Symposium

Ever since I joined the Corneal Dystrophy Association, I receive an invitation to their annual Symposium, held  this year in Milwaukee.  Noted ophthalmologists from all over, the country and the world, as well as those afflicted, gather to share knowledge and  research of what is considered a rare disease.  The good news is that this disease has a cure and the process of  the cure is constantly improving, with less and less invasive procedures.  The bad news is that since the disease/ disorder is relatively rare that it is not a payoff for most doctors to invest time and finances into learning the skills necessary to treat it.  So those whose symptoms have accelerated into the need for treatment willingly travel to the comparatively few experts who have practices, notably in Indiana, Oregon,  Florida, Texas and Maryland.  I know of one area ophthalmologist who performs the surgery, and have heard of only one person I know who has had the surgery with him.  She was happy with her results, but the Association website has other members who regret having gone with him.  So if the Fickle Fuchs' ever intrudes significantly into my life, I'll be off to Baltimore for treatment.  Years ago, corneal dystrophy used to be a leading cause of blindness, but as is said, there is now a cure.   For a person  diagnosed, each of that person's children has a 50% chance of inheriting the disease.  Though the disease typically does not show up intil later in life, that is not always the case.  Upstate NY and even the Boston area are notably lagging in knowledge and treatment of the condition, primarily because their practices are devoted to more common and profitable treatments, like laser treatments, which, btw, are very important to avoid if a person has corneal dystrophy.  (But who ever listens to an old person?)

More Medics

     Not the knee this time, but regularly scheduled maintenance on the eyes.  There are  11 eye care professionals at the Ophthalmic Consultants, and I have had appointments with at least 9 of them over the years, plus 2 who have left to set up their own practice, and 2 others who are deceased.  I have been a patient at that practice since it was run by Dr. McCarthy, and that was a long time ago.  I remember that he was a Princeton graduate who rode in a parade with then student Brooke Shields, and that he used to parachute out of airplanes, until he crash landed and messed himself up pretty badly.
     My brother and sister wore eyeglasses since childhood, and while I didn't need corrective lenses until I was in my forties, that doesn't mean my eyes are problem free.  Cataract surgery is pretty much considered an inevitable part of aging, so the need for that didn't come as any great surprise.  But the examinations for that revealed a congenital eye disease that I was completely unaware of.  (It is heredity, so younger relatives should be aware of their risks, but naturally nobody takes that seriously.   I feel  a little like Snowden; he is awaiting September's  solar flares for his justification.)  Additionally, I have had laser surgery for 2 separate retinal tears.  Like applying wallpaper, says the esteemed doctor.  My latest diagnosis, or quasi-diagnosis is as a glaucoma suspect, in danger of what is called normal-tension glaucoma as eye pressure is only 10 and 12, where glaucoma usually has pressure over 20 or so.  Moreover, one of the doctors now tends to prescribe "eye vitamins" to lessen the effects of macular degeneration;  there is no clinical  evidence of that disease, but a lot of older people suffer from it, so taking precautions won't hurt is his philosophy, and he does have a Ph.D., so he should know. 
     The point is that what used to be routine appointments are no longer that exactly; they are follow ups to previous visits that are now problematic in some sense.  I have 3 such appointments in the next week, and none of the news can be really good; the best I can hope for is no further deterioration.  And I'd be the last to know.  At my last visit several months ago, to a new specialist at the practice, he asked how I was doing.  I said fine.  My distance vision is great, and I can read without glasses, all but the smallest print.  "Unfortunately," he said, "that doesn't matter."   I think I'll kill myself.
  

