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celestin1170
11-16-2004, 09:44 AM
I am so very glad that I found this forum. My daughter is 12 years old and was diagnosed with scoleosis in 2001. She started out wearing a back brace but it didn't help. As of her last doctor's visit in october, her curve had increased to 53 degrees. They are scheduling surgery for the first or second week in January. She will be having a posterior spinal fusion.
Right now she doesn't seem very worried, but i'm scared to death! I have a couple of questions for you all.
Did any of your children have to wear a back brace after surgery? I've read that some had to and some did not.
I also found a website that followed a 15 year old boy through his surgery. They had pictures of him after his surgery while he was still in the hospital in ICU. This boy had tubes coming out of his neck! Is this a normal thing and what is it for? That picture scared the heck out of me.
What is the average time that the surgery takes?
What was the average time for the hospital stay?
How did you make your child comforable at home?
I'm sure you will all be hearing from me quite a bit within the next few months! Thank you in advance for your help.

Kim
Mother of Keri

Bill's mom
11-16-2004, 10:46 AM
Hi Kim,

It's all a bit overwhelming, isn't it? My son is 16 and just had surgery on 11/3. He was diagnosed in June with a degree of 58, so we just went straight to planning surgery.

He never ever worried about it - even the morning of the surgery - and our doctor told us not to worry that he wasn't worried (so I don't think that's abnormal). And, I can fully relate to being scared to death. It comes with being a parent.

I'll try to answer your questions.

When they come out of surgery, they do have lots of tubes and machines and their faces can be very puffy. I'm not sure what "out of his neck" means. Sometimes they still have the breathing tube (but that's in their mouths) and Bill had a tube up near his shoulder that was used for some IV stuff. That was the last thing they pulled out before he came home from surgery.

Bill had posterior surgery and is fused from T3 to L3. I don't know that there is an average anything in terms of timing. Your doctor will know best how to answer the questions (our doctor had it down to a science of knowing what would happen when) but for Bill, surgery was 6 hours. His surgery was on a Wednesday and he came home on the following Monday. He was in ICU for two nights (for which I'm grateful. They gave him such excellent care and attention.) On Friday, they had him sitting up for 30 minutes twice a day. On Saturday, he walked. On Sunday, he pooped. On Monday, he came home.

We opted to use donor bone for fusion instead of his own bone and I think that has helped him to have a speedier recovery. He has not needed much of anything to ease his recovery at home other than an extra pillow to lean against when sitting.

Our surgeon said that he has never had a patient wear a brace following surgery, but I'm sure there are cases when that is needed.

Was there any discussion with your doctor about your daughter's age and the amount of growing she still has to do? There's lots of information in this forum (including that topic), so if you have the time to read through past posts, you'll find lots of information. And, feel free to post your questions and concerns. We can all fully relate, so hang in there and try not to worry too much.

Susan

Carmell
11-16-2004, 05:30 PM
Hi Kim,

Susan gave you lots of good information. Remember that you are not alone - many parents have walked in similar shoes. I think part of the problem we have as parents is we know too much. Sometimes, the more information we have, the more we have to worry about. This is very normal! (nice to know you are normal, right? ;) )

I also agree with Susan about your daughter's age. Scoliosis surgery is rarely an emergency decision, even with a curve around 50 degrees. Have you considered getting another opinion? Maybe with the facts you already know, you can discuss what the pros and cons are of having surgery sooner than later. I know of a few adults who had posterior-only surgery before their bodies were skeletally mature, and they've had some problems from it. Make sure this is the right decision for her.

Good luck and feel free to ask questions or comment on what you've read here. There are many people in various stages of treatment, surgery, recovery, etc. who can help.

