Dear All,
There are two issues here that I want to address.
First, getting an excellent fit, not a good fit but an excellent fit is what is needed for the TransEar and the Sonnitus SoundBite. I remember several months back someone posted on the Forum that they had gone to the TransEar company themselves over in Tennessee which was only a three hour drive away and had an excellent experience. They are the true experts and someone that does it once in two years doesn't know squat. You're just setting yourselves up for failure. I come from NY and my mother would find out the expert and took me to the best so my advice stemming way back from my NY mother is to take yourselves to Tennessee if it is the TransEar that you want. I talked with the rep in Cincinnatti last weekend and they have the actual inventors practice right in town where they would send you. This is the place to make you successful.
Secondly, I am diagnosed with Ehlers Danlos Syndrome which is why I've had such a terrible recovery. My two daughters also have it. Google it and you'll see what I mean. One of the problems is scar tissue. My daughter while she was in Middle School had to have three plastic surgeries to get rid of a blood time test scar made with a razor blade at NIH, a chicken pox scar on her thigh and a poison ivy scar on her ankle. They were all large keloids. We all have platelet abnormalities and Ani has Celiac Disease and so does her son so they are off gluten.
The point I'm making here is that this to do or not to do BAHA question is very individual and I love you Jan, but I can't just can't have another surgery and the BAHA with the violent way that I scar would present problems galore. That's just my family. We have Ehlers Danlos Syndrome as diagnosed by Dr. Francomano a geneticist formerly of the Genome Project and now in private practice. I had my excision surgery on May 26 and the stitches out on Tuesday. Dr. Ducic said there was so much scar tissue trapping my nerves and he had to work on removing the scars before he could work on the nerve excision. Now I am feeling much much better since the excision and removal of the scar tissue. What is interesting to note that back in the Summer 2010 my Beijing accupuncturist said it was the scar tissue that was causing my headaches and he couldn't help me.
There are just some of us that make crappy paitients and I and my family are in that group. We scar, have myofacial pain (also part of Ehlers Danlos) and just take forever to recover. We can't join you Jan as much as we would like to. For us, even a small BAHA surgery is MAJOR!!! That's why Dr. Ducic's ears perked up when I told him I had Ehlers Danlos Syndrome. We have to move through life carefully and not have too much surgery. I've already had more than my share which was unfortunate for my life and my time childrearing. Recovering from surgery and not being able to run or dance because of the paralyzed vocal cord has been major, but I've survived.
So please Forumites, we are not doctors and must remember when giving out advice that one of these BAHA surgeries is no big deal is leading someone down the wrong path. Dr. Niparko's resident came in to my room to tell me about the BAHA and on my follow up visit Dr. Niparko was disappointed that I wasn't interested. I was still last Spring dealing with major one sided brain wrecks and all he was interested in was more surgery.
The Sonnitus is available at GW in Sept. if you are interested in coming to Washington.
You can contact me if you want the contact information.
I hope I've made my point.
Hugs to all of this large diverse group!
Mei Mei
