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 pretty high.
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.
Improvement: 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 legs.
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 seemed adequate.)
Expectations: I 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 first place.
Update: Three months out I feel much better than I did before surgery and still see minor improvements with time. My balance and gait are not what they were before, but the reduction is livable. I have virtually no discomfort or pain of any kind.
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 firstname.lastname@example.org.