Document Your Mesh Journey
Mesh Angel art by my daughter Kim.
I am posting this on Mother’s Day and I just want to wish every mother who on this journey, a very Happy Mother’s Day. This blog is my Mother’s Day gift to every woman who is just beginning her journey and to all the others who are already on it.
Recently, two women I know finally had their surgery day to remove all their mesh by Dr. Raz, and some are on track to have it removed by Dr. Kim. It seems forever while we wait for that day, then suddenly we are there at last. Thankfully they now have a good chance at a new beginning and a new normal for their lives. Both have very different symptoms and issues and their recovery will take time. Their journeys have been long, but they now have a light at the end of the tunnel. They just have to keep moving forward to see that light, while resting and allowing their bodies to heal.
If someone should ask me when your journey to have mesh removed begins, I would tell them the following. It begins when you SUSPECT that mesh has been causing all your health issues. It varies for all women and there is no set pattern. The obvious beginning of your journey may be mesh erosion or during sex when something sharp has cut you partner. Mesh erosion can begin without protruding all the way through an organ but there are symptoms. Mine was eroding through my urethra and I had a strong feeling of burning in what I thought was my vagina, but I could not feel anything with my finger. By the time it is protruding, the pain can be terrible, so if you suspect erosion I hope you are making plans to have it properly removed, not trimmed as many doctors want to do.
For some it can begin as back, hip or leg pain and I also know how this feels. