Greg called the specialist in California yesterday evening and was able to get the results / 2nd opinion on the condition of Peter's 'inner' ears structure...but first I have to explain a few things.
The surgery to create a normal sized ear canal from either a stenotic (narrow) canal or complete aural atresia (no canal) is known as an "atresia repair" and is sometimes also referred to as a canalplasty. In determining whether or not a person is a candidate for atresia repair, Dr.'s (normally) use a grading scale called the "J Scale" also known technically as The Jahrsdoerfer grading scale. It was proposed in 1992 and assigns an anatomical score (1-10 [the higher the score the better]) for the atretic ear based on the presence of 9 structures. Generally, only candidates with a J score of 7 or higher are candidates for repair or would benefit the most hearing wise from the atresia repair. Having said that, even a score of 7 is borderline and individually decided.
While I knew all of this before Peter's surgery, I failed to ask our Dr. what Peter's J score was and if our Dr. used that method in determining whether or not Peter was a candidate for repair. I made an attempt to remind myself the last time we met with Dr. T (our Dr. at U of M) about Peter and totally forgot with everything else on my mind. Mistake #1, write down your questions for the Dr! I trusted he knew what he was doing...mistake #2! Never use your heart in these situations, go with the facts and what you KNOW you should be doing. Can you tell I am so frustrated with him I could throw up?!
Dr. T did our Samuel's cochlear implant and was our Dr. we consulted with before bringing Peter home about his condition...we also love the fact that he is a Christian, we even prayed together in his office about our decision ~ unfortunately, those are the heartfelt things that got in the way of facts! We consulted with him a lot before surgery (via email and in person) about a plan for Peter's ears. He was a proponent of rib graft and pushed for us to use the cosmetic Dr. K who does rib graft at U of M. We met with Dr. K and didn't like her much at all...not to mention rib graft just wasn't for us. After he knew we were going with Medpor ~ for certain ~ he emailed me that I couldn't email him anymore about Peter and consult with him without making an appointment and following the proper channels. Was he mad at me? Yes, I feel like he was. Because he wanted to create a mid-west 'hub' for this type of thing so people wouldn't need to travel to California and 'nicely round out his career'. Now, I don't feel like he is open to me talking to him about my concerns with Peter and shame on him for making me feel that way!
Back to the facts...Dr. T told us the whole time that Peter's left hear was a candidate for repair ~ that his left was 'a typical atresia case' and they could open the canal and create more hearing unaided. The right, however, was 'less favorable due to the placement of the facial nerve'...so we were told. When I questioned him again about what that meant for us, he said 'there is a good possiblity we get into the right ear and have to back out because it isn't doable'. That was it for me...seriously?! That was unacceptable to me, you don't just drill a hold into a child's head and THEN decide if he is a candidate for repair. I requested a copy of his CT scan and mailed it to the specialist in California who does this for a 2nd opinion.
That brings us to last night. Greg called Dr. Roberson's office in Palto Alto to find out if they had received our package and whether or not they could tell us anything.
They were gracious and friendly and here is what we found out. Going back to that J scale of grading, Peter was a 6 on his left and a 5 on his right. Now, what does that mean? It means that one of the best surgeons in atresia repair would not have operated on Peter's left ear. He didn't read my letter so he graded both ears (or he would have known that we already had done the repair on Peter's left ear). Greg was shocked at that score and when he questioned her...not confrontational, but none the less...she put him on hold to talk to the Dr. and see if that was subjective. She came back to say that Dr. T was a great doctor and Dr. Roberson could see where he might feel that Peter could benefit more by opening the left to get a little more sound it but that he would always probably need a baha. I think he was trying to back-track after low-scoring his left ear when another Dr. already went ahead with the procedure.
There you have it. I was fuming, I still am!!! The whole point of doing the surgery was our trust in our local Dr. that Peter was a good candidate and apparently, that wasn't the case. Only 45% of kids (in a case study I read) with a J score of only 6, acheived a hearing score of greater than 35db. Even though there is still a chance for an ok outcome, I am not optimistic ~ maybe it is just the hear and now making me feel this way and things will change...but had we known all of this, we wouldn't have done the surgery. If he has to wear the baha anyway, and I was not impressed with the level of hearing afterwards, what was all of this for? Now we have to deal with all of the complications now and in the future, when we could have just scheduled the Medpor, got Peter his new ears and been done with it...not to mention he will now have 1 hole in one ear and not the other. Had opening his canal been the right and sucessful thing to do ~ it would have been worth it. Was opening the hold the right thing to do? Sadly, we are not sure and no parent wants to feel that way with regard to their child. I am so sad about all of this and feel like it is my fault. I did so much research to educate myself and feel like I failed Peter.
Well, now that I have had my little pity party...what is done is done. We have only tomorrow and need to continue to pray that we make the right decision by Peter, including the ones we have already made. Please keep him in your prayers.
Tomorrow, we will call and schedule the appointment to see Dr. Lewin, in California, to begin the process of getting Peter his new ears.
As a refresher...here is the website for Dr. Lewin and the Medpor procedure.
http://www.cedars-sinai.edu/Patients/Programs-and-Services/Microtia/MEDPOR-Reconstruction-for-Microtia.aspx
Amy, I am so sorry. First, you didn't do anything wrong! I know it is difficult-- I can feel the anger and pain in your writing. I don't think Peter is going to suffer from having his left ear opened. It will heal and you move on.
ReplyDeleteYou trusted a doctor that you had previously worked with and felt that you could trust.
HE is the one in the wrong! ANY doctor in this field with ANY knowledge is aware of the J-scale and uses it and makes surgical reccommendations based upon it! I cannot believe HE didn't bring it up while talking with you and Greg about Peter!
Even the latest studies note the success rates for normal to near normal hearing to occur when the score is 7 or greater.
There really is no mention of less than 7 because surgery isn't done if less than 7!
This guy is trying to further his practice-- I really don't know how in the H@!! he thinks he is going to succeed in doing that by pulling the kind of BS he pulled with your family.
Sorry, but this kind of "medical care" really hits a nerve with me!
(((Hugs)))
Amy I am so sorry! I agree with Reena though, you did nothing wrong! You are simply doing what you felt was best for your son based on Drs you trusted. Put your trust in the One who has even the smallest details planned out. For some reason this was to happen. Let's pray that Peter is one of those miracles and his hearing gets better. ONLY He knows. Maybe all this was to help with the bonding also? Is that still going better?
ReplyDeleteLove ya and lots of {{{HUGS}}}