Physical differences - when is surgery ok? - Mothering Forums

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#1 of 33 Old 05-23-2011, 10:31 AM - Thread Starter
 
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DD, 13, is pigeontoed (intoes). Her legs and feet turn inward when she walks. She has always done it. 90% of children who intoe grow out of it by age 11 or so, but my DD is one of the few who never did outgrow it and never will. Braces, physical therapy, orthotics etc. have all been deemed ineffective (we sought medical advice several times during her childhood). Recently we had her seen by two different pediatric orthopedic surgeons. Both diagnosed her with excessive femoral anteversion and tibial torsion (in layman's terms, this means both of her femurs twist in, so that her legs point inward and her knees point toward each other rather than straight out... plus, one of her tibia bones also turns in). The surgeons both explained that intoeing is unlikely to cause her any pain, arthritis or medical complications later in life, so basically it is (aside from some tripping and general clumsiness) a purely cosmetic problem. It is very obvious. Her feet turn in almost 45 degrees and her toes overlap when she walks.

 

The only fix is a fairly involved surgery in which they cut both femurs, untwist them, secure them with pins. Serious stuff, long recovery time, but very effective and she would walk normally immediately after healing. Doctors don't like to do the surgery except in the most extreme cases, and she is borderline. The surgeon didn't say he wouldn't do it, but he did say it would be cosmetic.

 

At the time we had the last consultation, DD decided she didn't want the surgery.  She never made much of a big deal about it, and seemed to accept the intoeing as a part of herself. However, this year (7th grade) kids have gotten pretty brutal. They make fun of her a lot, ask her why she walks that way. Recently she told me that at school some of the kids will walk next to her or in front of her, turn their feet inward and ape the way she walks. That just broke my heart.

She also has cut back a lot on sports, saying she trips too much and doesn't like to run. She has been asking lately about the surgery, and says she wants to do it.

 

I don't know how to counsel her. I hate so much to see her suffering. I know middle school is likely the worst of it, high school will be better, and after that it won't be so bad ... but I think about her going through her whole life with this one burden. Always walking differently than everyone else, always sticking out in a crowd. And I know that that is not necessarily bad, that we all have our burdens and our difficulties and maybe this will make her a stronger person ... blah, blah, blah. But then my mothering heart kicks in and says yes, but life is hard enough as it is. And frankly my DD has some other challenges and hardships to deal with. She already sees herself as a "misfit," and while I don't think fixing her walk would automatically change that (and I'm ok with her self-indentifying in whatever way she chooses), I don't want her to suffer needlessly. I was teased a lot in elementary school, and while it got better later, it did change me. It's a hard thing to get over.

 

So, I'm torn. On the one hand I want to continue to teach her that what's inside matters more than what's outside. If she were, say, unhappy with the shape of her nose, for example, I would not counsel a nose job. I would counsel self-acceptance. And this surgery is a big deal - it's not a little one-day procedure. On the other hand, when I pick her up after school every day I see all the kids walking out of school. You can spot my DD from a couple hundred feet away by the way she walks. I feel so sad that she has to carry that burden, especially knowing that she is suffering from it.

 

Thoughts?

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#2 of 33 Old 05-23-2011, 10:45 AM
 
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At the time we had the last consultation, DD decided she didn't want the surgery.  She never made much of a big deal about it, and seemed to accept the intoeing as a part of herself. However, this year (7th grade) kids have gotten pretty brutal. They make fun of her a lot, ask her why she walks that way. Recently she told me that at school some of the kids will walk next to her or in front of her, turn their feet inward and ape the way she walks. That just broke my heart.

She also has cut back a lot on sports, saying she trips too much and doesn't like to run. She has been asking lately about the surgery, and says she wants to do it.

 

 

<snip>

 

You can spot my DD from a couple hundred feet away by the way she walks. I feel so sad that she has to carry that burden, especially knowing that she is suffering from it.

 

Thoughts?


Our son intoes quite a bit with one foot, and he often stands naturally in something that looks like the 4th position in ballet. When he was 3-4, we took him to an orthopedic surgeon who described the surgery and said he would not recommend ds for it.

 

He did say, however, that if ds' condition began to affect his ability to run or physically do what he wants to do, then we should consider it. It never has for ds, and so it's OK.

 

From what you've posted, it does affect how your dd runs, her ability to do things she wants to do. That would push me toward considering major surgery. Are there really no associated back issues? Joint issues?

