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Mary Lou
01-03-2005, 06:31 AM
Just wanted to hear how everyone did when returning to school for the first time today. Are all the other Moms as nervous as I am today? I think I am more nervous about Jamie going to school today than I was when she went to kindergarten for the first time!

Mary Lou

jc3
01-03-2005, 08:35 AM
hi marylou
i just drove nicole to school and yes i am very nervous!! Definitely more nervous than she was i think. I am picking her up at 12 o'clock so she will have a half day and be there for aliitle over 4 hours. She wouldn't even take some tylenol before going. I'll post later and let you know how it goes and i'm curious to hear how everyone else's day goes.

pat
01-03-2005, 02:09 PM
Hello Jen and Mary Lou!
Jamie went back to school today; I know your two did too! It went great, her and I went swimming for about an hour, then the van brought her home, right after lunch. A little more attention for Jamie than she'd have liked, it's a very small school, there's only 50 kids in her grade. But it went beautifully, the kids, the teachers; all were happy to see her. And I was thrilled . . . she's back! Let me know how yours did. So exciting! Hard to believe how far they've all come! Amazing children!

pat
01-03-2005, 02:10 PM
Yes, more nervous then when I "sent her off to kindergarten!"

jc3
01-03-2005, 02:56 PM
Nicole's day at school went very well. She said it didn't bother her sitting in the desk, which i thought maybe it would. I picked her up at 12 although i think she would have been fine going till the end of the day. I will let her do half days for the rest of the week and then next week she will go all day.
It just amazes me how well they are all doing after this surgery! I still can't believe how quick everything is going. I have to admit having her home for 2 months i was a little sad with her going to school this morning i got so used to having her home, but i got over it quick once everyone was gone and the house was quite and i had a nice cup of coffee. LOL.
well keep me updated on how everyone is doing
jennifer

ANIMAL LOVER12
01-03-2005, 03:41 PM
I am glad to hear that everyone days went well. That is great news!

Mary Lou
01-03-2005, 03:46 PM
I'm glad to hear all went well for our girls today. Jamie had a good day but is very tired. Her math teacher was a little bit upset that she didn't have all of her assignments done. I've told her not to worry about it. We feel as long as she has everything turned in before Jan. 21st. the end of the marking period, she should be fine and not receive any incompletes.

Mary Lou

pat
01-03-2005, 06:28 PM
Hi Mary Lou

I just noticed your signature info. I also have a daughter, age 11, her name's Ali, not Tracey! And she also has scoli, but right now the #'s are very low. Where's your Tracey stand with scoli? I'm just wondering how usual/unusual to have two sisters with scoli, with no family history at all. Thanks!

Pat

pat
01-03-2005, 06:30 PM
Whoops, sorry Tracy, not Tracey!

Mary Lou
01-03-2005, 06:45 PM
Hi Pat.

Maybe we need to start comparing more notes about our families...seems we have several things in common. Just curious, what's Jamie's middle name? My Jamie is Jamie Lynn.

At this point Tracy doesn't have any Scoliosis that we are aware of, thankfully. Our family doctor watches her very closely. Like you, we don't have any family history of Scoliosis. From what I've read, it is not all that uncommon for two or more children in the same family to have Scoliosis. May I ask what you mean by low numbers for Ali? What degree was Jamie's numbers at diagnosis? Also, do you take Ali to Jamie's orthopedic doctor or to your family doctor/pediatrician? I sometimes think I should make an appointment with the ortho. for Tracy just to be sure.

Mary Lou

Birdman
01-03-2005, 07:22 PM
I had my surgery 8 years ago, but no.. there was no family history of scoliosis. But, 4 years prior to my surgery I was checked for scoliosis & they found nothing.. only a few months after I was checked, I got hit by a Nissan Pathfinder. I broke my leg, cracked a rib, shattered my right ankel. my right foot had 27 breaks.. Including the growth plate was cracked in half, which is located in your ankel.. My Acheles tendon was pinched into the joint aswell.. Anyway.. I was in a cast for almost a year..
My surgeon thinks this could possibly be what induced my scoliosis & the reason it was progressing so fast...

Within 4 years my spine went from no curvature to, 63 & 69 degrees, and was progressing by nearly 1 degree per week by the time I had the surgery..

pat
01-03-2005, 07:22 PM
Hi Mary Lou!

lol, Jamie's middle name is Pauline, named after her paternal grandmother.

Ali's number, as of last September were 12, but she goes again tommorrow (along w/Jamie for her (almost) three month post-op). I'm anxious to see if her #/#'s have changed. I hope NOT! Jamie's #'s were fairly low on first diagnosis, but within 6 months they practically tripled, which brought her right up to the surgery #'s. She had a big growth spurt over the summer.

I do take Ali to see Jamie's ortho, because I was the one who noticed Jamie's scoliosis, and again Ali's. And I know how quick those #'s can rise.

But I can clearly see a rise on one side of Ali's back, . . . you look at Tracy's back and do you see anything . . . . ?

Thanks!
Pat P.S. My father almost named ME Lynn! But my mother prevailed!

Mary Lou
01-04-2005, 06:48 AM
Pat,

I'm glad to hear that I'm not the only one who looks at her other daughter's back. lol I just have this horrible feeling in my gut that she will follow in Jamie's footsteps. I do not see any rise on Tracy's back and I pray that I won't.

How old was Jamie when she was diagnosed? My Jamie was 12 y.o. and Tracy will be 12 in April, so you know I'm worrying about that already.

Would you consider putting Ali in a brace or would you just go for surgery? I know the struggle we had with Jamie and her braces, we tried two different types, and although I wouldn't ever want anyone to go through surgery, I'm not so sure I could do the brace thing again.

Mary Lou

pat
01-04-2005, 07:15 PM
Mary Lou
MY Jamie was diagnosed at 11, wore the night brace for a year, then had surgery.

Jamie was only ever in a night brace, at her doctor's direction, because so often he felt that it was a compliance thing, with the all day brace they just weren't wearing it as much. And I told Jamie I would never put her in an all day brace, so she knew if the night brace didn't work it was surgery. And her doctor agreed. I'd do the same w/Ali; the all day brace is very very life altering. I've read the good results from wearing it, but it's a tough call. And I won't do it (have them wear a brace all day.) It's a tough age to ask them to wear it, and then surgery anyways. I don't know. Very tough and individual call to make for your child. Very individual.

Ali's #'s are holding at 15 and 11. A wait and see kinda thing. And Jamie's had basically all restrictions taken off her. Yikes! Can I handle this!?

