Chronic Pain: One Woman's Nightmare and Endless Search for Relief
Susan Haines, 48, is nothing but full of life: a great cook, a ready laugh, at home in a room crowded with people, fun-loving, willing to take off for the weekend at the drop of a hat.
She is surrounded by family. She and her husband, Steve, have two teen-agers, a boy and a girl. She has three siblings that she is close to. She has a mom and dad with just as much zest for life that she has; both of them, like her, have a wicked sense of humor.
But neither Susan nor her extended family and many friends have found anything funny about the past year when chronic pain suddenly entered her life and took it over. At a recent family gathering, she is not the same laughing and joking Susan that everybody knows and enjoys.
Instead, she is a portrait of frayed nerve endings.
She hasn't even cooked for the gathering, which she always does. "I couldn't," she said. "I was in so much pain, I couldn't stand up." And, instead of being her usual life-of-the-party self, all she can do is talk about her "nightmare" of chronic pain and an endless search for relief.
Susan Haines' story says much about how chronic pain can arrive suddenly and turn the happiest of lives into relentless agony. It is also the story of how our medical system can repeatedly fail to find the cause of chronic pain and how treatment can vary from doctor to doctor.
For some 20 years, Susan has had chronic hip pain kept under control with visits to a chiropractor every few weeks. The level of pain has been something she can and has lived with. But in March, 2007, almost exactly a year ago, everything suddenly changes.
She is driving to Manchester Airport in New Hampshire when a new kind of intense pain comes seemingly out of nowhere. It hits her right hip/buttock area, goes down her leg, and travels all the way down to her toes. Her knee tightens. Her foot goes numb. She has never felt such searing pain. Barely able to move her right leg, she drives on cruise control whenever she can.
Since then, Susan has not been able to drive or sit for more than 45 minutes without taking a break to stand and walk around. She can't stand for any length of time. She says that she has been "living on ibuprofen 24 hours a day, 7 days a week, muscle relaxers, stronger pain meds -- all dulling my pain very little, along with ice packs and heating pads."
After the pain came, Susan turned first to her chiropractor. She went to him for three months but nothing he did, including deep-tissue massages, did anything to reduce the pain. In June, she saw her primary care doctor who told her she had "piriformus syndrome" and "bursitus." He prescribed physical therapy.
During July and August, she went for physical therapy at Ramsey Rehab in Leominster, Mass. There she was treated with heat, deep massage, E-stim, and cold compresses. The pain got no better; at times it got worse. She says she was "barely able to walk in sometimes" and limped out after treatment. She felt like she was getting nowhere.
She began to think that she might have a tumor in the right buttock area. At her request, her primary care doctor ordered an MRI of her hips. An orthopedic surgeon pronounced the MRI as "normal." She stopped the physical therapy that did not touch the pain.
She resumed going twice a week to her chiropractor. Again, there was no improvement. The chiropractor referred her to a Worcester physician for a second opinion and a "possible quick-fix shot."
This physician gave her an injection which she believes was lydocaine with a little steroid. After examining her, he told her the problem might be with her lumbar at L3. The next day, her primary care doctor ordered an MRI of her lumbar area. It was done on November 7 and showed multiple bulging. "I couldn't believe no one had suggested this before now, eight months later," Susan said.
She contacted a neurosurgeon at Memorial Hospital in Worcester and made an appointment for December 20. This was a long time for her to wait while being in constant pain. Trying to give her some relief, the second-opinion physician who had given her the "quick-fix shot" performed acupuncture on her. It did not help.
"I had a long time to wait," Susan said. "I was now in constant, excruciating pain. I had gone from a very active 48-year-old to someone who could barely do anything."
By the time December 20 came and Susan finally got in to see the neurosurgeon, she was desperate. She had done everything she thought possible and was willing to latch onto almost anything. When the doctor said, "I think I can help you," she was elated. When he told her that ME L3/L4 had herniated and that surgery might work, she agreed immediately.
The surgery, a lumbar partial dissectomy of L3/L4, took place at Memorial Hospital in Worcester on January 8, 2008. Before the surgery, Susan's last question for the neurosurgeon was, "When will I be able to drive?." He replied, "Three to four days."
