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

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#46 Post by **Jane** » Thu Apr 09, 2009 5:16 am

monarch wrote: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.

Hey Monarch... just wondering how things went for your son? Praying he is well and that all is looking good. You'll be glad the surgery is over, and now you can support and help him get well. Best regards, God bless x

#47 Post by **monarch** » Mon Apr 13, 2009 9:18 am

Jane, I've been thinking of you quite a bit this past week, and all that you and your daughter are going through. We are really pulling for you, that there were will be some way to fix it. Be sure to let us know what you find out when you have your appointment this week!

#48 Post by **Jane** » Tue Apr 14, 2009 1:51 pm

Thank you Monarch, and all who have been rooting for us. We had a very encouraging telephone call today from the prof who provided the second opinion. He has been in contact with two surgeons who would be able to do the second surgery soon, and who he would recommend. We're just waiting now for a letter from him with further details. On Monday coming, have an appointment for a further opinion (this was arranged by the original team, turns out only two orthodontists will be present, and no surgeon?!) Anyway we'll go and see what they say. Then the following Friday we have an appointment with the original team. This time my daughter is determined to have her say - she is now much stronger and empowered since the second opinion, which I'm really happy to see. So, we hope to come away from that appointment with an agreement from them that they will pay for the second surgery to be done by whoever we decide is best. She's been home from uni for a few weeks and I've struggled to keep myself from becoming angry at the way she's been treated throughout all of this. But that would not help her or me either - it's really hard though when it's your child and you seem them hurting. She is clearly uncomfortable about smiling or engaging with people. Yet she is pushing herself to meet up with friends, and is trying to explain that things have not turned out as expected. It is very difficult! But on a positive note, God willing, we're on the way to a solution and we just have to keep strong, and support her through it. Again thank you all for your thoughts, good wishes and prayers. God bless, Jane x

Tue Apr 14, 2009 8:03 pm

glad to hear things are starting to come together for you and your daughter. Let us know how these next 2 apts go!!! Hopefully you all can come to an agreement. Hopefully they will agree to pay for the second surgery. best of luck!!!

#50 Post by **Polly** » Sat Apr 18, 2009 2:34 am

Jane wrote: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??

Hi Jane, I am trying to catch up with the forum at the moment. Sorry your daughter is having all these problems. Just to answer a few of your questions. (I have replied to another of your posts about the plate removal) I had hooks on my braces before surgery, I was told they were on to aid the surgeon lining up my teeth properly while the jaw was being set in place. I had 8 plates and numerous screws in my face, I wasn't banded or anything after surgery.

I had one plate removed as the area was still sore and swollen 10 months later. (the wait was because of a gentic problem I am very slow to heal so we needed to give it a chance) My initial surgery didn't give the overall look we had wanted and my face looked uneven.
Feb this year I had one side of my jaw bone shaved and an implant put along the other side of the jaw. I am now happy with the end result and so is my perfectionist surgeon!

It has been a long process and although I had more surgeries than planned I do not regret a single moment of it and would go through it all again. My mother on the other hand would not, she obviously loved the way I looked before, being my Mum, but I hated it and it has been worth everything. If you or your daughter want to pm me then do feel free.

I am glad your daughter has decided to go ahead with further surgery now rather than waiting, get it all over and done with and then she can enjoy herself with hopefully the new found confidence that I now have.

Polly x

#51 Post by **Jane** » Thu Apr 23, 2009 3:50 pm

Polly, thanks for your reply, and it's so good to hear that you have a surgeon who obviously cares enough to work with you in order to achieve a good outcome - I'm happy for you. Thank you for taking an interest in our situation. Our experience of the NHS hasn't been a good one, but it's encouraging to know that there are good people out there who are doing a good job and who genuinely have the interests of their patients at heart.