Stay well! pat

jc3
01-04-2005, 09:54 PM
hi pat
i agree with you about bracing. It is so hard on them and i give some of these girls i hear about that wear their brace every day 23 hours a day. My nicole was given a brace a few years ago and was told to wear it 23 hours a day everyday. For a child in middle school or high school that is a very tough thing for them to do. She refused to wear it and at first we tried and tried to get her to wear it and finally gave up. The fights were not worth it. She ended up wearing it everynight to sleep and it didn't work anyway and she ended up having surgery. I have 2 other children; one is 10 so far no scoliosis but he is a boy and if boys do get it they say they usually get it later than girls and my little one is 7 and so far is fine. I am keeping my fingers crossed. I do not want to have to go through any of this again whether it be dealing with a brace or the surgery.
Also i have a question Jamie just had her surgery and what do you mean the dr. lifted all restrictions??
Jennifer

Mary Lou
01-05-2005, 06:48 AM
Pat,

Yes, you can and will handle this! I won't say that you won't end up with grey hair, lol, from stress/worry, but you will handle this. You have to handle this, 'cause how else will the rest of us get through it without your example? lol I take it that Jamie's appointment went well. I agree with Pat, basically all of Jamie's restrictions are lifted already? WOW!

I'm glad to hear that Ali's numbers are holding. We'll pray that they stay that way.

Jennifer,

I'll ask you like I asked Pat, do you personally check your other children's backs? Thank you for saying exactly what I thought when it came to Jamie's braces--the fighting wasn't worth it! My husband and mom used to tell me "just make her wear the brace." That's easier said than done. They weren't the ones in her bedroom listening to her cry and beg you to not make her wear it.

Thank you both for all your continued support/advice. I couldn't get through this without great people like you on this forum.

Mary Lou

jc3
01-05-2005, 08:29 AM
hi marylou
yes i have my other childrens backs checked at every physical. Right after nicole's surgery one of the attending physcians were in the room and she checked my son as well and said he was fine, but like i said he is still young. My 7 year old wasn't there at the time but she gets checked as well.
I know what you mean by people saying "just make her wear the brace", easier said then done. You can't force them to wear it and they're living with the screaming and crying about it. She was making our house nuts trying to get her to wear it. She had the surgery now 2 months ago and says that she is so happy she had it and doesn't have to deal with the guilt of not wearing her brace and she is glad she doesn't have to worry about scoliosis anymore, those were her words.
how is your daughter doing?? Nicole is doing good. School is going fine, she is still walking a bit stiff though. How about Jamie?
keep in touch
jennifer

Mary Lou
01-05-2005, 09:03 AM
Jennifer,

I'm glad Nicole is doing better. I think being back at school is good for all our girls. They need that support from friends.

Jamie is doing well. She has mentioned hip pain recently, but she is much more active right now. Her shoulder blade tends to hurt if she sits too long on the floor for example. She went to school Monday, but didn't manage to get there yeterday. She was to be at school at 7:30 a.m. and came downstairs around 6:00 and said she didn't get much sleep. I told her to go back to bed and she slept until almost 11:00! Needless to say, we didn't take her to school as her classes would be done at 11:25. Steri-strips are starting to come off. She is very cautious about people touching her back. She doesn't even want me putting lotion on the sides of her back which are very dry.


Mary Lou

jc3
01-05-2005, 09:15 AM
hi marylou
i'm sure jamie is going to have some days where she just doesn't feel so great and can't make it to school. How many weeks is she now? I know that nicole is ahead of her and is just getting back to school half days so jamie is doing great starting already. When we took nicole for her 3 1/2 week check up she still had steri strips on and they took them off, she was not happy. She still does not let me touch her back and the dr said that it needs to be touched and rubbed to desensitize it. He said if it is not touched it will never get the feeling back. Since nicole doesn't let me touch it i have the physical therapy person do it. Nicole cried the first few times the lady touched it. She said it feels weird. Nicole didn't have any hip removed they used bone from her ribs for the fusion, but i have heard of the kids complain of the hip after for a while being sore.
stay in touch jennifer

Mary Lou
01-05-2005, 01:12 PM
Jennifer,

Jamie is only four weeks post-op as of yeterday. I've already told her that if we feel it is too soon, I'll pull her out without hesitation. Her school has been great.

Here's a thought for you. Have you talked to your school about what Nicole will do when they have fire drills? Jamie's principal will notify her teacher ahead of time and Jamie will be called to the office since she leaves her classes later than everyone else so she can avoid the busy hallways.

Jamie didn't have bone removed from her hip or from her ribs for the fusion. They did osteomotomies on her and used the bone from that plus artificial material. I think the hip discomfort is just from adjusting to the different position of the spine, hips, etc plus the added activity of walking in school.

As for the steri-strips, at her two-week check-up, the doctor actually had a nurse put a few back on! He removed a few strips to remove the stitches and check her incision but wanted them replaced. He said at this point to just let them fall off themselves. I'm sure that will be different when we go back in February if they are still there. lol May I ask what they are doing in P.T.? Jamie's doctor said she'll probably start 3-6 months out to work on mobility and flexibility.


Mary Lou

jc3
01-05-2005, 01:34 PM
hi marylou
i can't believe that jamie is 4 weeks and is going to school already part time. Wow, that is awesome! I think the recovery is a little better for the kids who use the artificial bone. I know that "bills mom" from the board her son also used the artificial bone and was recovering alot quicker than my nicole and they had their surgery on the same day. When nicole was 4 weeks she was basically sitting on the couch all day and just starting little outings.
Nicole started p/t at 4 weeks i thought it was a bit too soon but that is what the dr. wanted. I was very nervous at first thinking they would have her do something that she shouldn't do yet, but basically they have her do some certain stretching of her shoulder muscles, they massage her shoulders, light massage on her back, she goes on a machine that looks like an exercise bike but it is just arm pedalling, and basically they are working on her posture and loosening her up a bit.
I am so glad that you mentioned the fire drills. Thank you. Nicole and i had talked about that before her going back to school and i totally forgot to ask them what she should do when they have them. I am going to make sure i give them a call and talk to them about that. That is important. Thanks again for reminding me of that.
jennifer

pat
01-05-2005, 02:33 PM
Hello Jennifer and Mary Lou!

Mary Lou, I just hung up from Jamie's school; we're all set with the fire drill issue, NOBODY even thought of that one - Thanks!

I'm so grateful to you both for thinking of these things.

Yup, pretty much lifted all her restrictions, she sat there grinning ear to ear, and I'm sitting there shocked! Well, I guess when you really think about it, what restrictions do they really have (am I clear on this?!), lifting heavy objects, bending, and .. . . . . ? So, he now told her she can lift up to 20 lbs., which is more than enough for any kid. And he had her bend right there in his office. Not to go crazy bending, but . . . . . Told her she can start diving (swimming/water) again. She is a little timid about that. I don't know!!!!! We go back again in three months.

I asked her ortho about p/t, and for "regular" scoli post op kids he doesn't prescribe it. She moves very freely, you'd never know she had a back issue, and she's certainly pain-free, and has been for at least a month now.

We shall see what the future holds!!!???

