January 10, 2014

Don't Give Up

January 10, 2014

This morning I took my mother to have outpatient surgery at the surgeon's office to remove some varicose veins.  For months mom had been having severe foot pain in her right foot.  The foot, ankle, and lower leg kept swelling and nothing she tried seemed to make a difference.  It just kept getting worse and worse.  She went to her General Practitioner, and a variety of specialists and none seemed able to figure out what the problem was or how to help.

They tried several things.  They all said to elevate the foot and wear compression hose.  By the time she would get the hose on, she was too tired to do anything.  By the time she would walk from her car in a handicapped spot in the church parking lot, into the sanctuary, she would be in so much pain, it was all she could do to keep from crying.  The skin on the ankle had become rough, red, and dry.  One doctor gave her a cream.  The next doctor gave her a different one, and the final doctor said his cream was better than all the others, but that by that time there was so much skin damage, it would never again be normal.

After 5 or 6 doctors she did research on line (she had already tried to do some).  She found a site where she described her symptoms and the responding person told her that hers was a perfect classic case of a particular condition and that she needed a vascular specialist.  The only one they had listed was one she had already seen with no good results.  Our daughter-in-law recommended one that several of her friends had used and Mom got an appointment.  He confirmed the on line diagnosis and scheduled her first for laser surgery to handle the main problem.  Then scheduled a second surgery to remove some varicose veins that were a secondary problem.

Why am I telling you all of this?  It seems that as medical care is changing, we are going to have to become much more aggressive in our own treatment.  Mom often checks the number of minutes the doctors spend with her.  Three to five minutes is not unusual.  They are hurrying out the exam room door to see another patient so they can make a living when they are being paid so little by Medicare and the insurance companies.  She also has doctors that blame any problem she has on her age and they don't look for another cause.

The specialist I was sent to after my Sudden Hearing Loss hurried me out of the exam room to what we thought was going to be a hearing test.  It turned out to be the appointment desk to schedule me for allergy testing in a week and a hearing test in two weeks.  I marched back into the exam room area and confronted him asking what he was going to do about my hearing loss.  He looked shocked and Ron and I both again explained the problem and brought up Sudden Hearing Loss (our GP's diagnosis) and he said he considered himself an expert in that area.  We made no progress.  I returned to my office, did more research and called his office to cancel my appointments.  The nurse asked why and I told her I was going to find a doctor who was going to try to save my hearing.  A few minutes later the doctor called to see what my problem was.  After Ron talked to him at length, he said he would call back in a few minutes.  He called back with an appointment for a hearing test the next morning.

Could my hearing have been saved if he had been more quickly aggressive?  At best there was a 50-50 chance of returning it to the levels I had before the Sudden Hearing Loss (SHL).  I was already VERY hard of hearing prior to the SHL.  By losing the remaining hearing, I qualified for the Cochlear Implant and now hear better than I did before the loss almost a year ago.

Just let me encourage you to keep asking for help if you suffer from a medical problem.  Don't give up.  Do your own research.  Talk to friends.  They may have a friend who had a similar condition.  You will get a lot of advice that doesn't apply or doesn't work, but one of them may just have the right answer for you.  I do believe we need to try what our doctors tell us to do.  I get frustrated when people go to the doctor and then won't take the medications prescribed or follow his orders.  But if you try that and it isn't helping, keep looking for an answer.

It astounds me how few medical people I encounter know anything about a Cochlear Implant and most never heard of Sudden Hearing Loss.  The majority are interested and ask a lot of questions.  They want to see the device and they want to know how I am doing.  I want Mom to go back to all those doctors and show them that she can now wear her shoes and walk with far less pain (and what pain she does have now should continue to subside).  I want her to educate them so the next patient doesn't have to go through what she did before finding relief.