Laparoscopic photos B. Rosenberg Prolene hernia system eroded
Many of you have read the story of Bruce Rosenberg, a former social worker turned patient advocate after he suffered complications from a hernia mesh implant. Even though he is still injured and disabled, Bruce wants nothing more than to help patients who are injured and hopes to provide enough information so patients seeking a hernia treatment will seek a non-mesh repair.
Bruce is not a medical doctor so please consult with your health care practitioner.
Read Bruce's story here.
To help inform patients, Bruce’s column starts here with a question from Melanie Swann from Australia. Please feel free to share this story with anyone who has a hernia and is considering a repair.
Hi Bruce~ I am interested in sharing my story. I am in Australia. I had a Hernia repair in 2011, since having the mesh repair I have pain in my groin, loss of nerve in the groin area. I also started to have problems with nerve pain and strange sensations all over my body. A few years ago I went through the process of seeing Ms, sarcoidosis specialists. After many tests and visits I was diagnosed with fibromyalgia, trigeminal nerve damage and costochondritis. I am now suffering badly with groin pain in the area I had the hernia repair. I’ve had a couple of scans over the years but they cannot see anything wrong because of the mesh.
Any advice on what to do next or who might be able to help would be great.
Prolene Hernia System explant from Rosenberg, 1.5 years
You describe the very common and classic symptoms of most mesh injured, due to injury mainly of the Genitofemoral nerve by direct trauma from the mesh, staples, sutures, or scar tissue entrapment. The mesh causes excessive inflammation and scarring...which is a terrible irony because it is supposed to do that to strengthen the defect. Unfortunately it is not transient as claimed (lies and more lies) and it is excessive your entire life.
You do not likely have fibromyalgia, it is a common misdiagnosis along with every other scapegoated diagnosis to avoid dealing with the implant because the doctor does not want to deal with a potential lawsuit patient, and of course lack of training on how to deal with mesh, failure and nerve injuries. So many people screaming "autoimmune" but not really, this is about mechanical injury to nerves and tissue that is supposed to be flexible, with abdominal wall conformity that fails as the mesh suffers from severe contraction.
The genitofemoral nerve causes pain that may radiate to the inner thigh, and down into the vaginal wall. The lateral cutaneous branch of this nerve may cause pain out to the hip (or a pulling sensation as the nerve runs its course back to the spine), and then down the outer thigh (often misdiagnosed as sciatica). The damage may cause pain and even weakness in the legs, and burning in the feet.
The ilioinguinal nerve also may be entrapped, and cause pain or pressure over the bladder, and into the vaginal wall., across the lower pelvis and groin. The iliohypogastric nerve may cause pain across the abdomen and even around to the back due to its course back to the spine.
Don't make yourself crazy thinking the mesh is poisoning you, or causing fibromyalgia.
In a sense it mimics it, some patients report feeling better after mesh removal due to decrease in inflammation, but the real saving grace is the proper treatment of the nerve injuries and you will feel much better overall. This is usually accomplished by "Neurectomy", cutting the nerve and burying the end that goes back to the spine in muscle tissue to kill the pain signal.
I had it done three times before it worked for me, as the nerves cross communicate with periphery nerves...this causes that sick feeling you have, pain all over and weakness as the nervous system does not know what to do with the crossed pain signals, add in the inflammation factor and the patient feels sick all over from the chronic pain, PTSD worrying, anxiety, poor nutrition from mesh and inflammation on the colon preventing proper digestion, possible infection (which is local to the mesh and may not show up in the blood culture).
I don't know who specializes in successful mesh removal and neurectomy in your country. The neurectomy is usually required to solve the pain and many symptoms.
Here in the U.S., I went to Dr. A. Lee Dellon. Google his book, "Pain Solutions" and click on chapter 4 where he describes why groin pain happens and how he treats it. You can give the chapter to any local "Pain Anesthesiology Surgeon", who should attempt "Dermatome Mapping" first to isolate the injured nerve branch, by injecting an anesthetic into where you feel pain.
This may take several attempts. If you report feeling better, the surgeon will cut that nerve (Neurectomy) versus Neurolysis" which is just moving the nerve away from damaged tissue and entrapment.
Shouldice Clinic, Hernia Mesh with nerves
You can google Dr. Parviz Amid, his paper "Ilioinguinal inguinodynia: Triple neurectomy with proximal end implantation" and also his paper "Radiologic Images of Meshoma."
Meshoma is a contracted folded mesh, rock hard and may compress nerves and cause pain by mechanical pressure.
Here in US, Dr. Igor Belyansky in Maryland (near Washington DC) has had pretty good results/outcomes with mesh removal. Removal is extremely invasive and requires much experience, and at least a year to recover.
If you have not tried Tramadol, (also known as Ultram), you can ask your doctor to prescribe 50 mg tablet, take with food and give it an hour to kick in. Might take a week to get used to it. Most people take one or three a day and report feeling better as it calms the nerves...versus percocet/oxycododne and hydrocodone-type pain drugs that cause nausea and have a higher addiction history. Compared to that, Tramadol is mild.
(Please note, ***Must know your height and weight, smoker/non, name of your mesh, what meds you are on.)
Dr. Georg Arlt, Park Klinic Germany
In Germany, Dr. Georg Arlt has had some good outcomes at the Park Klinic. Keep in mind the nerve issue must be attended to, and if any infection present concern should be expressed over using another mesh made of polypropylene.
Don't be surprised if the surgeon states he will use another mesh as it is the standard of care and the defect may be too big to stitch up after first mesh removed. Also your removal surgeon may leave a small piece as it too hard to totally remove and the nerve may still be entrapped under that piece, so make sure you clarify that every bit of it is removed if possible (not always possible if the mesh is on femoral or iliac arteries, or bowel).
Hang in there, very rare to die of mesh complications, patient just suffers while doctors ignore the real culprit.
Melanie replies~ Wow thank you so much for this information. I finally feel like someone has shed some light to something I have suspected for a while now. I will have to do some research here in Australia to see what I can do. I had a discectomy the yr before having the hernia repair, it was after the two surgeries that my body started to experience crazy nerve pain. I am a non smoker, I have been trying to find my paperwork to see what mesh was inserted. My height is 5'3 and I'm 57 kilos. I have a very good diet. I only take tramadol and palexia when I can't cope and it becomes unbearable. Most of the time I try not to take anything. I suffer in silence. I have two children so I've learnt to get on with it. Although this winter has not been easy. My inflammation and hip, back and groin are very painful. I did an elimination diet a few yrs ago and I know that food has a lot to do with my body's inflammation. I guess my winter diet is not as healthy as my summer diet.
I really appreciate you messaging back with the indepth information you have given. I first need to find out what mesh was used. Then I can progress from there. I watched a program on Netflix and it opened my eyes and made me research about the mesh. I hope one day the medical body that allows these to be used will find themselves under scrutiny for the pain caused from them.
Thank you so much and regards