My daughter had double jaw surgery and it has all gone wrong!

[Eriann]

Hey Jane Just wanted to let you know my thoughts are with you and your daughter at this awfully stressful time.

I'm so glad to read that things are moving in a good direction with the new appointment - sounds like the worst is behind you - and things will get much better from now on.

All the very best,
Eriann xx

[Jane]

Many thanks Eriann. I pray that the worst is over and that a solution will be found VERY soon. Only those who have had or are contemplating this type of surgery can fully understand what a 'bad' outcome would mean. It is such a long process to get to the surgery and then for it all to go wrong is almost too much to bear. But I believe in my heart that God will work it out and that there is a reason for it and if she or I can help someone in the future then it will be worth the pain. Thank you. God bless xx

[Jane]

Update for everyone who has supported us and prayed...

We had our visit with the surgeon (the one who my daughter was passed on to after the original surgeon retired) and the original orthodontist. My husband, and I were both there with her. It was a very intense consultation. We were so proud of her - she talked calmly and between the tears was able to explain to them what in her view is not right.

To summarise their response:
It was obvious to us that they were not going to say they had made a mistake/done something unintended. But the surgeon went as far as he could without saying that. He acknowledged that they had not done a good job because our daughter is not happy. He said that if she is not happy then it is not aethestically right. However, my husband rightly pointed out that it is because it is not aethestically right that she is not happy - we feel it is so important that she doesn't feel she is making something out of nothting which she clearly is not. He accepted that.

Surgeon said that this could have happened for a number of reasons: maybe because of the planned movements, maybe the face-bow was not carried out correctly, perhaps our expectations were different to what their intentions were. In any case, bottom line is he apologised that she is in the state she is and offered a further surgery to try and sort it out. This would involve upper and lower surgery again. He said he welcomed the fact we are going for at least one other opinion (I suppose since he didn't do the surgery there is no real pressure on his reputation which is good for us in a way). He said he understood if we wanted someone else to do the surgery.

We go for a further opinion from a surgeon outside of our region on tuesday, so we will hopefully know more then.

Thank you all for your prayers and good wishes. We are trusting that this will soon be behind her and that she will be smiling again soon. x

[Jane]

We have just had the second opinion with a very experienced surgeon outside of our region, and are still trying to get over the shock of what we've been told. Apparently, according to the x.rays we provided him with, which we arranged to bring with us, my daughter's bottom jaw has not moved at all! We had been told that the planned movements prior to surgery were in relation to both top and bottom jaw, but the only movement has been in relation to the top jaw. He was able to tell us that this was not what was planned by the surgeon and, therefore, it is not that she just doesn't like what he did, but that the surgeon didn't achieve what he set out to - therefore obviously she is bound to be not happy with the outcome!!

This has was not admitted to us by the surgeon or the orthodontist who we saw last Friday. We did ask last Friday if they could tell us what were the planned movements and the actual movements, and we were told by the orthodontist that he tried to get this information but the computer didn't allow him to overlay the xrays! We pointed out that it appeared to us from the drawings that the bottom jaw was still in the same position, and at that point the surgeon baffled us with some explanation which we obviously didn't understand!

The consultant today said that the only way to correct it for sure is further surgery (which we were offered Friday last). However, he also said that she could have the metal plates removed and the braces taken off to see if that helped any - if she couldn't face another major surgery at the minute - and then get surgery say in a year from now. To be honest she is just so exhausted with it all - and told me she needs to have closure. She has a year abroad starting september with her university course and she has said she just can't face having this hanging over her wondering if it will be sorted out.

Any thoughts on the best way forward would be appreciated, but at least we have options and at least we are getting some honest answers at long last - it's been such a nightmare.

Thanks to all who have shown an interest. God bless x

[HokieTay]

Hi Jane. I am glad you are getting somewhere! I would go with this new surgeon. The other one sounds totally incompetent, and even worse, he hasn't even admitted he didn't do the job he set out to do. It's like going to get a new transmission in your car, the mechanics saying they did it, and then you drive off with the old transmission in the car. Absolutely and totally unacceptable.

