soccer at recess, dig in the dirt, collect bugs, etc. Nothing slows him down for very long. He also has a very good attitude about having surgery every 6 months (to lengthen the rods in his back/chest). He thinks having surgery is a glorified vacation from school! Not something so emotionally heavy as surgery - silly mom!

As far as exercises, please check with your doc first, but here are a couple of suggestions:

1. When she's sitting on the floor, put a folded towel under her bottom on the convex side of her curve. This forces the weaker side to support her back.

2. Have her stan with both feet flat on the floor. Lift a treat over her head and have her life her arms above her head and reach for it. Move slowly from one side to the other... concentrating on stretching the weaker side. Try to keep her hips level (sometimes you need someone else to hold her hips while doing this exercise). This may be more useful when she's older.

3. Sit her on a large rubber ball (an exercise ball works great). Hold her by her hips and move her body side to side, slowly. Again, concentrate on the weaker side moving and stretching a lot.

There are others... but I'm confusing myself here. If you need clarification on these exercises, let me know. Written word is hard to *show* what I mean.

Good luck and I wish you the best!

smedina1
08-24-2004, 08:40 PM
Thank you Carmell, and yes Dr. Farley is one of the specialist that we've seen. The other is her mentor Dr. Robert Hensinger.
Dr. Farley works very closely with him. He has pioneered this surgery. I'm just not sure who to choose. There both great, but Dr. Hensinger I understand is going to retire soon. So we will probably go with Dr. Farley. She's wonderful to from what we hear. We went and sought out the best. I haven't heard about her reseach on congentile scoliosis but I will try and find out.

I'm glad to hear that Braydon is doing well and that he can enjoy his childhood. Why does he have to have surgery every 6 months? My doctors said it would probably be every year or so. Maybe it's how fast they grow.

Thanks for the suggestions for exercise. I'll try some of them, and I'm going to take her to swim classes too.

I'll keep you up to date with Hannah. I first have to get another appointment for her next 6 month check up and see what they say then. Right now they're telling me whe she's about 2 1/2 or 3 that she'll have surgery.

Take to you soon.
Sue

Carmell
08-25-2004, 01:38 PM
Hi Sue,

I'm glad you are seeing good docs. Dr. Farley did scoliosis surgery on a girl I know this past January. She has some of the same medical issues that Braydon has. She has done very well since surgery and she LOVES Dr. Farley. If you get to ask Dr. Farley about her research, tell her I'm still interested in hearing from her too.

I think swimming will be good for her too. It certainly won't hurt her. I also rememberd one thing Braydon loved to do - he loved (and still does) to HANG on things. He hung on anything he could find. He hung on the edge of the table, the bunkbeds, etc. We made a homemade monkey bar set for him out of PVC pipe so he could hang whenever he wanted to. Hanging and letting their body weight act as counterbalance/leverage is also good for the muscles on the weak/concave side.

Keep up the good work and I wish you the best.

smedina1
08-26-2004, 10:05 AM
Carmell,
I'm so glad to hear that someone else knows about Dr. Farley. It's always great to hear success stories. I'm going to have to put some kind of bar so that Hannah can hand on it. I know that she'll love it. That is a great idea. If I go with Farley I will mention you to her and ask about her research. I'm startly to lean towards her, the other doctor Dr. Hengsinger, who I believe is Dr. Farley's mentor, may retire and I want someone who will be with her throught her life.
I'll keep you in touch. I have an appt with Early On, for Hannah's PT. Which I would never have know about if I hadn't gone on the web. People like you are so great, sharing their experiences and information. I hope she gets accepted.
Take care.
Please keep me updated on your kids too.

greggo72
01-03-2005, 07:23 PM
Our 19 month old daughter has congenital kyphosis. she also has one extra rib. she has 2 extra malformed hemivertebrae. at the age of 1, she had posterior spinal fusion surgery at NYU by Pediatric Orthopedist Harold Van Bosse and spinal surgeon Thomas Errico. They corrected her spinal curve from 51 degrees to approximately 17 degree. She wore a plastic brace for three months post-operatively. We only took the brace off for bathing her. As of January, 2005, her curve has increased to approximately 30 degrees and there is very little fusion of the surgical area. The doctors decided to use metal wiring instead of bars and screws because she is so small. The doctors are mulling over two types of surgery. The first is to add more bone with the hope that the new bone will help any future fusion. The second option is more drastic. It is to perform a combination anterior and posterior hemivertibrae excision. We decided to go to the Children's Hospital of Philadelphia for a second opinion (Doctor John Flynn) and a third opinion to Dr. David Wayne Polly in Minneapolis, Minnesota at the Fairview University Hospital. We also have a son who is 3 and a half who has no spinal problems at all. Has anyone on this thread ever heard of these procedures being done on a child so young and if so, can you give us some feedback or suggestions?

Mary Lou
01-04-2005, 06:38 AM
greggo,

I'm sorry to hear about all the problems you are having with your daughter. Since you are willing to travel to Philly, have you thought about going to Shriner's of Philly for another opinion? My 13 y.o. daughter was seen there by Dr. Randal Betz. Unfortunately, he is a very busy man and it takes months to get into his surgery schedule. However, I've met several people on this forum who have taken their young children to Dr. D' Andrea (spell?) and have had excellent results.

Best of luck.

Mary Lou

Carmell
01-04-2005, 01:13 PM
Hi Greggo72,

It sounds like your little one had fusion surgery that didn't fuse. I agree with Mary Lou - it would be a good idea to get another opinion from a doc who has extensive experience with congenital kyphosis/scoliosis in infants. The excision surgery is a very risky surgery. I know a girl who had hemivertebrae excision surgery at 11 months old to correct a 100 degree curve (curve was reduced to 30-ish degrees). She is now 6yrs old and doing well. No other surgeries have been needed. My biggest reservation (besides the obvious spinal cord risks) would be that she didn't accept the previous fusion surgery (meaning her bone structure didn't fuse), so would another excision/fusion surgery be successful? Maybe they should figure out why the fusion was unsuccessful before trying something so extensive.

My son had fusion-only surgery (no instrumentation) at 11 months old. He is fused from T5-L1. That part of his spine is very rigid. It no longer has vertical growth potential. He is now 9yrs old and doing well. At age 6, he had two vertical adjustable rods placed (one to support the spine and the other to support the right side of his chest). The rod placement has stablized his curves and given his right lung more room to grow. If this technology had been perfected when he was an infant, he would have had even more benefits from this surgery.

I believe Dr. Betz or Dr. D'Andrea (sp? - I even met her briefly and still don't know how to spell her name) at Shriners in Philly would be a great place to start. Another good place would be Dr. Emans in Boston. I would think these docs would be able to give you a good recommendation for the best treatment options for her.