But when she woke up in the recovery room, she was in so much pain that the nurses "couldn't get pillows under my knees or more pain meds in me fast enough." Vicodin pills and a muscle relaxer did not help. The next day, ultram pills were added and she was discharged with prescriptions for the three medicines.
She was discharged without seeing her surgeon or her nurse practitioner. "The nurse practitioner wrote up my discharge papers, prescriptions, and instructions and I was out of there," Susan said.
One week after surgery, the pain was unceasing and she could barely move. The surgeon prescribed new pain drugs -- percocet, medrol, and neurontin -- and they brought the pain under some control. But far from being able to move around and drive, she was basically immobile.
At one point, being bedridden and needing constant help, Susan stayed with her parents. "For days she would lie in bed," her mother said, "and call us on her cellphone and ask us for food, water, medicines and anything else she needed. She was practically helpless."
Her surgeon ordered another MRI and Susan went in for it that very day. In his office four days later, the surgeon told her that she had "re-herniated, same area" and a second surgery might be needed. They agreed that a second opinion -- another second opinion -- was appropriate under the circumstances.
By now, Susan's distress was so great that rational thought was difficult. Even though the first surgery had failed completely, she was willing to consider another one. "I just wanted him to go back in and clean it up again," she said. "I was still in so much pain and unable to do anything."
While waiting for an appointment for her second second opinion, Susan called New England Baptist Hospital. She got an appointment two days later with a female physician at the Spine Center in their Chestnut Hill office. Susan saw her on February 8, 2008, exactly one month after her surgery.
Yes, Susan had indeed re-herniated, the Spine Center physician said, and the nerve didn't look right. But she said that she did not think that surgery was necessary. Instead, she said that Susan should increase the neurontin from three to four pills a day and start moving more. She urged her to start with short walks and go from there.
Susan followed this advice and found herself living a little one day and spending the next day in bed. After two weeks of this, and six weeks after her surgery, Susan was able to drive short distances but was still in almost constant pain.
On February 25, unable to wait for an appointment on March 14th, Susan went back to see the New England Baptist Spine Center physician. She told the physician that "something is not right; I'm still getting no relief." Since January 15, she had taken some 150 percocets and about the same number of neurontin pills.
The Spine Center physician suggested physical therapy. Susan's reaction was basically "been there, done that." She asked if she could have a nerve block injection for pain relief. Doctor and patient then proceeded to, well, bargain.
The doctor said she would order the nerve block injection if Susan would agree to physical therapy. When Susan told the doctor how horrible her physical therapy had been, she replied, "Well, you can crawl back in." Finally, Susan agreed to physical therapy just to get the nerve block injection, which she received on March 5, 2008 at New England Baptist Hospital in Boston.
Since the injection, Susan says that instead of a butcher knife in her buttocks, she now has a butter knife. The pain remains, just not as sharp as before the injection. She has no idea how long the effects of the injection will last. She asked the New England Baptist radiologist, but got a non-reply: "You'll be good to go."
Susan has not taken a percocet since March 3rd. She is no longer willing to live on ibuprofen. She has no intention of going to physical therapy. The original surgeon and the second-opinion surgeon are both history. For the time being at least, she says that she "can at least do small things around the house and live my life a little."
Meanwhile, Susan knows exactly what she needs. "I need an alternative treatment!" she says.
Anybody have any ideas?
So long and keep moving.
Update March 24 :
THE NERVE BLOCK INJECTION SOON WORE OFF, SO BACK ON PERCOCET SUSAN WENT, AT LEAST ONCE A DAY (USUALLY AT THE END OF THE DAY AFTER SHE'S "LIVED MY LIFE A LITTLE"). ON TELEVISION, SHE LEARNED ABOUT THE “DRX9000” DECOMPRESSION TREATMENT AND IMMEDIATELY CALLED. SHE WENT TO THE NORTH SHORE SPINE & REHAB IN WOBURN, MA AND WAS TOLD SHE WAS NOT A CANDIDATE (ONLY 20% OF PEOPLE ARE, THE DOCTOR SAID) BECAUSE OF A DISCECTOMY AND A LAMINECTOMY IN JANUARY.
