Helen's Story
The following story tells the experience of one patient who is receiving intrathecal drug delivery for the treatment of severe pain. Medtronic invited this patient to share her story candidly. As you read it, please bear in mind that the experiences are specific to this particular patient. Results vary; not every response is the same. Talk with your doctor to see if you may benefit from intrathecal drug delivery.
It was New Year's Day, 1975, and most of the country was sleeping in, watching football, or relaxing. Helen, then 23, was skiing in the Pacific Northwest and falling off a chair lift-smack into a mountain.
"I remember hearing my sister-in-law shouting, 'Helennnnnnnnnnnnnn!'" she says.
Helen fell the equivalent of four stories down and broke her arm. Her arm was obviously distorted, X-rayed, and set. A quick glance at Helen's back assured the doctor that it appeared to be fine. Helen suspected otherwise.
"I cannot describe the horrible pain in my back," says Helen. "I did hear a snap, but my back was not X-rayed at all. The emergency room doctor didn't see a need for it. He just patted me on the shoulder and said I'd had a bad fall but would be fine in a few days."
Helen was released with a 10-day supply of pain medication and advised to take acetaminophen (Tylenol) if needed after that.
While her arm eventually healed, her back pain remained. Helen's doctors attributed the pain to the fall from the chair lift and dismissed her complaints. Unfortunately, over time her spine had fused and twisted out of place and pressed on nerves in her legs.
By late 1989, when Helen's family was living in Utah, an orthopedic surgeon was recommended to her. For the first time in her life, Helen's back was X-rayed. The films showed that her back had been broken in three places in the fall. Another test showed that several disks were ruptured and that the nerves emanating from the spinal cord no longer had a cushion. They were simply trapped between raw bones. "You can only imagine the intensity of the pain," she says. Surgery was imperative.
The doctor performed a disk decompression and fusion (relieving pressure on the nerves and aligning the spine)-the first of six back surgeries between 1990 and 1993. Helen says her back was mended, but she still had pain. Her doctor recommended several therapies for the pain during those years, including epidural steroid injections, massage therapy, trigger-point injections, lumbar sympathetic blocks, a body cast, and chiropractic treatments, just to name a few. All the therapies failed to relieve her pain. During this time, Helen and her husband declared bankruptcy. "We were left with horrific medical bills," she says.
Helen's physical therapist one day recommended that she see a pain management physician. (At that time, Helen was living in Louisiana.) Her orthopedic surgeon recommended Paul Hubbell, MD. After examining Helen and reviewing her medical records, Dr. Hubbell recommended a trial with neurostimulation. Unfortunately, that therapy did not work for her. Dr. Hubbell then told her he had another therapy in mind to try-intrathecal drug delivery.
Intrathecal drug delivery
With intrathecal drug delivery, pain medication is administered directly to the area surrounding the spinal cord (called the intrathecal space) by a pump and catheter that are surgically placed. Because medication is delivered where pain signals travel, smaller doses may be very effective. This helps minimize side effects.
"I think my expectations about it were realistic," says Helen. "The doctor didn't say, 'You'll never have pain again, ' but he did give me hope. He showed me the system and explained it again and again. He treated me like a real person."
In late July of 1993, Helen entered the hospital for an outpatient screening test for intrathecal drug delivery. After numbing an area of Helen's lower back, Dr. Hubbell placed a small catheter in her spine to deliver the pain medication.
"My husband and my oldest son-who was then 15-were standing around with the doctor watching me. They didn't say anything; they didn't want to prompt me," says Helen. "After about fifteen minutes, I thought, I do feel less pain. For so many years people made me feel crazy-like I was imaging pain, but I wasn't trying to talk myself into feeling better because it's what I wanted. I really did have less pain."
On July 29, 1993, Helen returned to the operating room for the intrathecal drug delivery system implant. While she was under general anesthesia, a small, flexible catheter was placed in her lower spine, tunneled under the skin, and connected to the round pump, which was positioned in her abdomen. The pump stores and releases small doses of pain medication which are delivered to the fluid around the spinal cord. The surgery went well, and she went home the day after the implant.
"Day-to-day life is really good for me now-great, in fact.," reports Helen. "I still have a pain score of four to five, but I know I am in control. The pump lets me control it. I have been able to do what I do now-that is, go out in my community and build support groups and a national organization to which I volunteer much time." [Helen is the Founder and President of the National Chronic Pain Society, Inc.]
Helen has not experienced any side effects or complications from intrathecal drug delivery, but they can occur. For example, because the pump and catheter are surgically placed, surgical complications, such as infections, are possible. The catheter could become dislodged or blocked, causing a disruption in pain relief. In rare cases, the pump could stop working, with the same result. Drug-related side effects also can occur. They may include sleepiness, constipation, upset stomach, and vomiting.
"I would encourage others to learn everything possible about their injury, disease, or illness," advises Helen, who is the founder of the National Chronic Pain Society. "Even though pain may be unavoidable, suffering can be optional. Don't think you have to go home and suffer, because there's a lot of hope out there. The pump has worked great for me for eight years, and I am so grateful. So grateful."