As far as your daughter waiting... I personally wouldn't. This surgery was offered to me 9 years ago, when I was much younger...15. I was young and naive and did not want to do it. My parent's let me have the final decision and honestly, I wish they would have put their foot down and said no, you're doing it. Now I am stuck with the cost, round 2 of braces, and trying to navigate doctor's appts, and surgery dates in between work and life. It's very hard and stressful. The best time to do it is in college in my opinion.

Anyhow, best of luck.

[blindboarder2008]

I to agree about going with the second surgeon and opinion. It seems like this surgeon that you saw is more experienced and is telling you what is going on instead of just covering up with random scientific explanations that you can't even understand.

I realize that your daughter has gone through a lot and i can just imagine how hard it is for her and your family. In my opinion it might be better just to get the surgery done and over with and that way she will have ample time to heal up from surgery and be ready for her one year abroad experience with school. This way she doens't have to worry about what is going on and what is going to happen and she ouldn't be as stressed out. Just my opinion though. You need to do what is right for you guys and her as well. Best of luck and hope it all works out. Glad you are all getting some where!!!

[newsboysgrl777]

Jane,

to both you and your daughter, I'm so so sorry to hear of this!! The good news is that cases like yours seem to be rare, but the bad news is that they do happen. And I'm so sorry they happened to you (your daughter).

First, I just want to say what a wonderful job you're doing as a mother and as a woman of faith. You're relying on God in the midst of this extremely stressful and traumatic situation, and that's not only wonderful for your own spirit, but it's also such a wonderful example for your daughter (and anyone you come into contact with, actually). Your being there for her and supporting her and doing all you can do for her means more to her than she may even recognize, but imagine if this happened to her and she was going through it alone? Without your support? Yes, I realize God is ALWAYS with us, but sometimes we NEED that human support as well. After all, didn't God say it isn't good for man to be alone??

That being said, I want you to know I've prayed for both you and your daughter. That'd you'd continue to draw near to God and allow Him to comfort you. Like you said, there is a reason for this. Before she ever had the surgery, He knew the outcome, yet He let it happen anyway - there must be a reason for this. So I'm praying along with you that this works out to His good purpose. I also pray that this will all get fixed and one day you can look BACK on it, instead of being in the midst of it, and see something that you survived.

Again, I am so, so sorry to hear about this...it breaks my heart as well. I can only imagine what she is going through, but again, I just want to say how wonderful it is to have a mom (and dad) (or should I say mum? ) supporting her and helping her have the strength she needs to get through this.

Lastly, I'd just like to comment on the whole surgeon and orthodontist thing. I'm very, very alarmed...as I'm sure you are as well. What alarms me most, however, is that neither the orthodontist OR the surgeon expressed concern over the lack of movement of the lower jaw. This is making me feel that the orthodontist is not trustworthy, either. I know this is probably not what you want to hear - it makes my stomach tighten at the thought of someone I am supopsed to be able to trust, misleading me - but this seems to be the case. Can you transfer her orthodontic care to someone else, if need be? I'm hoping you can. Another thought I have is, have that other appointment with the orthodontist and the surgeon he is recommending to you (the second opinion surgeon). I'd really love to know if AT THAT POINT he mentions anything at all about her lower jaw. If so, then I'm thinking he's worried about creating a bad relationship with the prior surgeon and/or doesn't want to slander anyone's reputation. If not, then I would say he isn't the ideal doctor for your daughter, and you should look elsewhere.

Questions I have for you...I guess things for your to consider, not that you necessarily have to reply to on this board.

Since I don't know ANYTHING about how healthcare is in the UK, I don't know what NHS is or how costs work, etc., but if you pursue treatment with this surgeon you contacted 'outside of your region,' would it cost more? Could he, perhaps, recommend a colleague of his that he feels would do a good job for you that is IN your region? I know you mentioned that you would pay anything, so this may not be an important factor to you, but I'm sure saving money is important.

