Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 In a message dated 3/29/01 4:31:16 AM Eastern Standard Time, cbenecke@... writes: > I wish this wasn't such a new medical " discovery " . I'm getting more > confused by the day! > > > Carol, mom to , 4.11, bilateral mod to severe/profound HL, EVAS > > > Carol, It is not really a new medical discovery, mostly what has happened over the last several years is the testing has become more ritual, so the diagnoses is determined long before they start to see a drop in hearing. There also seems to be no real pattern to the why and how the losses occur. We have two daughter with EVA, and the patterns of their losses do not match. Our youngest daughter was diagnosed with EVA, after a sudden large drop in hearing. She had normal hearing in one ear, and a mild to severe loss in the other. One day I put her to bed one child and she woke up the next day, different. After a visit to the test booth to see what was going on, we found that she now had a bilateral severe loss. The only thing that happened that I could put my finger on, was a typical toddler head bump on the corner of a table. Not even enough to make here cry. After she was diagnosed with EVA, we went back a had a second opinion on her older sister CT scan and found that she too had EVA. She had bumped her head many times like kids do, and there had been no decrease in her hearing. We had the opportunity through all of this to have both the girls CT scans reviewed by Dr. Epstien who has done extensive research on EVA. His thoughts where that a lot of HOH children's EVA went undiagnosed because progression wasn't always seen. There where things he said we should do, but he also cautioned us on not feeling like the girls had to walk around the rest of their lives with a helmet on. The things they knew, where no contact sports that could result in a major head trauma, a low salt diet and not flying in an air plane. Anyway..'s loss stayed stable for the next 7 years, Holly's loss I believe fluctuated often from day to day, and ultimately she ended up with a profound loss. had a slight decrease in hearing at age 7, which was enough for us to decide to do get the implant. EVA has been around for such a long time, it just seems to vary so much in each individual cases that there is not any real right way or wrong way about it. AGBell can get you in contact with Dr. Epstien if you are interested in any of his research papers. Sincerely, Clarion 8/99 Holly Clarion 12/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2001 Report Share Posted March 29, 2001 He said that loss from EVAs is usually more sudden--a > bit drop at one time immediately following a head injury. I was relieved to > hear that I wouldn't have to restrict him, since he's very active, Hi Kerry, Did the doctor advise against ANY types of activities? I ask because we have received similar instructions for my son (also EVAS) and are still in the process of deciding which sports activities to allow. At least two of the studies I have read specifically mention that " heading " the ball during soccer has caused overnight, often irreversible hearing loss in children with EVAS. Other than that, I try to look at each activity to determine the probability of a blow to the head or a change in intracranial pressure. (The term " head injury " can be misleading because people often view it as a traumatic event as the result of an accident instead of something that can be more subtle.) It sounds as if the doctor you spoke to doesn't think EVAS is the only cause of your son's hearing loss but I wonder if he's basing that belief on the slow progression of the loss. From what I've read in journal articles and from conversations with others who have children with the condition, EVAS is often evidenced by an average, gradual loss of about 4 db a year, even without head trauma. I wish this wasn't such a new medical " discovery " . I'm getting more confused by the day! Carol, mom to , 4.11, bilateral mod to severe/profound HL, EVAS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2001 Report Share Posted March 29, 2001 My son anxder uses bi-cross aids. They are the Siemens MUSIC. He has no measurable hearing at all in his left ear and severe/profound loss in his right. He has had the bi-cross aids since he was aided at age 5 and we have been pleased with the results. He has never had any confusion issues when trying to figure out where sounds are coming from and his speech improved dramatically. The kind he uses has the wire along the neck, going between the 2 aids.IMO the bi-cross aids are working very el for him. , mom to ,7,severe/profound loss, ,5, and ph 2 --- kbkclovis@... wrote: > Does anyone on the list have a child who uses a > bi-cross (spelling?) hearing > aid to transmit sound from an ear with profound loss > to the better ear via > radio signal? We saw an ENT at Stanford yesterday, > and he mentioned them > when I asked about possible aids for 's left ear > which has a profound > loss (85-120+ db). It sounds great, except I would > think it would be very > confusing not being able to tell where the sound is > actually coming from. > > I was somewhat disturbed to learn that 's > hearing had dropped 10 db > across the board in his right ear, since August. He > has a " cookie bite " loss > that peaks at 50 db and drops down to 80 in the > mid-frequencies. > > My primary reason for going to Stanford was to get a > determination regarding > EVAs, so I took 's CT scan from 1996. The doc > said does have > slightly enlarged aqueducts, but his cochlea are > also not perfectly formed, > and he's ordered the Connexion 26 blood test. I > asked about restricting > 's activities, but he didn't think it was > necessary, since 's loss > has been very gradual. He said that loss from EVAs > is usually more sudden--a > bit drop at one time immediately following a head > injury. I was relieved to > hear that I wouldn't have to restrict him, since > he's very active, and his > local ENT just said, " Yea, you probably should take > him out of sports " > without even looking at his ct scan. The doc at > Stanford also said that > will be an excellent candidate for a cochlear > implant if and when he can no > longer wear an aid in his right ear. > > Thanks to everyone who has responded to my previous > posts regarding EVAs and > doctor referrals in California. I was very > impressed with the folks at > Stanford. Thanks, Sheri! > > Kerry (mother of Bradley, 12, and , 9, with a > Senso Widex P-38 for his > right ear and left ear unaided) > ===== Our Family Page: http://johansenfamily.homestead.com/ ********************************************************** As of today 28 firefighters have died in the line of duty since Jan.1,2001. May they watch over those of us who continue to fight the dragon, and may they be waiting at the gates for those brothers and sisters that are also called home. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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