Question: For six years I have suffered with incredible pain that started in my right arm and now involves both arms. I have been diagnosed with reflex sympathetic dystrophy. I have gone through physical therapy, nerve blocks, cortisone shots, pain pills, beer blocks and a surgical procedure that removes ganglia tissue, called a sympathectomy. Nothing has helped. I am 41 years old, and all I want is one day without pain. Sometimes I cannot dress myself, hold a cup, turn a doorknob, open a car door, cook, clean, write or do anything. Are there any other procedures that may help? Who can help me?

- Denise W., Memphis, Tenn.

Answer: If all the ganglia tissue has not been removed, repeating the sympathectomy to remove more of this nerve tissue may help relieve the pain. If this fails, there are pain centers that may find a combination of medications that will relieve your pain and allow you to function.The cause of reflex sympathetic dystrophy, RSD, is not understood. Almost all cases start with a seemingly mild injury or surgery of an arm or leg. Then something goes awry, apparently disturbing the sympathetic nervous system's function of opening and closing blood vessels and sweat glands. Instead of normal healing, the patient experiences severe burning pain, swelling and cold skin.

Ganglia tissue removal often helps by eliminating nerve structures that tell the brain that pain is present. When that fails, medication may block the pain signals. In cases where nothing helps, the pain may become so unbearable that patients resort to suicide.

There are three stages of RSD:

- Stage I is characterized by burning pain, muscle spasms, swelling, inflammation, extreme sensitivity to slightest touch or even a breeze, sweating and small changes in bone.

When a Stage I patient is injected with a local anesthetic solution in the vicinity of the sym-pa-thetic ganglia (called a sympathetic block), pain relief occurs not only while the anesthetic is still active, but also may occur for some time afterwards. Occasionally patients will improve spontaneously at this early stage.

- Stage II has similar symptoms, but pain relief from a sympathetic block is shorter and more predictable. Rarely do Stage II patients get better on their own.

- Stage III may find the patient experiencing pain beyond the original injury site. The muscles and skin begin to atrophy and bones begin to contract.

If RSD is diagnosed and treated in its early stages, several studies show that 70 percent to 80 percent of patients can be cured. Conservative treatment includes physical therapy to try to move the limb, intermittent sympathetic blocks, various medications to relieve the pain and perhaps epidural anesthesia. The goal of such conservative therapy is to break the vicious cycle causing RSD and permit natural healing of the injury.

If conservative therapy does not work but the patient gets pain relief from a sympathetic block, then surgery to remove sympathetic tissue is considered. If a sympathetic block no longer provides pain relief, then surgery is not recommended.

As you noted, the surgery for RSD is called a sympathectomy. This procedure cuts a segment of a sympathetic nerve or removes sympathetic ganglia. The sympathetic ganglia, or cluster of nerve cells, lie in a vertical row on either side of the vertebrae and are named after the adjacent vertebra. For instance, T-2 ganglia is next to the second thoracic vertebra, or the T-2 vertebra.

Since the T-2 ganglia is believed responsible for pain in the arm and hand, most surgeons in the United States remove the ganglia tissue down to T-2 and sometimes to T-3. Studies show that 90 to 95 percent of patients treated this way gain function of their hand and arm and obtain pain relief.

"The procedure to perform this surgery is less painful than a procedure where you need to expose the ganglia to T-7. Advantages are also that Horner's syndrome (droopy eyelids) only occur 5 to 10 percent of the time and you don't affect heart rate, acid production or other sympathetic functions that are controlled by T-3 through T-7 ganglia," said Dr. David Roos, professor of surgery at the University of Colorado Medical Center. Roos has performed sympathectomy surgeries for over 25 years.

But another technique for performing a sympathectomy, called a transthoracic approach, does expose the ganglia down to T-7. A study by Dr. Cornelius Olcott reported on the treatment of three RSD patients who still had burning pain after a sympathectomy performed by other surgeons. Olcott, clinical professor of surgery and president of the medical staff at Stanford University Hospital, performed a re-sympathectomy on these three patients and removed ganglia tissue down to T-6 and T-7."

In our study, all patients treated by this approach had a satisfactory result," writes Olcott in the October 1991 issue of Vascular Surgery.

"Sympathectomies can be hazardous," said Olcott. "And in our evaluation there is no reason to perform an incomplete operation. All our patients do get Horner's but they are so happy to get rid of their pain, they don't care." Horner's syndrome can be surgically repaired, he added.

Roos responded, "The remarkable issue is that ganglia T-3 to T-7 do not have anything to do with the arm or hand. It is hard to explain why removal of these additional ganglia would relieve pain in the hand and arm. However, Olcott is part of a strong medical team, and his group may be on to something."

If a patient fails to get pain relief following a sympathectomy or is no longer a candidate for the procedure, he or she may need to seek out a pain center. Such centers can offer an arsenal of medications administered in a variety of methods.

Dr. Wen-Hsien Wu, director and chairman of the department of anesthesia at the New Jersey Medical School and director of the Pain Management Center there, sees primarily the 4 percent to 5 percent of RSD patients who have not had success with other measures. "In the past 10 to 15 years, only 1 to 2 percent of our patients failed to obtain pain relief," Wu said.

Wu can be reached at (201) 982-2080. Olcott can be reached at (415) 328-5480.

Distributed by United Feature Syndicate, Inc.

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Interrupting the pain

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Pain is essential to warn us of the threat of injury. But when reflex sympathetic dystrophy strikes, messages of buring pain are continually sent to the brain. One way to stop this pain is to interrupt the signal between pain receptors and the brain. This can be done with drugs, surgery, acupunture or other means.

One type of RSD surgery, a sympathectomy, removes clusters of nerve cells, or ganglia. In the case of RSD of the arm and hand, one strategy is transthoracic sympathectomy. The surgeon enters between the thrid and fourth ribs and removes ganglia from a point adjacent to the first thoracic vertebra (T-1) to a point adjacent to the seventh vertebra (T-7). If successful, this cuts the pain message system that normally would send information flowing from ganglia to spinal nverve to spinal cord to the brain.

Who's counting: Since 1989, 172 medical articles have been published on reflex sympathetic dystrophy.

Kevin Boyd - medical information service distributed by unite feature syndicate.

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