My best,

ANIMAL LOVER12
11-16-2004, 06:35 PM
Hi Kim,
I am twelve years old. I have a 65 degree curve and a 54 degree curve. I am having surgery in 2005. My doctor told me that I will not need to wear a brace after surgery. From my understandings on what I read it all depends on where you are fused and what lkind of fusion you are having. Oh I forgot to mention mine will be a posterior spinal fusion. I don't know about the tubes. I read somewhere that the average surgery takes around 6-11 hours. The average hospital stay is about a week. I have heard to stay comfortable have lots of pillows. I hope this helped!

jc3
11-16-2004, 07:06 PM
hi kim
you came to the right place for support and answers. The people on this board are so supportive. I don't know what i would have done without everyone here. My daughter also had surgery nov. 3 (2 weeks ago). She is 14 years old and had a posterior fusion and also had ribs removed for her fusion due to her rib hump. My daughter was braced 3 years ago but hardly wore the brace and ended up with a 61 degree curve. She does not have to wear a brace post surgery, thank goodness for that since she wouldn't wear it before surgery. Her surgery took 4 hours and she was in a recovery room overnight. She was in the hospital a total of 1 week. Now we are home one week and things are getting a little better. She still has paiin while walking and getting up. If you have more questions ask away. Before my nicole's surgery i was on here asking so many questions and was so nervous and everyone helped me so much so if i can be of help now being on the other side i'd love to.
jennifer

Alison
11-16-2004, 08:01 PM
The one "coming out of his neck" was probably an IV line. From what I understand the IV's can be put in lots of different places such as the hand, neck, wrist etc. Maybe its a Doctor's preference or where they just end up being put because they could find veins etc to put the lines in, I'm not really quite sure.

When my fusion was done, I had an IV line in my neck as well as my hand, as well as the oxygen stuff line up my nose. The one that was in the neck looks pretty gross and scary (my sister made vampire jokes :-) but it doesn't hurt and only hurts a little when they take it out.

"how do you make your child comfortable at home": the very best way you can :-) for us, it was lots of pillows, some big and fat and some little and squishy. I found for the first few weeks that when I was sitting in chairs and stuff at home, I wanted a pillow in my back or under my legs or just to fill in a "little bit" in the "hollow part" of your back. I also had my favourite chair, and for the first few weeks, when I wasn't up and about I kind of focused my life around the chair.

Alison

mamakay
11-17-2004, 01:00 AM
Hi Kim,
Yes you've come to a wonderful support and informative place.
Carmel was right about too much information. When I first started researching I read some negative stuff and realized later there is good stuff too. You will think of scoliosis and your child everyday from now untill she goes to surgery or what ever you decide and someone will be here to help you like so many moms helped me.. so don't get stressed out too much and know you have entered a club where we all understand.
Keep in touch , mamakay

celestin1170
11-17-2004, 09:20 PM
How wonderful it was to hear from all of you. It's nice to know that i'm not alone in all this, and I have people to talk to that have been through it already, and others that will be going through it with me. :)
I am very comfortable with our doctor, and I trust his judgement to go ahead with surgery. I don't doubt that we made the right decision. Her curve went from 40 degrees to 53 degrees in a matter of a couple months. She has a very large rib hump, and she leans alot to one side. Every now and again she complains of back pain. Some of the kids at school have made comments about her hump...boys for the most part. :mad: I believe we are doing what is best for her all the way around.
Thank you all so very much for all your support.

Kim

susannajon
11-17-2004, 10:24 PM
Hi Kim,

My daughter is 13 and has a double major curve, 35/53 and were hoping to have surgery next summer, like June, so she doesn't have to miss school. We have a bunch of consults scheduled with docs in DC, Philly, and NYC for now through February.

You have found the very best and most active suppoort site, and many of us are from the Eastern US (not to disrespect our friends from around the world). I am from Baltimore, but we are seeing mostly NYC doctors.

Who is your surgeon? I am keeping a list of the best docs, and always looking for good peope to add. If you know anybody who needs advice or support, let us know... that's our speciality.


