Deb Ann asked--
"By the way, why did the doctors say such things like that? Did they really graduate from college?"
I'm going to write about about my medical history in greater detail later, but I did want to give a short answer to this. From my experience few doctors know much about hearing loss. I think they must gloss over it in med school, because most doctors I've encountered seem only slightly better informed than lay people. General Practitioners and specialists other than ENT's might occasionally screen for hearing and make a diagnosis, but after that they send you to a specialist because hearing loss is over their heads.
Sometimes even ENT's know very little about hearing loss. For example the one I currently see for my sinuses specializes in sinus problems only, and has admitted he sends his patients with hearing loss elsewhere.
The only doctors I've met who seem to really understand hearing loss are otolaryngologists, which are ENT's who only see patients with hearing problems. Over the past 30 some years, I have seen four different otolaryngologists and three different ENTs in the Seattle area. The otolaryngologists all agree with my "idiopathic" diagnosis-- though they have thrown out several theories. After testing everything, they always attach a great deal of importance to my measles experience as a young child. All of them have said it was "probably caused by the measles." So just to simplify things, I tell most people the hearing loss was caused by the measles. As I said before, most lay people freak out and start telling me about specialists and giving me advice when they learn my hearing loss is "idiopathic" meaning cause unknown. After seeing seven specialists, I am satisfied with the explanation that sometimes "we just don't know."
Still, I see an otolaryngologist every few years, just in case any new tests have been developed that might give us a clue about why my cochleas don't work. The reason I have moved around between doctors was to see if any of them could come up with an explanation. It's good to get a second or third opinion. The first otolaryngologist I saw retired. He was old when I was initially diagnosed. The second one I saw has an international reputation, but a strange bedside manner. My husband still sees him for his Menieres, but he's definitely an "odd duck" and we laugh about his weird behavior sometimes. The third one I saw used to be in the same office as the "odd duck" then she moved somewhere else. The fourth was for a CI consultation. The reason for the different ENT's was because we moved and I didn't like the first one. It was clear he didn't have a handle on it. The second one retired, and the third one is in the same office as the second retired ENT, but he specialized in sinuses. Still, I like sinus guy's bedside manner very much and he's local, so I have all my hearing records sent to him. He is happy to refer to the otolaryngolgoists, and he is also connected to the audiologists I see, so it's a convenient relationship.
All of the audiologists in my office have their doctorate degrees in audiology too, but supposedly they can't diagnose biological hearing problems. They can only make a recommendation to see a doctor. Yet because they see hundreds of patients with hearing loss on a regular basis I find them very well informed and trust their opinions and recommendations much more than my GP.
The doctor I saw last week was a neurologist, and he's got an excellent reputation. He is the second neurologist I've seen about my migraine headaches. The first one had me on too many drugs and didn't seem to be listening to me when I said I didn't like these drugs. So I decided to see this other guy who my husband has seen about his Menieres when they were first diagnosing it. Neurologist number two has already changed my prescriptions to two drugs I tolerate better. This is the reason I haven't been blogging as much. I'm just feeling better and I'm busier.
I have mentioned I wanted to get my headaches under control before even considering the hybrid CI. So that's where we're at with the doctor situation.
Like you DebAnn I think it's weird that specialists could know so little about hearing loss, but the ears are a complicated organ. Few doctors run into idiopathic hearing loss in the general population. The only ones who see it often are otolaryngologists who deal with deaf/hh people all the time.
10 comments:
I've been out of the loop a bit lately...too much working and not enough playtime...but was interested in the last post and in this one. My hearing loss has been considered "idiopathic" for years. I had every test possible when I suddenly lost it all at four years old...from the specialists in Nashville and Memphis all the way to House Ear in CA...and they turned up nothing...my ears were perfect...they just didn't work. I never had measles, so that wasn't an option.
I haven't ever had genetic screening, and that interests me. My children hear fine, but my father suddenly lost his hearing in one ear about two years ago. It was an overnight thing....sorta like mine. I can't help but wonder if there are some sort of late-deafening genetic things that are perhaps in my makeup...and I just acquired it early. Who knows?
Hope your migraines get better soon...I very occasionally get them and they're horrible...you have my complete sympathy!
Interesting Jennifer-- I'm glad you wrote. I always wondered how you lost your hearing.
I had the genetic testing (Connexin 26) a few years ago as well as numerous other blood tests to rule out all the serious genetic disorders.
Nothing has ever turned up. No one in my family ever had hearing loss. It happens.
My brother is diabetic and no one in our family ever had that either, though the type of diabetes he has is known to be passed on genetically as well.
Also, years ago, a friend died mysteriously in her sleep. She was only 38. No one knows why she died suddenly. Her husband was a doctor. Nothing ever turned up in her autopsy. She was sleeping alone visiting her parents when it happened.