Just to update everyone. We went for a further opinion arranged by the original team who messed things up. This appointment was on Monday. We hoped to see a surgeon and an orthodontist, but only saw an orthodontist. When we got into the room, he apologised that he didn't have her notes - apparently he had asked for them to be sent and they hadn't arrived! We have our own copies of everything, including xrays, etc and we had to give these to him as he had NOTHING. The whole thing just seemed like a waste of time to be honest. It was obvious he didn't want to criticise anything that had been done...saying things like 'the outcome achieved is really never what is intended'. In the end he admitted that her top jaw did appear to be too far forward, but then he said her bite was perfect and in his view that was a successful outcome. It was the same old story...trying to put the responsibility on to my daughter...and saying things like if you're not happy then I suppose it's not a good outcome and if you feel that something needs to be done then you need to push for that. This is very upsetting as it makes her feel she is making a big deal out of nothing and that she is some sort of perfectionist who is not prepared to leave well enough alone. I ended up telling him that in my view it is appalling that he couldn't be honest enough to admit that the reason she is not happy is that the job wasn't done properly and if he was doing his job properly and had her interests at heart he would advise her how to resolve it - and reduce her anxiety instead of adding to it. Furthermore, he should feel ashamed and embarrassed by the way she has been treated by all those involved and that now included him! Anyway, we left feeling exhausted and angry.

Today we had an appointment with the surgeon who was recommended by the professor we went to see privately - what a difference!

He spent two hours with us. He explained that it was really quite complicated and that it might take more orthodontic work as well as further surgery to sort things out, depending on the outcome of the impressions he has taken (we'll know tomorrow). It turns out that as well as her top jaw being too far forward and too far down, it has been twisted to one side - which means her midline is off - it is all of this is that is distorting her smile which is the most distressing thing for her to cope with.

Anyway, he has taken her on, but we won't know until tomorrow if it will be just another surgery right away or if she will have to have a further 6 months of brace work, extractions of some teeth and then surgery. If it is the latter she will have to take a year out of university as she won't be able to go on her year abroad - we'll just have to wait and see.

We see the original team tomorrow to hear what they have to say about all of this.

We're just thankful that we've found professionals who we can trust and work with - thank God for that.

That's the latest. God bless, Jane x

#52 Post by **peggysue** » Thu Apr 23, 2009 4:21 pm

Thinking of you and your daughter Jane- I really hope that things continue to move towards a happy resolution! It sounds as though you're asking all the right questions, and challenging the 'experts' to justify themselves...you are no doubt a pillar of strength to your daughter, and your love and support will get her through these dark days

#53 Post by **sauerkraut** » Fri Apr 24, 2009 2:37 am

Jane, I haven't posted on your thread before but I have been following your story and I just wanted to say I am SO impressed with your attitude and your commitment to your daughter's cause. She must be very proud to have you for her mum. I also think you are proving a great witness for your faith.

You asked once about metal plates being removed, and for what it's worth my ortho told me that mine will eventually be removed. But since they haven't even been put in yet (my lower jaw op is probably at least a year away!) I haven't enquired any further as to reasons or spoken with the OS about it. He just made it sound like it's normal practice here.

Anyway, at least it sounds like things are finally coming together for you and your daughter. I really feel for you that you've had to go through all this, and I wish you all the very best in your decisions and hope that you are soon able to find the best possible solution.

#54 Post by **Jane** » Fri Apr 24, 2009 9:12 am

Hi Peggysue and sauerkraut - thank you for your kind words. As I've said before, i have my moments when I want to scream with frustration... today was one of those...

We had the follow up meeting with the original team. Even after having received a letter from our independent professor, they just couldn't bring themselves to say that the outcome of the surgery was not what was intended. Today, however, they decided to take a different approach...rather than trying to confuse us like they did the last time, they said they couldn't really comment as neither of them were there when the surgery was carried out (i.e. in the theater!!

). They didn't therefore, know if the surgeon had decided to do something that wasn't planned - they just ouldn't comment. UNBELIEVABLE! We asked if the movements planned - clearly written down on the notes - were achieved, and the new surgeon said he didn't know, he hadn't studied them! When we said that we couldn't understand then what his role was now - in our view she had been passed over to him and was he then saying he hadn't given her any thought or time?! All he could say was I wasn't involved in planning or carrying out the surgery. It was apparent that they are both very keen to pass her on to the new team in a different location.

What was most distressing today was to hear my daughter explaining to them the impact this was having on her and expressing her concern as to why they just couldn't acknowledge that they understood why she was concerned with the outcome. But, they just refused to acknowledge the fact that it was not a good outcome. In fact the orthodontist said in his view it was 99% good. At that point I just said hold on a minute are you serious - and asked the surgeon did he agree with that. His reply was I didn't say that, and then the orthodontist said, well maybe I was too hasty - perhaps it's 90-95% good. I asked him to put that in writing in the notes and then to provide us with a copy - we'll see!