ALTHOUGH NOT A CANDIDATE FOR THE DRX9000 TREATMENT, SHE WAS ELIGIBLE FOR “AVICENNA CLASS IV LASER THERAPY.” SHE BEGAN TREATMENT THREE TIMES A WEEK FOR FOUR WEEKS. SHE HOPES THE TREATMENT WILL DECREASE INFLAMMATION AROUND THE NERVE ROOT AND SURROUNDING AREA AND ENABLE HER TO STOP PAIN MEDICATIONS ONCE AND FOR ALL.
SHE HAS ALSO MADE AN APPOINTMENT AT NEW ENGLAND BAPTIST HOSPITAL IN BOSTON WITH A NEW NEUROSURGEON. SUSAN BELIEVES THAT IF SHE HAD HAD AN MRI ON HER LUMBAR IN MARCH 2007 AND GONE TO A NEUROSURGEON AT NEW ENGLAND BAPTIST AT THAT TIME, SHE WOULD NEVER HAVE HAD THIS PAST YEAR OF HELL. SUSAN HOPES THAT LASER THERAPY AND HER CURRENT TREATMENT AT NEW ENGLAND BAPTIST WILL FINALLY GIVE HER BACK HER LIFE "100%."
E-Books by George Pollock
"State Kid: Hero of Literacy" is fiction based on his real-life experiences growing up in foster homes; "Last Laughs," is the true story of how five foster kids (he and four younger siblings) found their way in life and each other. "Killers: Surprises in a Maximum Security Prison," is the story of the author being locked up for 23 hours with killers in a maximum security prison; "I, Cadaver" is about the author's postmortem adventures and mischief in the anatomy lab at UMass Medical School. “A Beautiful Story” demonstrates the art and process of creative writing as a 16-year-old boy goes all out to write a story good enough to get him into an exclusive college -- on full scholarship; and "A Long, Happy, Healthy Life," which is about how to live the title every single day.
She is surrounded by family. She and her husband, Steve, have two teen-agers, a boy and a girl. She has three siblings that she is close to. She has a mom and dad with just as much zest for life that she has; both of them, like her, have a wicked sense of humor.But neither Susan nor her extended family and many friends have found anything funny about the past year when chronic pain suddenly entered her life and took it over. At a recent family gathering, she is not the same laughing and joking Susan that everybody knows and enjoys.
Instead, she is a portrait of frayed nerve endings.
She hasn't even cooked for the gathering, which she always does. "I couldn't," she said. "I was in so much pain, I couldn't stand up." And, instead of being her usual life-of-the-party self, all she can do is talk about her "nightmare" of chronic pain and an endless search for relief.
Susan Haines' story says much about how chronic pain can arrive suddenly and turn the happiest of lives into relentless agony. It is also the story of how our medical system can repeatedly fail to find the cause of chronic pain and how treatment can vary from doctor to doctor.
For some 20 years, Susan has had chronic hip pain kept under control with visits to a chiropractor every few weeks. The level of pain has been something she can and has lived with. But in March, 2007, almost exactly a year ago, everything suddenly changes.
She is driving to Manchester Airport in New Hampshire when a new kind of intense pain comes seemingly out of nowhere. It hits her right hip/buttock area, goes down her leg, and travels all the way down to her toes. Her knee tightens. Her foot goes numb. She has never felt such searing pain. Barely able to move her right leg, she drives on cruise control whenever she can.
Since then, Susan has not been able to drive or sit for more than 45 minutes without taking a break to stand and walk around. She can't stand for any length of time. She says that she has been "living on ibuprofen 24 hours a day, 7 days a week, muscle relaxers, stronger pain meds -- all dulling my pain very little, along with ice packs and heating pads."
After the pain came, Susan turned first to her chiropractor. She went to him for three months but nothing he did, including deep-tissue massages, did anything to reduce the pain. In June, she saw her primary care doctor who told her she had "piriformus syndrome" and "bursitus." He prescribed physical therapy.
