I have seen you face profound trials for more than twenty years. You stood up and walked when the laws of physics and the rules of anatomy said you could not. You learned to walk four times when most children only have to do it once. You proved yourself academically. You made good and loyal friends. And now you are standing at what might be the beginning of the last battle you will do with a hip you didn't ask for, but were given anyway.
In February of last year you had your annual check-up at the Shriners Hospital where you have been treated since the age of 3 for a condition called developmental dysplasia of the hip. These convoluted words serve to describe the ugly truth that you were born without a fully formed left hip. The doctors pronouced you good to go and you were sent on your way back to university to study, to learn, to improve the world and yourself.
Part of your quest was to get healthy, exercise, lose weight and take charge of yourself and your journey. You began a regimen of good food, plenty of exercise and walking up and down the hill to classes. You spent the summer helping youngsters enjoy and thrive in a university vacation program, spending your days teaching mathematics to middle school-age girls and encouraging them to become the smart, capable women they had a chance of becoming. I remember you calling me with excitement when one of your students wrote you a note, in several shades of colored pencil, to let you know how much she enjoyed the class and how much more fun math was because of you. A shining moment and unforgetable.
Then the pain began. Soon over the counter pain relievers did no good. You called and said that it was time to go back to the hospital. Something wasn't right in your hip. We made the pilgrimage to Shriners once again. The doctors looked, X-rayed, examined your diminishing range of motion and then sent you for an MRI scan at another hospital.
The next appointment was with another Shriners surgeon who decided that reshaping the head of the femur would be just the right thing to do. You burst into stunned and silent tears. This was much more radical than what you had anticipated. From the earlier appointment, you had understood that what you were facing would be an arthroscopic procedure to manage the cartillage in the joint, removing some that was in an awkward position and causing you discomfort. Now you were being told that you'd have a large incision, the hip would be dislocated and your bone would be shaved and filed and reinserted into the acetabulum.
After considering it, after having the surgeon sketch a rudimentary drawing of a hip on the paper covering the examining table, after voicing your concerns and your desire to just walk without pain, if that was the recommendation, you decided, then that is what would happen. You scheduled the pre-op appointments around your school schedule. We made plans to visit far-off family before the surgery date and flew across the country and back. You went for a full day of tests, X-rays, gait mapping by use of sensors stuck to your hips, knees, feet. You looked like a character from Tron.
We checked you into the hospital on a frigidly cold December day, just before the first of the year. As always, the Shriners did so much to make you feel welcome. Teddy bears were waiting on the bed. A custom pillow case was made just for you. There were warm, cozy fleece blankets that you could take home after the procedure. And the nurses brought in a rollaway bed for me to sleep on that night. We settled into the routine of hospital life. We took a short walk to the large, airy playroom located in the center of the square of patient rooms and played games. We watched some cartoons. The surgical Resident came and did an examination, talking with you once again about the details of the surgery and answering the few questions that were left to ask. You went into the shower to prep for the next morning's surgery and then we tried to get some sleep.
There was no alarm clock the next morning to wake us. There was, however, an orthopedic surgeon with a large cup of coffee and a mop of curly hair barging in and rousing us with questions, concerns, yet another examination. He wasn't sure this was the right procedure. He had been up late the night before looking at your scans, your X-rays, your history. Something wasn't seeming right. He suggested that he simply give a cortisone injection near the joint to see if it would give you relief. None of us really believed that it would, but it was the route of least harm.
An appointment was made for the next week to follow up. You and he would talk then about whether to go ahead with the surgery. Time seemed out of joint. The letdown was palpable. You had done so much mental preparation for the surgery, the recovery and the rehabilitation that to change the plan now was like standing at the doorway with a parachute on and having the pilot abruptly slam the hatch shut.
We went home and you began in earnest to research the best possible solution for a hip that no longer worked except to give you pain every time you moved.
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Comments
[patently inadequate comment, sincerely meant, expressing support and admiration]
Rated with hugs
Owl, I'll do that. It's good to have you in the loop.
Hugs and wishes for the best for both of you.
