I am a relatively young (age 60), very high above-knee (AK) amputee (5” of femur remaining) who underwent a total hip replacement on my other, ‘good’ side due to osteoarthritis. I wanted to document this journey because I have yet to find any similar case in medical literature or by asking doctors, nurses, therapists and acquaintances. When I think about the future needs of today’s military veterans, I hope my experience might provide some valuable insight and encouragement.
History: I lost my left leg at age 22 due to a rare
form of soft-tissue cancer (embryonal rhabdomyosarcoma) which also necessitated
aggressive chemotherapy and radiation.
Long-term effects of the treatments include osteoporosis and
osteoarthritis to an advanced degree for my age. Although I successfully wear a prosthesis, much
of the bone and musculature on my left side was removed, so my right leg does
all the heavy lifting (literally) in terms of walking, balancing, standing and,
until recently, hopping. This has also
contributed to the early deterioration of my right hip joint.
In recent years I have experienced increasing pain in daily
activities, I have begun using a cane, and I have been taking meloxicam for 18
months. In the past six months, it had
become hard to sleep through the night, even with a sleep aid, because of the
pain after lying still for several hours at a time. For those reasons I decided to have a hip
replacement, and I was encouraged by many to do so. I’ve heard it is the easiest of the joint
replacements both to perform and to recover from. I was told by a previous patient that within
a week he felt better than he did before the operation, so my expectations were
The Surgery: I did my homework and visited three surgeons before choosing one with the best reputation on my insurance plan. He was personable and confident, telling me he would not coddle me but would expect me to recover on par with any other patient, wearing my prosthesis from the beginning. In fact, after doing some research, he had me wear my artificial leg into surgery so he could use it to manipulate my pelvis for an anterior approach. I am very grateful he did that, since I have heard the posterior surgery is more difficult to heal and to rehabilitate. I had a general anesthetic, and the surgery went very, very smoothly by all accounts. Here is a helpful video showing the basic steps of the surgery.
Going Home: I did
well in the hospital according to my nurses, my doctor and my physical
therapist – so well, that my doctor authorized my discharge 24 hours after
surgery. He told me I could go home that
day or the day after, whatever I felt like doing. Because the hospital bed was giving me a
backache just as uncomfortable as the surgery pain, I decided to go home and
sleep in my own bed. There were some
good reasons to make that decision, and I had plenty of help waiting to care
for me at home, but what I did not appreciate – and no one discussed with me –
was the cocktail of drugs in my iv-bag keeping me comfortable in the
hospital. It included an extra infusion
of Tylenol (in addition to an oral narcotic), a muscle relaxer and a medication
for nerve pain. In my driveway, two
hours after I was unhooked from that magic bag, the pain hit me like a ton of
bricks. Although I went home with oxycodone,
it was inadequate to the task for the first four or five days.
Pain Issues: There
are undoubtedly multiple reasons for the pain issues I experienced, and I want
to document those which have been suggested to me by my doctor and physical
therapist, as well as those I have surmised for myself. First of all, my surgeon told me my bones
were “not in good shape,” something I knew to be true, and he thought I was
experiencing a good deal of bone pain. Second, my therapist described the
manipulation of muscles which occur during surgery (no muscles are actually cut
for the anterior approach), and she noted that the muscles in my right leg are
extremely large and strong, making the subsequent soreness and recuperation
that much worse. I did experience occasional,
painful muscle spasms in my right leg for two weeks after surgery. Finally, I think no one properly anticipated
or understood the unique circumstances of a high-AK amputee. While every other hip replacement patient has
another leg to bear the strain of movement during the early days of healing, I
have only my arms. Arms are very
helpful, but they only go so far. Each
act of standing up, lowering myself down, bending, stretching, balancing, etc.
was performed largely or solely by the very muscle and bone which had just
undergone major surgical trauma. I can’t
imagine what it would have been like if I had had posterior hip replacement
surgery which does require the
cutting of muscles.
My first days at home were filled with pain that sometimes rose
to a 9 on a scale of 10. I think many
people don’t really know what a 10 feels like, but after an amputation, two
natural child-births and several other unusual, painful situations, I think I
might. Fortunately, the pain hit a 9
during particular movements but would eventually settle back to the 6 or 7 I
imagine everyone else experiences with a hip replacement. Nevertheless, after four days of no
discernible improvement, I found it difficult to stop crying, and I was unable
to go to out-patient physical therapy (PT).
Sleep was hard to come by, even with narcotics. At that point the doctor prescribed a
muscle-relaxer and in-home therapy.
Whether the muscle-relaxer actually helped significantly or whether the time
was just right, I began to improve from day five on. By one week from surgery, I was able to
cooperate with PT, and by ten days out, I was able to stop using the bedside
commode and transition to a cane, things I had been told would happen sooner. In my uneducated opinion, my recovery was
delayed about a week from what might be expected for someone with two good
Recommendations: Each person should discuss their individual needs with their doctor, both before and during surgical recovery, but I would recommend that an AK amputee plan to spend a few extra days in the hospital or a rehab facility working through pain management, withdrawing those iv-bag miracle drugs slowly. It would have been helpful if my expectations had not been raised to such a high level before surgery, too.
I needed a lot of help at home that first week. Every move I made, especially going to the bathroom, had to be done with a helper. Fortunately, I have an attentive husband and some wonderful friends, but if you could not arrange for a support person to be there 24-hours a day, home health care or a short stay at a rehab facility would be essential. In-home PT was crucial for the first week of therapy (beginning one week after surgery) and optional but nice for the week after that. And be sure you have an efficient way to contact your doctor with questions and concerns after you leave the hospital, something that briefly proved to be a problem for me.
Another unanticipated difficulty was my use of
crutches. I do not normally wear my
prosthesis 24-hours a day, removing it in the evening and putting it back on
when I get dressed in the morning. While
it is off, I use crutches to move around the house, get me into the shower or
go to the bathroom at night. I was not
able to tolerate putting all my weight on the injured leg until about a week
after surgery which meant I could not use crutches for any of those
things. As a result, I did wear my
prosthesis except for the hours I was in bed, but I still had to wake my
husband at night to go to the bathroom (even to use the commode), and I did not
take a shower for almost two weeks. (Sponge baths and washing my hair in the sink
am writing three weeks after my surgery, and I am not yet able to say that I
feel as well as I did before surgery, but I think I am sleeping about as well
as I did before, so that feels like progress.
I am no longer taking any narcotics or muscle-relaxers, merely 8-hour Tylenol. I would say that my pain peaks at about a 5
during the day, usually after sitting too long and then rising on stiff
muscles. In general, I am feeling
encouraged and healing a little more each day though still quite sore. I plan to go back to work next week, and I do
not think that will be a problem. My preschool
granddaughters are coming to visit a week after that which will be a good test
of my improvement – and one of the biggest reasons I had the surgery in the
If you or anyone you know have had a similar experience, I would love to hear about it, and I hope by collecting these stories, we can help those who come after us. Feel free to contact me at email@example.com.