 

Have you gotten a second opinion? I think you would want to -- it sounds like her intoeing is pretty severe, and if her feet overlap, I wouldn't think this a cosmetic surgery, but structural one. I would make sure that the surgeon knows that it's affecting your dd's ability to do activities.

 


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#3 of 33 Old 05-23-2011, 11:26 AM
 
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Poor kid. I can imagine how terrible the other kids are being to her. I can't comment on whether the surgery is right or wrong. It certainly sounds like a major ordeal. I'm just not sure it's a decision I'd want my kids to make in middle school as they are at their most insecure. I'd want my kid to be in a place where they could really seperate what THEY want from what they think will make their peers accept them more. KWIM? Hugs to you and your DD though. Such a hard decision for all involved!

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#4 of 33 Old 05-23-2011, 12:30 PM - Thread Starter
 
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Thanks for your thoughtful responses.

 

We have had her seen by two separate board-certified orthopedic surgeons, so we've had a second opinion. Both had the same diagnosis and recommendation, and from the research I've done it's a typical recommendation. It does seem hard to believe that the way she walks would not cause back, hip or joint problems, but that is what they say. We were concerned about that as well.

 

I totally get not wanting to make a permanent decision for such a major surgery in middle school, and I feel the same way. But I worry that the damage that is done now, socially and emotionally, might carry through and affect her opportunities later. She wants to be homeschooled next year, for example, or to go to a co-op or do independent study. I don't know how much of her hating her school is due to being teased/feeling like an outcast, but I'd venture to think it's not nil. (I'm not insinuating that homeschooling or an alternative school would negatively impact her later -- just giving an example of how the issue could affect more than just today).

 

She is seeing a therapist for anxiety/depression (mostly related to school) ... the issue of her intoeing hasn't come up yet but I'm hoping when it does she can give us some additional insight.

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#5 of 33 Old 05-23-2011, 12:49 PM
 
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I'm so sorry she is going through this.

 

One of my DD's has pins and plates in one elbow because of an injury, and in her case, the surgery, recovery, and physical therapy was intense. She also has a HUGE scar -- about 1 1/2 inches wide and about 8 inches long. (just from the surgery, not from the injury)

 

Orthopedic surgery is difficult and painful, and I would thoroughly look into the recovery process for having BOTH legs operated on at the same time, as well as how much scarring there will be.

 

I'm not saying don't do it, just that it isn't an easy or perfect solution.

 

About school next year -- public middle school is often a crappy experience. Are there any alternative or charter schools where you live? My kids went to public middle school last year, but a small private alternative school this year. The new school is MUCH more accepting of kids with differences, so much so, that there is no since of *normal.*  Not only would she be welcomed by the other kids at the school, they might encourage her to do things like go on hikes (the other kids talked a boy at the school with an artificial foot to go on a hike, and promised some of them would go at his pace, and that he would have fun. And he went and he did have fun!)

 

Kids with any special needs, even very mild ones, are more likely to be dx with depression during adolescences. Hopefully, her therapist can help give clarity to the situation and helping to figure out what really is best for her.

 

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but everything has pros and cons  shrug.gif

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#6 of 33 Old 05-23-2011, 12:55 PM
 
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I would definitely entertain the idea, both for emotional reasons AND physical.  Ok, so maybe it's not *technically* something that "needs" correction, but she's already having difficulty running and playing sports.  If she has trouble keeping active, she might have health related problems later, like obesity.  That alone would be enough for me to consider it.

 

Middle school is very hard on most kids.  She probably WILL be teased about this (among other things....kids are so cruel!) even if she has it fixed.  I would maybe give her time to come into her own and see if she still wants it done.

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#7 of 33 Old 05-23-2011, 01:05 PM - Thread Starter
 
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Unfortunately, schooling options here are limited. We live in a "great" school district -- high test scores, economically stable, community, etc  -- and most folks are pretty happy with the public school. If they're not, there are a couple of private school options but they're way out of our budget. The closest charter school is about a half an hour away, and there's a long waitlist - so dd's chances of getting in for just 8th grade are very slim.

We just moved to the area a couple of years ago. DD went to a small alternative school throughout elementary, where differences were rarely noticed and there was no teasing. If we could have found that here, we would have jumped at the chance.