Good luck and keep us posted.

smedina1
01-08-2005, 04:44 PM
Greggo,
My daughter is now 18 months old and we just had her check at the end of Dec. and her curvature has increased to 60 deg from 52 deg.
Our doctor Dr. Hensinger from U of M Mott, told us for us to put
her in a brace (TSLO) he wants it to slow down her increasing curvature. He wants to wait until she's at lease 2 years old to operate. She has congential scolisosis and kyphosis. 2 hemivertabraes and 2 extra ribs on one side and one extra on the other. I'm not sure what kind of surgery she's going to have, but I do believe it will be with growing rods. She gets her brace on the 25th and then she will see Dr. Hensinger Feb 2nd. I'll keep everyone updated on her progress when I can. My husband is out of the country until the end of February and will have to go back. It's been pretty busy here. I try and get on when I can.
Please keep me update on your daughter. I'm was suprised to hear she was operated on so young. I know that Dr. Hensinger and Dr. Farley are very highly recommended and they are out of Ann Arbor, Michigan. U of M Mott Childrens Hospital.
How is your daughter doing otherwise? And do you do any exercises with her?

greggo72
01-09-2005, 11:26 AM
Our daughter is doing great. Before her surgery, we were deemed eligible to receive early intervention for Ariana because she had low muscle tone and she was slow in terms of eating. Since the age of 10 months, she has been receiving physical, occupational and feeding therapy. She is caught up on everything and still receives occupational and physical therapy. She is a tough girl. We were recently told to put her back in the brace also (just like your daughter) to stop progression of the curve and to avoid any damage to the metal wire fixture in her fusion area. We were told to apply for disability for her but we do not feel our daughter is disabled in any way. Her cognitive skills are above average and she is positively not disabled. We are going to ask about the growth rods when we visit CHOP and Minnesota this month. Keep us posted about your daughter. Thank you.

smedina1
01-09-2005, 02:38 PM
Greggo, It's great to hear that your daughter is doing so well. I just had a few questions about the brace. My daughter Hannah hasn't gotten it yet but when she does, did it take long for your daughter to get use to it? And did it restrict her from anything?
Is it hard for her to get up and down from a sitting position? Or to ride in a car seat? I just want to prepare myself so I can make things easier for her. Any advice???? Also, did it slow down her progression?
May I ask why did they operate so early in her age? I'm so happy to hear such great results. I'm so very happy that she is doing well and I know how stressful this all is. How are you doing????
It sure is great knowing that there are other parents out there going through similar situations.
Thanks again for all of the support.

greggo72
01-09-2005, 08:49 PM
Is your daughter going to get a clam-shell brace? that's what our daughter has. It has two parts that are held together by velcro straps. If that is the brace your daughter will have to use, then she may hate it at first. Our daughter learned how to walk while she was in the brace so now she bends down at the knees instead of leaning over. It is relatively light but does have some weight. since your daughter already walks (presumably) it may just throw off her balance at first. as for car seats, all we had to do was loosen her buckle. Make sure the brace doesn't hit your daughters legs while she is sitting because it can cut off her circulation. When we got the brace after a measurement, the brace didn't fit. The top was too high and ariana started chewing it and the bottom ran too low so it dug into her legs. also, she learned very quicklyn how to remove the velcro straps. Many times we woke up in the middle of the night to see the brace totally off and our hearts in our collective throats. Just make sure she wears a onesie under the brace and a bigger onesie over the brace so she can't take it off. while she had the brace on, her physical, occupational and eating therapy continued. the therapists focused more on her balance and how to bend without moving her back. her posture will be good because of it!! The reason Ariana had her surgery so young was because her curve was progressing at a rate of 10 degrees every six to eight weeks and something had to be done. the doctors were worried about her spinal cord. an untreaded kyphotic curve can eventually bend so much as to injure the spinal cord. so as you can see, we had no choice but to allow for surgery. when ariana was 12 months old, her curve was 51 degrees. keep on posting and keep us posted!!

smedina1
01-10-2005, 06:54 PM
Thank you so much for all of your advice. I'm so glad to hear that Ariana is doing so well. I am going to keep in mind what you told me about the brace when we get it next week. I'm going to get some oneies. I know it'll be a bit of a struggle for us at first but as long as it can slow down her progression it'll be worth it. Did yours slow down the progression. I know how heartbreaking all of this is. If you can think of anything else that may help us in please let me know. What you've told me has already helped. When is Ariana's birthday she must be close to Hannah's. Her birthday is June 11, 2003.
Thank you so much for all of your help. I'm hear too if you need a ear or shoulder to lean on.
Thank you so much again.

Alison
01-10-2005, 07:23 PM
Hi Sue

Even though my bracing was the whole other ballgame; being Infantile Idiopathic, I do have two suggestions of things that my Mum did which I thought I would pass on. She was lucky, with my first braces, my straps were at the back which meant I couldn't pull it off :-)

: See whether you are allowed to decorate the brace with stickers (most of the time you should be able to). It makes the brace seem more personal and not just a hunk of plastic, and may be of assistance in your daughter's compliance to the brace.

:We live in Australia and the climate is pretty hot and stinky during summer. I was wearing singlets/undershirts underneath the brace, and Mum found that it helped me stay happier and fresher if she checked the singlet at lunchtime to see if it was all sweaty or not and if it was really sweaty to change it. Wearing an all sweaty singlet feels disgusting and gets uncomfortable pretty quickly. On really hot days Mum was sometimes doing this two to three times a day.

Best Wishes

Alison

smedina1
01-10-2005, 07:39 PM
Hi Alison,
Thank you so much for your reply to Hannah and her bracing.
Like I said she didn't get it yet but your suggestions are very helpful. I'm so happy that you are doing great. And your mom is right there is nothing wrong with you at all, if anything it makes you more special if that is at all possible. Hannah will have to have an operation, they just want the brace to slow down the progession until she is at least 2 years old. She is 18 months old now.
Thank you so much for replying, it sure does help knowing that there are more people going through what we are going through and we can learn from it.
Thank you so much again for caring enough to help us.
Thanks for the sticker idea too, I bet she'll love that.

greggo72
01-10-2005, 08:21 PM
ariana's birthday is june 5 ,2003. what type of surgery do the doctors plan to do with the growth rods? is it anterior or posterior or both. where is hannah's abnormality? ariana's is between T12-L2 vertebrae. (in the middle of the back). If you don't mind me asking, you said your husband is away. is he in the military? i am a police officer with the NYPD and I work with guys who served in Iraq. if not never mind.

smedina1
01-10-2005, 08:31 PM
Hi Greggo, They are really close in age. I'm not sue yet but I believe it will be posterior. But I'm not really sure. I'm going to ask her doctor on her next visit. I have to write the questions down because they are outta there in a heartbeat. The doctors I mean. The nurses are really nice. If I do have any questions they will get an answer for me. Her abnormalities are in the lumbar area. I don't know which ones they are. I need to find that out too. Sometimes I feel I'm not asking the right questions, all of you know which vertabraes they are and I do not. My husband works for Ford Motor Co. and he is setting up some plants in the Philipinnes, Vietnam and China, I believe he was going to go to Twain(not sure of spelling) but I don't think he will be going there.
He's suppose to be overseas for 6 months total. He came back for the holidays and he will come back in late February and then go back one more time. He should be back in April for good.
Thanks for getting back with me.
Take care

greggo72
01-15-2005, 01:49 PM
well we went to the children's hospital of philadelphia and met with dr. John Flynn who has vast experience in ariana's type of case and surgery. he measured her curve to be about 27 degrees. he feels that we should keep the brace on her to contain the curve for as long as possible. he doesn't want to put her through another surgery so soon after her first one. the older she is, the better it will be and the better hardware that can be put into her back. the brace she has on now is getting small so we may have to get another one, although he said that a smaller brace is better for her curve. the brace will be cumbersome for our daughter and detrimental to her muscle growth and therapy, but the doctor says we should choose between the lesser of two evils. The summertime is the worst with the brace because ariana sweats profusely and we can't really take her outdoors too much on hot days. my wife is also worried about waiting too long to do the surgery. if she has it while she is in school, she may have to miss school and she beleieves kids can be cruel. if ariana is wearing a brace during school, my wife is worried about the social implications, scarring etc. I am more concerned with the overall long term health of my daughter and those other things are secondary. have u thought about these things and what do you think? we are going to minnesota at the end of january to visit dr. polly and see what he thinks. any updates with your daughter hannah?