Susanna

celestin1170
11-18-2004, 08:41 AM
Hi Susanna....Our surgeon's name is Dr. Stephen Albanese from Syracuse, NY. He specializes in pediatric scoleosis and is the head of the Spine care center in Syracuse. She will be having her surgery done at Upstate University Hospital in Syracuse, one of the top hospitals in the US. My husband and I have stayed with Dr. Albanese from day 1. We haven't gone for any second opinions, like I've said before, we have trusted his judgement on what is best for Keri. He's a wonderful man, and has a good reputation so we are confident that we've made the right choice staying with just him.
Do you know if your daughter is a candidate for the anterior type of surgery? My daughter wasn't because her ribs are in the way, and they wouldn't be able to get to her spine from that angle. I was really disappointed because I didn't want her to have the more invasive surgery and that huge scar down her back. But, we will deal with it none the less.
We decided not to wait until summer for Keri's surgery. But we did hold off until after the holidays. They originally had her surgery scheduled for Dec. 17th. I didn't want my daughter's holidays spoiled by all this so we asked to wait until January. So, now they are rescheduling it for us. He said the extra few weeks won't make a difference:)
If you would like more info. on our surgeon, let me know. I can link you to the hospital's website and the site about him.
Talk to you all soon.

Kim

susannajon
11-18-2004, 08:39 PM
Hi Kim,

I think half of a successful surgery is a positive attitude and belief in you doctor. You have a doctor you feel comfortable with, and who's close to home. Trust those mom instincts that are telling you "he da man"!

He is on my list already, but thanks for offering!

Best of luck, and don't forget to come back to the site and tell us how your daughter is doing. We're all here for you.

Susanna

Peggy
12-21-2004, 03:26 PM
Hi Kim,
I am a mom of a daughter who had surgery at 13. She had the surgery in April, 2004. She is presently at 8 mths post-op and doing fantastic! I was at the same place you were 14 mths ago. We found out in Oct. 2004, that my daughter would have to have scoliosis surgery. We only found out at the end of September that she even had scoliosis. It advanced quickly and by her surgery in April her degrees were at 62 and 60. Pre-surgery she gave 4 units of blood. She took Procritin for 5 weeks previous to surgery to build up her red blook supply. She had a double fusion on April 15th. The surgery lasted 9 1/2 hrs and she remained in intensive care 6 days, total hospitalization 10 days. The surgery corrected her degrees to 12 and 10. She has a model's posture and is free of pain. She looks great and can bend at will. After surgery she was on a respirator for about 17 hours. She had a neck tube which was a main IV to the heart until 1 day before she left the hospital. She had one lung fill with fluid post-op but only partially. Her digestion didn't work fully till after she was home a few days. Her stomach was bloated for the whole hospitalization time and for about two weeks after. She was fitted with a brace during her hospital stay. She went home with the brace and wore it for 6 months. I didn't make her wear it constantly. When she was up on her feet thought she wore it for the first 4 mths. Not at night. When she went back to school at the end of August I let her go without it. At that point the surgeon was weaning her off of it. She took pain pills for the first 5 weeks and then was totally off of them. She had a weight lift limit of 8 lbs for the first 6 mths. We bought her a down mattress pad for her bed that seemed to really helped her comfort. Bed, Bath & Beyond. It rests right on top of the mattress. She stills has it! She rarely complained during all of this. She has only complained once in the last 6 mths that her back bothered her. And that was one afternoon :). She is free to bend at will. I'm sorry this seems extremely long. Just wanted to let you know our story. Everyone is different. If your daughter is having a single fusion you may cut your surgery and recovery time more than half! Just hold your head up and stay positive and take comfort in all the people here on this site who have made it through. Things will work out and your daughter will be on the road to recovery before you know it. Thoughts and prayers are with you. :)

MaureenA
12-21-2004, 05:04 PM
Hi Susanna,
My daughter had surgery 4 weeks ago at Children's Hospital of Philadelphia with Dr. Flynn. in pediatric orthopedics. I noticed that you are seeking opinions on the East coast and named Philly as one of the places. Laura is recovering very well, and of course we loved our surgeon. Her surgery was pretty rare for CHOP with only a handful done each year. Scoliosis is actually a common surgery for Dr. Flynn, and CHOP is ranked the #1 Children's hospital right now. His bedside manner, and level of proficiency are incredible. We had a few other opinions done also and everyone of the surgeons agreed with his prognosis. It's a big decision and can be extemely confusing, but I would recommend our Doctor. Maureen

susannajon
12-22-2004, 09:25 AM
Maureen,
Thanks so much for the recommendation. We will certainly check out Dr. Flynn. I am so glad your daughter had such a good outcome! It makes all the worrying worth it, doesn't it?