 

Thanks for the specific information about surgery and recovery. You're right, it's definitely something to consider, and it is a very big deal! which is why we've shied away from thinking about surgery for a couple of years now (ever since we found out her condition would not correct itself). It would be awful to see her go through it. I'm thinking of making another appointment with the ortho so he can explain to DD, and to me, the specifics of the surgery and recovery. It's very tough to get in to see him though, so it might take a while.

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#8 of 33 Old 05-23-2011, 02:01 PM
 
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7th grade is the worst. Even something like pimples or a bad haircut can cause teasing for months, and in my case, my peers decided I was a lesbian and it stuck all the way through high school. People would throw things at me as I walked down the hall, yell things out from the peanut gallery if I was talking in front of the class, and fill my locker with notes that had things like "carpet muncher" and "bulldyke" written on them daily. All because one kid decided to start an unfounded rumor. If you do feel like it's affecting her ability to play sports, though, I would definitely revisit it if that's something she's passionate about. Just remember that things will socially be uphill from here, hopefully.


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#9 of 33 Old 05-24-2011, 04:55 AM
 
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I'm guessing that being in therapy already may prove to be a great resource for both you and your dd as you process this possibility.  It may give the opportunity to really work through the realities and hopes that your dd has about having the surgery done vs. not having it done.

 

I agree that it sounds like the issue is impacting her life in a social, emotional and physical manner ie backing away from sports or other physical activity.  

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#10 of 33 Old 05-26-2011, 06:26 PM
 
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I actually was born with the same problem and underwent surgery for it at age 7.  Personally I am very glad to have had it done.  If you have questions about my experience with the procedure, effects, recovery, etc. please feel free to pm me--I don't really want to go into it all here.


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#11 of 33 Old 06-05-2011, 02:28 AM
 
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You know in this sort of situation, I would speak long and hard to my dd and then if she was sure about the surgery go ahead with it, it's like saying to someone that because they are not blind they can't have glasses to make them see, I actually think it's pretty cruel of the surgeons to deny this and say that it is cosmetic surgery, it has an impact on your dd's life stopping her from achieving and taking part in daily school life and more, then there is the teasing as well, why should any child have to go through that?  Bravo to your dd and to you!!


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#12 of 33 Old 06-07-2011, 09:57 AM - Thread Starter
 
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Thanks so much for everyone's thoughtul advice.

We have discussed it in depth with the therapist and she's very supportive of the surgery. I'm still nervous at the idea of something so major, but I understand that it's important to dd. We have a call in to try to get an appointment for more information/planning with the surgeon.

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#13 of 33 Old 06-07-2011, 10:59 AM
 
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 We have a call in to try to get an appointment for more information/planning with the surgeon.



That's wonderful!  I wonder if she'll be able to have the surgery this summer while on break from school.


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#14 of 33 Old 06-07-2011, 09:29 PM - Thread Starter
 
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That's wonderful!  I wonder if she'll be able to have the surgery this summer while on break from school.

I doubt it will be able to happen so fast - the recovery length itself would put her into the school year - but we are planning to homeschool her next year anyway for unrelated reasons, so it should be able to happen even while she's in school. I just hope the surgeon is open to doing it so our insurance will cover it. We have Kaiser, so if he deems it solely cosmetic we may not be in luck.
 

 

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#15 of 33 Old 06-09-2011, 11:38 AM
 
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I would consult different doctors.  My brother had a childhood bone disfunction, where his ribs were abnormally attached to his sternum.  It gave him a concave chest, and got very disfigured as he grew.  It gave him lots of greif in his highschool years, and finally he underwent the surgery at age 34, due to low self esteem, and the chest cavity pressing on his internal organs.  He felt lots of resentment as to why it was not taken care of earlier.  The doctors told my mom it was way too painful, and not recomended, as did the pediatrician for my kids ( I asked him about my brother).  But other doctors thought otherwise.

 

edit to say, it is not always black and white.  We try to do the best, that is all we can do.

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#16 of 33 Old 06-09-2011, 04:10 PM - Thread Starter
 
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I would consult different doctors.  My brother had a childhood bone disfunction, where his ribs were abnormally attached to his sternum.  It gave him a concave chest, and got very disfigured as he grew.  It gave him lots of greif in his highschool years, and finally he underwent the surgery at age 34, due to low self esteem, and the chest cavity pressing on his internal organs.  He felt lots of resentment as to why it was not taken care of earlier.  The doctors told my mom it was way too painful, and not recomended, as did the pediatrician for my kids ( I asked him about my brother).  But other doctors thought otherwise.