smedina1
01-15-2005, 08:50 PM
I would worry about those things too. But since Hannah is only 19 months old and will probably have her surgery this year sometime, she won't be in school. But I know how cruel kids can be, but I believe it's the ones who are much older. I think if you tell kids what she has and why I don't believe that they will be that cruel. It's usually one kid who does that. But believe me I do think of things like that too. Hannah gets her brace on the 25th and goes to her doctor the following week. He wants to see how her curve is with the brace on and I pray that it will slow down her progression. She also has an appt with a nuerologist, its suppose to be a routine, she has a fatty film at the bottom of her spinal column and they just want to make sure that the nuerologist is aware of it when she has her surgery.
She is doing great. If you were to see her you won't know anything is wrong. We are so blessed.
I attached a picture of my daughters Jenna 3 and Hannah 19 months. They are the light of my life.
Maybe you can send a picture of Ariana too.

greggo72
01-16-2005, 01:33 AM
thats great-i don't know how to open tyour file but here is a pic of our son gregory 3 and a half and ariana 19 months

Alison
01-16-2005, 05:57 AM
Hi

I just wanted to share my 0.02 cents experience on braces, school, kids and whether they're cruel or not. I was wearing my brace when I started school: Kindergarten until Year 2 (4 years of age to 7 years of age, and then again in Year 6 until Year 8 (11 until 13 years of age). I found no problems when I was little; younger kids seem to be a lot more accepting of peers who are "different" in some way and accept them for whom they are and most don't even notice or forget its there, or think its pretty cool. My Mum went in when I was in Kindy and explained about my brace and why I wear it, and most kids were just like oh ok. And I wasn't self conscious a bit about it; I'd (someone in my Kindy class remembered me for this many years later) pull up my school dress quite regularly and show people my really "cool body" with stickers all over it. I felt as normal as any other kid and was barely actively aware of my brace most of the time.

It was when I was wearing the brace the second time that I found it a lot harder and the kids were a lot crueler, as you get older (end of primary school, begining of high school (Year 7/Year 8) kids are a lot more aware of people who are "different". Its then that I started to feel self conscious and I found kids would stare and make jokes once I entered high school (which is year 8 in Australia). You do become stronger as a person, and learn very quickly to make witty comebacks :-) Eventually it became "old news" and the kids stopped being cruel, but it took a long, long time and you still feel self conscious.


My very best wishes

Alison

smedina1
01-16-2005, 08:20 AM
Hi Alison, Thanks so much for your advice. You sound like a remarkable person and I bet has become a very strong person too. How are you doing now? Do you still have to wear a brace?
I tried sending a picture of my 2 girls and I don't think it took. I'm going to try again. Jenna is 3 and Hannah(who has scoliosis and kyphosis) is 19 months.
Thanks again for replying

smedina1
01-16-2005, 08:29 AM
Let's try this one more time.
I guess I don't know how to send a picture.
I'll try and figure it out later.

Mary Lou
01-16-2005, 08:33 AM
Greggo and Smedina,

My 13 y.o. daughter has Kyphoscoliosis and had spinal fusion about six weeks ago. She tried two different braces before surgery and didn't do well with either. The sugery, however, she did great! There is a young lady in Jamie's class who has Scoliosis and has worn a brace since she was 2 y.o. and is now 14 y.o. and looking forward to getting out of her brace soon. Her mother and I have talked many times and it seems she has had less trouble with her daughter wearing the brace because it was part of her life since she could remember. Most kids in school don't even know this child wears a brace unless they are in her gym class and notice it while they are changing. If your daughters need surgery or need to wear a brace during school, talk to the school. Go into the classroom and do a "show and tell" to the kindergarten class. Kids at that age are very curious and will ask a lot of questions. Once they know the truth, there shouldn't be much of a problem.

Best of luck.

Mary Lou

smedina1
01-16-2005, 12:11 PM
Thank you MaryLou, that was very helpful.
We can use as much information as possible.
I have a question when my daughter is in the brace(TSLO)
How does she sit and get in and out of a chair? This may sound pretty dumb but right now she sits in a bouncy chair, she just loves it. I think it will be hard for her to get in and out of. Any suggestions about a chair that may be better for her. This may seem not very important but she sits in her bouncy while she watches tv or gets tired.
Does she have to lay down more? I just want to make her as comfortable as possible.
Thank you

Mary Lou
01-16-2005, 01:54 PM
Any issue you have is an important issue.

I think you will be very surprised in your daughter. Children, especially young children, are very adaptable. My daughter isn't allowed to bend, twist or turn her back and needs to bend at the knees to pick things up from the floor. She has learned to pick things up with her toes just so she doesn't have to bend down!

Your daughter may have trouble getting up from the floor and I would imagine there will be some frustrating moments for her, but stay positive and encourage her and remind her she can do it. Sometimes I think it is harder on the parents sometimes than on the kids.

Jamie didn't seem to need to lay down when she wore he brace. She spent more time watching TV because she didn't want to try to do anything in her brace. Remember, she was a 12 year old, who had a mind of her own and did not want to wear a brace of any kind.

Mary Lou

Alison
01-16-2005, 09:10 PM
Hi

Nup no more brace, the brace was cast away a week before my fusion surgery and it never saw the light of day again, and I did not wear a brace post surgery. Well......it sits pride of place on top of my cupboard but the only person who wears it now is my Teddy Bear.

I think my bracing would have been "a lot easier" if I had worn the brace the whole way through-15 months to 13 years of age instead of the 3.5-4 years in between where I was brace free. I had to get used to the brace all over again, finish primary school and start high school, and knew that this was an absolute "last ditch effort" that probably wasn't going to work, and had been after 6 months of not being allowed to get the brace due to hospital adminsitrator politics. The brace free years were absolutely wonderful and were given for a number of reasons; one was to give my muscles a chance to work again, and my curves were sitting relatively stable at that point. And it also gave me years of normalcy.....not that wearing a brace wasn't normal (well I thought it was the most normal thing in the world), and I then knew what it was like to not wear a brace which made it all the more harder.....but I think you'll understand what I mean........ Not that I didn't wear the brace the second time around, I wore it faithfully 23/24 hours a day for the two years and did anything that any ordinary person my age would, but life was just a lot more difficult to do then the curious kindergarten days :-)


Smedina,

You'll probably find the first few days when your daughter gets the brace to be as difficult as anything, even though its only for a shortish amount of time, it is difficult to put someone into one. She may cry; and you'll probably feel like crying too, but the most important thing for you is to not get upset in front of your daughter.

My Mum told me that when I first got the brace, I would use it to try and get out of things (make people pick up my toys for example), but as long as they stood their ground, stayed positive and told me "you can do it", I would always work out a way to do it. (At one stage I was thumping down on my knees to sit down on the ground, but I soon worked out that hurt, and worked out a better way). I second Mary Lou, children are very adaptable, and are especially adaptable at working out (on their own mostly, even though it may take awhile) how to do something that they wish to do.

One thing that you'll have to make sure is checked when your daughter gets the brace, is that it doesn't cut into the top of her leg when she sits down on a chair (perhaps even take in one of her chairs to the fitting to see how it is), and give her a go at sitting on the floor (even sitting cross legged on the examination table) to see how the brace sits in relation to the top of her legs. I can't remember having trouble getting up and down off the floor when I was little (probably worked out a way to get down there not really sure), I think I used the couch to get down :-). Perhaps a pillow under her bottom when she's sitting on the floor might help with being comfy (takes your legs up off the floor a bit and releives pressure slightly) but it would be a case of trial and error to see what works best.