During July and August, she went for physical therapy at Ramsey Rehab in Leominster, Mass. There she was treated with heat, deep massage, E-stim, and cold compresses. The pain got no better; at times it got worse. She says she was "barely able to walk in sometimes" and limped out after treatment. She felt like she was getting nowhere.
She began to think that she might have a tumor in the right buttock area. At her request, her primary care doctor ordered an MRI of her hips. An orthopedic surgeon pronounced the MRI as "normal." She stopped the physical therapy that did not touch the pain.
She resumed going twice a week to her chiropractor. Again, there was no improvement. The chiropractor referred her to a Worcester physician for a second opinion and a "possible quick-fix shot."
This physician gave her an injection which she believes was lydocaine with a little steroid. After examining her, he told her the problem might be with her lumbar at L3. The next day, her primary care doctor ordered an MRI of her lumbar area. It was done on November 7 and showed multiple bulging. "I couldn't believe no one had suggested this before now, eight months later," Susan said.
She contacted a neurosurgeon at Memorial Hospital in Worcester and made an appointment for December 20. This was a long time for her to wait while being in constant pain. Trying to give her some relief, the second-opinion physician who had given her the "quick-fix shot" performed acupuncture on her. It did not help.
"I had a long time to wait," Susan said. "I was now in constant, excruciating pain. I had gone from a very active 48-year-old to someone who could barely do anything."
By the time December 20 came and Susan finally got in to see the neurosurgeon, she was desperate. She had done everything she thought possible and was willing to latch onto almost anything. When the doctor said, "I think I can help you," she was elated. When he told her that ME L3/L4 had herniated and that surgery might work, she agreed immediately.
The surgery, a lumbar partial dissectomy of L3/L4, took place at Memorial Hospital in Worcester on January 8, 2008. Before the surgery, Susan's last question for the neurosurgeon was, "When will I be able to drive?." He replied, "Three to four days."
But when she woke up in the recovery room, she was in so much pain that the nurses "couldn't get pillows under my knees or more pain meds in me fast enough." Vicodin pills and a muscle relaxer did not help. The next day, ultram pills were added and she was discharged with prescriptions for the three medicines.
She was discharged without seeing her surgeon or her nurse practitioner. "The nurse practitioner wrote up my discharge papers, prescriptions, and instructions and I was out of there," Susan said.
One week after surgery, the pain was unceasing and she could barely move. The surgeon prescribed new pain drugs -- percocet, medrol, and neurontin -- and they brought the pain under some control. But far from being able to move around and drive, she was basically immobile.
At one point, being bedridden and needing constant help, Susan stayed with her parents. "For days she would lie in bed," her mother said, "and call us on her cellphone and ask us for food, water, medicines and anything else she needed. She was practically helpless."
Her surgeon ordered another MRI and Susan went in for it that very day. In his office four days later, the surgeon told her that she had "re-herniated, same area" and a second surgery might be needed. They agreed that a second opinion -- another second opinion -- was appropriate under the circumstances.
By now, Susan's distress was so great that rational thought was difficult. Even though the first surgery had failed completely, she was willing to consider another one. "I just wanted him to go back in and clean it up again," she said. "I was still in so much pain and unable to do anything."
While waiting for an appointment for her second second opinion, Susan called New England Baptist Hospital. She got an appointment two days later with a female physician at the Spine Center in their Chestnut Hill office. Susan saw her on February 8, 2008, exactly one month after her surgery.
Yes, Susan had indeed re-herniated, the Spine Center physician said, and the nerve didn't look right. But she said that she did not think that surgery was necessary. Instead, she said that Susan should increase the neurontin from three to four pills a day and start moving more. She urged her to start with short walks and go from there.
Susan followed this advice and found herself living a little one day and spending the next day in bed. After two weeks of this, and six weeks after her surgery, Susan was able to drive short distances but was still in almost constant pain.
On February 25, unable to wait for an appointment on March 14th, Susan went back to see the New England Baptist Spine Center physician. She told the physician that "something is not right; I'm still getting no relief." Since January 15, she had taken some 150 percocets and about the same number of neurontin pills.
