Patricia Buchanan, 61, a widow and triathlete from Whidbey Island outside of Seattle, was training for the USAT age group Nationals Olympic Distance Triathlon scheduled for Burlington, Vermont last August.
She had already qualified, so during the spring and summer of 2011 training became her focus.
On July 9, during her third race of the season, in Mount Vernon, Washington, she was way ahead and feeling confident. Buchanan jumped off her bike and began a 5k run but was seized with a deep and powerful cramp in her left calf. For only the second time in a dozen years of competing, she couldn’t finish a race.
“You know the feeling of cramps as an athlete, but this was so strong in depth and intensity,” she tells MDND. “I had the weirdest muscle pain and weakness in my quads and hamstrings. It was like you pushed yourself to the limit but it was a whole different pain like none I’d ever felt.”
A few days later her lower back seized up in what Buchanan describes as an 'odd pain," and she couldn't sit or lay down without seizing up. “It rapidly progressed from there,” she says followed by a churning pain in the abdomen and pelvis.
Fearing the worst, she returned to visit her oncologist and received an MRI. Buchanan had been an extreme athlete ranking high her age group nationally for Olympic distance in swim, bike and run, until a cancer diagnosis in 2005. An aggressive stage 2 to 3 breast cancer led to a bilateral mastectomy, 28 chemotherapies, and 28 radiations.
Genetic testing discovered that she carried the BRCA-2 gene mutation from her father’s Russian Ashkenazi Jewish heritage.
But now an MRI revealed she was fine – there was no return of cancer.
Research had shown her that the BRCA gene mutation put her at a 40 percent chance for ovarian cancer, so back in December 2006, Buchanan had a prophylactic hysterectomy and her ovaries removed.
At the same time, the surgeon implanted a Marlex synthetic mesh made by Bard to correct a prolapsed vaginal canal in something called sacral colpopexy surgery. A second doctor implanted a synthetic urethra mesh sling called Monarc made by American Medical Systems (AMS) to treat female stress urinary incontinence.
“I remember them showing me the nice soft piece of urethra mesh they said would act as a hammock for the urethra. It sounded so benign,” she said.
And knowing how active Buchanan was, the surgeon added the mesh was “bomb proof,” assuring her the fix would be resistant to any complications due to her extreme activities.
Because of the intense pain she felt during the race on July 9, 2011, Buchanan made an appointment with her primary care doctor who saw her the next day and prescribed a muscle relaxer, pain medication, and sleep aids.
The back pain she described as “odd and excruciating” and it continued and with no improvements which led to a series of medical appointments. She had an MRI with her breast cancer oncologist. A urologist said she was fine. Another urologist at another hospital took her pain more seriously and ordered a CT scan, pelvic MRI and pelvic ultrasound and pronounced that she was ‘fine’.
He asked her why she thought her problems might be related to the mesh.
”They were trying to tell me it was fibromyalgia and you should see a urologist, an internist, an endocrinologist or maybe an immunologist.”
By September 1, a return visit to the oncology gynecologist, who did the sacral colpopexy, told Buchanan there had never been a problem with “her” mesh or “her” procedure. She told her patient she would remove the mesh but that ‘most women don’t’ want to pee all over themselves.’
”I had never peed on myself before the surgery,” Buchanan says.
Buchanan says it’s not her personality to be a “wimp” but she couldn’t have done another month with the pain.
To make the point, Buchanan brought a picture of her racing in the Hawaiian World Championships Triathlon for her age group after her 8th chemotherapy.
It was not my personal best but I didn’t come in last. I wanted them to know I don’t look for excuses to sit around. I want to be training now. It takes a steamroller to known me down and this was it.”
Shortly after Buchanan’s July 9th fall, the FDA’s medical devices division issued a Safety Communication: UPDATE on Serious Complications Associated with Transvaginal Placement of Surgical Mesh for Pelvic
For the first time, the July 13 notification admitted that serious complications associated with surgical mesh for transvaginal repair of pelvic organ prolapse (POP) are not rare. This was a change from a previously most softly worded alert issued on October 20, 2008.
What sort of risk? After looking at the literature, the FDA reported that the mesh for pelvic organ prolapse (POP) repair introduces risks such as mesh erosion, contraction, severe pelvic pain, painful sexual intercourse, scarring and narrowing of the vaginal wall, erosion, infection and bowel and bladder perforations. And it said:
“Furthermore, it is not clear that transvaginal POP repair with mesh is more effective than tradition non-mesh repair in all patients with POP and it may expose patients to greater risk.”
“I heard on the news and looked it up, I said, ‘This is it - I'm so relieved.’ I thought they (the manufacturers) would take me under their wing and say ‘We’ll take care of you.’ I thought that was the way it was going to go,” she says now with a slight laugh.
So Buchanan took the next step, making an appointment on September 21, 2011 with Dr. Shlomo Raz at the University of California Los Angeles (UCLA) Urogynecology Department. Dr. Raz is considered a leading authority on mesh removal who sees hundreds of cases a year.
“He saw it and told me the Bard is one of the worst ones and my symptoms were completely in line,” she said.
Nearly four months after her initial consultation, Dr. Raz had a surgery cancellation.
Buchanan was back at UCLA, now in a wheelchair unable to stand with a loss of control of her bowels. Muscle relaxers and pain pills made her feel numb and she says she couldn’t have gone another month with the pain.
On October 24, 2011, Dr. Raz found synthetic mesh had sawed its way through her vagina and adhered to her colon causing neurological problems. Her bladder was being held in place with scar tissue and a portion of the mesh was infected and had adhered to her spine. Dr. Raz had to slice between the mesh and the colon to remove the Marlex. Buchanan spent five days in the hospital recovering.
Dr. Raz went in through the abdomen to removed the Bard Marlex mesh and to do some reconstruction, but the Monarc sling remains behind in Buchanan for the time being. Because of the complexity of the surgeries they cannot be performed at the same time. Removal is only one step. A half dozen removal and rebuilding surgeries are not uncommon.
When she woke up, Buchanan says she experienced an immediate relief of the pelvic and leg pain. “But I still have the right arch of my foot feels like its arthritic, it feels like it’s in a claw,” she says adding that she has ongoing head and knee aches and nasal congestion which she attributes to a weakened immune system due to the plastic mesh that remains.
“I’ve never been depressed in my life but this is by far the worst thing, worse than cancer,” Buchanan says. “There is nothing worse than something foreign in your body that goes bad. With the mesh, I felt like my body had been taken over and I was a prisoner being tortured."
Physical therapy and massage, healthy food, cranial electrical stimulation (CES) treatment to soften the chronic pain, acupuncture and seeing a naturopath – all are part of her routine now.
Still fatigue, headaches, a feeling of body inflammation, and what she says is an autoimmune reaction of allergies continues. Buchanan feels fortunate that her medical costs are largely covered by COBRA and at least for another year. Still she’s out of pocket thousands of dollars for travel, co-pays, medication, and the repeated doctor’s visits.
“And for the first time in six months I’ve been able to watch my granddaughter, Naomi, and I can pick her up and put her in a car seat and grocery cart, those are the kinds of things you miss.”
She looks forward to her January follow-up appointment with Dr. Raz and eventually a follow-up surgery. Buchanan says she has no plans to sue, not yet.
“Hopefully this will make a statement they’ve got to quit this. I’ve not been well enough to even talk with anybody. I was barely dragging myself to the doctor but they (manufacturers) would never repay me for the life had. Ten million dollars wouldn’t be worth it. And the worst part is having those doctors pat you on your head and send you away.” #