I'm not sure what a bouncy chair is (we probably call it something else in Australia :-) but I'd say give it a go, she seems to love it so I'd say try it out. She might need a hand getting in and out of it at first, but will probably very quickly work out a way to do it on her own. It (the bouncy chair) might need a pillow in it to make it a bit easier/comfortable, but it's once again a case of trial and error :-). I wouldn't think she'd have to lay down (I certainly never did :-) more than the usual nap times during the day; she may be a bit reluctant to do stuff at first (new position, bit more stiff and less bendable etc) but with gentle encouragement will do just fine :-)

I am doing really well now, unless you knew or saw the scar you would not have a clue that I've had a spinal fusion. I'm 18, just about to start university and try and fit too much stuff into the day, I play sport, musical instruments and have a part time job. There is very little that I wouldn't/don't do, even if I'm not supposed to do something, (my surgeon put long term things that he strongly recommends that I don't do), such as abseiling/repel I give it a go at least once (and usually more), because I don't want to be 80 and have regrets at the things I didn't do in my life. There's some things I won't do, such as Bungee Jumping or Sky Diving but that's because I do want my back for the next 80 years :-) to stay in one piece. Every so often I do feel "older and wiser" then people my age, but that doesn't bother me too much, it's just what makes me, me.

Best wishes

Alison

smedina1
01-17-2005, 10:28 AM
Thank you Alison it means alot when someone takes the time to give other people insight into what they have gone through.
A bouncy is a chair that a baby lies in. It's just that Hannah likes to lay in it. And thanks about making sure that the bottom of her brace doesn't cut into her legs, all that will help me. I need all the information I can get so I'm prepared.
You have been very helpful and if you can think of anything else that would be great, you have helped me already.
Thank you so much

greggo72
01-17-2005, 07:06 PM
Hi alison this is cindy ariana's mother. We just got back from childrens hospital of philly and the doctor there recommended to us to avoid doing another surgery so close to the first one, even though her first spinal fusion failed and her curve is returning. His exact words were keep her in her brace for 23 hours out of the day for 6 months to 6 years. However long it takes as long as her curve isnt progressing. I'm thinking to myself, Is this guy crazy!!! He wants my 19 month old daughter tO WEAR A BRACE FOR THE NEXT SIX YEARS!!!! I was actually leaning towards doing a second surgery now me and gregg (my husband) are all confused. when did you start wearing your brace? did you wear it for several years in a row? my daughters therapist is telling me that it can adversly affect all the muscles in her trunk. Did you have aggressive therapy while you wore your brace? did it affect your muscle development in your trunk, stomach? We are going back to our doctor in nyu on feb 3rd to discuss which psth we should take to try bracing or go ahead with the anterior-post spinal fusion, which the doctor in philly strongly does not recommend since he says ariana is too young any help will be appreciated! Cindy

Alison
01-19-2005, 08:33 AM
G'day

Before I wrote my reply, I put a lot of thought into it and asked my Mum lots of questions so I could give you the best (and most honest answer) that I could. In my traditonal fashion, I'll probably think of more stuff after I've posted it, so I'll probably add to it.

Scarily enough your questions got me thinking, and I wondered just how many days I wore the brace for all up; 2555 days in a row for 23/24 hours a day when I was little then a further six months only at night then 730 days ish when I was older for 23/24 hours a day, whew what lots of days....but strangely it never seemed like that much. I was diagnosed with Infantile Idiopathic Scoliosis when I was 15 months old and put into a brace sometime between then and 18 months of age. Against my doctors beliefs that my parents could cope......but my parents did :-) and made the decision very early on not to mollycoddle me or treat me any different from my sister, and to not prevent me from doing anything I would put my mind to.

I did wear the brace for many years in a row. I wore it up until I was about 7 years of age full time, then a further 6 months only at night. I was then "brace free" for approximately 4 years, and was re-braced at age 11 until my spinal fusion at age 13.

In case your wondering, the type of brace I wore was a TLSO (basically the same as a Boston Brace). The brace went around my body and was fastened with velcro straps at my back (when I was little so I couldn't play with the straps and pull the brace off)It went from under my arms to the tops of my legs (over the hips and a bit more from there to about my buttocks)

I asked my Mum whether I had any agressive therapy when I was in the brace. She said the only therapy I had was swimming a couple of times a week from a very young age. And except for that my only kind of therapy was normal kid stuff such as running around, hanging upside down on monkey bars, throwing balls playing on the playground etc. Mum couldn't get me to sit still and I never saw the brace as an obstacle to doing something, it was just something I wore :-)

Wearing the brace did not adversley affect the muscle development in my trunk/stomach. In saying this, I met all the usual "development levels" and whilst my muscles weren't quite as strong as "normal persons" they still were able to develop in the brace and weren't too far behind. Out of the brace I wasn't a particularly floppy child muscle wise and as far as we know (it never came up in surgeon's visits) did my muscles become atrophic (muscular atrophy) . I even learnt how to "slouch" in the brace, which I thought was pretty nifty. When I came out of the brace when I was little, I didn't feel any difference muscle wise, but I did feel a difference when I was older and came out of the brace. You do feel a bit less supported muscle wise without the brace, but I didn't notice much otherwise.

But what also has to be remembered it that I didn't have any other "issues" that are often found in congential scoliosis cases. The affect on muscles from a brace in a congenital scoliosis case might be different, probably something worse investigating further, I'm not really sure; my knowledge of congential scoliosis/ congential kyphosis is pretty limited. All I had was the curavatures in my spine and also Asthma (which they believe can be contributed to the fact I had two thorasic curves and decreased lung function).

Having worn a brace for as long as I could remember when I was little I saw wearing a brace as the most normal thing in the world and thought people who didn't wear braces were strange. And Mum decorated it with stickers so I thought my body was really cool. I had problems with skin lesions when I was growing up, with the Australian weather (quite hot and humid) this was a problem that we were inevitably going to run into. Mum kept on top of this by changing my singlet that I wore under the brace at least twice a day (sometimes it was up to four times a day in the height of summer) when the singlet became sweaty and wet (which is a pretty gross feeling trust me :-)

I don't feel scarred for having worn the brace from so young and don't blame my parents for it. My childhood felt the most normal in the world and no different from other people. It was difficult when I was older, but there where many reasons behind it that contributed it to being difficult) When you wear it (whether it be glasses, hearing aids, back braces, use a wheelchair etc) from a very young age, you see it as normal and don't feel any different from anyone else and just get on with being a kid. And kids are inquisitive but also very accepting from peers who are "diferent" at a young age (ie going into Kindergarten) and just accept who they are

I can't even imagine how it would feel to be told to put your child into a backbrace for up to six years it would be a difficult thing to be told as a parent. The only thought that comes through my mind (which you've probably thought about lots) is have they found out why the first fusion didn't fuse, if they did the fusion too soon could they run the risk of the fusion not taking again ??.

By providing my insight and my experiences I hope I have been of some help to you, if you have any more questions or I didn't explain stuff ok feel free to ask me. I know you and your husband have lots of stuff to think about over the next few months and you have my very best wishes

Regards

Alison

lorrie
01-20-2005, 10:41 AM
Hi Smedina

I saw from one of your posts that you were worried about Hannah getting sweaty in her brace. My daughter Genevieve's brace has little holes here and there - they look like they were made with an apple corer - which were intended to help with a bit of ventilation. We call 'em 'tickle holes' and have had lots of laughs with them - which might help Hannah get used to it as well.
Genevieve is 17 now and expecting surgery sometime in the next two or three months (no date yet but that's when they predicted we'd get to the top of the waiting list). She's been in a brace of one kind or another since she was not quite three. She accepted it really easily but really has no mobility anyway (cerebral palsy) so it's not quite the same as Hannah.
Hang on in there.
Lorrie

greggo72
01-21-2005, 01:08 PM
Thank you Alison for taking the time to post an honest straightforward reply. This Is Gregory and I am sure my wife will think of other things to inquire about but for now, let me just say thank you and God Bless You.