Pat

jc3
01-05-2005, 10:30 PM
hi pat and marylou
wow, that is amazing that she is allowed to do all that. I thought they couldn't do those things for a while. That is very exciting. I just received a letter from the dr. for me to give to the school and it said for her to get a set of text books for home and one for the class, no gym for the rest of the year and as of now she is allowed to lift 12 pounds. Nicole has only been to the dr. at 3 1/2 weeks and he said to come back in 3 months so we go back at the end of next month. I am looking forward to that appointment because nicole only bends from the knees so i'm sure she will be allowed to bend when we go back. That will be exciting.
I think nicole needs the p/t, she still walks a bit stiff. If you didn't know she had surgery you couldn't tell by looking at her, but i notice that she is still walking stiff. What is Jamie fused from?
And i have to remind myself about the fire drill issue tomorrow. Thanks
keep me posted on their progress

Mary Lou
01-06-2005, 09:37 AM
Hi Pat and Jennifer...

I'm happy for Jamie that her restrictions were lifted, but I too thought they were restricted for much longer. I think the thought of her diving into the pool would scare the daylights out of me! We were told Jamie probably won't be riding our 4-wheeler, go hunting, hiking in the mountains, stuff like that for up to a year. At this point she isn't allowed to take gym or run or jump for 3 months. We also have a set of books at home and a book in every class room (no lifting more than 5-10 pounds).

Isn't it funny how each doctor does things so differently? Nicole was seen at 3 1/2 weeks and will be seen again at 3 months. I'm not sure about your Jamie, Pat, but my Jamie was seen at 2 weeks and will be seen again at 8 weeks.

Mary Lou

jc3
01-06-2005, 10:42 AM
hi marylou
i was going to ask you about if she was allowed to return to gym, but you answered that. So in three months she is allowed to do gym class? Wow, i wonder why each dr. is so different. As i said, the letter i just received said that nicole will be out of gym for the year. I guess i'll no more when we go next month. Nicole wasn't upset about the gym though, she doesn't like gym class anyway.
stay in touch
jennifer

pat
01-06-2005, 12:45 PM
Yikes, sorry ladies, Yes, Jamie's still out of P.E. for the year, but he said she could run, jump and do anything. I didn't point blank ask him if she could rejoin P.E., and since the school's all set for her being out for the year, we'll hold off on it; Jamie doesn't mind, she's swimming every morning anyway. And we've been off hiking with her, she's doing it!?

She told me only yesterday, that about a month after surgery, she jumped from her bed over to be sister's, which is a couple feet away! I guess it's good I didn't know it back then, right!!??

The doctor says she's got enough screws and/or bolts in her protect her. I'm still on the fence if that's a good thing or not, I know short-term, of course, it is - - but long term . . . oh well . . ..

Keep posting ladies - Thanks so much!

Pat

Mary Lou
01-06-2005, 03:43 PM
I'm not sure if Jamie will be able to return to gym after three months or not. I'm thinking my Jamie's restrictions will be longer than that of others, because they really didn't use pedicle screws because her pedicles were so small, so maybe he is being extra cautious? Sounds like we all have a lot of questions for our doctors when we next see them.

Pat, here's a question for you: did you happen to ask if/when Jamie can ride amusement park rides? The reason I ask is that my girls' band is going to an amusment park/water park in May and I'm concerned that the fusion may not even be complete by then. What's the sense in raising $60.00 in fundraisers and then not be able to go?

Talk to you later.

Mary Lou

pat
01-10-2005, 01:46 PM
Hi Mary Lou, Hmm, I did ask him back in October if we could plan a trip to DisneyWorld for June, and he said that would be absolutely fine - - but, Jamie's surgery was a month earlier than your Jamie's, and it's June not May. Pedicles screws . . . never heard that term before, that must be the big difference.

pat

Mary Lou
01-11-2005, 06:49 AM
Hi Pat,

As I understand it, the pedicles are a place in the back where they place screws to anchor everything, thus the name "pedicle screws." Jamie's CAT scan and MRI showed her pedicles to be very narrow and they felt they wouldn't get a good result. Thanks, for you input--I'll ask the doctor on Feb. 3rd.

Anyway, Pat and Jennifer, have your girls returned to school full-time yet or do you know when they will be returning full-time? Our school contacted us yesterday and they wanted an update from the doctor to know how long Jamie will be part-time. After asking how she is doing I was asked if I felt she was ready for full days yet. I was told that most kids return full-time after six weeks. She suggested Jamie return on the 19th, so she would only go full-time for a few days and then have the weekend to rest. I requested we wait until the 21st because that's when they switch classes, so she returns full-time January 21st! This is all happening so fast!

Let me know what's up with your girls.



Mary Lou

jc3
01-11-2005, 09:31 AM
hi marylou
This monday that just passed (actually yesterday) was nicole's first full day! She did great with no complaints when she got home. The week before that she went half days for the week. when i had told the dr. when she would be returning to school for half days they asked "why half days". They also said most children go back at 6 weeks some even sooner. Nicole was 9 weeks when she went half days and now 10 weeks full days. I think they felt that she could have returned sooner, but i felt alittle more time wouldn't hurt and it was perfect to return after the break rather than before.
I am curious reading the post about the "pedicle screws". I have no clue what kind of screws they used for nicole. I know on the x-rays there were screws and rods, but have no clue what kind they are.
Your girls are doing great going back to school so quick!!
Jennifer

pat
01-12-2005, 01:10 PM
Hey MaryLou and Jen!

Jamie starts back full time in a couple of weeks, only because the new term starts then, and it didn't make sense to start now with the schedule changing in a couple of weeks. The only difference between truly full-time and what she's doing is that she'll miss the first two hours of school every day (till the end of the school year), because she goes swimming every morning (physical therapy). I'm the one that initiated the whole swimming thing (the doctors and school were absolutely fine with it), because I know once she gets back into school, all she's doing is sitting sitting sitting all day. She needs a strong body, besides the academics right now. And since she's excused from P.E.
Jen, sorry missed one of your posts: Jamie's fused from T-4 to L-2. Where are your girls fused?

Has anyone "peeked" at their daughter's scars, amazing isn't it? Stay well everyone! Pat

Mary Lou
01-12-2005, 05:21 PM
Hi Pat & Jen,

Our Jamies are fused pretty much the same! My Jamie is fused from T-3-L-2.

I've looked at Jamie's back several times. The doctor made it a point to show me her back as soon as she was sitting up and then showed me some of her incision at her two week check-up. It looks awesome! I took pictures of Jamie's back before surgery and can't wait to take pictures once the streri-strips are gone to compare. Has your daughters told you that they are looking at their backs? Jamie told me the other day that the scar is so thin, which she and I are very pleased about, of course we can only see about three inches total at this point, but it looks good.


