Decisions are the worst!

After months of Speech Therapy, We have come to the conclusion that we have not fixed Ali's lateral tongue thrust issue. She started with both a lateral as well as an anterior thrust. The Anterior thrust has resolved, but her lateral thrust is so severe that she has a posterior open bite. That means that her back teeth don't touch at all when she bites down.. When she eats, she has to chew with her front teeth. Very awkward and not very appealing to watch.
We had another appointment with her orthodontist a few days ago. He took another look at her mouth and read the speech therapists report. He sat back thinking seriously for a moment. He said that Ali was a pretty tough case. The problems in her mouth are not easily fixed by braces. He said that we didn't have many tools in our tool box for her and that he felt like the best tool for us to start with would be what's called a "Bionater". Its a retainer that is mostly used in Europe. It is about three times bigger than a normal retainer. It has a special shield that would help to keep her tongue from protruding out the sides of her teeth like they are and would hopefully retrain her tongue to stay where its supposed to be. He recommended trying this for a year and re-assessing where we were then. I felt okay with that decision and was waiting for them to check my insurance for coverage and costs.
Ex was supposed to be with us at the appointment but was running late, so I called him on my cell phone to let him know what was going on. Ex insisted that we get a second opinion insisting that they just wanted money. He kept saying that he didn't understand where all this trouble with her mouth came from because he'd done some research and it didn't run in his family. He kept repeating this, saying that he just didn't get why she had such severe issues, blah blah blah.. I wasn't sure where he was going with his remarks, considering he'd had braces for years. Knowing that I'd never had braces or anything before, I wondered if he was trying to question his paternity or something. The nurse had come in with the information so I tried to re-direct him into focusing on what was going on. I was stressed out after listening to him rant for 5 minutes and when I hung up I asked the nurse if there was a way that Dr Jensen could please talk to him about the issues so that he knew what was going on.
We waited another 15 minutes or so and when he finally arrived Dr Jensen and the nurse both sat down in the his office with us for twenty minutes explaining everything. If he had been questioning his paternity earlier, it quickly faded after Dr Jensen immediately mentioned how "Ali looked exactly like her daddy". Dr Jensen described her problem, and explained the bionater. The success rate with the bionater can not really be identified because its typical used for something else entirely. Ali's case is so different that we would just be modifying it to work for her. He answered Ex's questions and was so patient in explaining everything all over again. Apparently The Nurse sensed my uncomfortableness with him because she sat down in the chair next to me and rubbed my back re-assuringly. so the hope for Ali would be to try the retainer for a year , retraining her tongue hopefully bringing her bite down. The problem is that once she stops using the retainer, Her tongue could just go back and we would be right back where we started from. That is a frustrating thought.
so then, the Orthodontist mentioned another procedure. In the 20 years he's been working he's only seen two kids that have had it done. Its called a glossectomy. A Dr would take out the middle of her tongue and sew it back together so that her tongue wasn't so large. This would be 100% effective in fixing the problem of her tongue, but the procedure is quite invasive. Ali can barely get her flu shot each year without going into full panic mode. Can I even imagine what she'd be like going into something like that? Yes! and its NOT good!.
I've been researching the procedure the last few days reading up on the recovery, and anything else I can find. Its primarily only done on patients with mouth cancer. I was able to find a few articles specifically related to orthodontics but not much. I also found minimal information on the Bionater. The results again are really not very clear. The % of re-occurrence after stopping use of the retainer is different in all cases. Open bites are hard to deal with.
Dr Jensen wants a full work up and history followed on Ali so that her case can be documented for research. (that's promising).
I just don't know what to do. Most of me thinks that we should choose the less invasive route for a year and see where it gets us. We'd only be out $400.00 for the cost of the retainer ( if she doesn't lose it!!) and if in a year we haven't gotten anywhere then we move onto our next option.
However is it worth spending a year of Ali's life making her wear an uncomfortable contraption in her mouth, that may or may not even help and may get lost every time she takes it out to eat when having this surgery guarantees to fix the problem? Do I put her through this invasive surgery without trying to fix it first with the retainer? This is a very hard decision. I don't want to waste time, and energy trying to fix it with different orthodontic methods that may or may not even prove to be effective. I still have to find out more about the surgery. How much time will she have to stay in the hospital? How much will it cost? How will she recover?

This really is a hard one..