greggo72
01-22-2005, 09:09 PM
I need some advice. We have gone to several doctors about our daughter Ariana's congenital kyphoscoliosis since we were told that her first posterior spinal fusion has failed. All are in agreement that she need a second more complicated procedure called an anterior-posterior spinal fusion with a hemiverterbrae excision. I don't know if anyone has had a child, or they themselves, have underwent such a procedure. What they do is actually remove the abnormal area of spine, in our daughters case T12-L2. They then reconstruct the area using bars, screws wires etc. The reason we are seeing so many different doctors is that our doctors, even our second opinion, do not seem to agree on WHEN such a procedure should take place. According to our doctors this procedure will solve all of Ariana's problems. It will permanently cure her kyphosis since the reason the curve exists will not be there anymore(the abnormal spine). One doctor thinks we should do the procedure now, why wait he says, she is young she will heal fast, she will not remember the procedure and since there is a considerable recovery time she does not have to worry about school. The other doctor thinks we should keep Ari in the brace as long as possible as long as six (6) years. He says the bigger she gets the better hardware they can use the SAFER the procedure is. I am going to be very honest, I want to do this procedure within the next six months. My husband disagrees. He thinks my reasons are very selfish. I want this whole thing to be behind us, I want my daughter to wear pretty dresses without a big bulky brace underneath, I dont want to go the doctor every 4 weeks, Get XRAYS every 4 weeks. I want to go on vaction to a hot climate without worrying about my daughter getting heatstroke from her brace. I want to go to the beach!!! I want my life to continue without the constant worry about doctors curves and operations. There is a big downside. Ari had a very bad experience in the operating room for her last surgery, and I dont want to put her through that experince again... Any advice i am desperate!!! Cindy

smedina1
01-23-2005, 08:16 AM
Hi Cindy, I'm Hannah's mom (smedina1) and I'm not sure yet but I believe that is what they have planned for Hannah. I'm going to talk to my doctor in two weeks, but I know that I'm pretty sure that they wanted to remove the 2 hemivertibraes and they said that it would correct her kyphosis too. Again I'm not positive but I think that is what they are going to do. She will still have the rods in and will have to go in every 6 months to a year to adjust because of her growth. But they told me that especially because her curve is increasing that they wanted to do her surgery when she is about 2 to 3 years of age.
I'm going to get more info when I see her doctor.
I hope this helps.
I know that this is very upsetting and you want to do everything for her. I have heard that kids heal very quickly too. That is what I was told.
Just make sure two are on the same page. I know at one time I took Hannah to a chiropractor and my husband didn't want me to so I stopped. We had to agree on it ortherwise it could lead to arguements.
If you can think of any questions I can directly ask our doctor and I couldn't think of let me know.

greggo72
01-29-2005, 11:26 PM
Well, we just returned from Minnesota the other day. We met with Dr. David Polly of Fairview University Medical Center. He was very knowledgable. Through an X-Ray we saw that our daughter's wire fixture on her fusion area has broken. It hasn't caused any pain yet, but this is obviously not a good sign. He feels that another surgery is imminent (from 6 to 12 months). He also believes that posterior screw surgery is the best option. He has performed this surgery in children as young as one year old and has had positive results. It's a shame that Dr. Polly does not take our insurance because we would love for him to do the surgery. He did give us the name of a doctor in New York from the Hospital for Special Surgery. The name escapes me now but we don't know if that doctor takes our insurance. We paid out of pocket for this Minnesota trip and the doctor visit because we wanted the best for our daughter. Dr. Polly said that the anterior-posterior hemivertebrae excision is a viable option but it is the most riskiest of the options because of the location of Ariana's congenital kyphotic deformity. We hace two doctor appointments next week with our pediatric orthopedist and our spinal surgeon. We will discuss the other opinions and hopefully come to a consensus about our daughter's surgical future and options. If these doctors do not feel comfortable doing the screw surgery, then we may have to find other doctors who will. We will keep you guys updated after next week. Thanks and keep posting!

greggo72
01-29-2005, 11:34 PM
SMedina, Dr. Polly told us that when it comes to congenital kyphosis (what Hannah has) the anterior-posterior hemivertebrae excision surgery is the most riskiest depending on the location of the abnormality in terms of possible spinal cord involvement. Ariana's deformity is between T12 and L2 and he says this is a risky area. Where is Hannah's defect and did your doctor discuss risks? Our primary doctors really never went over the risks but rather accentuated the rewards. For our case, the risks outweigh the rewards. Make sure you go over the risks, (spinal cord, blood loss, recovery time, brace issues, pain management etc.) please write back, thank you.

smedina1
01-31-2005, 07:37 PM
Hi greggo72,
Sorry I haven't gotten back to you. Today is the first chance I've had to reply. Hannah got her brace (TSLO) and she is doing wonderfully. We call it her "pretty". We say look how pretty.
I say hands up and she lets me put it on. She has to wear it for 23 hours a day until Wednesday when her doctor takes xrays and lets me know how long she will have to wear it.
I'm nervous about her appt on Wednesday just because I always get nervous.
I've written some questions down for my dr. Can anyone think of any questions I should ask him. I always think I'm not asking or I'm forgetting something.
A few are:
Whay type of surgery will she have?
Where is her deformity?
Donating blood, what type does she have?
Any fusion being done? I don't believe so
What about her kyphosis?
Are the rods going to be there the rest of her life?
Are they going to remove her 2 hemivertabraes?
Get the name and number of someone who has had the same surgery as Hannah
Anything else I should be asking?
Please help
Thank you
See I don't know where her kyphosis is I know her scoliosis is in her lombar area.
Thank you for listening.

Alison
01-31-2005, 07:47 PM
Glad Hannah's brace seems to be going well so far.

One qu's come to mind, which might be useful to you

: What is Hannah's lung capacity like?

Regards

Alison

smedina1
02-02-2005, 07:20 PM
Alison,
Thank you for your question and I did ask him and he said that her lung compacity is not compromised. So I didn't have to worry about it.
I found out that her sacrum, the bottom of her spine, is also curved and she needs to have a CT scan next week to see the area. He doesn't know why it is curve he can't tell by the xray.
It may be another hemivertabrae. I'm nervous about that.
They have to put her under sedation.
They also had to adjust her brace. Her curve increased 2 degrees, but it could of been before she had her brace. She only got her brace one week ago, so the increase could of happened before she got her brace.
They modified her brace so it's a bit red in that area.
Dr. Hensinger believes that the brace will work. I'm praying.
Her area of deformity is in her T-12 and L-5.
And her sacrum.
Thank you all so much for listening.
Also, has anyone had any problems with their childrens sacrum????????
If so please let me know
Thank you again

greggo72
02-02-2005, 09:27 PM
Smedina, the sacrum doesn't involve the spinal cord according to our doctor-so it should be easier for your doctor to correct.

greggo72
02-02-2005, 09:42 PM
our daughter went to see her pediatric orthopedist today and he wants to perform another surgery using wires and hooks to correct the increasing curve and lack of fusion in the deformity area. he believes that the more aggressive methods suggested by other doctors was too risky at this point and feels a more conservative approach is warranted. since this surgery is not considered a 100% cure my wife wants a more permanent and direct solution to the problem where another surgery is unlikely. the doctor in minneapolis(Dr. Polly) wanted to put screws in and remove a piece of her spine called the pedicle(the piece that connects the verterbrae to the back of the spine) to get a more solid fusion. It's funny that you asked about the lower part of the spine smedina, Dr. Vanbosse said the surgery Dr. Polly recommended is good for the lower spine since you don't have to worry about spinal cord invlovment, he said where Ariana's abnormality is T12-L2 there is spinal cord and there is risk that it can hurt her spinal cord. She also has to go for a Cat Scan to see exactly where her spine lays because at her abnormality her spinal canal narrows, he is very concerned about hurting her spinal cord. We may have look for a new doctor.... We don't want to but we need someone who will listen to us.... If by next month we can't come to an agreement we may go to Beth Isreal and see a doctor there who just moved here from France... Smedina you still didn't say what kind of surgery Hannah is getting? Do you know yet?
Cindy and Gregg Keep us posted