Susanna

MaureenA
12-23-2004, 11:22 AM
Hi Kim,
I read your letter concerning your daughter's upcoming surgery. My daughter is 16 and 4 weeks post-op. She was diagnosed with kyphosis and scoliosis in 2001. Because she was such a late bloomer she didn't have a growth spurt until last year causing her curve to progress to 68 degrees. That's when we scheduled her surgery. I chose a date before Thanksgiving hoping she wouldn't miss too much school. We'll see if that is true as she is going back to school right after Christmas break. I think your daughter is fortunate to be able to have her surgery at a younger age. Laura has a friend who did very well after her surgery and she was 13.
I must say that the anticipation was the worst for me. Laura wasn't scared at all. She told me recently that it was because she never was in pain before. It's difficult to see your child in pain, but remember it's temporary. She also received so many gifts and cards ect from friends and family. She still gets things on a daily basis!
Her surgery was 8 or 9 hours. She went into ICU immediately after where she spent 2 nights and then to a private room for 5 nights. I stayed with her for the week she was in the hospital. By the time she came home, she was showering by herself, going up and down stairs and using a laptop. Now we are shopping for Christmas and having tutors daily. She is going to start walking about 10-15 minutes daily starting today. I'm telling you all this because you and she will get through the surgery and the pain. I will keep you in my prayers that everything will go well for your daughter. Let me know how the surgery goes and any other questions can be answered here. Maureen

celestin1170
12-25-2004, 05:47 PM
Thank you so much Maureen for your kind words and encouragement. Your right, the anticipation is the worst part. I will keep you posted on what is going on. Her pre-op is on January 10th. Talk to you soon.

Kim
Mother of Keri

matt
12-27-2004, 07:03 PM
Hi Kim! My name is Ross. I had the Posterior Spinal Fusion Surgery in September and I hope my answers help you!

After surgery I had to wear a brace. It just depends on the surgeon. If he thinks that your child will need a postoperative brace than he will give you one. The average time for surgery is 8 hours. My surgeon is the only surgeon in the country who can do this surgery in 4 hours and that is doing the regular surgery, not the laparoscapy surgery kind. The average time of hospital stay is about 5-7 days for posterior and about 7-10days for anterior.

The boy with the tubes coming out of his neck, that called a tracheostomy. That is a sort of breathing tube. That is not normal for Scoliosis surgery and you don't have to worry about that. The boy that you saw must have had some other sort of deformity for him to have to have a trache.

There are no real ways to prepare your daughter for her home coming. I know that when I got home that I got in my recliner and stayed there. I slept in it, everything. It just depends on what position she likes to be in after surgery. You won't know that until after surgery. I know that in the hospital, I hated to be put on my sides. When I got home, I liked to be on my back. Then after a few weeks, I like to be on my side. It is like you like different positions as you go.

If you have anymore questions, you can email me at hard_roc_child08@hotmail.com

Good Luck!
Ross

jc3
12-27-2004, 08:02 PM
hi ross,
glad to hear you are doing well. Just thought i'd let you know that my daughter had posterior surgery in november and also had a thorocoplasty (i think i'm spelling that wrong) when you have the ribs removed and her surgery took exactly 4 hours! so i guess there are other drs. who can do it that fast.
How is your recovery going?
jennifer

Mary Lou
12-28-2004, 08:26 AM
Hi Kim...Hi Ross! I don't think the thing coming out of someone's neck was necessarily a trache, but I haven't seen the pictures either. My daughter Jamie had posterior surgery for Kyphoscoliosis three weeks ago today. They had trouble starting her I.V.s and monitors because her veins are so small. When I saw her in recovery, she had oxygen in her nose; a NG tube in her nose going into her stomach (which was a surprise to me); an I.V. in her hand; a drain tube coming from her back; and an I.V. looking thing coming out of her neck. I've since learned that it was probably a central line which they used to draw blood and also that's where her pain meds and other fluids went into her body.