I just can't understand how two professional people can be so cold and calculated in their dealings with a young girl who is so obviously distressed. Even the nurse assisting was shaking her head in disbelief.

The orthodontists final word was "I just hope you are not back here in 6 months, you know, because the surgeon didn't or couldn't do what he has said". My response to him was "no matter what is the outcome of the second surgery the responsibility for all of this remains with this team - there would be no second surgery if the first one had been done correctly". I also reminded them both of the trust's mission statement which is to treat patients in the way we would want our families treated. I asked them to take time to ask themselves honestly if they would be happy if their daughter, wife or sister had received the treatment, care and support she had.

On a positive note, it seems likely that the surgery can be done sooner without the additional orthodontic work - this is really good news for her.

We're not sure what are the next steps. We will contact the new surgeon on Monday and see where we go from there. She is lying sleeping as I write this before we leave her to the airport to go back to university (as she has exams next week.) To be honest I think she will have to take a year out of university next year, even if the surgery is done in June as she is emotionally exhausted. We had a good chat to day as a family, and I think we came to the decision that it would probably be too stressful to launch straight into a year abroad so soon after surgery...she said she has been coming to terms with this in her mind - there is some reason for it I'm sure. We will just keep trusting God to work things out for her ultimate good and ours. For anyone who is familiar with the bible...Romans 8 v 28 is one of my favourite verses, it is a great comfort in all of this.

Thank you all for your good wishes. God bless, Jane xx

#55 Post by **Polly** » Sat Apr 25, 2009 3:36 am

Jane, I find it unbelievably apalling the way you and your daughter are being treated from people who are supposed to be in a caring profession.

You are right when you said I bet they would not accept things if it were a member of their family it was happening to. I am so sorry you are living a nightmare and truely hope that things will get sorted soon

Polly x

#56 Post by **monarch** » Sat Apr 25, 2009 1:45 pm

It sounds like you are really getting quite a run-around. Do you think part of the problem is money, as in will the doctors get paid to fix it, or do they have to do it for free?

#57 Post by **Jane** » Sat Apr 25, 2009 1:54 pm

Yes Polly, I sometimes have to pinch myself when I think about all that has happened in the past few months. It is like some dreadful nightmare!

She had an email today from the surgeon who has agreed to perform the second surgery. Apparently the surgeon who she was passed over to when the retired surgeon left (the one we saw yesterday) telephoned the new surgeon yesterday afternoon, and he is now liaising with the new NHS trust to sort out the funding of the second operation. Perhaps his conscience is bothering him. When we thought back to some of the things said yesterday, we wondered if his unwillingness to give his views was his attempt to distance himself from the whole thing - it was all very odd indeed!

He also said that in his view she should be treated as an urgent referral. Perhaps our parting comments about the Trust's mission statement provided him with some fuel for thought...who knows.

But, you know, at the end of the day all that matters is that we get a good outcome for her, and we pray we are now on the path to achieving this. Getting taken up with all of the negative isn't helpful We are so fortunate and God has been so good to us - the new surgeon is located in the same city as her university (isn't that amazing)

Well that's the latest, God bless. Jane xx

#58 Post by **Jane** » Sat Apr 25, 2009 2:05 pm

Hi Monarch...just saw your post. Yes I'm quite sure that money/funding is part of it, and also they are likely concerned about us sueing them. But as i said in my last post, we are hopeful that that the funding for the new op is now being sorted out.

#59 Post by **Jane** » Sat Apr 25, 2009 2:08 pm

Monarch... how is your son doing? I hope all is well with him. xx

#60 Post by **bbsadmin** » Sat Apr 25, 2009 10:32 pm

Jane,

I'm glad that you seemed to have finally found the right person to take you seriously and help your daughter. I hope that her problems can be fixed as easily as possible -- although it sounds like she'll be going through a lot. It's important to find someone who will take the time to talk to you and explain things to you. Personally, that's the type of doctor I always like, as well. Some years ago I had surgery on my foot and was very worried that I'd end up with nerve damage. When I found the right doctor, I knew it. He took a lot of time with me and really put me at ease, both in his office and on the day of surgery. Needless to say, the outcome was excellent.

We're all hoping that we hear good news from you as you seek to correct your daughter's problems.