Carmell
02-02-2005, 11:47 PM
smedina1,

I'm sorry to hear you found out more about your daughter's spine issues. I have a friend who's 4-1/2 yr old has hemi-sacrum and an extra lumbar vertebrae (half, anyway). My friend has had 2 in-person opinions, and 2 opinions from well-respected ped. orthos via email. The majority agree on treatment, which is to try to lift the lumbar spine out of the pelvis before gravity continues to pull it down. I would hope you would consider getting an opinion from an ortho who has seen this kind of situation - not many have - even if they say they know how to treat it. Ask outright if they have actually done surgical intervention for this situation. If you need names of other orthos (I think we've talked about this before) I think Dr. Betz at Shriners in Philly is a great option. He seems to have treated these kids more than most. Good luck with your treatments!

greggo72
02-09-2005, 11:32 PM
we applied to shriners but the clock is ticking we have to have a solution in 3 months that is the deadline the doctor gave us. cindy and gregg

susannajon
02-15-2005, 04:25 PM
greggo72,

Just wondering, did you try and call Shriner's to see Dr. Betz or Dr. D'Andrea? They might be able to push you up if you explain the situation. The care there is free, and those two are considered to be exceptional doctors. They are doing some really remarkable cutting edge stuff, so it's definitely worth having her seen there.

Also, you mentioned someone at HSS in New York? Was it by chance Dr. Boachie-Adjei? He is our surgeon. Our daughter is scheduled for surgery with him March 9th. He's supposed to be one of the best in the world.

My heart goes out to you guys! Best of luck to you.

Susanna

greggo72
02-15-2005, 08:42 PM
yeah we wanted to go see dr boachie but he doesn't accept our insurance and from what i understand from talking to other forum members he doesn't accept any insurance, we don't have the funds to see someone out of our insurance.. we wanted to take ariana to see someone at Shriners but we were just notified that ariana's condition had been changed to needing surgery now, she is scheduled for surgery on March 7th 2005.. what type of surgery i don't know yet. I have an appointment for thursday feb 16th, with Dr. Errico (chief spinal surgery NYU), He must have seen something in her latest x-rays that our current pediatric spinal surgeon Dr Van Bosse didn't see because he told us to expect surgery end of April early May, her wire in her spine is broken so they are either going to do a anterior-post spinal fusion with an hemi verterbrae exision (spelled incorrect) or a post spinal fusion with rods and screws.. It will be her second surgery before her 2nd birthday, so I am kinda upset about the whole situation. we wanted to get as many opinions as possible because everyone we see has a different opinion on what would be the best for her.. we have so far have seen 3 different ortho spinal doctors and got three different opinions.. but we are now out of time so we will hopefully do what is best for ariana and just take leap and do the surgery.. Cindy and gregg:( It;'s obviously something we are not 100% comfortable with

susannajon
02-15-2005, 11:05 PM
Hi,

I would call Dr. Boachie, and see if he will see her considering your situation. He is a very compassionate man and he might give you guys a look no matter what the financial situation... Just call and see (212) 606-1948 or (877) 606-1555. Fight for your kid... it's worth the effort. Same with Shriners. Please call them and explain the urgency of your situatuation. Don't accept what your doctor is saying. They will pressure you to cave and just let them do what thay want. I've been there. It's never as desperate as they want you to believe. Get all the opinions you can and make the decision that's best for your daughter! I encourage you to fight for what's right for her.

Susanna

greggo72
02-17-2005, 09:07 PM
Today we saw Dr. Errico and we have decided to go ahead with him doing anterior post spinal fusion with them taking out the abnormal area of vertebrae. Dr Van Bosse our pediatric spinal surgeon will also be there as well. He also told us that they will be working with a thorasic (thoracic) surgeon, a Dr Nadler. We made a decision that we are reasonable comfortable with after speaking to the doctors. The surgery was scheduled for March 7th but they have changed it to March 28th, so they can better plan the procedures and also get a cat scan... The only bad thing is that once we got home from NYU medical center and we finished making all of the plans for the surgery we get a message on our answering machine that Dr. Betz (spelling??)at Shriners wants to see us on March 25th... 3 days before Ari's scheduled surgery.. now we are second guessing ourselves wondering if we made the right decision!!! So any advice? Should we continue with our surgical plans and still see Dr. Betz or not bother to see Dr Betz because we are resonable comfortable with the arrangment at NYU???

Alison
02-17-2005, 09:23 PM
I'm a little worried reading your only "reasonable comfortable with the arrangement at NYU". I'd be hoping you'd be 100 percent comfortable with the arrangement, with Ariana being so young and the surgery so big

Alison

Alison
02-17-2005, 09:23 PM
I'm a little worried reading your only "reasonable comfortable with the arrangement at NYU". I'd be hoping you'd be 100 percent comfortable with the arrangement, with Ariana being so young and the surgery so big

Alison

greggo72
02-17-2005, 09:37 PM
To be honest Alison we can't find any 2 doctors to agree on what type of procedure my daughter needs. Our insurance has become another issue and we are starting to get depressed about not being able to see the top doctors in scoliosis surgery because we don't have the $$$$!!!! so what do we do? We have to make a decision.. I mean how can we not have 2 doctors agree on what procedure my daughter needs? Dosen't that sound completly crazy? Even in his own practice the doctors don't agree. I think it's time to bite the bullet and make a decison since they are worried about being force to do an emergency procedure if her continues to progress at the rate that it has been progressing..
Cindy and Gregg

lrmb
02-17-2005, 10:54 PM
Is there any way you could call Dr. Betz and see if he could see Ariana really soon? It sounds like it really is getting urgent, but I'm also thinking that Shriners would be free right through until Ariana is grown up, if there was any way she could get in. We are all thinking of you and praying things will go well. Take care. ~Laura

lrmb
02-17-2005, 10:55 PM
p.s. I am sure they are good guys at NYU medical center. Let us know what happens.

susannajon
02-18-2005, 08:57 AM
Cindy and Gregg,

Please consider waiting and seeing Dr. Betz. He and Dr. D'Andrea at Shriners are two of the very finest in the world, and considering your financial situation, Shriners gives you the double benefit of world class free care. Betz is in the cutting edge as far as advancements in scoliosis procedures. I would hate to see you guys ever have any doubt in your mind that you gave your daughter the very best possible chance. Please let them take a look at her. I would ask Errico to push back your date a week or two, so you can see Betz, and the two of you can thoroughly digest whatever he suggests as far as surgery. Don't let the doctors rush you. I would also try calling Betz back, and see if there's any way he can see you sooner considering the scheduled surgery date. My whole family sends our love and support!

P.S. Don't let the bad feedback on Shriners in Louisiana scare you. Dr. Betz and the Shriner's in Philly is a whole different caliber of doctor and hospital.

Susanna

Mary Lou
02-18-2005, 10:58 AM
Gregg,

I understand completely how you feel! My daughter was seen by five different doctors (three of which were in the same hospital) and it was our fifth doctor that we had do her surgery. Several of the doctors agreed on what needed to be done but one doctor in particular wasn't even wanting to treat her for all of her back issues. Mostly our problem was that most of the doctors weren't knoweldgeable enough in regards to a condition called CMT that we believe is an underlying cause of her Kyphoscoliosis. That just made our search even more diffictult.