 

edit to say, it is not always black and white.  We try to do the best, that is all we can do.



Thanks for the input! It really helps me to hear others' experiences. DD has already told me that she doesn't want to go through the rest of her life walking this way -- one example she used was "I don't want to walk like this down the aisle at my wedding." That was pretty profound for me, and shows me that she's looking forward and not just thinking about middle school teasing. If it's important to her, even if the Kaiser doctors decide against it, we'll keep advocating for her until we find a solution.

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#17 of 33 Old 06-10-2011, 10:50 AM
 
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I'm late here but just wanted to chime in and say that I had surgery when I was 11 that was considered cosmetic and I am so glad I did and don't regret it a bit. It's something people often laugh about - and I laugh about it now the odd time I tell people but it was very important to me at the time and I know if I hadn't had it done then I would have still done it at some point. My ears really stuck out and I had them "pinned back". Of course that surgery is nothing like what your dd would go through but for me having something even that small done made a huge difference in how I felt about myself. I've almost always had long hair which I would have had anyway but I always hated wearing it up before I had the surgery. After I wore it up all the time and still do. Without the surgery I know I wouldn't (maybe that just makes me insecure! lol). I don't even remember getting teased about my ears (I got teased about plenty of other things).

 

In my case if I had the surgery done under the age of 12 it was considered corrective so our provincial health insurance covered it (I think - either that or it was my mom's group insurance that covered it). At 12 it would have been considered cosmetic and not covered. That's why I had it done at 11 - I know my mom wanted me to make the decision myself and at 11 she felt I was old enough.


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#18 of 33 Old 01-10-2012, 11:33 AM
 
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Things have probably changed a bit since my day, but I also had this surgery in 6th grade, and then the 2nd part in 8th grade (it was a little different- staples instead of pins, staples had to be removed, ...)

 

I was very active and athletic before the surgery, but the surgery and its' complications kept me sidelined for long enough that I grew up thinking that sports weren't really my bag.

 

The kids didn't really tease me much for my feet or for the surgery (full leg casts, etc.), but I definitely thought of myself as a disabled person during that time. I think that my changes in self perception were probably the biggest impact of the surgery. I think of it as a defining part of my life. The surgery did have lasting effects in terms of my flexibility (can't sit cross legged), stability (knee caps slide when I run), and creaky joints in the rain.

 

I'm not sure if I would advocate for or against it. It probably really just depends on the severity of the situation. But, as you are well aware, it is definitely a big/important/consequential decision.

 

Best of luck with it!

 

 

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#19 of 33 Old 01-10-2012, 01:32 PM - Thread Starter
 
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Thanks for the response! It's very timely, as DD is scheduled to undergo her surgery two days from today. Guess it's a good time for a bit of an update!

 

After a lot of time and thought, and a couple more visits to the orthopedic surgeon (also, suffering a lot of frustration due to knee pain from some physical activities that are just too difficult for her with the way her legs are now), dd has decided that surgery is the right decision for her. Upon seeing the surgeon again, he agreed that due to the severity of her gait difference, it really was not a cosmetic procedure. The last time we saw him, he impressed upon us that it actually is medically necessary. We have been on a waiting list for several months for a time slot, and just a few weeks ago received our date. We are all gearing up for it now.

 

I'm very nervous (of course! It's so scary to think of my child having such a serious, body-altering procedure, plus recovery) but DD is serene and sure. It turns out that a lot of advancements have been made in the surgery, and while the recovery will still be a few months of pain and limited mobility, the surgery itself will be quite simple. She will not have casts, or braces, or pins -- the cut bones will be anchored in place with metal plates that she'll keep forever. She will have a scar on each thigh, but not too big (and dd does not seem at all concerned about that). We had the option of doing one leg at a time, but dd wanted to just get it over with, and the surgeon concurred. Recovery will be challenging at first, but since I am home with her all the time anyway, I will be able to give her the care she needs.

 

By the way, in the 7 or 8 months since my original post, dd's emotional state has improved dramatically. We decided to homeschool her for 8th grade, which has been an amazing experience. She is very happy, has met the most awesome groups of homeschooled kids, and she's loving life. No anxiety, no stress, and her natural self-confidence is back. I am glad that this is the state of mind in which she made her decision to pursue the surgery, since I know she's thinking clearly and not being swayed by any social issues.