Another point is, if it is discovered (and proven/documented) that the surgery wasn't done not only as planned, but as described AFTERWARD, are you willing to pursue legal avenues? What I mean is, although the surgeon has already retired, this newer surgeon isn't being forthright about things, and this could mean other patients down the road having to experience something like this. I also don't know if you've lost anything monetarily, or if the surgery was covered through your healthcare. But these are things to consider. I know as a Christian you don't want to slander anyone and that God says to forgive, but at the same time, I feel that justice should be done -- and by that I don't mean that we sit in the judgement seat. I just mean that what was done injustly is brought out into the light. I hope that makes sense?

Lastly, I'm sorry for such a long post...but I wanted to encourage you and I look forward to hearing good things from you in the future. I don't envy your position or your daughters, but I can tell already that you both have incredible strength and I'm so thankful to see that!!

God be with you!!

[newsboysgrl777]

[PS I'd just like to apologize to anyone if any part of my post made you feel uncomfortable. I don't hide my faith (and I'm not apologizing for it), but I do know it can be uncomfortable to some when/if it is extremely blatant. So, I mean no offense to anyone... ]

[Jane]

Hokietay, Blindboarder and newsboysgrl, thank you so much for your interest, good wishes and advice. I think Em agrees with you and is of the view that if there is no reason to wait in terms of getting a good outcome from the second surgery then she will have it done as soon as possible. We've got this other appointment for a further opinion which was arranged by the orthodontist - hopefully next week. So, it will be interesting to see what they have to say in light of what we were told yesterday.

Newsboysgrl... thank you for your lovely sentiments. Believe me I have had my moments of despair, but if you say you have a faith then you must prove it in the difficult times. That is when we can truly test what we believe - thank God for his strength.

As a mother I would rather go through this a million times rather than her have to deal with it, but you know she amazes me really in so many ways. She has such a lovely spirit and when I see her showing such concern for others, even with all that is going on, I'm just so thankful for her. Having been told we would never have children and then to be given a beautiful daughter with a beautiful spirt we are so blessed and grateful.

Now, let me try and answer some of the questions you ask as it is useful for me to work through these things too...

In the UK this surgery is done on the NHS - there was never any question of her being eligible for the surgery, and we had never heard of anyone having any problems. The surgeon had years of experience and to us always seemed very professional and helpful and he always put my daughter at ease. We had no reason to think he might not do a good job. The orthodontist, on the other hand, has always been a bit distant, and cold and we've been shocked since this happened at his responses to us. At one point. I phoned him up and said that we were very concerned about the shape of her top jaw - and that her profile was prominent. His reply was 'she now has a more european look, and I think that is attractive!!' I've since documented all of the things he has said that have given us concern and put them in an email to him stating how much anxiety it has caused her and us as parents.

I see the point you make about legal action, etc. To be honest we've been so distressed by all of this - I've lost sleep over it and it is the worst thing that she has had to deal with in her life - that we've just said that if only we can get it sorted for her that's all we want. But I know in my own mind too that it is important that other people don't have to go through this, so we may have to think about how we address what has happened so that it doesn't happen again. I also know that they need to acknowledge to her what they've put her through as they've made her feel that she's creating a problem and that there is really nothing wrong - that is beyond belief to be honest and makes me angry, as you only have to look at her to know that something has been done wrong.

Oh this is a long post too. I'll sign off now and please any more advice or views are welcome. This has been such a support to me and in turn to Em. Thank you all. God bless x

[Jane]

Hokietay, Blindboarder and newsboysgrl, thank you so much for your interest, good wishes and advice. I think Em agrees with you and is of the view that if there is no reason to wait in terms of getting a good outcome from the second surgery then she will have it done as soon as possible. We've got this other appointment for a further opinion which was arranged by the orthodontist - hopefully next week. So, it will be interesting to see what they have to say in light of what we were told yesterday.

Newsboysgrl... thank you for your lovely sentiments. Believe me I have had my moments of despair, but if you say you have a faith then you must prove it in the difficult times. That is when we can truly test what we believe - thank God for his strength.

