Rare Hernia Mesh reaction?Posted by marty on May 5, 2018 at 1:20 am
I am trying to help a friend who had an umbilical hernia mesh type surgery after a motorcycle accident in 2013. He is 58 years old. He was hospitalized again after the surgery with infections, including C-diff. He has had pain in that general area ever since and multiple other symptoms, including dry eye. Recently he developed a rash and the doc thought he had Leukemia.. They did a biopsy on his leg where he had the rash and started him on steroids. Then they wanted to biopsy both kidneys. When he asked the kidney doctor if kidney disease would cause his other symptoms, the doctor said no. He has contacted some doctors about possible mesh removal. He heard back from one about maybe loosing weight and getting off the Prednisone before mesh removal surgery and then nothing more. Meanwhile his Kaiser docs seem pleased that he has gained weight on the steroids. He is now being referred to a Reumatologist to treat him for Henoch-shonlein purpura and vasculitis and Sjogren’s disease. They told him if the mesh is causing his problems, he would be dead from all of the steroids they are giving him.
ModeratorAugust 18, 2018 at 6:39 pm
– your friend should not make changes to steroids unless supervised by his doctor
– Sjögren’s disease may or may not get worse with hernia mesh. It’s kind of an unknown.
– Desarda is for inguinal hernias
MemberAugust 14, 2018 at 9:04 pm
Who and where did you have mesh removal? I am assuming your mesh being 6×8 is umbilical/ventral. How was your removal recovery, hospital stay,bed ridden after discharged? Thanks!
MemberAugust 11, 2018 at 6:41 pm
I went through the same experience as your friend is going through for 2 years. Headaches, low grade fever, sleepless nights, night sweats, fatigue, inability to walk for more than 4 blocks without breaking into a sweat, indigestion, diarrhea every 2-3 days, belly pain prevented driving for more than 45 minutes at a time. I was advised and went through all of the suggestions Chaunce1234 makes. Everything came up negative. Stanford’s diagnosis – chronic fatigue syndrome.
Finally requested that my mesh be removed. And the change was miraculous. All those symptoms are gone. The images of the hernia mesh showed abscesses all along the edge of the mesh and nearby. Pathology said they were inflammation due to foreign material in the body. It was a 6×8 inch mesh placed internally between the bowels and the peritoneum.
I know Dr Brown fairly well. He is more anti mesh than most. A big question is how to fix the hernia after the mesh is removed and that depends on the size of the opening. Dr Brown should provide sound recommendations on how to do it without mesh.
Wishing you the best. My advice – trust yourself.
MemberAugust 11, 2018 at 4:02 am
My friend has Bard Ventralex!
MemberAugust 8, 2018 at 10:50 pm
I have similar symptoms,fatigue, tripping and falling. My umbilical was 2016 with ventral. The mesh implanted is bard ventralight st with echo positioning.https://youtu.be/nDdO3eZ_zfA . It is a 6x8in. I am now doing research on removal as well. Hindsight is 20/20 we all need foresight. The pain I was in prior to surgery clouded my judgment so I agreed to it without study. The general surgeon said it was like patching a tire. I now have pains in same area that feel deeper, hoping it is not an adhesion! This mesh is touching organs if I’m not mistaken, watch you tube video. I have been to neurosurgeons and neurologists for nerve problem causing footdrop which they said is the tripping and falling. I have not felt or been able to do a lot of the things that I could before surgery. Core doesn’t work the same, hurts if I engage it for tasks that used to be simple. I grew up physical and have a physical occupation,for now. Since the tripping and falling dr.s have me out of work on short term disability. So using core normally to walk does not work like before surgery. I know what your friend is going through. I hope we find solutions for the practice of medicine.