Winding Down, Knee-wise

   I'm finished with Physical Therapy/ Rehab, both 2-week home based and 4 weeks out-patient.  Everything went well, my progress is very good.  I've had 2 visits with the P.A. one at 13 days, and the last at 6 1/2 weeks.  Everything is fine, including the X-rays, and I will see the orthopedic surgeon in 3 months. 
  It's hard to remember when I knew I had a real knee problem. I tend to trace it back about 6 years when I heard a clunk when I was walking down the long entry to a school, and at first thought I must have a stone caught in my boot.  But there were a few warning signs considerably before that time; in 1976, I had a cortisone shot courtesy of the late Dr. Paish.  Nothing showed up then, and I had no more issues until my knee inexplicably swelled shortly before a planned trip to Disneyworld, and an orthopedist drained fluid from the knee, and issued a brace (which I didn't wear.) Again, X-rays showed no damage.  Ahh youth!  I can remember hurting my knee a few times, really painfully, once in an auto accident, once ice skating and another time tobogganing. But once the injury went away, all was forgotten.
     So the real problem sneaked up on me, and on Dorothy also.  I remember sympathizing with her about two-footing down stairs; she'd had arthroscopic surgery before my knee became a real problem.  Not too many years ago, I used to tutor at a school in Troy, for 3 different grade levels. The school had 3 levels, and my tutoring had me go up, down, then back up and down.  I remember getting winded, but had no specific knee problem.  Later, I remember letting students pass me on the stairs, so I could take my time, and still later I would wait until no one was in sight so I could "watch my step."  You know what this means, the dreaded old-lady two-footing each step.  Once in a while, I would have to climb stairs with a guidance counselor or teacher, and I would suck it up, and walk like a normal person, though I knew later, there would be pain.  Finally, I cried uncle and gave up any effort at normalcy, but it was such a gradual process I can't remember how long ago that was. 
  So now I no longer have knee pain.  It seems funny, but it seemed like they both ached, and maybe they did, but after surgery on the more severely afflicted, the other knee is pain-free.  I completed all the therapy with flying colors, but there is one issue that remains, and that is those infernal stairs.  I can ascend stairs like a normal person, but for some reason, I can't bring myself to step down with my "good" leg.  I can't even remember how that leg worked before the surgery, and nothing happened to it, but I am blocked from using it to step down.  The exercises are supposed to strengthen your quads, but it seems they are targeted to the operated leg, not the untouched one.  If I'd kept a record of how I walked before, I guess I might understand, but that's spilt milk.  There must be a lot of truth to the statement that you lose what you don't use.  So here I am, practicing how to walk down stairs like an adult.  Oh, the horror!

Karma in Retrospect

    I had a medical appointment this past Monday scheduled for 11:30.  The doctor walked into the room at exactly 12:30.  When I'd checked to see if  I was forgotten, the staff explained that "He is running a little late."  I was on the verge of being irritated enough to say I would reschedule, but then I remembered:   at my last visit with this doctor, he was concerned about my  scheduled surgery, and that perhaps it should be postponed. He made 3 telephone calls to the surgeon's offices while I was there, and waited each time until he received the information he was looking for.  I don't know if a patient had to wait during this time, but I felt I should extend  the benefit of the doubt.  ***I did  just read online that a patient was very indignant after waiting 3 hours at the Troy Eye Docs only to find that the doctors had all left, forgetting this patient.  So you gotta ask!

Collateral Compliments

In addition to my knee, the internal components anyway, I'm also racking up compliments on my sneakers, the first pair I've bought in at least 15 years.  I didn't think they were anything special----Nike Flex, bought at JCP's.   All physical therapists and Orthopedic Physician's Assistants admire them.  They are quite colorful, gray with turquoise on a white sole, a few discrete touches of chartreuse lettering, and the Nike Swoosh in rose pink.  Huzzah!

More on the Knee

    Today was my 6 week post surgical follow-up visit, a little late because of the holiday. I saw the P.A., Rich, who is very friendly and at the same time professional.  He ordered 3 X-Rays, and asked me if I wanted to view them, which of course I did. He explained each of the views, describing what had been done, and what and where all the titanium, chromium, and plastic pieces are.  Everything  looks great, I'm told.
   Today's  appointment was with him, the P.A., but he  asked me not to leave until Dr. C. stopped in. Though I'm not scheduled to see the surgeon for another 3 months, Rich said that it's Dr. C.'s preference to visit with his patients before that time, so we won't feel abandoned.  So he dropped in, all upbeat and positive, which I thought was a nice touch.  (I must say, he is kind of adorable.)






  

Never ceasing to amaze-----

  ----- No, not me, just my knee. Had return visit with Dr.G. today, last saw him  the day before TKR, when he'd called the surgeon questioning the wisdom of going through with the operation because of potential for infection.  His concerns were put to rest by the surgeon, who was no doubt by then in slice and cut mode.  Anyway, at today's visit,  Dr. G. was "Surprised as hell"  that I had no walker or cane.  He wanted to verify that I'd had a total knee replacement, and asked to see the scar.  He advised me to keep up the rehab.  I do, on my vintage 1980's Sears exercycle, rescued from the cellar where it's rested for many years.   I'm the daft lady pedaling away in  front of the house.