Beverly Martiniano: Suffering in Silence and Waiting Until October

Mar 27th, 2012 | By | Category: Patient Profiles

Cousin Julia and Beverly Martiniano

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.

Bev surrounded by family

Urinary Incontinence

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.

Preexisting Conditions

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.”

Insurance Liability?

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.

Waiting Until October

“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.” #

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20 Comments to “Beverly Martiniano: Suffering in Silence and Waiting Until October”

  1. Hi Beverly. I don’t know if you remember contacting me, I am the lady with the blog. I told you I was eligable for Medicare in June. I got all my ducks in a row early with Raz office. I called before I got the suppliment insurance and got my doctor ID number. Then when the suppliment time came I checked with his office about what they took and got AARP, F plan to cover everything I can’t forsee for $149 a month. They do ask about smoking. I have never smoked a day in my life and that could affect the amount you pay. I now have my consultation appoint June 5th. It’s costly to travel but he is the ONLY one in the country who does full mesh removal. Once I see him, I will set a date for tests and surgery. I am so happy that this painful journey will get better. I am glad you have chosen Raz. Make it work no matter what you have to do.

    • Beverly says:

      Dear Linda. Yes I remember you well. In fact we have the same atty. I am in touch with Raz office and in process so can get surgery scheduled in Oct. Glad for the info about AARP. I was trying to determine whether to take supplemental or the other, can’t remember the name, it is free, but afraid it would not cover as much. I will stay in touch and let me know how it goes with the surgery. I just got off the phone with a girl from here that Raz has done 4 surgeries on. We talked about 2 hours. You can find my email and phone on Facebook, under Beverly Badgett Martiniano. Good luck.

    • cathy munsey says:

      linda,
      how did your appointment go with dr raz?
      cathy

  2. David Sawyer Handyman says:

    Our Prayers are with you!

  3. Amy G says:

    So sorry you are experiencing this mesh disaster- I hope with medicare you will be on the road to meaningful relief and doing the jitterbug very soon!

  4. Noreen Wideman says:

    Well from another meshie who’s crapped her pants, and feared to leave her home in the middle of the worst pain I’ve ever known you have my bottom felt sympathy, one doctor tried to tell me my problems were Pudendal nerve compression, and I tried to tell him it was mesh sawing away at me that was the problem with my Punendal nerves…….but the good news is that you are going to feel so much better once those torture devices masquarading(sp?) as medical implants are removed from your body (as much as they can get out,) especially if the damn things are still intact. Hopefully one day we can all do a victory dance at the same time . Hang in there ! Hope is on the horizon! ( PS. I still have to be careful if my bowels are loose, doctor said “take immodium every second day”……never thought I’d see the day where activities are governed by bowel movements……but perhaps with more time and healing this will resolve for both of us) May god bless you with healing……Nonie

    • Beverly says:

      Thank you Nonie for the words of encouragement. It is a tough thing to live through and maintain. But hopefully Oct will come fast.

  5. Becky Eggert says:

    I have to wait until February 2014 for Medicare . . . until then I’m without medical insurance and no one will talk to me without cash up front. Waiting and praying . . .

  6. Gay Courter says:

    Beverly, this caught my eye because my birthday is also Oct. 1. Here’s a Medicare tip. Your Medicare starts the first day of the month of your birthday. So if your 65th birthday was Oct. 29, you would be eligible Oct 1.
    BUT, if your birthday is the first of the month, your Medicare can begin September 1! I was unaware of this and you must tell your company that is when you elect to start. Of course, knowing your problem, you should pick the very best supplement you can find. Sadly, I found out I had a problem needing a hysterectomy a few weeks after I became eligible for Medicare–and while it paid for all–I also ended up with my MESH–and that is now a whole other problem I am working to solve. Hope this helps you get your surgery sooner.