Weird things happen to people. The public doesn't realize how often doctors have no answers. We're conditioned to expect answers because TV doctors always know. The reality is they often don't know.
Glad you're feeling better!
That's why doctors called their expertises "practices".
The American Medical Association (AMA) is a real bully which would quash any potential medicinal benefits to reverse or cure any syptoms or ailments.
For example, "Environmental Health" which the state-run medical boards and the AMA would do anything to keep their own fellows from "out of business". They rather prescribe something that will be not workable or keep the patient coming for another prescription or visit, instead of potential cure/successful treatment.
The audiologists and neurologists and the proponents of cochlear implants are in the long-haul enterprise to make $$$ off socially-desperate individuals to fit in the dominant society at large.
I know better than my own doctors. I often dispute with doctors what and why they prescribe such stuff.
In the end, I found out that I really don't need to take those prescriptions, ex. allergy medicines which worsen my situation.
I used the Goldenseal Root herbs for my respiratory infections from using the allergy/asthma medications. I got much better than previous years altogether. Only $35 dollars to buy this herb as compared to the health insurance payments of various medications up to $400.
My doctors privately admitted that they LEARNED many things from me. They embraced me very well for my visits. Doctors ended up working with me, instead of pathologizing me.
Doctors are humans. Total crap! Why they need to shed their white sterile coats and work on their bedside manners and other more flaws.
I hate making medical appointments which are too much hassles to do. I usually do my own self-remedies and diganosises.
One of my doctors urged me to take up the cholesterol-lowering drugs which many doctors are very idiotic for doing the cholesterol screenings during the wintertime as many of our cholestrol levels tend to be much higher within cold weather.
The doctor found out that I reallu do not need any cholesterol-lowering drugs which she keep pegged me to take up those drugs.
I usually done the research on given prescription sheets before getting myself a medication.
Educated patients seems threaten physicans' prestige, self-esteem and God-like presences.
Many physicans of nowaday usually complain that they get less respect and prestige. Good for them!
Robert L. Mason (RLM)
RLM--WOW! I don't know where to start.
I agree it's good to question, question, question. I'm not at all intimidated by doctors. I have close friends who are doctors. I think they have a tough job.
If they don't prescribe the recommended treatments and something bad happens to a patient, then they can be sued.
Anyway, I'm leery of herbal treatments. Herbs can be just as powerful as chemical drugs and they present side-effects too. They are basically **uncontrolled drugs.**
Further, it's hard for manufacturers to control potency because of the nature of plant matter. Some plants may be more potent than others. Sometimes even one side of a plant can be more potent than the other side. So when you grind up a leaf for tea, you really aren't sure how potent it will be.
This is why chemical compounds were created. The dose is much more exacting. Prescription drugs have been tested for side-effects for years before they enter the market, so they are much safer.
The fact is marijuana, opium and Mushrooms are also "herbs" and we know how dangerous they can be.
I am not against trying alternative treatment such as accupuncture and folk remedies that don't involve systemic ingestion-- such as putting a potato on a wart.
I agree with you about the FDA and the control they have. There are many wonderful drug/treatments on the market in Europe.
In a recent People magazine I saw a picture of a man who had turned permanently blue because he took too much colloidal silver-- another herbal cure.
So be careful with the herbal cures-- OK?
Thank you, Kim for explaining and sharing the experiences. I'm overwhelmed by all the comments. I learn more from you and them.
You're always my favorite writer/blogger. ;)
The last comment about herbs which reminded me of my youngest son, I want to share it with you.
My doctor recommended me to have my son tonsils out when he was only 18 months old. My husband and I didn't agree with him, so we went to another doctor. He said that Brandon, my youngest son doesn't need it, so we let him to get better on his own. But we felt that we needed to do something else for him, he was weak at that time. We went to visit a homeopathist. WOW! After a short homeopathy treatment, Brandon got really well so fast and was so happy playing. She said that the first doctor gave him too much medicines that weaken his immune system.
Deb Ann-- I'm glad you told me about your experience with the homeopathist.
If a person is going to use "herbs" it's best to go to a Homeopath who has studied herbs and herbal compounds, rather than going to the health food store and picking stuff up off the shelf. Homeopaths take classes and have a degree in treating people with herbal cures.
I agree with you. It is costly but worth it. The homeopathist has been studied all different things in India.
Brandon hasn't taken any medicine for his colds from the new doctor for about more than a year. He's going to be three years old in May.
"Idiopathic" is one of those words that is a convenient catchall for when one doesn't want to discuss one's ignorance.
One thing is often overlooked: in the majority of unexplained congenital deafness, heredity is the reason. A recessive gene skipping many generations to show up unexpectedly can be the cause.
Whatever the reason, when it comes to language development, it is better to begin early and to do it with a comprehensive approach.
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