Mary Lou

jc3
01-12-2005, 11:19 PM
hi marylou and pat

The first time i saw nicoles scar was in the hospital the 2nd or 3rd day when they changed her bandage for the first time. There were steri strips on there but it looked so much better than i thought it would. Then when the dr. took the steri strips off at 3 1/2 weeks i was able to get a real look. I was amazed how good it looked. Nicole would not look at her back until i think it was a week or two ago she looked at it. I don't think she really liked it. School is going pretty good. Monday there were no complaints, but yesterday and today she said her back her during a few of her classes. Monday and tuesday she had to stay after to make up some tests so it was a long day. I even gave her a pain pill tonight since she said her back hurt. I think she is overdoing it a little and the weather has been damp so i'm sure that doesn't help. She doesn't even rest when she gets home, but she said it doesn't hurt at home it's when she is sitting in the desk it sometimes starts to bother her. I feel bad for her, but hopefully she will get used to it. When she was going half days she was fine.
Nicole is fused T4 to L2.
well glad to hear everyone is doing well, keep me updated on the girls
jennifer

Mary Lou
01-21-2005, 04:19 PM
Pat & Jennifer,

I'm glad to hear things are going well for your girls. Are your girls still leaving class early? Jamie is still leaving class late to avoid the busy hallways and I'm still driving her to and from school. She has an appt. with the surgeon on the 4th of Feb. and I guess we'll continue as we are until we talk to the doctor. Personally, I'm in no hurry to put her on the bus.

Jamie was a little unhappy with me today. She is six weeks post-op and still has most of her steri-strips on. I took Carmelle's advice and put Bacitracin on them to loosen the glue. She did not like me touching her back. I just think it is time for them to come off. I told her it was either me putting Bacitracin on her steri-strips or the doctor taking them off!

Mary Lou

pat
01-21-2005, 07:10 PM
HI!!
Jamie still leaves her class early or sometimes late (like your Jamie is doing) to avoid the busy hallways, that's in place till the end of the school year. She also gets to eat her lunch in the teacher's classrooms (instead of the very very chaotic lunch room, and their's no backs on the seats/benches.) She has a bunch of friends who join her for lunch there. Jamie gets on a mini van, and it's just unbelievable, she's the only one on it, and they bring her right to my front door (we have a very long driveway; I can't see the road; otherwise I'd be standing down there everyday); it's really nice. I now do that with my other two daughters (I have an 8 year old too!)

MaryLou, I keep reading about Jamie's "steri-strips;" I don't know what you mean. Jamie just had a long narrow strip of gauze on her back, and that came off about two weeks after surgery. Jamie still has these steri-strips on?; what about baby oil, would that help get them off? Her poor back, I can't imagine what their backs must feel like, so sensitive!
Thanks!
pat

jc3
01-21-2005, 09:19 PM
hi marylou and pat,
nicole is still leaving the classes early and gets some x-tra time to get there and i am still driving her to and from school. We have an appointment with the dr. for feb 28th, which i have to cancel and i am going to make it for the 1st week in feb as well and i guess we'll find out when she can ride the bus and go in the halls with everyone else. I also am in no rush for her to do any of those things, just curious to hear when he would let her, but i'll still drive her for a while. She eats lunch though in the lunchroom.
About the steri-strips, I'm surprised they didn't come off from the water in the shower. Nicole's steri strips were still on when we went for her 3 1/2 week check up because she wouldn't get her back wet and they took them off. She was not happy. She doesn't like anyone touching her back. The nurse took them off with alcohol. I thought they were supposed to fall off on there own. Did they come off with the bacitracin? Nicole would have never let me do that. She really will not let anyone touch her back.
keep me updated still on the girls
jennifer

Mary Lou
01-22-2005, 12:41 PM
Hi Guys!

Jamie's steri-strips look like short strips of tape. They cover from the top to the bottom of her incision and they overlap each other just a little bit. She's had these since surgery. Right after surgery she had a HUGE gauze bandade and tons of tape, but the steri-strips were always under all of this. They changed her bandage only once, I believe, in the hospital and I had to change it about every other day until there wasn't any drainage. These steri-strips are very sticky and they are used basically to make sure the incision stays closed since they only used internal stitches. The strips seem to be coming loose, but we'll see once she gets her shower tonight.

Jamie eats lunch in the cafeteria as well. She would like to see the leave late restriction lifted, but I'm very happy with the arrangement.

We're expecting 7-14 inches of snow today. I guess we'll see how Jamie deals with not being able to go outside as this is really the first thing she has had to miss out on since surgery.

Mary Lou

susannajon
01-23-2005, 09:17 AM
Hi everyone, It is so encouraging to hear how well your kids are doing. Our daughter's surgery is scheduled for March 9th, so we are gearing up for all the pre-op stuff. I can't wait for us to be in your shoes!

One of my daughter's questions was when would it be OK for her to go to King's Dominion and get on the roller coasters. Dr. Boachie told us 1 year before he'd want her riding amusement park rides. I guess I'd rather be safe than sorry. One year away from roller coasters won't kill them and might mean many years of a problem free back. Gosh, I'd hate to have one day at the amusement park undo everything we've gone through. Maybe she can go along for the trip, cheer her friends on when THEY get on the big roller coasters, and maybe try some of the more gentle kiddy rides?

I'm such a worry wort!

Susanna

jc3
01-23-2005, 10:36 AM
hi marylou,
Nicole also wants to know when she can go in the halls with everyone else, i'm in no rush for her. We got the snow also here and yesterday she said she was "going" in the snow. Needless to say she didn't because none of her friends were able to get here. I hope today she doesn't want to. I worry also about the snow and ice lasting for days, i worry about her slipping.

susanna,
Did you ask boachie how long for other activities? Nicole used to be a cheerleader, i wonder if she'll ever be able to do that again? Nicole is doing great, she hasn't mentioned her back bothering her in a while, but i asked her the other day if it felt "normal" and she said no. I wonder if it does ever feel "normal" again after this.

susannajon
01-23-2005, 10:57 AM
Jen, From everything I've heard, there's no reason she shouldn't be able to cheer again if she really wants to. Maybe light stuff in 6 months and pretty much back to normal at one year. I don't know whether Boachie would want her being thrown around and such, maybe she won't be able to compete, but I'll bet she'll be able to participate at some level. I read on here all the time about kids who run, ride horses, play hockey, lacrosse, and basketball. Even if cheering is not going to work, I'm sure she can find something to keep her active and bring her joy. Maybe dance?

jc3
01-23-2005, 11:05 AM
hi susanna,
I think she realizes she will not be able to cheer again. I don't think you can even make the team if you don't do some kind of flips or something. She is very thin, so she was always a "flyer", which i wouldn't want her ever to do anyway again. I would be too nervous. I'm sure she will find something else to do. I am curious to see when we go back for her 4 month check up what restrictions will be lifted. My main thing was that i was happy with, the first dr. we were using had told nicole when she wasn't wearing her brace that if she had to eventually have surgery that would would have to wear a brace anyway after, which would have been a big problem. I worried if she wouldn't wear one before how was i going to get her to wear one after. Then we went to boachie and that was one of the first things i asked him, if she would have to wear a brace after and he said no. She was so happy about that. Did you get any snow where you are?

Mary Lou
01-23-2005, 11:48 AM
Susanna,

We are dealing with the same roller coaster issue. Jamie's band is going to Dorney Park (half is a regular amusement park and the other half is a water park) in May and I outright told her she wasn't going. We need to have a non-refundable deposit turned in by February something and how am I supposed to know how she will be doing in May? It is not only Jamie who is in band, but her sister as well which means I stand to lose two deposits. I really don't think Tracy would go without Jamie. I will discuss it with her doctor in February, but I, like you, don't want to risk everything for one day.

