Beverly Martiniano: Suffering in Silence and Waiting Until OctoberMar 27th, 2012 | By Jane Akre | Category: News, Patient Profiles
October 1, 2012 is an important day for Beverly Martiniano.
It’s her 65th birthday, yes. But it is also the day she qualifies for Medicare allowing her to take the first step to have several synthetic surgical meshes removed from her body that have plagued her life and health for several years.
She tells MDND that every morning she wakes up with intense shooting pain down her legs. Pain management consists of alternating between the Fentanyl pain patch and the opioid pain reliever, Vicodin. She is unsteady on her occasionally numb legs which she fears will go out from under her.
Martiniano is like thousands of Americans who have fallen through the safety net. Her job as a recruiter for a beauty college in Phoenix, Arizona is now part-time so she does not qualify for medical health benefits. COBRA is very expensive, up to $1,300 a month, so she and her husband are without insurance to cover their medical care.
Ms. Martiniano says her health went downhill after being implanted with synthetic surgical mesh. She had it done twice.
In 2008, Martiniano had some leakage and feeling of urinary incontinence. Her doctor sent her to a urologist who said her bladder was prolapsing, or falling through the vaginal vault, and a treatment would be to implant a sling to hold up her bladder. Stitches following a hysterectomy in 1978 must have come loose, the doctor surmised. And besides, that was the old treatment she was told.
On October 23, 2008, she had implanted the American Medical Systems (AMS) Monarc Subfascial Hammock Sling made of polypropylene mesh (here), called a ‘minimally invasive’ procedure that can be performed in under 15 minutes, according to the company website. Two years later with the incontinence returning, the same doctor suspected the mesh had fallen out.
“I trusted him. I didn’t ask any questions” she says.
The urgency to urinate kept getting worse, so she returned to the same urologist who told her there was a brand new product on the market that worked better than the last one – a sling that the bladder sits on.
So in June 2010, she had another mesh treatment, but Martiniano would later find when she retrieved her medical records that she actually had two types of mesh implanted at that time. The Perigee Vault Suspension System and the Elevate with IntePro Lite Prolapse Repair System, both made by American Medical Systems (AMS).
The mesh cost $7,580 and the bill for the total surgery was $19,768, she says.
“The pain I had experienced was not even like that after children. It was so excruciating I wanted to die. I’d rather have 10 children. That night I called his office; I was in such pain. I’m dying I need something for pain. We can’t prescribe over the phone, he said, you have to go to the emergency room.”
She continues, “He had given me oxycodone and it didn’t touch it. I took another one. The next day it was not as bad; I was tolerating it. By then the pain was in my lower back in the rectum area. I called the office and I said the pain is just excruciating and I told him where it was. And the nurse said that doesn’t have anything to do with my surgery. I said ‘excuse me,’ I didn’t have this pain before surgery!”
The nurse insisted the pain was emanating from a different area than the mesh implant. Finding no answers, Martiniano says she experienced a week of extreme pain and agony. Every time she lifted something, she had a shooting pain in her lower back, coupled with the urgency problem which continued; and there was a new development. While she had experienced urinary urgency, now she had incontinence with her bowels.
“On the way to work I couldn’t control my bowels, I just lost it. I told the doctor this sling is not working and I’m also having lower back pain. He said it looks fine. I said it’s not fine, something is wrong! They gave me Detrol (here) for an overactive bladder and said it would help. It didn’t touch it.”
Martiniano has done her own research and believes when the doctor attached the mesh to the back of the vaginal wall it attached to a nerve.
“I went to my general practitioner and he thought I was some kind of idiot. He had given me Percocet for pain and he said take it once a day. But it only lasts six hours. I said I need pain control and he put me on a Fentanyl patch which has decreased the pain 80 percent. He said you will have breakthrough pain by the third day because it stops. I’ll give you Vicodin. So I switch them off every three days. This is called pain management?”
Her pain management is running her $135 a month.
Martiniano decided her general practitioner would be open to a little information that she had gained from her Internet research. So she made a CD of the FDA’s July 13, 2011 Public Health Notification (here), which questions the benefit of mesh versus the risk, as well as video interviews with mesh removal doctors expressing their concerns about the emerging numbers of mesh injuries being reported. She says he wasn’t interested. He hadn’t heard about the FDA warnings.
Martiniano’s health concerns are complicated. She has fibromyalgia. She’s a smoker. Smoking is a risk factor for mesh erosion some studies have shown.
She has acid reflux and takes medicine for high cholesterol. How does she know her health problems are due to synthetic mesh? Martiniano says, “I absolutely had no problems before the surgery, immediately afterward I had excruciating pain in the area where they put mesh under the bladder. At the time of the surgery it wasn’t the rectum, now it is?”
Out of Options
Martiniano’s husband is upset. His wife can’t vacuum or cook a meal. In fact she can’t stand for more than 10 minutes.
She says there is no point in going back to her doctors. “The general practitioner acts like there is nothing he can do without insurance and he can’t send me to anybody else.”
Working in the cosmetology business for 45 years, Martiniano say it’s her passion. But now standing to do a haircut is impossible. And working, even part-time, has become increasingly difficult, especially since she is in the public eye.
“Once a year Triple AAA does a special night and brings in senior high school students to select from a number of colleges. They do a dinner and each school does a presentation. I got up to do the talk and I crapped my pants. Sometimes I think the humiliation of this whole thing is even more damaging than the pain and discomfort itself.”
Martiniano needed to file for disability at the time she filed for retirement. Three different attorneys have told her she now does not qualify.
What would she like to see happen? Martiniano says first, take mesh off the market so others don’t have to experience what she’s undergoing. “It’s just ludicrous doctors are still using these things,” she says. “I’m running into people every day that are going through it; it’s rampant.”
Bev Martiniano says she feels badly that taxpayers end up cleaning up the mesh mess.
“I think it should be the insurance company. They don’t have any downside and the fact that my Aetna insurance originally approved this surgery; they should have some responsibility to take care of it even though I don’t have any insurance with them now. They approved the surgery, don’t they read the FDA reports?”
Ideally, Martiniano hopes to have a mesh removal surgery from Dr. Shlomo Raz at UCLA after Medicare kicks in.
“My husband I have been dancers, especially jitterbug, and can we cut a rug! But now I can’t even last through a slow dance. We were married on St Patrick’s Day and this year friends invited us to a big 50’s dance on that day and we had to decline. We had to cancel our month long trip around Texas to see my grandchildren, and great grandchildren, my brothers, my husband’s brother and wife and attend their 40th anniversary party, which had a time machine theme and costume dress of an era of the last 40 years. How fun would that be? We were going as 50’s couple, poodle skirt and all.
“All of my 14 grandchildren and 9 great grandchildren live out-of-state and I am not able to travel to see them.
“This is not what I envisioned as the golden years.” #