Planning for Surgery
For some patients, the decision on amputation is not yours to make. Accidents and other circumstances may leave you without a choice. For those living with severe pain or other declining medical conditions affecting a limb, making the decision to lose a limb is one of the most difficult decisions you will ever make. If you have been suffering with a declining, long term, limb related, painful medical condition, the decision to choose amputation may not be as difficult. When you combine long term pain, lack of mobility, social isolation, work related issues, medications, depression and a myriad of other related problems, the promise of a better life as an amputee is worth considering. Of course, involving others in the decision, your family, physicians, therapists, loved ones, etc. is a part of the process, but the ultimate decision is yours to make.
Planning for recovery
Common sense says that it is better to prepare for the major changes in your life. Spending time learning about options that you may have and making plans for recovery are essential for a great outcome. Be prepared. Involve those close to you in the planning process. Your physician and prosthetist, will have suggestions to make. If your city has a peer counselor associated with the Amputee Coalition of America, call them and arrange a meeting before surgery. They will have tips and suggestions on pre op planning and be an excellent support resource.
Having a positive attitude is the foundation for success in many areas of our lives. Focusing on your new life is critical for positive mental preparation. Imagine yourself being pain free, regaining lost mobility, standing upright, living without crutches, getting out of that wheelchair, walking and even running, playing sports, living without the drugs, and enjoying life again.
Life is all about making good decisions. A positive mental attitude is a decision on your part. Being happy is also a decision you make. Most individuals generally like being around happy people who have a positive mental attitude rather than those who are always negative.
Be realistic with yourself and your expectations. Talk with your prosthetist and other amputees about when things happen during the first year. When is my first doctor visit after surgery? When do my stitches come out? When will I go back to work? When will I get my first “trial” prosthetic limb? When might I be walking without crutches?
Mark these tentative milestones on your calendar, so you will have some reference as to where you are in your process. Understanding your progress, and seeing it actually happen, is positive mental reinforcement.
As a general rule, the healthier and stronger you can make yourself prior to surgery, the better off you will be after surgery. Working with a physical therapist, who is familiar with amputations, can be very beneficial prior to and after surgery. Before surgery, exercises will be prescribed, which can be done at home, to help build up muscles you will need after surgery. For those who have had a sedentary life style prior to surgery, this is especially important. For those who are far above their recommended weight, and have adequate time to reduce their weight, through a medically approved program, they will generally find the transition easier.
The good news about medical equipment is that you may already have some of what you will need. Patients with a pre-existing limb related condition usually have crutches, possibly a wheelchair, a roll about knee scooter, large foam wedges, grab bars in showers and toilet areas, shower or bath stools. If you have time and a little help, items like grab bars are cheap and easy to install. Check at your local Lowe’s Hardware or Home Depot in the bath department. Thinking ahead will make the transition to your new life so much easier. Some of the medical equipment you only need for several months after surgery. Check into renting these items. The goal of amputation surgery is to get you back to a normal life as soon as possible. You don't want to rely on long term use of medical equipment if you are capable of being fitted with a prosthetic limb. On the other hand, some equipment, like the shower bars, toilet bars and knee scooters, may be a regular part of your life.
Because of recent changes in health care coverage and insurance plans, asking the right questions before surgery is a good idea. Most hospitals, physician offices, and prosthetics groups have someone who specializes in dealing with insurance questions. Once the decision is made to schedule surgery, stop by and visit each specialty where your medical insurance will be needed. Have your insurance cards with you. It’s a good idea to make a list of insurance questions before you go. Questions like, “Am I covered for this surgery?” What is my estimated out of pocket expense going to be? What if I am in the hospital longer than expected? Will rehabilitation be covered? Am I covered for prosthetic limbs and services? To what extent are these covered? You want to be sure that your physician is allowed to make the medical decisions regarding your care, rather than your insurance company. Those are just a few of the insurance questions you may need to have answered before surgery.
Types of surgery
Surgical procedures vary from physician to physician. Your individual medical situation may leave you with fewer options than other prospective amputees. When time and circumstances permit, doing your homework and researching options is recommended. Not only will you learn what surgical choices are available, and technical information about a specific surgery, but you will be better able to communicate with your physician about his or her recommendations.
An example might be someone who has a serious lower limb issue and knows in advance that a below the knee amputation is in their future. Research through internet resources, on websites and amputee forums will produce two schools of thought. One is the conventional BK ( below knee) amputation and the other is the ERTL procedure, which is a more involved BK surgery. Let’s take a quick look at each.