As for Dr. Betz, he is wonderful! He is one of the five doctors we saw and would have been the one we chose to do surgery had we not found a doctor just as wonderful, experienced and knowledgable as Dr. Betz closer to home. The doctor who did the surgery told us we were in excellent hands with Dr. Betz, and really questioned us as to why we were coming to him and not continuing with Dr. Betz, which is always great to hear especially coming from another doctor.

If I were you, I'd see Dr. Betz. It definetely can't hurt. If nothing else, you can tell him you have surgery scheduled and tell him what they plan to do. I'm sure he will tell you whether or not he agrees with what is planned for your daughter.

Good luck and be sure to let us know what you decide.

Mary Lou

greggo72
02-18-2005, 11:41 PM
mary lou-please read BROKEN WIRE thread by Matt-we've heard from several people that getting surgery from shriners is easily accessable; however follow up procedures and/or appointments can take up to six months for a child to be seen-we are deciding against seeing Dr betz (he wants to see us three days before ariana's scheduled anterior posterior surgery)

Mary Lou
02-19-2005, 08:50 AM
Gregg,

Matt is a good friend of mine from this forum and I know he won't be offended by what I'm about to say. Each hospital/doctor is different. For one thing your case and Matt's are totally different. You are dealing with a VERY young child. Matt is a skeletally mature young man. There is a big difference in treatment. My own daughter who is 13 was followed usually on an every four month basis.

I will be honest with you. We were told, and again, my daughter's surgery was not an emergency situation, that we would probably have to wait up to six months to get into Dr. Betz' surgery schedule. Dr. D'Andrea's I think isn't as full. Dr. Betz does a lot of teaching which limits his surgery availability. However, we scheduled surgery with our current doctor and we still had to wait two months for surgery and he isn't the Chief of Staff like Dr. Betz.

Have you thought of calling Shriner's and asking for references on Dr. Betz? Our surgeon willingly gave us a list of names of people who he's done surgery on their child. Maybe Shriner's would do the same and you can find out first hand from people whose children have been going to Dr. Betz/Shriner's for years. I hate to see you put yourself in financial trouble, but I also understand that you need to find a doctor who is the best for your daughter.

Mary Lou

greggo72
02-20-2005, 08:42 PM
I'm going to call the shriners in philly and see if they can give me an earlier appt. If they can we will go see Dr. Betz, If not we are not going, I am reasonable comfortable with the decision to go ahead with the surgery in NYU, We dont want to be second guessing ourselves 3 days before the surgery,(Dr. Bertz can see her 3/25, her surgery in NYU is schedules for 3/28). I recently had a discussion with linda on another thread about doctors doing charity work overseas and then in america not accepting insurance(Dr Boachie). I was so upset about not getting the best doctor I could for my daughter because of financial concerns, Linda told me that he did a lot of charity work and I should take that into consideration, of course me being so pissed off I said that should't excuse him. I was really upset about the situation... I recently saw a movie called Chernobyl Heart and boy did that movie make me cry... It put my daughters situation in persprective, I should be happy that she has access to medical care there are so many children who aren't so fortunate, things that are easily fixed here cause children to die elsewhere..It's a movie i strongly recommend if you start getting depressed about the USA's medical situation...when I fight with my insurance company next time i will be thinking of that movie.... Cindy

Carmell
02-20-2005, 09:13 PM
Cindy,

I just wanted to echo what the others said... PLEASE try to get in to see Dr. Betz before deciding on this MAJOR and irreversible surgery. I posted a long and windy novel to you and a/p surgery and recovery, but I think it would be an excellent idea to get in to see Dr. Betz or his colleage, Dr. D'Andrea. Call Shriners and ask for Toni - she is Dr. Betz secretary. I know she is in early, and leaves early.

Shriners is a wonderful facility. Shriners in Philly is topnotch. The latest in medical technology is available there. I think you will find the docs there very knowledgeable about Ariana because they are strictly PEDIATRIC docs and they see cases like her much more frequently than most other facilities.

Please know we are all sending our best your way, no matter what choice you make. Good luck.

greggo72
02-20-2005, 09:32 PM
My biggest concern is what if he says no, don't do the surgery where does that leave me? If only i could get 2 doctors to agree!!!!!!! That is one of the reasons i was so desperate to see Dr Boachie to see which doctor he would agree with. I am not going to lie i already stated in this thread I really want to put this whole thing behind my family... I don't want to risk ari's health but who really knows whats for the best? The doctor at NYU? The doctor at CHOP? The doctor at Minneapolis spine center? The doctor at Shriners? It all boils down to us making a choice... and then living with it. What if Dr Betz tells us not to do the surgery.. Then we are taking two steps back... I wish she was older so she could help us make a decision I feel like we are playing god and making life altering decisions for her without her consent, We will keep you posted I don't lknow what i would do if i didn't have this web site.. I would proberly had a nervous breakdown by now... Cindy

greggo72
03-31-2005, 08:49 AM
I know we haven't posted anything in a while but our daughters surgery was pushed back from march 28, 2005 to april 1, 2005. she is having anterior/posterior hemivertebrae excision surgery with (arthrodesis or fusion) and autografting and allografting. they will remove the two extra riblets that she has and will use donor bobe and perhaps her own bone to strengthen up her spine. dr errico, dr van bosse and dr nadler (all of NYU) will be performing the surgery. they say she will be in the hospital for 10 to 14 days. my job (the NYPD) has temporarily reassigned me to Employee Relations until April 17. (so that I do not have to take any vacation time and I will still get paid just for being at the hospital with my wife and daughter). we are packing and preparing today. my wife cindy will stay overnights with ariana but if it becomes too much for cindy i will do it too. although, ariana is more easily comforted by her mommy than by me. at least we have last years surgical experience to use as a baseline for this time. we are bringing a sleeping bag because the chair/bed in ICU is very uncomfortable. we are packing her favorite stuffed animals-i am burning CD's with her favorite songs. we are bringing pillows for cindy. this surgery will require ariana to be on the respirator and chest tubes so we have to prepare ourselves to see that. we just have to remain positive and hope that the success rates of this type of surgery will apply to our daughter and pray for successful fusion to eventually occur. at least this time ariana can tell us if she is in pain (she tells us where the boo boo is) as opposed to last time when she barely talked. i will keep everyone posted and if you read this post before tomorrow morning, pray for the doctors hands and pray for ariana to recover and thrive. thank you.
Gregory without Cindy. (she is working)

Celia
03-31-2005, 09:46 AM
Gregg,

I've been reading your posts on and off the last couple of months and I sense a bit of fear and apprehension (quite understandably !). I just want to say that I pray everything goes well for Ariana tomorrow. I hope this surgery is exactly what you're hoping for and that she won't need any more. :)






Celia

Carmell
03-31-2005, 02:36 PM
Hi Gregory and Cindy,

Please know our best thoughts and prayers and well wishes will be with your family tomorrow. This is a HUGE surgery (like you don't already know). We'll be thinking of you as you wait to see how she comes through the procedure. Hopefully when she's done, you will see a new beginning. Please keep us posted when you can. We'll be anxious to hear how things go.

