Peggy's Daughter?

[phaden]

Hi:

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

Patricia

[Peggy]

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]

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]

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]

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]

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? 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]

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]

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]

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]

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]

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]

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]

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]

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]

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