  7. Debby says:

    Dear DEBC,

    I had a bladder repair in May 2007 with two mesh products (Perigee patch and Monarc sling). I had problems almost immediately (bleeding and pain). Last July I had the Perigee patch removed as it was coming ‘undone’ inside of me. I wanted both products taken out of me but was told by the Urogynecologist who performed the surgery that he would not have time to get both products as the removal would be timely and tedious. Following the Perigee patch removal I had a hematoma, and now have a cystocele and rectocele and fecal incontinence due to pudendal nerve damage to the schincter during the pudendal block (risk of the procedure, I’m told). In a few weeks I will have the Monarc sling removed. I am hoping to get some relief from the constant hip pain (like a SHARK BITE) and leg tingling/numbness. I have fallen several times and walk with a cane. I am 57 years young and have had to retire on a disability pension due to these injuries. I have an attorney and my case is being prepared for Federal Court as I write this. God help us.

  8. Momma J says:

    I too, had the Monarch sling March, 2012. Four days after surgery, I started feeling numbness in my feet and legs. I have seen the doctor twice, and now he wants me to see a neurologist, who can’t see me until October. Now I have back pain and hip pain that is driving me crazy. My legs feel weak all the time and I get a lot of numbness. I have terrible insurance (7,500 deductible), and worry that I won’t be able to afford removal. Not sure what to do.

  9. Pat Connelly says:

    I feel we need to go on every Urologist and Surgeons Web page and tell them how stupid they are to tell people this Mesh is not causing problems in people and telling you were your pain should be and ask them how stupid can they get. If it was them or they family member could they live with it are or did they enjoy getting the money to do the surgery.

    • mark funk says:

      My 83 yo mother had a CR Bard vaginal sling procedure back in 2009 for urinary incontinence. She has had uti’s, infections & had renal failure. Have never been contacted by the doctor who performed the surgery. I am glad there are brave ladies like you who are speaking & helping out!

  10. hornberry says:

    Why isn’t someone out there to help us, not one Dr will touch me in the NW, Had the siling done one year ago, and about to give up on all this, can’t keep taking this pain, God help me, and all the women this has happen to.

  11. [...] Fund Raising.  Bev did this for a member of her own family and raised enough money to get the surgery and treatment needed for cancer.  So when she offered to help women understand what they could do for themselves to raise the funds to go out to UCLA, I was gratified.  Bev will undergo mesh removal on the 13th of this month.  She is grateful to finally do so because her life is that of being house bound and she feels lucky to have a good husband and family.  This is Bev.  http://meshmedicaldevicenewsdesk.com/patient-profiles/beverly-martiniano-suffering-in-silence-and-wa… [...]

  12. Colleen says:

    I have had pain since my mesh erosion surgery it was not as bad but just kept increasing in time and now it is so bad i have no live and i am 48 with a 10yr old son. It is in my pelvic area and shoots down my legs i am on vicodin for the pain but i cry all the time because i can’t find some one to help me… I went back to my ob he says its not the mesh and sends me to urogyn. he said “Oh there is no mesh in your bladder” Now hince the word “IN”… I know its the mesh. so then my ob says it’s sounds like muscular so i go see another doctor have an MRI down but they said they wouldn’t be able to see the mesh. All came out fine, had blood work down yep all good.
    I keep saying i “KNOW WHAT IT IS” ITS THE MESH SOMETHING IS WRONG… 2 months now and no progress… I will end up loosing my job due to not being at work. BUT I’LL I CRY OUT FOR IS FOR HELP…. Please some one help me…
    What do i do???? where do i go???

    • Hornberry says:

      Hi Colleen, I found help, they are great doctors, Dr. John Miklos and Dr. Robert Moore. They saved my life, they removed 85% of my mesh, and I am 60% better. I was at the point of so much pain and know one helping me, I was at the end of my rope, They have a office in Atlanta Ga, and now one in Beverly Hills Ca. You can find all the info you need on the web, they also worked with Dr Raz. I am still having problems with pain, but they really saved my life. It’s pretty bad when we can’t even get help in our own state, I live in OR.

      Good Luck

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We hope you find this a helpful resource. National News Editor, Jane Akre, began MDND with the hope of providing the latest news, information and perspective from the regulatory, industry and patient point of view, something that goes under-reported in much of the coverage of medical devices. The public is just now becoming aware that many devices do not undergo the same scrutiny as prescription drugs and are instead grandfathered in under an FDA loophole that has gone largely unchanged since the 1970s. As a result, patients become the post-market clinical trial subjects, and many suffer devastating and permanent injuries.