Conventional BK amputation
Amputations have been done for many hundreds of years with very little change in the procedure. The Tibia and Fibula are cut at some point below the knee, the muscles are cut, blood vessels are sealed, and the five nerves are generally located together and secured within the remaining limb. Typically, the muscle insertions are not relocated to the bone, but stitched to the fascia, which can pull off and expose the ends of the Tibia and Fibula. Reattaching the muscle insertions with a procedure called a myodesis is crucial. The skin flaps are stitched closed and the residual limb is allowed to heal.
The ERTL procedure is a more complex surgery which attempts to maintain the integrity of the major muscle groups in the leg, while building a bone bridge across the end of the Tibia and Fibula connecting the inter medullar canals. The muscle is wrapped around the bone bridge, providing a soft, but strong protective covering. The individual nerves are isolated, cut and allowed to retract back up into the residual limb, helping to reduce phantom pain and phantom sensations. The skin flaps are stitched closed and the leg is allowed to heal. The ERTL procedure offers many advantages over the conventional amputation. One major advantage of the ERTL is that it allows for much higher end loading of the residual limb, allowing the distal end to carry more of the load in your prosthetic leg socket.
Selecting a surgeon
Chances are that you have an existing relationship with an orthopedic surgeon, vascular surgeon, or someone treating you for diabetic issues. The relationship that you have with the doctor who knows your case well is a very special one. Many of you have walked down a very long path with your doc, which has led you to making this important decision. Conversations with your doc as to what type of surgery you prefer (standard amputation or ERTL, in the case of BK surgery) can be difficult and awkward. If you are making a choice of a surgery that your doctor is not familiar with, or does not have the expertise or experience with, the conversation can become a bit uncomfortable. For that reason, it is recommended that you begin these discussions with your physician early in the process, once you learn that amputation is a possibility.
In the case of a prospective BK amputee wanting the ERTL procedure, look for surgeons who have had training with that specific surgery ( do an internet search). Make a trip to visit with the surgeon. Bring your medical records and CT scans or X-rays or send them in advance of your visit. Be sure to bring your insurance cards so you can be sure the surgery is covered by your carrier. Make a list of questions so you don’t forget important items. Ask the surgeon how many of that specific type of surgery they have done. Ask if it would be possible to talk with several of their patients who had the same surgery. Also ask if they work with a good prosthetics group or can recommend one close to your home. Make yourself a note to make a pre-op visit to the prosthetist office.
It is not always possible to find the “right” surgeon in your home town. Some travel may be necessary to accomplish your goal. Often this is not as difficult as you might think.
One of the “most” important decisions you will make as a prospective or current amputee is the selection of a great prosthetics organization.
Surgeons come and go, but your prosthetics group is with you for the rest of your life! Nothing has the potential to make your life as an amputee more wonderful than a top drawer, well trained, up to date prosthetics specialist, who is committed to your comfort and well being.
That said, begin the search early. Talk with local amputees or amputee groups. Visit the prosthetics companies in your area. Talk with the prosthetists on staff. Ask if you can talk with or visit several of their patients. Since the prosthetist is the clinician that you will spend the most post op time with, ask about their experience with your specific type of surgery. In the case of the BK amputee who has the ERTL procedure, it is better to work with someone who understands how the ERTL differs from a standard BK amputation. They will factor in the longer healing time and the residual limbs ability to carry higher loading on the distal end, when designing the socket.
Your surgeon will have a relationship with a hospital where your surgery will be done. Prior to surgery you will want to find out if the hospital has guest rooms available for your spouse, family members or other helpers to stay. Some hospitals allow a helper to stay with you in your room. Check on parking deck locations and visiting hours. Talk with the hospitals insurance person to be sure that your insurance company is accepted and what percentage of the charges will be covered.
If your family will be staying overnight at local hotels, check to see if the hospital has an agreement with a local hotel for discounted rates.
Recovery from amputation surgery is a process with many small steps. Each case is a little different, but most cases follow a similar path. Following your surgery, your hospital stay will normally vary from several days to a week. Some patients might require inpatient or outpatient rehab for a week or more after being discharged from the hospital. Other patients, who are functioning at a satisfactory level, may be sent directly home for recovery.
Once discharged from the hospital, or rehab facility, have a plan for getting home. You will need to keep your leg elevated. A car or van with a large back seat will allow you to prop your leg up on pillows, greatly increasing your comfort during the trip.
