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phaden
04-18-2004, 05:18 PM
Hi:

Any news on how Peggy's daughter's surgery went? I think 15th April was the date.

Patricia

Peggy
04-24-2004, 04:35 PM
Hi Everyone,
We just got home today, Sat. the 24. The surgery went very well. It was 9 1/2 hrs. start to finish. Her curves were 60 on top and bottom and are now 20 and 20. The surgeons were very pleased with the outcome. She has screws from T2-T-4 and down to L-2. Very extensive but successful. She spent 6 days post-op in intensive care and 2 1/2 in a regular room. It has been a long, tough ten days. She still has a small amount of fluid in her lungs but they said she would work this out with movement. Her digestion is still pretty much out of wack, stomach way extended. It took her till day 7 to have a bowel movement and so far that has been it. So we are hoping that comes around. She is tolerating the pain pretty well with just Tylenol 3's every 6 hours. The nights are still rough, a lot of discomfort. She is walking pretty well but still a little unsure. She just received her brace this morning and that was quite tough. The doctor wants her to wear it at all times except at night when she is sleeping. Six months minimum. So that is her biggest hurdle right now to get used to that. Very emotional at the moment. Its hard to tell a 13 year old to be thankful that the surgery went so well and that she is home when the worst thing she can imagine at the moment is wearing that brace. But she will just have to adopt. As a mom I feel sorry for her but at the same time I am on cloud 9 that she is home safely and everything went well. I feel like I am finally waking up from some awful nightmare. Thanks everyone for all your support. I couldn't have made it without this site. I hope things are going well for everyone. I will come back on soon and read and catch up and hope to answer any questions anyone has. Right now I'm still too fuzzy headed to think clearly. I'm just so happy and relieved to have her home.:)

MaryK
04-24-2004, 05:05 PM
COngrats on the successful surgery. Your daughter's reaction to the brace comes from being overwhelmed. Try to get her to talk about the experience. Talking will help her work things out. I had the similar reaction when I had my surgery at age 13. I had to go back to the hospital for pictures of my back and completely feel apart. The next few weeks will be rather hard on her but it gets better after the 1st month. Not letting her bottle things up is rather key. She has a lot of pent up emotions that need released. then she may feel a little better about the experience!

dapsbounce8
04-24-2004, 06:15 PM
Peggy-
I'm so glad to hear you and your daughter are well.

I had the same problem with bowel movements. It took me seven days to have one, and that was only after several suppositories. When I returned home, I had the same issue, and eventually had to resort to an enema. NOT fun. I know it can be really painful, so I recommend walking as much as possible. That really helps to get things moving again. I also took colace (a stool softener) and metamucil pills (fiber supplement). Those worked really well.

To a safe recovery...

paulasue2
04-24-2004, 09:25 PM
Hi, Peggy,

Wow, wonderful news! I am so happy everything went well and that you are back home. It sounds like she had an absolutely awesome result. That was one LONG surgery! How was the ventilator experience? Why was she in ICU for six days? Did your doctor tell you why she will be wearing a brace? I know sometimes doctors require it and sometimes they don't, but I have never heard why. Did she gain much height?

That digestive issue is a real pain - figuratively as well as literally. My daughter looked like she was six months pregnant before things started to improve. Moving around as much as she could helped enormously, but she really needed the help of the laxatives, etc. they gave her. I can't help but wonder if the kids wouldn't do better if they start out "empty." I asked our doctor about that before the surgery because I had talked to another parent who had warned me about this issue. The doctor's position is that because the kids are so horribly embarrassed by the whole issue, they think it is better to only treat the ones affected by the problem than try to prevent it in everyone. Guess this makes sense, but still....

At one month post-op, things are pretty much back to normal around here except that Sarah has developed an aversion to anyone touching her back in the vicinity of the incision. I guess this is to be expected as she is probably worried about getting hurt, but it is still something new so I hope it doesn't develop into a bigger problem. She doesn't need my help doing anything any more, the incision is completely healed and she is off all pain medication. She still has an area of numbness over one shoulder blade (which I think is normal), but the feeling has returned in all the other areas that were numb right after surgery. Except for the fact that she has to squat down to pick things up, I don't think anyone looking at her would have a clue that she has had this surgery.

Again, I am so happy that all is well. Post as soon as the fog has lifted!

Paula

Peggy
04-25-2004, 04:07 PM
Hi
Thanks Charlotte for the well wishes. She has been taking suppositories all along and is still on stool softeners so hopefully these will work. Her stomach has come down some but she still looks 6 months pregnant. The brace won't close properly so hopefully when it goes down it will fit more comfortably.
Hi Paula, so glad your daughter is doing so well. Wow. Seems like we won't ever reach that point. I can imagine how your daughter feels about touching her back. I am so paranoid everytime my daughter gets up. Terrified of her tripping and rolling off the bed. I know with time this will pass but right now I'm a basket case. Her surgeons just said from the start that she would have to wear this brace for a minimum of six months. She is fixed from top to bottom but your daughter is too right? I feel better when she has it on. We are weaning into it slowly. Few hours hear and there. She hates it and it is rubbing under her arms so I am calling them Monday morning to try and fix it. This will be her biggest hurdle. Says she feels like a freak, etc. The Brace doctor said most kids wear it just for activity but her surgeon said always except for sleep. I know her surgeons put screws in her t-2 to t-4 and he said no one else in town does this. They normally use wires and clips up that high. Said it is more dangerous a procedure. (He tells me this AFTER the surgery. I was already terrified enough). That is why they got such a good correction. It was a very long surgery. She got off the ventilator the following morning around 11:00. So relieved about that. She had some fluid on the lungs and the digestive issue but those were the only lingering problems so I am not sure why she was in ICU so long. She seems to be tolerating her pain really well on the tylenol 3's. We haven't measured her yet but I think she has grown 2+ inches. I can tell by her standing next to me. I almost fainted the first time she stood up! She hated when she was 5'8 let alone when she realizes how much she grew. Hasn't hit her yet. Trying to convince a 13 year old being taller than everyone is ok is tough. She really amazed me how well she handled this whole thing. The surgeon told her she was the best patient he ever had. Nurses said they couldn't believe how she hardly complained and how she pushed herself up and moving on her own so quickly. I am so thankful she has an inner strength I didn't know she had. We told her over and over before hand that she had to push to get herself out of the hospital so I guess it hit home. Plus she was really afraid of getting pneumonia so she tried hard to get moving. It is such a relief to have this over. At least the scary part. Now to get her used to this brace and not afraid to walk, do things on her own. Do you know what would happen if she fell?:confused: Has anyone ever fallen early on? I couldn't imagine having something break in there. I worry that she is going to twist the wrong way or bend too much. I know you said Sarah squats down to pick up. Does she move pretty normal otherwise? I can't imagine watching every movement for a year. I suppose with time this fear relinquishes. Thanks for asking about her and all the help from everyone. Sorry this is so long I am not yet out of the fog but it helps to talk about it. I can't believe it is over.

MaryK
04-25-2004, 10:07 PM
I had a similar fusion surgery at 13. My back WAS twisted just after ther herrington rods were in place. A nurse turned me wrong. My back was just fine and the rods stayed in place. So it is possible to twist and not have damage.

She'll feel a little more solid on her feet in a week or two. Walking with a straight back is very strange and throws off your balace. I wouldn't walk without someone nearby for 2 weeks before I started to relax. Stairs are a bit scary at first though, but she sounds braver than I was! You'll start relaxing in a week or two also! :)

Paula, that huge scare is not easy to get used to. It's also rather sensative. It was years before I could use a bra that closed in back, I couldn't stand it. As time goes on and she heals more your daughter will realize that it won't "pop open" on her or some other horrid idea. Let her know that the sensativity does go away! I had similar concerns.

