Linda here - I asked Dr. Robert Sampson, one of our long-time CMT International advisors and an orthopedic surgeon who has CMT, to write about union, nonunion and amputation to help us understand exactly what Dr. Anderson had done and how it could impact on our lives if needed. This is what he wrote:

UNION is what is supposed to happen when a fracture occurs. It is the final knitting of the bone. This same term defines the satisfactory healing of a man-made fracture such as a fusion or a reshaping of the bone (osteotomy). In both these cases a surgeon has cut the bone and when it heals in a satisfactory period of time it is united. If the time it takes to heal is too long then it is called a delayed union. If the bone heals on time, but is crooked, then the healing is called a malunion.

So, in general, when a fusion becomes a delayed union three to six months have gone by without a satisfactory healing. After six months it is usually termed a nonunion. Depending on the area of fusion (ankle 20%) or hindfoot (10%) or surgical technique (arthroscopic 99%) or (open 20%) different rates of nonunion may occur.

A nonunion is treated in a variety of ways.
1. A surface coil of electromagnetic fields. This is worn over the cast. There is no perception at all of feeling electricity. These coils are 80% effective at bringing about a succesful union.
2. A surface coil of ultrasonic field. Results about the same.
3. An implanted electromagnetic field. This is a small battery - the generator and coil to that is implanted right into the bone. Results: 80% effective.
4. Repeat the surgery often using a bone graft. The graft brings fresh, living bone cells into the healing area. The graft is usually harvested from the pelvic bone. Often, when redoing the fusion site, an electrical device is used in conjunction with the surgery. Combined results about 90%.
Notice that once a nonunion has occurred there is always less than 100% chance of getting a good union.

Factors creating a nonunion are: luck or no luck, general nutrition, ability to rest the fused joint, surgical technique especially getting a nice flat surface area and compressing it with screws or other hardware. Tobacco is a no-no as its use increases the rate of nonunion by 500%! Prior infection decreases successful union. Neuropathies such as diabetes or CMT also increase the risk of nonunion. My experience has been that diabetic neuropathy is far more likely to cause nonunion than is the neuropathy of CMT.

Signs of a nonunion are continued pain, swelling, redness and a feeling of heat at the surgical site. Confirmation is by regular and sometimes by special X-ray studies.
Amputation is what orthopaedic surgeons call the ultimate operation. It is the salvage for almost all orthopaedic procedures. It is met with great psychologic resistance by most people. Interestingly enough, once completed it is one of the most successful operations and one of the most appreciated. Probably its acceptance is because all else has failed and the patient is miserable. A world famous orthopaedic surgeon, who had done hundreds of amputations, suffered from a childhood infection and deformity, had his leg amputated at age 70 years. He cried for days, and when I asked him if the pain was causing him to cry he said, "No, it is the lack of pain. I wish I had had this done 50 years ago." His reaction is typical.

Amputations are done when all else fails and repeated surgeries would be fruitless or perhaps wasteful of a person's time and financial resources.

Typically, a good fusion of the foot or leg takes four months to heal and another two months to be useful. Amputations of the foot or leg usually heal in about six weeks and, in the younger person, the patient can even be fitted for the first leg prosthesis in the operating room.

Amputations can take place just about any place on the leg, but certain ones are more common and predictible.

Toes: These usually heal rapidly and, believe it or not, their loss does not usually affect how one walks.

Middle of the foot (transmetatarsal): Good for infections and ulcers under the ball of the foot. No prosthesis required. Sometimes a toe filler of foam is used, but most people just wear a regular shoe.

Just in front of the ankle, leaving the heel: This is a good amputation in the younger person, but can be tough for the limb maker to fit. It is nice because you can still get up at night and go to the bathroom without looking for your leg.

Syme's amputation: This takes the heel and the ankle bone (talus) out and leaves the end of the shin bone to walk on. One can get around some at night without a leg on but is not capable of long walks without a prosthesis. When successful it is a great amputation. It is a hard one for the prosthetist (leg maker) to fit and sometimes the heel pad migrates and must be realigned.

Below Knee: This is by far the most common major amputation of the lower limb. It tends to heal well and be quite useful, but it leaves a short leg, one that cannot be used without an artificial limb. There are a variety of sockets into which one can fit the leg stump. The type of socket depends on the intended use of the limb, the blood supply, the degree of scarring of the wound and the quality of the re-maining skin. The leg itself can be made to be quite cosmetic and one can even select from a limited number of mechanical ankle selections and springiness of the foot. I have patients with this type of operation working in the logging industry, driving trucks and performing many different types of labor and sports activities.

Above the knee amputation is disabling. It takes a lot more energy to walk with this type of prosthesis and the knee joints tend to be heavy, mechanical and artificial.
Phantom pain is one of the greatest fears of anyone about to undergo an amputation. Fortunately, it is quite rare in an elective surgery, where the operation is preplanned, the patient is counselled and the surgical wounds clean and neat. Phantom pain is more common in the traumatic amputation where the wound was made by a tree or auto bumper and the nerve was crushed off rather than cut off. Phantom pain is also more common when the patient has put off the operation for too long and their pain has been ingrained on their memory. Phantom pain is difficult to treat and requires the services of a pain treatment center.