As a mother I would rather go through this a million times rather than her have to deal with it, but you know she amazes me really in so many ways. She has such a lovely spirit and when I see her showing such concern for others, even with all that is going on, I'm just so thankful for her. Having been told we would never have children and then to be given a beautiful daughter with a beautiful spirt we are so blessed and grateful.

Now, let me try and answer some of the questions you ask as it is useful for me to work through these things too...

In the UK this surgery is done on the NHS - there was never any question of her being eligible for the surgery, and we had never heard of anyone having any problems. The surgeon had years of experience and to us always seemed very professional and helpful and he always put my daughter at ease. We had no reason to think he might not do a good job. The orthodontist, on the other hand, has always been a bit distant, and cold and we've been shocked since this happened at his responses to us. At one point. I phoned him up and said that we were very concerned about the shape of her top jaw - and that her profile was prominent. His reply was 'she now has a more european look, and I think that is attractive!!' I've since documented all of the things he has said that have given us concern and put them in an email to him stating how much anxiety it has caused her and us as parents.

I see the point you make about legal action, etc. To be honest we've been so distressed by all of this - I've lost sleep over it and it is the worst thing that she has had to deal with in her life - that we've just said that if only we can get it sorted for her that's all we want. But I know in my own mind too that it is important that other people don't have to go through this, so we may have to think about how we address what has happened so that it doesn't happen again. I also know that they need to acknowledge to her what they've put her through as they've made her feel that she's creating a problem and that there is really nothing wrong - that is beyond belief to be honest and makes me angry, as you only have to look at her to know that something has been done wrong.

Oh this is a long post too. I'll sign off now and please any more advice or views are welcome. This has been such a support to me and in turn to Em. Thank you all. God bless x

[Jane]

sorry I posted that last one twice! J

Just one last thing has anyone had the metal plates removed after surgery and when and why was this done? Do some people keep these in forever? I'm not sure why the professor we saw yesterday was so strong in his view that they needed to come out. Also he said that she doesn't need to keep the braces on if she is having a second surgery - we were told by the original team she would need to keep them on so that the hooks could be fitted for the bands post surgery. The professor said there are much better ways of keeping the jaws together after surgery? Any views on this??

[monarch]

I do know that every surgeon you go to will have a different way of approaching the problem. I guess this type of thing (faces, aesthetics, surgery on jaws) is quite subjective....I kind of wish it was easier, like math, where there is a correct answer and you know if you've gotten it right....

As a parent, I feel for you so much. (My son's surgery is scheduled for Monday....eeek!!!!! I'm nervous for him!)

I'll be thinking of you and hoping that everything goes well at your appointment next week.

[Jane]

Monarch...I share your views that it would be easier if there was only one approach. I understand the concern you feel about your son's surgery, but I'm sure all will go well - as someone pointed out, mistakes likes this are uncommon. In fact, we were told by the orthodontist that he had referred 200 people for similar surgery last year and we were the only one that came back to him unhappy! It doesn't make us feel any better but it's great for the 200 others Anyway all the best to you and your son - I'll be praying all goes well. Keep strong and positive. Jane x

[teylix]

yikes. not the best reading material when you're going to have the same type of operation (sliding the top forward and the bottom back).

wish her all the best. it's crazy to think how much just having a different surgeon wouldve changed things for your daughter.

[Jane]

Hi teylix...yes in a way that's true, but all you can do is go with the advice and information you have at the time. The surgeon who carried out the op was very experienced and had done numerous similar ops. The stats say 98% of people have a successful outcome - we're just in the 2%. You could say why us? But then again why not us? It's like anything in life, most of us think that bad things only happen to other people, until they happen to us! Anyway...you keep positive and it is very unlikely anything will go wrong for you. Just ask lots of questions and make sure you understand what they intend to do, how and why they've arrived at the decisions - in hindsight, we didn't ask enough questions, and afterwards is not the best time to get answers! take care x