If you think you are a worry wart, keep reading! You'll find out that we are all worry about out kids...getting bumped in the hallway at school, cheerleading, going to amusement parks, and that's just what we've written about here! I've learned that we wouldn't be where we are now if I hadn't worried and asked a lot of questions. You can never worry too much about your kids.

Mary Lou

susannajon
01-23-2005, 03:43 PM
Jen, yes, we got burried. About 10 inches of snow, and today the wind is terrible! 25 to 35 miles an hour and it's only gotten up to 21 degrees. Not fun. We were supposed to have gone skiing this weekend, and sleep in the stone cabin with no heat. Thank goodness we backed out!!! It's an annual thing we do with our daughter's girl scout troup, and she just didn't think she could handle sleeping on cold stone floor. My husband and I are big wimps, we usually stay in a bed and breakfast and let our daughter stay with the scouts in the cabin. I would not have been able to sleep worrying about her in the cold last night. Her back seems to be so sensitive to temperature changes these days. I would have been terrible for all of us.

How about you guys? Looked on the news like the whole East Coast pretty much got clobbered.

jc3
01-23-2005, 04:48 PM
hi susanna
we got alot of snow too. Nicole's friends were here and they decided to go check out the snow. I didn't want her to, but she said she would be fine. I told her to go in the backyard because it wasn't slippery i don't want her to fall. All of a sudden i look out my front window i see her in the front on the driveway and she was running!! I was freaking out. They came in like five minutes later thank goodness. I don't think she's allowed to run yet! I am worried with the snow turning to ice just even getting in and out of the car, i don't want her to slip. I didn't think of all the snow and ice before we booked the surgery. Not the greatest time of the year to do it. I don't blame you for not going on the overnight trip. It would have been freezing!!
Jennifer

pat
01-23-2005, 05:12 PM
Yeah, post-op fusion surgery kids and snow; what a combination!! We got about 18 inches. A friend came over with snowshoes for Jamie, it worked out great. Jamie wanted to get on skis! It pacified her for the day!! Felt bad for her otherwise, all that beautiful snow.

Yikes, watching Nicole out there running on snow! It's hard.

stay well everyone!!!
pat

jc3
01-23-2005, 07:39 PM
that must have been fun snowshoes!!! What a great idea. That was nice of your neighbor. At least she got to go out in the snow for a while. It amazes me how great these kids are doing. I worry though what the future holds when they are older. I made the mistake of browsing on the revision board. It was very scary. I worry about all that.
Jennifer

Mary Lou
01-24-2005, 06:36 AM
Looks like you guys got all of our snow! We only got about 4 inches.

Has anyone complained of pain in their upper thigh? Jamie did not have bone removed from her hip but has mentioned that her thigh hurts lately when you touch it. Any suggestions? Can they still get blood clots this far out from surgery? It doesn't appear red or swollen, but the slightest touch causes her pain.

I don't think any of us were thinking about snow/ice when we scheduled surgery. I know I was scheduling to use Christmas break to avoid missing as much school as possible and we were thinking about where she will be in her recovery come summer.

Mary Lou

jc3
01-24-2005, 09:22 AM
hi marylou
sorry i can't help you with upper thigh pain. I'm sure someone here will tell you if you can still get a blood clot, but i would think it isn't anything to worry about. I know a few weeks after nicole's surgery she kept complaining that her knee her and we figured out what it was it was from her bending at the knees instead of at the waist. She wasn't used to doing that and she must have pulled a muscle or something. It only bothered her for a day or two. See we always have something to worry about.
stay in touch
jennifer

pat
01-24-2005, 01:11 PM
I hear you Jennifer, about that revision board, makes me nervous too. I can only pray and hope, and love the moment we're in. MaryLou, Jamie's thighs have always been sensitive since the surgery, I don't know if I'd say pain. But she's as sensitive about her thighs as her back. And her doctor said because the lenght of time during surgery/the pressure there. And now the nerves there are reawakening, a little more sensitive/painful.

We thought long and hard about winter surgery vs. summer, and I think if Jamie had no siblings, we would have waited for the summer. But, then everyone would have lost the summer, and now with the other two in school, it really works out better, and the summer we'll be relatively back to summer fun!! Pat

jc3
01-25-2005, 02:59 PM
hi pat,
that is also the reason why i didn't want to wait for the summer, i wanted her to be all recouped and be able to enjoy the summer and not have to sit in the house while her friends were out having a good time. We just have to worry about putting sunscreen at all times on the incisiion. I wonder how that's going to go since nicole will not let anyone touch her back. She says that it feels weird and sensitive, but i thought of the spray sunlotion.
jennifer

Kell Bell
01-25-2005, 04:36 PM
My first day back after my 1st surgery was only for one class. I was 17 and I had missed the first month of my Senior year of high school. I started going back just for chemisty and lab because I couldn't make those up. I had a fabulous teacher that came to my house once a week and tutored me on all of my other subjects.
Teachers were very easy going with me, besides the fact that I was a senior. My first period teacher even told me if I needed to miss his class once in a while that that was ok.
My mom actually took me to school a little after a week after my surgery so I wouldn't miss class pictures. That was exciting to me, my friends were great.
Your children may or may not deal with what I had to deal with....it took a long time for people to touch me again. I missed the hugs and arm tugs of my friends.
Good Luck with your children and as a teenager whose gone through it, let me know if you have questions about how we deal with it.

jc3
01-25-2005, 05:23 PM
hi kell bell
thanks for writing us. It's always good to hear people who have gone through this in their teens and how they are now doing years later. I'd love to hear how you are now doing years after your surgery.
Jennifer

Kell Bell
01-25-2005, 06:08 PM
Well - my story is interesting. My scoliosis was congenital and not idiopathic as most cases are.
I had my first surgery to put the rods in when I was 17, they did posterior and anterior so I have 2 large scars and they used a rib for a bone graft.
I was in ICU for 4 days because my lungs kept collapsing, that's also when they found out I was allergic to morphine!
I was in the hospital a total of 8 days. It took me a long time to heal, my parents had a hospital bed in the living room for me so I wouldn't be left back in my bedroom by myself. My surgery was in August but I stayed in the living room until december. I was scared to go to a normal bed!
My second surgery was to remove part of the posterior bar, and the third surgery was to remove the rest of that same bar.
My problem was that I had such a severe curvature (two 77 degree angles) I didn't really have a choice about surgery. It was that or be dead by 23.
My doctor said that by having the surgery it would relieve any back pain I may suffer from, but I never had any pain before the surgery and nothing but pain since.
I now go to a clinic that specializes in pain and I have learned to live with a certain amount of pain that I've accepted as a part of my life, my dad says he knows that if I admit that I am in pain that it is a pain that would not a grown man to his knees!
I think that is one good thing about all of this...I have an extremely high threshold for pain.
If I had it to do all over again, I'd really have to think about it, I don't know if I would.