Yes….it’s going to hurt. The pain can be managed in many ways. Keeping your residual limb elevated above your heart helps in several ways. It reduces swelling. Less swelling often means less pain. Ice packs reduce pain also. Keeping your mind on other things, positive things, is a big help. You surgeon will prescribe drugs for the pain. For the first week or two after surgery, you will probably need them. It’s better to stay ahead of the pain curve and have your medications in your system, following your docs orders, than to suddenly find yourself with pain you can’t control.
For amputees who have lost a leg, getting vertical, such as standing up on your crutches, during the first two or three weeks, can be extremely painful. Plan your crutch trips carefully, and give your medication time to become effective before starting. Stand in stages, moving slowly from lying down, to sitting up, to pulling up on one knee, wait…....ease up slowly as the pain builds, stabilize yourself in the vertical position and wait for a minute or two, allowing pain to peak and reside, before moving off on crutches.
Within two or three weeks, less of the heavy medication is needed. You will find that you can switch to over the counter pain medication, which will allow your head to clear, as you reduce the use of narcotic drugs.
In the early stages, keeping a written medication log, in a small notebook, will help you remember what you took and when. Write down the type of drug, day, and time your meds are due. Put a line through that notation right after you take your meds, so you won’t duplicate the dose. In the wee hours of the morning, when your helper is fast asleep and you are hurting and groggy, use that note book.
Phantom sensations and Phantom pain
There is a difference between phantom pain and phantom sensations. In the early days following surgery many amputees will experience the feeling of their feet or toes tingling. These phantom sensations are very strange, yet common to patients who have lost a limb. In some cases the lost limb feels like it is still there. In others, sensations similar to light electrical shocks occur. Although having these phantom sensations can be a bit troubling, they are rarely very painful. Phantom pain is much more severe in nature. Burning, stinging, heavy electrical jolts, throbbing, or severe aching feelings coming from part of the lost limb is considered phantom pain. Fortunately, true phantom pain, which is unbearable, is rare. Over time these feelings generally reduce in intensity and you will begin to accept the sensations as normal. Many amputees say that the light sensations never completely go away, which in some ways can be emotionally comforting, as it can feel like your leg and foot are still there.
Mirror therapy is a technique that has been used to reduce phantom pain and sensations. It involves using a long closet door mirror, such as you can buy at Wal-Mart. While sitting up in the bed or on the floor, the mirror is placed between the residual limb and your normal leg. The mirror section faces your normal leg. Slide the mirror up to your crotch and let the mirror back lay over on your residual limb. Adjust the mirror so you can see the reverse image of your normal leg instead of your residual limb. As you look at the image, imagine that your residual limb is whole and normal. Your brain sees a leg which is normal. Some patients will rub their residual limb, under the mirror, while focusing on the reverse image of the normal leg in the mirror. Many patients report less phantom pain and sensations using this technique several times a day for the first several months. These mirrors store easily under a bed or couch.
In section two we discussed the exercise plan that you received for pre and post op muscle strength. Lying on the floor or spending weeks in the bed makes your body very weak. The exercises that your therapist gave you can be done easily on a foam pad on the floor or in the bed. Be careful not to hit your residual limb on furniture while exercising. You will be amazed how much better you will feel as your exercise program becomes routine. Get your helper to go through the exercises with you.
In the early weeks after surgery, less clothing is better. Loose fitting short pajamas, underwear for men, and shorts are easy to manage. As you make progress, shorts, pull over shirts, a sock and a stable, tennis or walking type shoe make a good outfit for easy access to your wound. This same outfit is preferred for doctor visits and later for prosthetic visits, providing easy access to your limb and is easy and comfortable for you to manage. In cold weather, loose pants and layers are a good plan.
Deciding on when you can drive safely, as a new amputee, is based on a number of factors. Many of these factors are individual decisions. Are you off the narcotic drugs? Is your head clear? If your amputation is leg related, is it right leg or left? If you are a right leg amputee, you will need a gas pedal modification to your car. Is your car automatic? Can you get in and out of the car without hurting your surgical site? Can you deal with the discomfort of having your residual limb down for extended periods of time? Do you have a way to stabilize your residual limb while driving?
Where will you put your crutches in the car so you can access them easily?
Some of these questions can be answered before surgery by having car modifications completed, and practicing procedures that you know will be part of your life after surgery.
There are several brands of left foot accelerators. One made by Wheels Unlimited, can be found at http://www.wheelsunlimited.com.
For those who have difficulty turning your body, when you get in and out of your car seat, Dynamic Living, www.dynamic-living.com, makes a “Lazy Susan” type cushion for car seats.
