West Coast Mesh Fighter

After Thoughts: Stuck between two worlds living with Transvaginal Mesh

Afterthoughts Special Series Blog Picture

This story like so many others has touched my heart:  This story is from a Mesh Mother.  Her son had a Hernia Mesh Implant, this story is about his Mesh Journey.  Like so many of us, it’s the pain, the pain is real, the struggle is real.  I could hear it in this beautiful mother’s voice as I read her story.  Grab your tissue box because this one is a tear jerker.

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This is her story

I haven’t written in a long time, but a sweet and wonderful woman, Mrs Ophelia Payne asked me to write a mother’s perspective on being a parent of a mesh injured son. So, Ophelia, this is for you…I love you, my friend. I apologize for the length. My heart has been broken since May 8, 2015 and I don’t think it will ever heal.

My son, T, was 18 years old in April of 2015. He was getting ready to graduate high school and start his future life. T’s very intelligent and loves computers. A few months before he had gone online, studied from YouTube, and gone and taken tests for a credential he could use to find an entry level position in the computer field. He passed all three tests. T was also very musical. When he lived at home, I used to love listening to him play piano while I worked in the kitchen. He played alto and tenor sax in the marching band and symphony band at school. It seemed he could pick up any instrument and learn to play it, but piano was my favorite.

I’ll never forget the morning he called me and asked me to tell school he wasn’t coming in. He said his stomach hurt. I thought he just didn’t feel like going, so I wasn’t concerned. By that evening, my husband took him to the ER. He had severe pain on his lower left side. The ER did a CT scan and other tests, they found nothing.

Over the next few days, T’s pain worsened. We took him to the family doctor who examined him. He thought T might have a hernia, so he referred him to a surgeon.

We took T to a surgeon. He was young and seemed caring and extremely knowledgeable. T was raised to trust doctors. I guess we all were…or, we truly want to because our lives are in their hands, my son’s life was in their hands.

We brought T’s CT scan to the appointment. The surgeon looked at it, examined T, and announced that he definitely had a small hernia. He’d operate, put a #mesh in, and T would be fine in a few days. I was so angry at the ER for not seeing the hernia (maybe because there really wasn’t one?!).

All I wanted was for my child to be out of pain, and that is what the promise was. It wasn’t until removal that we discovered that T’s original pain was not located where a hernia would be. Oh well, I digress. Back to our story.

I did have concerns about mesh and questioned the surgeon. Of course, he defended it and said T would be fine. I remember him telling me “to stay off the internet” (should have been my first sign) “because all “those” people weren’t real”. He said there was a small number of people who suffered pain, but not many, and T was young and healthy.

A week later, on May, the surgeon operated. I was a nervous wreck, but I never imagined what was to follow.

My son T was never the same after surgery. He got weaker instead of stronger. He got sick instead of well. He had more pain than he started with in new locations. At first, I thought he was just young and not used to having surgery pain, but quickly, the reality set in.

At the time, T had been working part time at the same job as me. When he came back to work two weeks after surgery, I watched my son get weaker and sicker. After a few days, I had to send him home because he was too weak to even sit at his desk. That night, he knocked on our door wrapped in a blanket and didn’t leave until after the removal.

My husband and I watched our 18 year old son dying in front of our eyes. T’s skin was grey, he was fatigued and weak, he had new pains every day and new symptoms. He began living on nausea medicine and could barely eat. Weight was peeling off his body and his face was sunk in. It was summer and he was freezing cold. No amount blankets would warm him. The headaches were the worst, I think. He had sharp shooting pains through his head 24 hours a day. I felt so helpless and I knew we didn’t have much time. That’s when the research began.

We took T from doctor to doctor, from ER to ER. He was just treated like a junkie until they realized he didn’t take pain medication. Then, they would treat him like he had an emotional problem. No one would believe that it was the mesh! The original surgeon who told us he could not remove the mesh, took one look at T slumped in a wheel chair and offered to remove it. We declined.

I started researching all night, every night, after working all day. My husband helped me take care of T while I researched. At work, I would take breaks and make phone calls. It was a living hell. Our worlds were consumed by trying to save our child’s life. The stun and disbelief as I learned how dangerous polypropylene is, angered and hurt me. What was happening to my child was unnecessary and totally avoidable. Why did the surgeon do this to our child? He was just starting his life? Why didn’t he tell us when I brought up my concerns that the outcome could be the death of my son who hadn’t even lived his life yet? He had to know something bad could happen. He had to know it was poison.

I won’t write about the 3 months of non-stop research, joining the mesh groups (thank God for the kindness of the members), contacting surgeon after surgeon, doctor after doctor to no avail…getting our hopes up, only to have them crushed. There was no life. All time was spent trying to save our son’s life. Honestly, it would take 10 pages of writing to explain those 3 months and the absolute nightmare we were living in. There are no words…written or spoken. Unless someone lives it (and all the mesh survivors do), no one can understand.

