Stories From People Who've Had an Experience With a Cholesteatoma
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Stories From People Who've Had an Experience With a Cholesteatoma
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[ Story 1 - Jeff Pittman, 18 ] |
Vinny
In January of 1995 we were blessed with a healthy baby boy named Vinny. Before the end of that year he embarked on a long journey of trips to the pediatrician’s office (for ear infections) which would last about six years. As concerned parents we always made sure that we called the doctor at the first sign of any illness, and never missed his well-baby check-ups. The Frustration As most parents do, we trusted his doctors each time he was diagnosed with Otitis Media in his left ear. At one point, when he was about four he was referred to an Otolaryngologist who treated him and subsequently wrote a letter to his pediatrician that he had ‘grown out of his problem’. In 2001 he started to have drainage from his left ear, which raised a red flag for me. His pediatricians continued to treat him, asking us to ‘come back in a month’ after each visit. Finally, upon our request, they referred him to the same Otolaryngologist he had seen in 1999. He treated his ear, and scheduled monthly follow-up visits until one day in late September of 2001 Vinny had the worst ear infection he has ever had. I knew it was bad because in his 6.5 year life he was always a ‘tough guy’ and never cried over illnesses or ear infections. This one had him screaming and crying out in pain! The Otolaryngologist finally looked at his ear under a microscope and ordered a CT Scan. We received a call about a week later that he would require surgery and that there was only one doctor in our area that could perform it. Our Savior This is when we met Vinny’s ‘Guardian Angel’. His name is Faramarz Memari, and he is an Otologist/Neuroltologist. Dr. Memari took the time to explain the CT Scans, and stressed the importance of treating this condition (cholesteatoma) as soon as possible. He told us that he thought that Vinny’s was congenital (there since birth), and looked quite extensive. He also explained what would happen if it was not surgically removed…brain abscess, meningitis, and even death. His was throughout his middle ear, mastoid bone, possibly in the Eustachian tube, and right up at the lining of his brain. At this point, it looked like he would have hearing loss, as his Ossicular Chain (bones of hearing) looked damaged, but Dr. Memari was confident it could be restored by reconstruction. The Fear & The Anger It was a lot to digest in such a short amount of time. My first reaction was fear – for Vinny. The surgery involved making an incision the length of the ear from the back along the mastoid bone. The entire ear is then pulled forward so that the surgeon can perform this very delicate surgery. My second reaction was anger. Anger at the pediatric group that treated him from the delivery room into first grade! Why didn’t they diagnose this earlier? Why should he have to go through this – and possibly lose his hearing or suffer facial paralysis from nerve damage? Misery Loves Company I immediately tried to find as much information about this, what I thought to be rare, disease as I could. I spoke to many people. None had ever heard of it. I looked online, and most web sites that had descriptions were extremely medical. Finally, I found two ‘havens’. One was a yahoo group whose members either had cholesteatoma or had a family member with cholesteatoma. This group helped me to keep my sanity before, during, and after Vinny’s first surgery (2 surgeries are usually required – they have to go back in for a ‘second look’ after the first). I developed many friendships through this group, and learned a lot. One of the most important things I learned is that this is a very serious medical condition, and the people in the medical field need to take it more seriously. Also, once it is diagnosed, many of these doctors don’t know how to properly treat it. Many do know the proper treatment, but do not refer their patients to surgeons with more experience with this delicate procedure, and try to perform the surgery themselves. The general public also needs to know about this well kept secret – this monster that could be lurking in yours, your child’s, or another family member’s head! Bad Things Happen For A Reason Some good has come of this! I’ve decided to channel my frustration and anger into something constructive. I plan to start an organization which would promote awareness of this dreadful condition so that others in the future may be diagnosed before it starts to cause extensive damage. This organization will also provide a national (and hopefully international) database of doctors most well equipped to treat this condition. Vinny’s Prognosis During Vinny’s November 5th surgery his doctor removed what he hoped was all of the cholesteatoma, which consumed his middle ear and mastoid bone. He also replaced his Ossicular Chain, ear drum, filled any bone that was destroyed, and re-built his ear canal. After a long recovery period, Vinny’s hearing test shows that his hearing is the same as it was before surgery – perfect. He also had the green light for sports activities just in time for the Little League season. He will have his second surgery on June 13, 2002. We’re praying that his doctor will not find any signs of cholesteatoma. We’re very fortunate to have had such a wonderful surgeon who has an excellent track record for recurrence and hearing loss – 0 for 0! A lot of people have not been so lucky and have had as many as four, six, or more surgeries. Many are small children. We’re fortunate, but I don’t feel we’ll ever be out of the woods – there’s always the chance that the ‘monster’ will be lurking. We just don’t know when he may rear his ugly head. Hopefully, never. Realistically, we can never take an ear infection for granted again, and neither should anybody else.
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