Going back to work
We all look forward to returning to work, as it signals the beginning of getting our lives back in order. Employers in the US are required to make reasonable accommodations for handicapped workers under ADA regulations. Most employers are more than willing to help amputees become productive again. Meet with your employer before surgery, if possible, and go over your plan for recovery and returning to work.
In an earlier section the importance of finding a good prosthetics group was emphasized.
Getting a good fit with your socket, finding a foot that fits your life style and learning how to make small changes to your suspension system, and foot, to keep you comfortable are important keys to a successful transition to an artificial leg.
For the first year after surgery your residual limb will go through many changes in shape and size. As the day begins, many residual limbs are larger in size in the morning and reduce in size, as you walk, during the course of the day. As the limb gets smaller, less of the load is carried by the side of your socket and more of the load transfers to the distal end of your leg, causing higher pressure to be felt at the end.
For ERTL patients, the bone bridge design permits higher end loads, especially after the bridge has healed.
To make up for the loss of side load, as the limb shrinks, special multi ply socks can be placed over the residual limb to make up the lost size. This improves the comfort of the prosthetic leg as the balance between side and end load is restored. Limb shrinkage during the day becomes less of an issue as the limb stabilizes during the first year.
There are several systems on the market designed to deal with the problem of limb shrinkage. Sub atmospheric systems use a mechanical or electric vacuum pump to reduce the pressure inside the socket. The lower pressure helps the limb retain its size during the day. Other systems use a manually adjustable plate(s) to press against leg muscles to increase muscle volume in the socket.
Learning how your prosthetic limb is built, and understanding how to make a few basic adjustments will certainly improve your life. Be sure that you work with a prosthetic company that will teach you how to make simple adjustments at home. Adjusting the forward and backward tilt, Plantar and Dorsi flexion, of the foot is easy to learn and is useful in several situations. One of those situations is when using different types of shoes. Walking or tennis shoes have a different sized heel than dress shoes. A slight change in the foot adjustment, fore or aft, will compensate for the difference and help your gait be more natural. Your prosthetist can teach you how to make these simple adjustments, and show you which “T” handle, metric Allen wrenches you will need to buy.
During the healing process there will be many times when you will need to talk with your surgeon or prosthetics group. If your surgeon and prosthetist live within a reasonable driving distance, communicating with them will be relatively easy.
If you are several hundred miles apart, using modern electronic devices, like the iPad or iPhone, will make your life much easier. Much of this type of communication will be with your prosthetist, as they provide the bulk of the information you will need post surgery. Sending short videos, for example, pictures of your incision, or problem areas, such as rashes, problems with hardware, are easy and quick with electronic communications. Having an IPad close by is a great way to help you pass the time, visit with friends on Facebook, check email, and keep your friends informed of your progress.
Right from the beginning, you have a decision to make. It involves how YOU feel about your new (modified) limb. Your mental attitude plays a big part in how you will interact with the world, which includes family, friends, total strangers, and curious children. It is a natural human response for your visitors to walk into your hospital room or home, say hello, and immediately look at your missing part. You can hide it under a blanket, or leave it out for the world to see.
If you have suffered for years with some debilitating injury or illness and your surgery is giving you a second chance at life, you should be proud. Taking the time to show off your new limb is a terrific opportunity to educate your family and friends about amputees and help them to feel more comfortable in talking with you about it. You will find that your friends want to be helpful. They really don’t know what to say, or how to open a conversation about your surgery or new life. Make it easy for them by showing off your new leg or arm mods, telling where and how it hurts, and how you are dealing with the pain. Tell them how you are feeling emotionally and be as open as you can. The experience of being honest and open about your situation can be emotionally healing in itself. Not just for you, but also for your friends and family who are going through this process with you.
In earlier sections of this website, we talked about the power of positive thinking and developing a positive outlook towards your future. Life is all about making good decisions. Deciding right here and now that your life will get better and understanding that you are working through a process, is a good start.
Adults are generally taught not to stare. Children, on the other hand, are very curious and will zero right in on you and your missing parts. It’s not uncommon to hear, “What happened to your leg, mister?”
“What is that thing on your leg?”, or “Mommy, Mommy…..what’s wrong with that mans (or woman’s) leg?”. Sometimes they just stare, and it’s ok. They are just kids. Sometimes young kids want to touch your prosthesis. If their parents don’t mind, smile…... and let them. The interaction will be educational for the child and another small step in recovery for you.
Whether you like it or not, you are now an “Amputee Ambassador”, every time you are out in public. Take pride in showing the world that life is good as an amputee.