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#20 of 33 Old 01-11-2012, 08:51 AM
 
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A great update! I'm sorry she was in pain, and I know it'll be a long recovery. At least the doctors have determined that it's medically necessary, so the insurance part will be easier .

 

Good luck to you and her!


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#21 of 33 Old 01-11-2012, 10:03 AM
 
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Wonderful! Best wishes to you and your daughter - it's going to be a long haul, but worth it in the end.

 

Please keep us updated!

 


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#22 of 33 Old 01-11-2012, 10:18 AM
 
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Best wishes for a successful surgery and quick recovery!
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#23 of 33 Old 01-11-2012, 01:24 PM
 
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It sounds like you're making the right decision, and approaching it in a very well prepared way. It's such a difficult choice to make and a rough path to follow. Best of luck to you!

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#24 of 33 Old 01-12-2012, 06:32 AM
 
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Thanks for posting! It's good to get a positive update. Best wishes for a quick recovery. 

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#25 of 33 Old 01-12-2012, 04:01 PM
 
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I hope the surgery and recovery go very smoothly. 

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#26 of 33 Old 01-12-2012, 05:13 PM
 
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I apologize - I didn't read all the responses but wanted to add my experience.

 

I am very pigeon-toed. Saw many specialists as a child (who kept saying I would outgrow when it was obvious to my Mom that wasn't happening) until we saw one who basically said they would need to "break" my legs all the way up & realign them - probably similar to what you are describing. We decided not to pursue it at that point.

 

As a child/teen I turned my ankles a LOT because of it. Skating really helped strengthen things, as did growing & becoming more coordinated! At 13 I was hopelessly clumsy but I'm not sure my feet had that much to do with it - it's an awkward time for many kids.

 

I did have some troubles with a coach who would make comments about my gait, saying that was why I was not a fast runner but outside of that it was rarely mentioned. I know I have a "different" gait that is probably pretty identifiable - sometimes in pictures I even look awkward but it has very rarely been an issue.

 

Now as an adult I have a lot of difficulties with my hips being very tight. I powerlift & have to work very, very hard on my squat & being able to squat deeply. I spend a lot of time stretching this area - I'm fairly certain this is due to everything from hips down being turned in instead of neutral.

 

It is a very personal decision. I'm not sure I would do it myself, especially if it is not causing physical pain or problems.


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#27 of 33 Old 01-15-2012, 05:14 AM
 
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How is the recovery going for her?  I am pretty sure I would do the surgery for my kids.

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#28 of 33 Old 01-16-2012, 02:46 PM - Thread Starter
 
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Thanks so much for all the well-wishes!

 

The surgery was Thursday. It took a long time, and it was tough on me knowing what she was going through (unconscious, I know, but still!), but the surgeon was happy with the outcome and there were no complications. The first couple of days in the hospital were rough. They had trouble finding an adequate pain solution, and then after a couple of days when they transitioned her off the iv meds, she had a very bad reaction to the first med they tried, so had to switch her to something else. The one she's on now controls the pain but is hard on her stomach. She's had a bad headache too, probably due to all the medications and anesthesia, and although it's slowly improving it's still wearing her down. It was kind of awful for me to see them pump so many different meds into her all willy-nilly, I admit -- we are very careful and spare with conventional medication at home. I found it really scary every time they just popped some syringe into her iv. I was probably the most annoying mom, always going "What is that? What is it for? Is it safe?" over and over.

 

But despite the med hassles and a long four days in the hospital, she is really doing great. Today is her first day at home. She had a physical therapy visit this morning and she's making excellent progress. Her spirits are very good for the most part, and while I was expecting her to be really regretting her choice at this point (thinking it might take her a while to get back to gladness), she is still convinced it was the right decision. She likes the way her legs and feet look now (though swollen and stitched) -- her knees point forward and so do her feet!. There is a long way to go, but I really admire her fortitude and perseverance.

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#29 of 33 Old 01-16-2012, 04:29 PM
 
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I'm glad she's home and feeling good about the surgery.  I think it's great that she likes how her legs and feet look now.  Best wishes for a speedy recovery!

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#30 of 33 Old 01-16-2012, 04:54 PM
 
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Thanks for the update. I hope she recovers quickly and is running about in no time. Keep us posted.

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