If you have this rare disease, is vision-saving eye surgery worth the risk?
Complex Regional Pain Syndrome (CRPS) aka Reflex Sympathetic Dystrophy (RSD) is called the suicide disease, because of the relentless burning and stabbing pain sufferers experience. Once affected, CRPS often spreads to a newly injured area. This makes any surgical procedure a risky venture.
What is CRPS/RSD?
CRPS/RSD is a rare, disabling nerve disease that affects 200,000 people in the United States. It was identified during the Civil War, but reports of the condition date back to 16th century France. CRPS is often compared to phantom limb pain and usually occurs after an injury to a limb or following surgery on a limb.
My husband Daniel got this disease following an injury to his left middle finger in March 1996, while building a palace for the Sultan of Brunei in Las Vegas. Daniel’s finger got crushed between a forklift and a concrete bucket. Since it was a worker’s compensation situation, he was not sent to the best doctors. Over a year later, when he went to settle his case, his finger was still oozing puss and was extremely painful. Finally, in May 1997, he was sent to Dr. William Zamboni (now deceased) – a hand specialist – who diagnosed him within the first minute as having RSD. (The name was later changed to CRPS.) Dr. Zamboni literally said, “You’re f*cked. They should have amputated your finger. Now it’s too late.”
By this time, the pain had spread up his finger, through his hand, and up his arm to the shoulder girdle. Worker’s compensation sent him for pain management therapy at the University of Washington in Seattle for a month in the Spring of 1998, where aggressive physical therapy led to a back injury, and the CRPS spread to his entire left side, requiring him to use a crutch to keep from falling when his leg sporadically went out. He was seen at UCLA in October 1998, and in June 1999 we went to Cleveland Clinic – at our own expense – to be seen by Dr. Michael Stanton-Hicks (now retired), the foremost expert at the time on CRPS.
My husband tried everything for the pain: multiple drugs, various injections, nerve blocks, and even an implanted spinal stimulator. Nothing helped. The drugs made him loopy. Opiates made the rest of his body numb, but highlighted the CRPS pain; they also made him nauseous. Ultimately, he gave up on all meds and treatment, taking only Advil for pain. At age 47, he was forced to take a disability retirement. For the next 24 years, he had no treatment for the CRPS.
Fast forward to the cataract diagnosis
In 2021, my husband was informed that he was ripe for cataract surgery. Terrified that his burning/stabbing pain would spread to his eyes, we needed needed more information. We searched online for peer-reviewed studies about CRPS and cataract surgery; there was nothing. We decided his best option was to be seen again at Cleveland Clinic. However, to get there he had to get three local doctors to recommend it. By that time, we had contacted Cleveland Clinic and made arrangements to see a doctor at our own expense. We changed his insurance from an HMO to a PPO. The new insurance finally approved the visit to Cleveland.
On April 1, 2022, my husband saw Dr. Jijun Xu in Cleveland. He was extremely helpful and recommended a specific drug protocol before surgery: work up to 800mg of Gabapentin three times daily, 1000 units of Vitamin C daily, and IV Ketamine during the surgery. In addition, Dr. Xu referred my husband to a local doctor in Las Vegas who had done his residency at Cleveland Clinic – Dr. Mark Chmiela. Daniel immediately went to see Dr. Chmiela, who got him started on the Gabapentin.
The next step was finding a doctor to do the surgery. The first doctor he saw refused, but helped us make arrangements with our insurance to have surgery at UCLA. We went to a second local surgeon who also refused, but recommended another surgeon in Las Vegas: Dr. Kent Wellish, who agreed to do the surgery with Ketamine.
Cataract surgery
Daniel had surgery for his right eye on September 6, 2022, and surgery for his left eye on September 13. Both procedures went smoothly. My husband elected to get the fanciest lenses, which cost over $6,000 a piece out of pocket. A world of vibrant color emerged, but there was still some remaining cloudiness. On January, he had secondary cataract surgery to smooth out the membrane behind the right lens with a laser, and on February 24, he had the procedure done on his left eye. This “surgery” took a couple minutes and was done in the office with only eye-numbing drops.
Brilliant ending
There were no problems with any of the surgeries or procedures, aside from some minimal pain the night of each surgery. Fortunately, it was not CRPS pain. My husband who wore eyeglasses since he was a child, now only needs reading glasses. He has a separate retina problem in his right eye that he will need to monitor, and he still has a problem with “floaters,” but after age 70, one cannot expect visual perfection. In the meantime, he is ready to start weaning off the Gabapentin. The tedious process of finding a doctor willing to do the surgery and the stress of potentially having lifelong eye pain were worth it in the end.
If you have CRPS or know someone who does, cataract surgery is possible with the right surgeon and the right medications.
For more information, contact https://rsds.org.
If you have this horrible disease, our heart goes out to you.
(C) Joyce O’Day 2023. All Rights Reserved.
AI was NOT used in the creation of this article.
Joyce O’Day 