After a lot of circles and “almosts” from some of the removal surgeons, we were lucky enough to be recommended to a surgeon within driving distance.
I had hope for the first time in months. Maybe T would get 100% better and life for him could go back to what it used to be. Maybe we could put this all behind us and move forward. That was my prayer. That was my hope. That was my dream. He had suffered for what felt like an eternity, but at that time, was just under 4 months. He was withering away, fast.

Finally…we met the removal surgeon. He was kind and compassionate towards my son. He looked at me and said, “Don’t worry, mom, I’ll take it out”. On August 31, 2015, he removed the majority of T’s mesh. He said that he could not remove a small piece that was stuck to an artery (T could have bled out during surgery) and a few small specks on his bladder. I was saddened that he couldn’t get out 100% of the mesh, but the surgeon said it would not affect him. I still don’t know if that is correct or not.

It was a rough surgery for T, but I knew the surgeon did a good job. He warned us from the beginning that since T’s pain was not hernia pain, he still may suffer from it after the removal, since no one knew what was causing that pain. He was very honest about the surgery risks, as well. My hopes still soared. Would this be the end of the nightmare? Finally?

After the removal, which took over 3 hours, we were told by the surgeon that there was no hernia to sew up. He had removed a fat lipoma, did exploratory surgery during the removal, but could not see what caused T’s original pain. Again, my hopes soared.

As T recovered over the next few weeks, I watched the headaches disappear, the nausea go away, his skin color come back, and the new pains that had developed disappeared. He wasn’t freezing cold anymore…actually, the opposite, constantly sweating. But, T still had severe abdominal pain on his left side, left testicle pain, had diarrhea constantly (he was constipated with mesh in), and had developed a complex hydrocele in his left testicle. He also had to urinate every few minutes.

Emotionally, he was not the son I knew anymore. He wouldn’t look anyone in the eyes, and wore sunglasses all the time to hide himself. If we took him to a family function…on the rare times T would come, he would go away from everyone to be alone. T gained over 50 pounds. He stopped playing music. He stopped living a life. I was scared for my child. He was very angry, which was totally understandable, but he refused to talk to anyone or get help. I believe he was suffering from PTSD from the shock at such a young age of what he had lived through and was living through. He just couldn’t cope.

We were back on the medical cycle again. Doctor to doctor, pain management to pain management doctor. Everyone promised they could help him. Hopes up, only to be let down. It had to be nerve damage, they said, even though his symptoms don’t match nerve damage. Every doctor gave up within a month or two. We finally found a decent pain management doctor. Supposedly tops in his field. He was trying to help T, but none of the nerve blocker shots were working. They actually seemed to make him worse.

This doctor was going to try one last shot on T in January, 2017, which was a few months away. He wanted to give T a break because he’d been through so much. T never had that last shot. I often wonder if it would have helped, but I also respect his decision to get out of the hope and disappointment cycle. He chose to live with the pain. T hates doctors now and doesn’t trust any of them. Again, I can’t blame him.

Something changed in January of this year…2017. T still had the pain, the diarrhea, the extreme weight gain, still had to urinate a lot, and had the hydrocele, but he began to change. He stopped wearing the sunglasses and started working full time. He tried to take walks, but overdid it and damaged his ankle, so that stopped, but at least he tried. He was still very angry, but he started smiling and laughing sometimes. He held conversations with us again.

Now, I think that T handles this better than I do. He’s trying to move forward and has accepted his issues. He told his oldest brother that he is so used to being in pain that he mentally blocks it out most of the time. He is afraid to do anything physical because he believes the two surgeries actually caused him to have a hernia, but he won’t go see a doctor about it. T is playing the piano and saxophone again. His brother is taking him on vacation in July, so he’ll fly for the first time in his life…he’s nervous, but excited.

I know I should be happy and appreciative that T is alive, but as a mom, my heart is still broken. I live in a depressive state every day, and have ever since May 8, 2015. My mood revolves around how T is doing that day. I worry every day. Will he get worse? I have seen mesh removal patients a year or two later suddenly have new symptoms. Life is no longer happy for me. I only find moments of joy when I see, or hear, T is having a good day. If I know he is having a bad day, my heart sinks. We live 45 minutes apart now, due to work, which is difficult for me.

I am extremely appreciative to the removal surgeon. He saved my son’s life. I just want my son not to be in pain anymore. I want him to be able to take the long walks he used to enjoy so much, not lean on a counter in visible pain. I want him to have self-esteem again about his body and love himself. I want T to meet a nice girl, get married, have kids…the normal things any mom wants. I know the areas of his pain may affect him sexually. I know he is self-conscious about his body changes. I know he’s still not 100% back and may never be.

My perspective on being a parent of a mesh injured child of mine.. It’s hell !!

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