I'm glad both girls did so well with their surgeries! Once they have gotten past the 1st 2 or 3 months they will start realizing how much their lives have changed. At 28 I'm still glad that I had the surgery. I have perfect posture!!

Peggy
04-26-2004, 01:00 PM
Thanks MaryK. That relieves me to hear about the twisting. (What an awful mistake by a nurse!) I'm sure we will both settle down as the days go by. She hasn't seen her incision yet. I'd like to hold that off for awhile. :) When I tried to explain to her about how straight her shoulders were and that her rib hump was gone she was sort of in denial. She said she couldn't tell her shoulders were crooked before and that she couldn't see her back hump anyway. But I know she saw because she was very crooked. Its amazing how perfect she is now. I didn't expect that huge of difference. Am very thankful. And I know she will be too when she gets past this initial tough time. We walked around the back yard today even though she didn't want to. Mean mom. I still stay by her side. Not ready for the solitary walk yet. We are taking her brace to be trimmed down on Wednesday morning and am hoping that helps some. I can't imagine how the kids wear it sleeping in bed. She looks so uncomfortable sitting up let alone laying down. I take my hat off to all of you that have to wear it for years.

MaryK
04-26-2004, 01:53 PM
Thankfully I didn't have to wear a brace before or after surgery. I guess it all depends on the method they have to use to fix the rods to the spine. My doctor used clamps that he developed, so I didn't need to brace. It is hard to believe the change in yourself. Once she sees herself in the mirror in an outfit that she didn't look good in she'll change her mind. It's just that 13 yr old thing. Congrats again on the improvement!

dapsbounce8
04-26-2004, 10:05 PM
Peggy-
I feel the same as your daughter - I keep asking myself, "Why did I have back surgery?" I'm upset that one of my shoulder blades still protrudes and I don't know that the surgery was worth it.

I guess that acceptance comes with time, but theres so much regret and missing old activities after surgery that I think the sort of denial phase is normal.

I have my three month appointment next week...I hope everything goes well. I'm going to try to persuade my doctor to let me start walking on horses (he said not until august).

Good luck all!

MaryK
04-27-2004, 01:55 PM
daps, it isn't likely that you'll be allowed to walk on horses. The reason is that it takes a long time for the bones to heal properly. After my dad went back to work after his fusion surgery he was told absolutely no scaffolding or ladders. Well, he didn't listen and 2 of the rods pulled loose from the spine. A yr later he had to have anothe surgery to remove those loose ends. as much as you want to return to your activities now, be patient. By waiting until august you ensure that you WILL return to your activites. Doing that too soon could mean not returning to them ever. Just remember how important your health and your back is!

Peggy
04-27-2004, 02:01 PM
Hi,
Charlotte I think MaryK is right, take it easy so that you don't ruin anything for later. I know it seems an endless amount of time to wait but the benefits outweigh the wait. You would hate to have to have anything else done. You are right about having doubts about the surgery. Those are probably natural but you kids did the right thing. The knowledge of that will come in time. Good Luck at your 3 month appt. Thats quite a step! You've come far already!

paulasue2
04-28-2004, 04:01 PM
Peggy - Tell your daughter that being that tall is going to be great. My daughter is now about 5'7" and is the shortest one of the 8 or 10 girls she hangs out with! I am one of the "vertically challenged" and am green with envy! At 13 years, most of the boys are still short, so she probably feels extra tall, but that will really change in a few years.

I wore a Milwaukee brace for almost three years when I was her age, and it was pretty awful. It was a chin to hip joint contraption that allowed no movement other than my very erect head turning from side to side. But, even so, eventually I figured out how to do most things in every day life - school, sleeping, hanging out. Six months must seem like an eternity to her, but maybe breaking it down into smaller parts - days to cross off the calendar for instance - might make it more manageable. There are a couple of girls in my daughter's school that are wearing the new smaller ones, and with loose clothing, they are almost undetectable.