greggo72
04-01-2005, 09:34 PM
well as of now, the surgery went about as well as could be expected. first the doctors went throught the front and scraped away the segmented hemivertebrae-they also removed part of an extra riblet.they used the riblet, the vertebrae bone and cadaver bone to put back into the deformed area-they then put metal bars in between and two screws above and below the affected vertebrae (T13-L2). they stitched her up and went to her back -they left the wire hardware in from the previous surgery because it was hard to take out-they just tightened it so that it is fully functional again-so the doctor stated it's like having a belt with two pairs of suspenders to hold up your pants-they added more cadaver bone from the rear and solidified the structure-they didn't need to use a chest tube as expected and she was taked off the respirator immediately after surgery-she had a slight fever in the PICU bt that was to be expected (a little tylenol)-as of this posting, they are reducing her oxygen levels and slowly weening her off it-she is slightly more comfortable-she still has a catheter, IV, some blood draining thing attached to her back, and a line from her jugular vein ( i am not sure for what)-the doctor said she has no mobility restrictions unlike last surgery when she had to stay on her back-this time though, she has to wait until her brace is put on before she can move-her new brace is also a clam shell brace but it has pink plates on the front and back to make it more pretty and female like. ariana likes it-my wife is going to stay at nights with ariana because ari asks for her mom during times of crisis. hopefully soon she will be placed in the regular pediatric unit-i will return tomorrow morning and i may update everyone interested tomorrow night. greg

nikyergen
04-02-2005, 01:07 AM
Gregg & Cindy,
Glad to hear that Ariana's surgery went well. We do understand the insurance problems you faced. I am so glad you found a good doctor that accepted your insurance. These surgeries can be very costly, and even if the insurance covers 80% of it, that can still end up being a lot to pay in the end. That is why we ended up with Shriners Hospital. We also got one of the best surgeon's in the world. However, totally understand the urgency with Ariana, and the fact that you couldn't wait. Crystal had her surgery on 3/15/05, and was off and going quickly. She's 16 and an athlete, so it takes a lot to really slow her down. She is just about off of pain meds. Usually only one prescription med at bedtime and the rest of the time it is regular tylenol.

We will keep you all in our prayers.

'til later,
Nikki

greggo72
04-03-2005, 10:23 PM
i didn't get to post on saturday night because i spent the night at NYU with my daughter and wife. on saturday, they removed the catheter. ariana was very swollen and bloated because she was retaining fluids. then the resident said it was ok to try to introduce apple juice to her slowly. unfortunately, ariana threw it all back up plus bile. so she had to be downgraded a bit. her fever went up and down the whole day. dr van bosse visited her and said he felt it would be better if she had the catheter put in so they could accurately measure the amount of urine she excretes. her belly was very hard (caused by her belly seizing in response to the anterior part of the surgery). the doctor was hoping for good signs soon like farting and a little poop in her diaper. saturday night, ariana had a little shaking episode and it looked like a seizure-her fever went up suddenly so it may have been a febrile seizure. they took blood and al was ok-she kept breaking out in little rashes or hives-she has a latex allergy so we thought it was someone accidentally used latex gloves on her but that was not the case-then we thought it may be the antibiotic-we still don't know but they gave her benadryl to stop the rashes. she also threw up some more saturday night into sunday-on sunday she started farting and making mucous poopies-her fever was gone and her face was less swollen-her legs were still swollen and her belly was less hard-she started talking more and singing and watching DVD's-she drank 4 ounces of apple juice mixed with water and kept it down so she is looking better-she is still in PICU as of now-we had the whole room to ourselves for a day and a half-3 empty beds-i guess it was slow for the weekend-sunday night we got another patient in our room-we got a lot of individualized attention by residents, doctors and nurses. the nurses have been especially nice and understanding-sometimes it's hard to deal with my wife because she is paranoid about everything-but i admit she does know her daughter better than anyone else-i am spending sunday night at home with my son-he has to go to school tomorrow- will keep anyone interested posted (oh and sunday they re-removed the catheter, and removed another IV line. she keeps asking for apple juice and milk but her belly is not up to par with her brain)

susannajon
04-03-2005, 11:29 PM
Hi Greg & Cindy,

Just sending you my thoughts and prayers. I am so glad the surgery went well, and I totally understand how tough these first few days can be. She will get a little better each day, but it will probably go very slowly, a lot of two steps forward, one step back. My heart aches for you, and I can't wait to read how wonderful she's doing in a few weeks!

Hugs and kisses to you guys!

Susanna

greggo72
04-04-2005, 12:26 AM
thank you-it certainly feels like 2 steps forward 1 step back

nikyergen
04-04-2005, 12:36 AM
It was good to see another post from you. I am so sorry Ariana has had such a rough time of it. I am sure as everyday goes on she will feel better. I know my 16 year old is thinking she can do about anything now, and she not quite 3 weeks post-op.

We will keep your entire family in our prayers. So glad you got to spend the night at the hospital with Ariana and Cindy. I am sure you were greatly appreciated. I know when my husband came back to the hospital to pick up Crystal and I, I cried. He asked why I was crying. I explained exhaustion, not having my own bed, missing my family, and really missing his rock strength support. But, then I cried when he left after Crystal's surgery to come home too. The darn cows needed to be fed and we live 5 hours from the hospital. Little far for a quick trip.

Anyways, chins up, she will get better. We are praying.

'til later,
Nikki

Carmell
04-04-2005, 01:23 PM
Gregg and Cindy - please know we are still sending our best wishes your way. Hopefully Ari will have more good days than bad from now on. Keep us posted and let us know how you all are doing.

nikyergen
04-08-2005, 01:28 PM
Gregg & Cindy,
We are all continuing to pray for you all. We are all look for updates on Ari. Hope all is going well.

'til later,
Nikki

greggo72
04-13-2005, 11:19 PM
well, it is now april 13th and she had the surgery on april 1st-she returned home on april 6th-she has been doing well-even walking-the doctor said she has to wear the brace as she tolerates it-she hasn't been wearing the brace at all/ we went to see dr van bosse today for xrays-she is doing well-he wants ari to wear the brace all the time except when she sleeps-we saw the thoracic surgeons nurse practitioner and she was worried about ari's anterior scar being swollen-she believes it could be that an internal stitch came out-or worse case-it is a hernia that could effect her bowels-if ari gets a lot of pain or if she stops poopimg, then we have to bring her back-we have to watch her-we are going back next wednesday to see dr nadler himself-other than this-everything has been good-even if ari doesn't like it, we have to force her to wear the brace (as protection from falls and possibly damaging the fusion)-will keep all posted

nikyergen
04-14-2005, 03:10 AM
Gregg & Cindy,
Glad to have the update on Ari. We will continue to keep her in our prayers. I am so glad she is up and around. My 16 year old got a brace after surgery for the same reasons. She is a pretty athletic kid and hard to slow down. So, I think the surgeon was hoping the brace would slow her down. Anyhow, the important thing here is Ari is doing well. Keep us posted on how she is doing and improving. It was good to hear from you.

lots of prayers,
'til later,
Nikki

Celia
04-14-2005, 09:21 AM
Gregg,

Does Ari have instrumentation ? I'm surprised given the problems of non-fusion with the first operation that they didn't put her in a cast this time around. It's very important that she wears the brace - although if there is a swollen scar, that may be a bit painful. Maybe they could cut out a tummy hole on the brace so that it doesn't rub against the swollen area ? It's great to hear that she is moving around. :D



Celia

susannajon
04-14-2005, 10:09 PM
Gregg & Cindy,

I am so excited to hear from you guys! That is wonderful that Ari is up and around and doing so well. We could all learn a thing or two from your sweetie about bravery, couldn't we?

I know it's almost impossible to keep a teenager in a brace. I can't imagine keeing an active baby in one. Good luck, and I just know everything will continue to go well.

Hugs,

Celia
04-15-2005, 01:42 PM
Gregg/Cindy

I think the point that should be stressed here is that if she doesn't wear the brace, she runs the risk of non-fusion again. They should have put her in something more permanent given the problems she had the first time around. If it were me, I would have insisted. The poor child may require further surgeries if the fusion doesn't "take". I don't mean to sound like an alarmist, but this is very serious.



Celia

nikyergen
04-16-2005, 02:18 AM
Gregg & Cindy:
You guys are doing a great job with Ari. To have gone through two surgeries with her in such a short period of time. Keep up the great work.

'til later,
Nikki