Jamie has a very high tolerance for pain. She had surgery on a Tuesday and came home on Sunday-had been told she could go home Saturday, but we came home Sunday instead. She was sitting up a day after surgery walking a flight of steps three days after surgery, which she has to prove she could do before gong home since her bedroom is on the second floor. She is returning to school 1/2 days Jan. 3rd; she has only had two hours of tutoring which she did at school last week; she was given a week's worth of Perocet when she left the hospital two weeks ago and hasn't even finished them; she still needs to sit in her high back rocking chair or lays down in her bed a couple of times per day;but for three weeks post-op we are very pleased! The only thing we really did to accomodate her at home was to bring her bed downstairs. She doesn't have a TV or anything like that in her bedroom, so it was easier to bring the bed downstairs. She slept upstairs for the first time last night because she has started sleeping through the night recently.

Feel free to e-mail if you need more info. or have more questions.

Mary Lou

matt
12-28-2004, 11:48 AM
Hi Jennifer. How was your Christmas? I had the thoroscapy done too. I remember that my surgery started at 7:30am and that I was being wheeled out of recovery at 1pm. I thought that, that was pretty cool, thought not at the time because I was too doped up, lol :p ! My recovery is going okay. For the first 7 weeks, I was doing absolutely wondreful. I was able to go places, I was able to have the tutor come twice a week, and I wasn't having alot of pain. Now it's sorta going downhill. About a month ago, I started to have pain in my upper back around my neck area, so we took the 5hr trip to Shreveoprt and the doc told us that one of the wires in my neck area had broken. He sent me home saying that he was going to leave it. So, I called him last week to tell him that the pain is getting worst and he told me that he was going to have to remove the broken wire if it kept irritating me. But, he wasn't going to do it now, because he wants to see how I heal first. Keep in mind that Spinal Fusion healing takes 6 months to a year :confused:. So now, I'm just going to wait until my next appointment at the end of April. I think that it's sorta a sucky deal. Kim, the thing coming out of the boy's neck could be a peripheral subclavian. It's a sort of IV. I can't wait until tomorrow! I get to drive for driver's ed. I wasn't sure if I was going to be able to with the surgery and all. And my birthday is also tomorrow! WOOO HOOO!

Hope that you guys have a great day!
Ross

celestin1170
12-28-2004, 07:19 PM
Thank you all so much for sharing your stories with me....you guys are the best!! You have all made me feel so much better about this whole thing. Our pre-op appointment is on Jan. 10th. We will get all the details about the surgery then. I'll let you all know the details when we get home. Thanks again to all of you for you support. Talk to everyone soon.

Kim
Keri's mom

jc3
12-28-2004, 07:44 PM
hi matt
i can't believe that one of the wires have broken! That is terrible. How long ago did you have the surgery?? How bad is the pain from the broken wire? Are you back to school yet? Sorry to ask so many questions it just makes me nervous knowing that something like that can all of a sudden happen. Did the dr. say why something like that would happen? When do you think they will operate? I am sorry to hear that you have to go through all this. It's hard enough going through the surgery and then recovering nicely and for something to all of a sudden go wrong.
good luck and i hope you feel better

jennifer

matt
12-28-2004, 09:29 PM
Hey Jennifer. I had the surgery 3 months ago last week. The pain levels from the broken wire in a scale about 0-10 is about 6 or 7. All I have to say is that the pain levels are up there. I have no idea when they might operate. They still want to see me at the end of April. I think that is ridiculous! If it keeps hurting like this in a month or so, I think that I will call them back and tell them they need to do something. The doc says that the pain can't be from the wire, but the pain is in the place were the wire is broken. That is the only place that I have "pain". The rest of my back I have uncomfortance. I am back in school. I have been in school for about a month (It was about a month when we left for the Xmas holidays). Do you have an email address? Why don't you email me? That way we talk about this further! Hope that you guys have a nice day tomorrow! Ross

jc3
12-28-2004, 10:35 PM
hi matt
A 6 or 7 pain level sounds really bad to me so it sounds like you are in alot of pain. I've never heard of a wire breaking but maybe someone else on the board has. I can't believe they are making you wait until april. Maybe you need to call them again. I didn't have your e-mail address to e-mail you so i'm posting

jennifer