As far as the movement thing - she is sort of acting as her own brace, for lack of a better description. She doesn't twist or bend other than at the hips (with support) and doesn't carry any weight (even though the doctor said up to 20 pounds is OK). Right now, if she pushes those limits, she feels pain, so it is self-limiting, but I don't know if this will always be the case. Other than the squatting to pick up things, the only other thing that probably only I notice, is that when she is in a hurry, her strides are still a little shorter than before. Other than that, she walks with a graceful, poised "beauty pagent" walk, that all of us without that wonderful posture can only dream of.

Paula

paulasue2
04-28-2004, 04:04 PM
MaryK - I was wondering if you would explain a bit more about the - "Once they have gotten past the 1st 2 or 3 months they will start realizing how much their lives have changed" - that you mentioned in your previous post. She is entering that phase now, and I am very interested in what your experiences were.
Thanks!

paulasue2
04-28-2004, 04:05 PM
Peggy - I read my own post and it looks like I said my daughter is fifty-seven inches tall - it is actually five feet, seven inches!
Paula

MaryK
04-28-2004, 05:16 PM
Paulasue,

It takes about 2 to 3 months for the trauma of surgery and the change to lessen a bit. For those 1st months your terrified to do anything. I was told just how easy it is to be paralyzed so I was extra, extra careful. After these 1st months you start forgetting to be so careful. The pain lessens and you find yourself doing something without thinking and it doesn't hurt! You also start getting used to your new center of balance. Once all that starts happening you see the changes that everyone else has already seen! For me it was the fact I could sit back in a chair. I also found that getting out of bed was easier. All those, 'the way I look' issues suddenly seem changed. You put on an outfit that didn't look right before and suddenly it looks great on you! When you bump your head on the car as you get in for the billionth time you admit that your taller too. And if she was like me, terrified about paralysis, you realize that you've made it this far without a problem and maybe you don't have to worry as much. My mom really drummed it into my head the risk of being paralyzed. You know the worries, what if the doc slips in surgery? What if the rod moves? What if I forget and twist and something ,moves? My mom talked about those worries alot. So it's possible (probable) that your dughter isn't as "obsessed" with it as I was. But those are the big changes that I remember most!

phaden
04-28-2004, 09:37 PM
MaryK:

Can you elaborate on the risk of paralysis from incautious movement post-surgically? This is the first we have heard of such a thing.

paulasue2
04-28-2004, 11:27 PM
Hi, MaryK

Thank you for your response. I am happy to hear that these things are positive. I was worried that she might start focusing on things lost rather than gained (the fact that she has to keep her incision out of the sun all summer is getting a lot of attention around here, for example). I had never heard about any problems with paralysis from incautious moving - our Dr. is concerned with making sure the fusion heals as fast and strong as possible - and the big three - "bending, lifting, twisting," can have a deleterious impact on that.

MaryK
04-29-2004, 02:09 PM
I believe that the paralysis issue was more my mom panicing then anything else. She was terrified that the rods, which are held on by special clamps, would move and injure the spinal cord. It was all she could think about! To this day she's still panicy about it, and I'm 28 now! She made sure that I knew that she was worried about the rods moving. The 1st few weeks I was terrified to do anything that would move my back at all. I know now that that was her own fears taking over, but it effected me very badly. At 13 it's easy to obsess about the worst ideas. Between my mom's inability to talk about anything else and my internalizing it I had caused a lot of emotional issues. Those unreasonable fears also kept me from "pushing" myself back to normal activity. I'm hoping that knowing what I was thinking at that age after surgery will give you a heads up on what could be going on in your daughters heads. Getting them to talk about there feelings is as important as recovering physically. I know this from experience.

MaryK
04-29-2004, 02:22 PM
I just reread my last post. I didn'y mean to scare you! I just wanted to let you know how drastic the emotional upheaval can be. It's hard to deal with major surgery and being caustious afterwords.