Carmell
01-26-2005, 12:36 AM
Hi Kell Bell,

I'm sorry to hear you are having problems now. That's my biggest worry about my son's scoliosis issues. He is only 9yrs old, but has had fusion surgery (at 11 months old) and had VEPTR rods (2) placed at age 6. My fear is that as an adult, he will have chronic back pain with nothing, medicinally, to help.

I see you live in SLC - PLEASE email me at boulderfam@hotmail.com - I would love to hear more about your story (i.e., who the surgeon was, why they recommended surgery, what they are suggesting now, etc.). Braydon has his rod expansion surgeries at PCMC and I feel we have an excellent surgeon. Any advice you could provide would be greatly appreciated.

My best,

jc3
01-26-2005, 02:50 PM
hi kell bell and carmell
that is what i worry about alot also. It's a scary thought and i worry that if there are problems down the road our dr. will be retired by then or something.
Jennifer

Mary Lou
01-27-2005, 01:34 PM
Pat and Jennifer,

I know we've spoken before about pedicle screws and I figured since I was the one who brought the subject up, I should be the one to try and make sense out of all of this. I asked Linda to explain. Here's what she said: Pedicle screws actually replace hooks, and go directly into bone. Set screws (which are the only screws mentioned in Jamie's surgery) are what tightens the rods to the hooks, etc. The hooks are topped with an eye through which the rod is threaded. Once threaded, the set screw is tightened, locking the rod in place.

Just thought I'd share this with you.

Linda,

Thanks!

Mary Lou

jc3
01-27-2005, 01:40 PM
hi marylou,
okay, now i understand, but i have no clue what nicole has in her and now i'm curious. I will find out at next appointment. I don't know if i remember seeing hooks. I'm going to ask my husband when he gets home if he remembers.
thanks
jennifer

Mary Lou
01-28-2005, 09:12 AM
HOORAY! We finally got all the steri-strips off last night. At 7 1/2 weeks post-op we finally got a look at her back without steri-strips. It really looks good.

Jennifer,

I would bet that Nicole has pedicle screws in her back. Jamie's case is different because she is so small. She is 13 y.o. and about 4' 10" tall and only weighs about 90 pounds. Her pedicles are very narrow and even her veins are small. They had a very hard time starting an arterial line before surgery. Like you though, I would be curious and have to ask her doctor what type of screws he used.

Mary Lou

susannajon
01-28-2005, 06:54 PM
Hi Jennifer,

Dr. Boachie said he was going to use the Monarch device with our daughter (which he helped design). I don't know if he used the same with Nicole.

Here's a like to the site:

http://www.depuyacromed.com/products/deformity/monarch55.asp

Susanna

susannajon
01-28-2005, 06:57 PM
Hi Mary Lou,

So glad to hear you guys continue to do well, and that the steri-strips are all gone. I hope we're in your shoes this May with our little girl well on the mend!

Susanna

jc3
01-29-2005, 06:09 PM
hi susanna
wow, thanks for that link. Did he tell you about that website?? I bet that is what he used on nicole. I guess i'll ask when we go. Our next appointment is March 10th. It looked like what was in the x-ray that we saw. Nicole is continuing to do so great! Not one complaint from her i hope it continues! I am very pleased.
marylou,
if you looked at that website i think that is also a pedicle screw am i right??
jennifer

susannajon
01-30-2005, 08:08 AM
Hi Jennifer,

When we had our initial consultation, I asked Dr. Boachie what brand of instrumentation he was going to use, why he wanted to use it, and how long he'd been using it. I had never heard of Monarch before. As soon as we got home, I looked it up online.

Susanna

jc3
01-30-2005, 02:10 PM
hi susanna
you are good you probably asked more questions then i did! Just wondering if he said what the difference between those are. How are you guys doing. The date is getting closer. One more month right? What is her date of the surgery again. I remember it is in the beginning of March if i'm correct?
Jennifer

susannajon
01-30-2005, 03:29 PM
Hi Jennifer,

Yes, I had this huge list of questions, and Dr. Boachie was so patient with me. I grilled him for about an hour! Our surgery date is March 9th. I guess you guys will be there for your appointment while we're in the hospital. If you have a spare minute, you should stop by and say hello!

We've be watching your daughter's progress and we're so thrilled that she's doing so well. It makes this whole thing easier for us. I hope we're in the same place a couple months from now.

Susanna

jc3
01-30-2005, 04:58 PM
hi susanna
you will be in the same place that we are. Did i tell you the last time we went for our 3 1/2 week check, there was this woman there and i could just tell by the way she was looking at us that she had the surgery. I whispered it to nicole and nicole said no. We went in our room and the lady was in the next room from us and she started talking to me about nicole, etc. Needless to say she had the surgery and was 6 months post op, but she said she had a few surgeries prior not by boachie and had so many problems and finally found him, she said when she went to meet him she couldn't even sit on a chair to talk to him, she had to lay down and she went on to say how he was the only one who fixed her. It was great hearing that.
I thought that was your surgery date but i wasn't sure. I originally had an appointment on February 28th, but my husband wouldn't be able to go with me so i switched it and they didn't have anything available for the first week in march and the 10th was the only date they had. We will definitely try to come and give you a quick visit since the hospital is just across the street!
stay in touch
jennifer

Mary Lou
01-31-2005, 06:36 AM
Hi Jennifer,

I did check out the website and I think you're right, they are using pedicle screws, just using a different way of caping the rods. I don't think they used this procedure on Jamie because I remember reading in her surgery report where they bent her rods in the O.R. Sounds interesting though and now I'm curious to see if that is what they used on Nicole!

Susanna,

You will be in our shoes come May. You are doing so well right now with trying to learn as much as you can before surgery, and you'll see, it helps to be prepared. Jamie and I were prepared for the worst and got the best, but I felt it was very important to be prepared for anything. Keep doing what you are doing, but remember to take care of yourself also. Your daughter will need you. How is your daughter dealing with the fact of upcoming surgery? Thanks for the support on the steri-strip issue. As you will find out, to people who haven't gone through this or aren't facing surgery just don't understand what we all are going through. That's what's so great about this forum--everyone understands and no one ever puts us down for what we are feeling. Good luck and please know that we're here for you and your daughter.

Mary Lou

jc3
01-31-2005, 09:09 AM
hi marylou and susanna
susanna is using the same dr. that we used so i would bet that those are the screws that he used on my Nicole.

It is very true that people really don't understand how we feel and i really find that nicole's friends just don't understand either, but what can you expect they are 14. Since she looks fine they think that she is all better and can do everything she used to be able to do.
This forum is great to be able to talk to people going through the same thing and i thank you all for being there for me!
jennifer

susannajon
01-31-2005, 10:56 PM
Hey Mary Lou,

Thanks for your support. It means so much! My daughter is doing pretty well. She feels really good about Dr. Boachie and (typical teenager) is thrilled to be missing school instead of missing summer break to have the surgery. We have a bad family history with back surgery... My husband's brother died on the operating table during routine back surgery, so we have a higher degree of stress than most familes with this type of procedure. That's one of the big reasons I've researched this so thoroughly.