MemberAugust 8, 2018 at 4:03 pm
My question: is there a good nutritional source for collagen to improve surgical outcome? My friend does not smoke, but has been ill since mesh implant in 2013 and is 58-years old. My friend belongs to an HMO. A few months ago his doctors asked for a list of types of non-mesh hernia repair surgery. I put together a list of the types I could find on-line as well as a list of surgeons who do those types of surgery. The HMO informed him that they are bringing in a surgeon who is experienced with Desarda and are weaning him off steroids in preparation for mesh removal surgery. He may be ready for surgery by August 31.
MemberMay 9, 2018 at 4:40 am
Based on what I have read on these forums, I believe an umbilical hernia situation is easier to deal with than an inguinal hernia problem, so that’s good news. But it’s also possible that it’s not the problem at all, so tell your friend to be open minded.
A few ideas:
– Has your friend tried an elimination diet to see if there is any reaction, resolution, or worsening from particular foods?
– Have they tried probiotics and similar to try and help normalize gut bacteria?
– Have they been to a GI specialist to rule in/out any particular issues? The C-diff history makes that worth pursuing if it hasn’t been already.
– Has your friend had blood work done to check for any abnormal inflammation or inflammatory markers?
As for the hernia, if your friend is thinking of having the mesh removed and then a tissue repair (if possible) that is likely why doctors would suggest he lose weight. Many non-mesh practitioners recommend being in the ‘normal’ BMI weight range for the repair to hold, and I think that being overweight increases general risk of hernia and recurrence in general. The elimination diet may help lose weight as well. Often just reducing or eliminating things like junk food, soda, carbohydrates, etc can lead to notable weight loss, and some people report less inflammation in general after they’ve cut out some of those foods.
C-diff can be pretty serious to deal with too and it’s conceivable there is some lingering GI issue, so it’s worth at least ruling that out. Imbalanced or poor gut bacteria can do strange things and cause strange symptoms. On that note, some patients report wildly successful GI symptom resolution with a fecal transplant – yes really a feces transplant, and I believe there is some research to show it can cure C-Diff as well.
My opinion as a mere patient is that if a problem can be cured without surgery, then cure it without surgery. So if possible, rule in/out other things first.
Keep us updated on the case and any progress.
MemberMay 7, 2018 at 11:56 pm
Thank You! He is in Northern California and is eager to have the mesh removed. He has sent a DVD of his medical history to a couple of mesh removal surgeons, and has heard back from Dr. William Brown. Dr. Brown seemed very interested in his case. He is the one who sent the link that it would be good to lose weight and stop the steroids before surgery to avoid complications. I think it would be good if he could be under a Dr. supervision if he is going to stop the prescribed steroids, even though they are making him even more miserable. To me, he does not seem all that fat. He actually seems more swollen. He continues to try to do his job as a general contractor and is positive and upbeat. His wife is afraid he is too easy going and that might be why he is not being taken seriously by the doctors. He is a third degree black belt and still has some core strength, but also has a lot of fatigue and is subject to uncharacteristic tripping and falling. He is also building my house, which he started in September. I told him I would like for him to finish my house, but that I do not want him to die in the process. Any suggestions for what he can do next are appreciated. He is willing to travel, but would love to find someone nearby.
MemberMay 7, 2018 at 12:57 am
Hello Marty. I have heard of somebody who had whole body physical effects after mesh implantation for a hernia repair. He lived with it for many years, and eventually had the mesh removed, and is doing much better, as far as the constant feeling of being ill that he had with the mesh. He had been sick from the moment he woke up from the surgery, and knew that the mesh was causing it. But, like in your friend’s case, the doctors looked for every alternative cause that they could think of.
You haven’t asked a specific question so maybe you’re just gathering information. Your friend probably has the best idea of if the mesh should be removed. One of the hard parts of choosing to have mesh removed is the fact that you’re essentially alone. Most or all of the experts will recommend against it, for reasons that they probably don’t even understand.
Post a general location and people can advise of a local surgeon who knows the symptoms of mesh reactions. He needs to find an open-minded surgeon who will evaluate his conditions objectively.
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