Paulasue, let your daughter know it's worth forgoing the tanning this summer. Getting a sunburn on that scare is painful! I burned mine a few yrs after surgery and it hurt, so doing it earlier is defianetaly worth avoiding! :) Remind her tat by being smart now she can relax later on. One summer of being caustous is better tan every single summer! Just remember that sunscreen is your friend!:D

Peggy
04-29-2004, 02:38 PM
MaryK, I am thinking like your mom right now! Not saying anything of my fears to my daughter though, just reinforcing the fact that she can't bend, lift or twist. I'm sure you are right that it takes a long time to get back to your old self. Patience and caution are in order. I'm sorry your recovery was hampered by extra fears but thanks for the imput on emotional issues.

MaryK
04-29-2004, 02:40 PM
I'm glad that my experiences can help others understand what they are going through! Any hardship I had is worth it if I can help someone else because of it.

Peggy
05-05-2004, 01:59 PM
Hi Paula,
I notice that my daughter has shorter strides also. She doesn't seem to relax when she walks. Walks stiff. Your surgeon seems more lenient than ours. She can't lift more than 8 lbs/ gallon of milk. He doesn't even want her squatting. Says she should wear the brace into the shower, take if off, and then put it back on to get out of the shower. And I think that I"M paraoid about her falling! She went for her first checkup yesterday. He said everything looked good. He is making us a cd of her surgery photos (spine exposed and all..). She doesn't want to see them at all but I figured I'd take it anyway. He showed us some on his digital camera screen immediately after the surgery. It was hard to see much because it was such a small screen and I could handle seeing them but I don't know about looking at them magnified like on a computer screen. Might not have the stomach for that. It was amazinig to see her spine like an S and then afterwards almost totally straight. It is 3 weeks postop tomorrow. Time is going fast. She still is resting alot but I see an improvement in mood and movement. She is down to one tylenol every 6 hrs. The trip to the doctor wore her out. We had to sit in straight hard chairs for over a half hour waiting for x-rays and then the trip itself takes 35 minutes one way. So it was her first big outing. Next week I hope to get her to the mall or to the bookstore at least. She sweats so bad in this brace. She had to have the air conditioning on in the car and it was only 50 out. Glad your daughter is doing so well. 5'7 and the runt...that is funny. We have no tall girls shops around here. I will have to shop onlline for pants. She is 5'10 now. Can't believe it.

MaryK
05-05-2004, 06:48 PM
It's fantastic that your daughter is doing so well. She'll start walking more normal as more time goes by. Being straight is rather hard to get used to! It took me almost a full yr to go up stairs without looking like I was stomping! :D As far as the surgery photos, leave the cd where she can find it so if she wants to see them she can. My own opinon would be no way! Yuck! but then I don't have the stomache for that either.

dapsbounce8
05-10-2004, 10:58 PM
Hi! I haven't been on the boards for a while...busy with school I guess.

Good news! I saw my doctor on May 4th and he said I can start to walk on horses again. He seemed very sure about the decision because I have healed so well and he knows I am very experienced with horses. But don't worry...I'll be very careful.

I was also approved for fast walking and slow jogging. I've really been trying to get back in shape, but I keep reminding myself to take it slow. Thank you all for your support.

MaryK
05-13-2004, 02:11 PM
That's wonderful Charlotte! Taking getting in shape slowly is a good idea at anytime. The reason is that when you are out of shape it is easy to injure muscles. So go with the idea that if the muscle starts to hurt stop for a while. that way you never reinjure a muscle or joint and when you do get inshape it will be easier to maintain!!