Jennifer,

Yeah, kids can be so insensitive sometimes. My daughter's kind of lucky because it's a really small school, and a kid died of brain cancer last year, so everybody is really tuned in to taking care of a kid who's going through a tough time. I am so glad we're not facing anything as serious as that! The teachers (except one "b" from hell) and the students are very supportive and understanding. It would be great if you guys could stop by. I'll bet my daughter will be needing to see a kid who's on the mend.

Susanna

jc3
01-31-2005, 11:30 PM
hi susanna
we will definitely try to stop by and find you guys. I'm sure your daughter won't be thrilled to see anyone, but we won't stay long and it may be good for her to see someone who's been through it and walking around and everything. When we went for pre op tests we met another family who's daughter was having surgery two weeks before nicole, and we were in the waiting area with them talking, we all said goodbye and good luck, etc. and that was it. Well, nicole had just gotten out of surgery and she was still in the recovery area and they came and found us. They didn't even remember our last name or who to ask for, they only knew nicole's name and that we used dr. boachie. It was so nice of them to come and see us. nicole was still out of it but they came in and saw her and it was good for her to see another girl just 2 1/2 weeks post op who was walking around and doing great.
Now what do you do about your pre op tests? Do you do them in ny or by you?
jennifer

marym
02-01-2005, 02:21 PM
Hi

I just happened upon this forum after checking out some websites I hadn't been to in years. My son had spinal fusion surgery in 1999 at 12 years old, 55 degree curve. Thought it might help to know that 5 1/2 years later all is well! I still check my 3 girls( ages 19, 14, 12) and they show no curvature. We had done a lot of research since we had no history of scoliosis in either family. We talked to several different doctors and surgery was the only option. In pre surgery tests, his lung capacity was already down considerably - something I wasn't even aware of. His surgery went well, up walking the next day, back to school within 3 weeks. He couldn't do sports or ride his horse for 9 months. After that he had no restrictions, except for tackle football which wasn't something he wanted to do anyway.

He' ll graduate this spring and heads to college this fall, majoring in equine studies. He does get occasional back aches from sitting in the school desks which cannot move, but otherwise no complaints. The surgeon was able to correct his curve to 18 degrees which was much better than hoped.

We took pictures of him before and after surgery, standing up and bent over, as suggested by a friend who had the surgery 20+ years ago...the difference is amazing. The scar has faded so much it's hard to see.

I still have had reason to hold my breath in the past few years when he's been thrown while doing cross country horseback events, but he wears a helmet and jumping vest and he's had no problem with his back. The most telling aspect may have been when he was taken to the emergency room after a fall at an event (ambulances are always at pony club events for cross country). He was taken as a precaution, since they weren't sure if he had blacked out for a moment. The emergency room Dr. was asking him routine questions as he checked him out... your age, any prior medical conditions? to which our son said no! My husband and I said Steve,what about your back? and he said oh, yeah, I guess. The doctor had to laugh, and said he probably would have noticed when he checked out his back, but said, in the future son, consider your surgery as a prior medical condition!

Anyway, just thought it might help those of you going through this now to hear of good results years later. Good Luck!

jc3
02-02-2005, 10:38 AM
hi mary
thanks for writing about your sons surgery and recovery experience. It really makes me feel so good hearing these sucess stories from people years later that are still doing good. My daughter just had surgery nov. 3 and is doing great so far. It also makes me feel good to know that even with a fall off a horse, everything in there still remained in tact. That's what i worry about alot, what if she falls, etc., will it be okay. So thanks so much for writing and i'm glad to hear he is doing so well.
Jennifer

Kell Bell
02-02-2005, 11:57 AM
after my surgery my parents and I were worried about how actions would be limited in the future. I can still do all the things I want to do...ride rollar coasters, play sports, have kids (although I have been told that because of my curvature that if I have kids they'll need to be delievered c-section) the only thing my doctor said I should try to avoid is bungee jumping (which I don't know if I would do it anyways) and that's just because of the snap, he said I could do it once or twice but not to make a habit of it.

I find that my back hurts more when I've been stuck in one position for a while, more than when I'm checked in a soccer game or knocked over.

My college teachers were very cool with me when I went. First day after class I explained that I had rods in my back and that sitting for long periods of time in a desk could really bother me, all were cool and said if I needed to stand up or walk around the back of the class, that was fine.

Good luck to your son in college. My first surgery was my senior year of High school, my second the summer between my freshman and sophmore year at college (going back made me nervous for some reason, I was highly sensitized) and my third I really pushed it and had it the week before my senior year started, I had my boyfriend drive me to class and carry my bookbag into class and waited for him to come get me after. Going back to school a week after surgery was really pushing it, I wouldn't recommend it, it may be why I'm having problems now. But I thought, hey I'm a pro at this, I can bounce back quickly, not a problem, so when the only appointment they had was for that week, I felt cocky enough to take it.

I hope your son does well in school, and don't worry about him getting tossed around, I have even made it through Mosh Pits I got caught in and come out fine.

pat
02-02-2005, 01:41 PM
Thank you for posting, I laughed and smiled! My 13 year old is three months post-op. Pat

jc3
02-02-2005, 01:41 PM
hi kim
again, another story that is great to hear since my daughter is only 3 months post op. It is great that you can do all those things. Just a question, from your post it seemed like you had more than one surgery, did you? If so if you don't mind me asking why?
thanks jennifer

Kell Bell
02-02-2005, 03:28 PM
Is the note addressed to Kim for me? I'm the only one I can see with a K in the name, my name is Kelli though. If it's not to me then pardon me, I'm going to answer anyway....

Yes I had three surgeries. The first surgery I was 17 and it was to put the 2 rods in. I had posterior so I have a 15inch scar down the center of my back, and anterior so I have a 10inch scar that wraps around my right side. They removed a rib so they could get to the front. If they hadn't done that they would have had to crack my sternum and go in through the front. I had two 77 degree curves. I still have very severe curves (top 59 and bottom 67) but they are stabalized and that is what matters since the surgery was to keep my spine from crushing my heart and my lungs.

My second surgery, when I was 19, was because I was having pain in my shoulder, and my doctors figured that the top of the posterior bar was poking my trapezius muscle on my right side. So they went in and to took a 3 inch section of the bar out.

My third surgery when I was 21 was because I was having pain again and could even feel a bump mid-back. See when they took the top section and its bolt, they left the new top section unanchored, the next bolt was 3 inches down from the new top. So it kind of turned and was poking out my back that you could feel it when you ran your hand down my back. Needless to say, we had the rest of that bar removed.

I now only have one bar, the one in front. The doctors say that's ok because it's actually doing all the work. It's stabalizing things, the posterior bar was just kind of "hangin out"

I kept both sections of the bars, and my uncle who blacksmiths made them into really cool wall hooks. Also, the doctors told us they were titanium but before blacksmithing them, we checked and they were actually surgical steel. Wonder how much a price difference that is that the insurance paid. I guess they don't think many people would check something like that. But we are science geeks and engineers in my family and we do stuff like that.