Xenon, I send you humble thanks. You should read her writing. I'm pretty proud of that too. I'll take those hugs and wishes and send them right back to you as well.
FWIW, I knew a young woman with congenital hip displasia. She was in a wheelchair when I first knew her. After surgery she, well, maybe overdid it, but was into all sorts of physical things. I hope there will be a similar outcome.
She also got a tattoo that incorporated her surgery scars...
Rated.
Scylla, thanks so much. We'll take all the positive thoughts and prayers you can send.
Gabby, the Shriners transformed her from potentially being in a wheelchair all the time to a person who has been able to walk for 17 years. Unfortunately they are unable to do the surgery that she has coming up but she's going to be in the best hands. Thanks!
I'm so sorry your daughter has to go through this. I've only been through hip surgery once -- a fracture of my right femur at the neck, in a figure skating mishap triggered by a progressive neurological problem I was unaware of.
I would be horrified at the notion of having to go through that again! Yet, given my present degree of disability (most of which is due to my neurological problems rather than my hip, though that does cause me some trouble) -- I can readily understand the need to do so. A bad hip can make it hard to even lie in bed without pain, and you really don't appreciate mobility until you lose it.
I do have one suggestion for her, which is to consider a Segway as a mobility aid. I don't know what her recovery path will be, or the end state, but if she is at a point where walking remains difficult, but some weight-bearing use is advisable, it can be incredibly liberating.
I have used a Segway for basic mobility for the past 3 years, putting over 4000 miles on my unit. Two years ago, my mother tried it, and immediately ran out and got one of her own to maintain her mobility; she is now 79.
It is now explicitly covered by the ADA regulations (as opposed to implicitly before). I regularly use mine in stores, courthouses, airports (but not on airplanes, sadly), etc.
My mother has a seat fitted to hers, so she can sit when she needs. I'll need to do that eventually.
I had my surgery soon after the Segway came out, and I remember looking at it from my wheelchair, thinking I should get one back then. I really regret not having done so a lot sooner!
At the time, I assumed it was tricky to learn, and not suitable for someone not in good condition. I've since found people with a wide range of problems using them, including people with no legs. There's an organization called Segs4Vets which has distributed around 1000 of them to veterans disabled in our two ongoing wars, and I've met people with oxygen bottles for respiratory problems, people with heart problems, neurological problems (including Parkinson's and MS), knee problems...
It's not right for everyone -- but it sure beats a wheelchair, or a walker, or hobbling around with a cane. (I was getting arthritis in my wrist from using a quad cane!)
Of course, I hope her end point is full use of her hip, and the need would be temporary -- and that her recovery is swift. But if she finds her hip is limiting her, it's an option to consider.
She (or you) can feel free to contact me for more information about my experience with it.
In the meantime, I wish her the best of luck with the surgery, and hope the nurses take real good care of her.
It's good to know that ADA embraces Segway use. I remember when ADA first went into effect and lots of people were worried about how it would affect loads of things, including their pocketbooks. My daughter went to the president of her university this winter and pointed out how much of the campus was not compliant. The next day, many of the deficiencies were corrected. It's always good to know your rights and to have advocates help to get them.
Thanks for coming by.
So far, you and I have exchanged only a few "pm"s-- over a rather long period of time. I can't right now think of the current preferred word for "dullard" but whatever it is, it's what I should be called for now as to computer usage and [not very] savvy. Your friend, Kent, has been helping me try to find my way back to being able to post a blog of my own and reply to others, but I'm ?"not there yet"?!
Just do want you to know I've been deeply engrossed/immersed in these recent posts of yours about your daughter -- whose surgical history itself and place of procedures have struck "many a chord" with me (for reasons I could explain if I knew how to open up my own blog ... so "please bear with" about that for the moment, o.k.?)
It's my sense of the moment (three hours later there than here) you and your daughter are -- "g-d willin' an' the tornadoes don't rise" safely back home from your daughter's surgery.
Just wanting to say I hope you and your lovely daughter and her dad are safely back from your place of surgery to your home.
Keep us advised, o.k.?!
much love,
currently-a-bit-computer-afflicted
"podunkmarte"