ellen
05-16-2004, 04:10 PM
peggy-hey! i had surgery last october 6th and i never had to wear a brace afterwords? why is that?! what does it do? also, i fell down the stairs like in march **carpet ones** but my back is fine, i think it is...i havnt had it Xrayed, because it doesnt hurt....i have an appt though this month....also does anyone know when you can ride rollercoasters again? jw my doctor said it was fine last week when my mom called but the nurse said it was a bad idea...so i just didnt ride any friday when i went to six flags...but i was just wondering if it would hurt or if anyone has had any experiances related to my situation or watever....you can email me at LilCutiPie_07@yahoo.com or just write back in here...THANK YOU!!

dapsbounce8
05-17-2004, 06:57 PM
Pre-surgery, my doctor told me that there is a 1 out of 10 chance that I would have to wear a brace after my surgery. I think its just one of those things that depends on how the surgery goes.

As far as rollercoasters go, I was told that you should wait one year after surgery. I had a single fusion, so the restriction might be greater for someone with a double fusion.

I hope I've helped!!!

ellen
05-17-2004, 08:02 PM
yes thank you charlotte!! i had a double fusion...i think lol all i kno is that i had 2 curves that were liek 51 and 27**i think thats it**its in my profile and that they took my rib and fused it with 4screws and a medal rod!! and its really cool, b.c i didnt kno my rib would grow back....its about to connect with tha other....hehe but yeah....thank you for tha quick response...i was also wondering about water rides...like slides....should i just stick with the ones where you are in an inner tube and ones that dont frop you frum tha slide into tha water...b.c would that hurt really bad or like screw up my back?! im goin to hurrican harbor**BIG water park in arlington,Tx on sunday and was just wondering....thank you.....my email is LilCutiPie_07@yahoo.com luv~ ellen
THANKS AGAIN!!!

dapsbounce8
05-17-2004, 10:40 PM
Sorry to be the bearer of bad news, but you really shouldn't be on any amusment rides for at least a year. It might be okay to go on some VERY gentle ones, but, seriously, take it easy. If you aren't sure about a certain ride, don't go on it. But try to have some fun :D !

Good luck.

Peggy
05-18-2004, 08:38 AM
Hi Ellen,
I second Charlotte's message. Stay away from amusement rides for at least a year and even then use good judgement. A lot of roller coasters are tough on a normal back let alone one fused surgically. As for the brace, the surgeons said from the start she would have to wear it for a minimum of 6 months. Her surgery was very successful so it wasn't based on the outcome. They just said it was for support and protection. I wish she didn't have to wear it but I respect their decision. I feel more comfortable when she has it on. Unfortunately she doesn't! Be careful at the park. Have fun!

ellen
05-21-2004, 03:58 PM
hey charlotte and peggy!! thank you sOoOo much for the advice...i went last friday and ended uo just riding the mine train...its a pretty easy ride, my friends would let me do anything...and im glad for it too!! b.c personally i dont think i should have even done that 1!! but thanks to my friends!!! its just hard going to an amusment park and like doing nothing, because i liek LUV rollercoaster! ill be carefull thogh when i go to the water park on sunday!! im not going to do anything that like drops you from the slide to the water....and then only ones that im like in a float n then tha laxy river and wave pool....okay sorry im just like rambling on and on....so i guess i will go now....GOOD LUK TO EVRYONE ON FINAL EXAMS THIS NEXT WEEK!!! and charlotte and peggy----thanks for the advice!! much luv ~ *ellen*

dapsbounce8
05-21-2004, 04:29 PM
No problem ellen - I'm happy to help. I'm glad to hear you are taking it easy. And thanks for the luck with finals, I'll need it!!!

Peggy
05-22-2004, 11:03 AM
Glad you had fun at the park Ellen! You did the right thing taking it easy even though it is not much fun. Hope your day at the waterpark goes just as well. Good Luck!

OneofFive1
05-22-2004, 02:28 PM
ellen,Glad you had fun!
what water park did u go too.

ellen
05-22-2004, 05:44 PM
hey!um...i havnt gont to the waterpark yet...thats tomarro!!**sunday** were going to hurricane harbor...its in arlington tx....
~*ellen*