Mary Lou
02-02-2005, 03:33 PM
Mary,

Thank you so much for posting! My 13 y.o. daughter is 8 weeks post-op. It is so reassuring to hear success stories. Like you, I also took pictures of my daughter before and after surgery. I just got the after pictures back today and the difference is amazing! Since she isn't allowed to bend yet, we only have the standing ones so far. The standing pictures are amazing and I can only imagine the difference we'll see in the bending pictures.

Mary Lou

Kell Bell
02-02-2005, 03:40 PM
Reading about your son at the ER was funny. Since my lungs have a diminished capacity because of my curves, I get lung infections a lot. The first time I got plurasy I thought I was dying and had my parents take me to the ER, they took an X-ray to look at my lungs and after it was developed and we were waiting for so long, we finally asked what was taking so long....The radiologist came out and said he had paged my doctor (which made our hearts skip a beat) because he smiled sheepishly....with the bars and bolts he couldn't read it, I had forgot to tell him about it and he got the surprise when the film developed.

Silly how things work out sometimes.

jc3
02-02-2005, 07:55 PM
hi Kelli
i am so sorry, that note was for you and i wrote the wrong name. I do apoligize. Wow, that is some story. I am sorry you have had to go through so many surgeries. That scares me for my daughter. Once was definitely enough!! But i'm glad to hear that you are doing well now. Thanks for sharing your story.
Jennifer

susannajon
02-02-2005, 09:27 PM
Hi Jennifer,

That would be great if you could stop by. It would be so great to meet you in person, and it will be great for my daughter ( and for us) to see a kid who's post op and doing well. I can't wait to say hi to you!

Pat, Kim and Marym it's great to hear your stories! It makes it easier to go through this and feel hopeful about my daughter's ultimate outcome! Thanks for taking the time to post.

Susanna

Mary Lou
02-03-2005, 08:23 PM
Jamie went back to the doctor today for her 8 week checkup. She is doing great! She starts p.t. as soon as we get it scheduled. Her restrictions remain the same--no lifting more than 5-10 lbs; no gym; still has to leave classes early. She can't go to the amusement park in May with her band either. The doctor had her bend and that went better than I thought it would. He wants to see her back in June.


Jennifer & Pat--

Looks like those darn pedicle screws are making all the difference in our daughters' different restrictions.

Mary Lou

jc3
02-03-2005, 10:27 PM
hi marylou
glad to hear the appointment went well, except i'm sure jamie wasn't too happy about not being able to go to the amusement park in may :( That is a bummer. Is she upset over it?? That is hard all the restrictions that are for so long.
I don't think my dr. would let nicole go to an amusement park so soon after either. Nicole hasn't complained or mentioned her back in weeks and weeks and last night she said her back was bothering her and this morning said it was still bothering her. She stayed home from school today. I hope it goes away. I don't think it's anything serious, i just think that it might be the muscles mending or maybe that it is supposed to rain tomorrow. She isn't in too much pain, she said just alittle uncomfortable. I hope it goes away. It just bothers me because there hasn't been one complaint in so long.
Jennifer

susanna
We will definitely try and come see you. I look forward to it also!
Jennifer

Theresa
02-03-2005, 10:31 PM
Mary Lou

I don't think the pedicle screws make a difference in recovery time and restrictions. When I was e-mailing my doctor about some questions, I mentioned that other people were doing things that I couldn't do yet. He said not to generalize this type of surgery. In my case, he said due to the severity of the curve, the length of time that I have been living with it like that, and the magnitude of my surgery that I shouldn't be doing things that other people are able to do. I had alot of muscle atrophy from before the surgery so I'm having to redevelop those muscles plus they also have to heal from the surgery. Just take one day at a time. Missing out on a few things now (full recovery can take up to a year) will in the long run give your daughter a much brighter and healthier life.

Alison
02-03-2005, 11:28 PM
Umm Hi :-) mary lou

Just some food for thought on the use of/non use of pedicle screws and effects on restrictions. I had a relatively "short" fusion, T2 to T11 and they did use pedicle screws but i had the same restrictions and over the same time period that your daughter.

Alison

Mary Lou
02-04-2005, 06:45 AM
Hi Jennifer....

How's Nicole feeling? We both know it is probably nothing, just over tired or something like that, but again, there is always something to worry about! Jamie wasn't really too bummed out about not going to the amusement park. I think her sister is more bummed because she isn't going either. I told them they probably weren't going, because it just doesn't sound to well organized/supervised and I don't want my 11 y.o. daughter running around an amusement park alone or with a few friends.

Theresa & Alison,

Thanks for your thoughts. The only reason I blame the restrictions on Jamie's lack of pedicles screws is that the doctor keeps repeating that fact. He commented at her 2 1/2 week checkup that he is really concerned about the top portion of her back and that he wished her pedicles weren't so small. There could be several other reasons for her restrictions-long fusion (T-3-L-2); long time in O.R. (7:45 a.m.-5:00 p.m.); the fact that they corrected both her Scoliosis and Kyphosis; so I guess maybe I shouldn't blame it all on the lack of pedicles screws, but it sounds like the most logical reason. As you said, full recovery can take up to a full year and that's what we've planned on, but we Moms like to compare notes and we need to know every detail of what's going on with our daughters.

Mary Lou

jc3
02-04-2005, 09:31 AM
hi marylou
thanks for asking about nicole. She seemed fine this morning when i woke her up for school. She didn't complain of it. I guess she wasn't in too much pain yesterday since i asked her if she wanted to run to the mall with me she had a few returns to make and i can't stand going on weekends with all the crowds, so i said since you are home do you feel up to taking a ride to the mall and immediately she said yes. When i said are you in too much pain to go she said no. So i guess it wasn't that bad. It does seem like some drs. lift restrictions earlier than others. I guess it depends on the fusion and the dr. My daughter has spoken to some girls from the other message board who have had their surgery after nicole and one of them is already allowed to go back to dance class! I didn't realize how long Jamie's surgery took. Why did it take so many hours?? Nicole is fused T4-L2 and her surgery was exactly 4 hours. That was a long time waiting in the waiting area. I'm sure that wasn't easy.
Jennifer

Mary Lou
02-04-2005, 03:39 PM
Hi Jennifer....

Isn't it funny how the girls can have pain, but when you mention going to the mall, things change? I am glad she is felling better and you know it didn't hurt her to miss one day of school.

Part of the reason Jamie was in the O.R. for so long was that they had a very difficult time starting some of the lines they needed, but her surgery itself took over five hours and that isn't even counting the time it took to close the incision. From the time they made their incsion until they were ready to start closing the incision was 5 hours 15 minutes. And yes, it was a long wait, but thankfully we have an excellent surgeon who gave us updates at least every hour, and sometimes more often.

I do think some doctors lift restrictions very early. I wonder how those kids will do long term compared to our girls who are more restricted? I would stick with full restrictions for a year if it meant a better recovery or better long term results.

Have a great weekend!

Mary Lou