The Spine Center physician suggested physical therapy. Susan's reaction was basically "been there, done that." She asked if she could have a nerve block injection for pain relief. Doctor and patient then proceeded to, well, bargain.
The doctor said she would order the nerve block injection if Susan would agree to physical therapy. When Susan told the doctor how horrible her physical therapy had been, she replied, "Well, you can crawl back in." Finally, Susan agreed to physical therapy just to get the nerve block injection, which she received on March 5, 2008 at New England Baptist Hospital in Boston.
Since the injection, Susan says that instead of a butcher knife in her buttocks, she now has a butter knife. The pain remains, just not as sharp as before the injection. She has no idea how long the effects of the injection will last. She asked the New England Baptist radiologist, but got a non-reply: "You'll be good to go."
Susan has not taken a percocet since March 3rd. She is no longer willing to live on ibuprofen. She has no intention of going to physical therapy. The original surgeon and the second-opinion surgeon are both history. For the time being at least, she says that she "can at least do small things around the house and live my life a little."
Meanwhile, Susan knows exactly what she needs. "I need an alternative treatment!" she says.
Anybody have any ideas?
So long and keep moving.
Update March 24 :
THE NERVE BLOCK INJECTION SOON WORE OFF, SO BACK ON PERCOCET SUSAN WENT, AT LEAST ONCE A DAY (USUALLY AT THE END OF THE DAY AFTER SHE'S "LIVED MY LIFE A LITTLE"). ON TELEVISION, SHE LEARNED ABOUT THE “DRX9000” DECOMPRESSION TREATMENT AND IMMEDIATELY CALLED. SHE WENT TO THE NORTH SHORE SPINE & REHAB IN WOBURN, MA AND WAS TOLD SHE WAS NOT A CANDIDATE (ONLY 20% OF PEOPLE ARE, THE DOCTOR SAID) BECAUSE OF A DISCECTOMY AND A LAMINECTOMY IN JANUARY.
ALTHOUGH NOT A CANDIDATE FOR THE DRX9000 TREATMENT, SHE WAS ELIGIBLE FOR “AVICENNA CLASS IV LASER THERAPY.” SHE BEGAN TREATMENT THREE TIMES A WEEK FOR FOUR WEEKS. SHE HOPES THE TREATMENT WILL DECREASE INFLAMMATION AROUND THE NERVE ROOT AND SURROUNDING AREA AND ENABLE HER TO STOP PAIN MEDICATIONS ONCE AND FOR ALL.
SHE HAS ALSO MADE AN APPOINTMENT AT NEW ENGLAND BAPTIST HOSPITAL IN BOSTON WITH A NEW NEUROSURGEON. SUSAN BELIEVES THAT IF SHE HAD HAD AN MRI ON HER LUMBAR IN MARCH 2007 AND GONE TO A NEUROSURGEON AT NEW ENGLAND BAPTIST AT THAT TIME, SHE WOULD NEVER HAVE HAD THIS PAST YEAR OF HELL. SUSAN HOPES THAT LASER THERAPY AND HER CURRENT TREATMENT AT NEW ENGLAND BAPTIST WILL FINALLY GIVE HER BACK HER LIFE "100%."
E-Books by George Pollock
"State Kid: Hero of Literacy" is fiction based on his real-life experiences growing up in foster homes; "Last Laughs," is the true story of how five foster kids (he and four younger siblings) found their way in life and each other. "Killers: Surprises in a Maximum Security Prison," is the story of the author being locked up for 23 hours with killers in a maximum security prison; "I, Cadaver" is about the author's postmortem adventures and mischief in the anatomy lab at UMass Medical School. “A Beautiful Story” demonstrates the art and process of creative writing as a 16-year-old boy goes all out to write a story good enough to get him into an exclusive college -- on full scholarship; and "A Long, Happy, Healthy Life," which is about how to live the title every single day.
Labels: pain "chronic pain" "ideopathic pain" "undiagnosed pain" "pain treatment"
posted by georgepollock @ 9:58 PM
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