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September 22, 2005

Complications, Other

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Question from Herrin, Illinois, USA:

My 45 year old husband’s sugars are not under good control and he is being evaluated for an insulin pump, which he will likely get within a few weeks. But, the most pressing problem right now is an ulcer on the bottom of his big toe that he has had for the last two years. In the past, it has been the size of a dime and as deep as the bone, but right now, it is almost healed; it is the size of a pin head and almost closed. Treatments have included professional wound care, Regranex, special shoes, bed rest, and even six weeks of I.V. antibiotics received through a portacatheter (totally implanted under the skin in his chest and accessed with a needle) although this port was removed recently due to a blood infection (gram negative rods) that nearly killed him.

As recently as two months ago, MRIs have shown fluid in the first metatarsal phalangeal joint of this big toe. We were told this is probably septic arthritis, and I.V. antibiotics are the proper treatment. However, he no longer receives antibiotics at all, not even oral, due to the blood infection received from the port and its subsequent removal. We were told at St. Louis University Hospital, where he was flown by helicopter, that most likely his saline flush was contaminated, causing the port to become infected.

But, now, even though the ulcer is almost healed (pin head sized) his entire toe is still very swollen, very deformed, very red and somewhat warm. He has no pain due to neuropathy. It is twice the size of his other big toe. The rest of his foot appears normal.

There is no evidence of osteomyelitis, or so we were told. His doctors seem baffled as to why the toe still appears so traumatized even though the ulcer is almost healed. One doctor has told us perhaps it is still very red “due to all the trauma it has received.” This does not seem a good explanation to me; perhaps it will always be bigger than normal, but it seems to me that redness, swelling, and warmth indicate a need for more antibiotics. He has had many, many antibiotics in the past, including oral augmentin, I.V. vancomycin, and oral and I.V. Cipro.

My husband will have a test in two weeks to draw fluid out of the joint, but we really had to push for this test; the doctors seem to just want to let this be and see what happens, but after watching him almost die from all these complications, I am not content to “let it be.” We have excellent health insurance, primary and secondary; his podiatrist has told us it is the “best insurance in town,” so we don’t understand delays, unanswered questions, and lackadaisical treatment options. Our insurance did approve the use of Dermagraphs, but the doctors now see no need for it since his healing is almost complete.

Is it possible that the appearance of the toe is now its normal appearance and that the trauma has caused it to look like this? Or, is there something else involved here? If there is septic arthritis, why did the I.V. antibiotics not treat it properly? He did receive I.V. vancomycin twice a day for approximately six weeks before becoming septic. Is there something else that should or could be done? Is it time to receive second and third opinions? We live in a somewhat rural area of Southern Illinois, about two and a half hours south of St. Louis, and specialists are hard to come by down here. Do you have any suggestions?

Answer:

From: DTeam Staff

It sounds like what you need from his doctors is a good dose of communication. Obviously, this is a serious and difficult problem to treat. You have both been through a lot of agony with this. On the other hand, the doctors treating him have helped him get his ulcer healed back from a very difficult situation without loss of limb. It is possible that the toe has received repeated trauma and will not return to usual form. The fluid may or may not be infected. Placing a needle into the fluid has some risk, hence the apparent hesitations by the physicians caring for him. By placing the needle, you may actually risk placing bacteria into the fluid and seeding an infection, if one is not already there.

What the doctors need to do for you and your husband is just vocalize what they are thinking and cover all the alternatives. Sometimes, the best way to feel better is to know what they are thinking so that you can follow along with the though process that goes into your husband’s management. You are always entitled to a second opinion. That is important and it is your right. I encourage everyone to be their own advocates when it comes to healthcare. However, no one will know him as well as the doctors that have seen him over the past two years. I would try to communicate with the doctor’s office and ask for this kind of discussion as soon as you can so you both can feel better about this process.

JTL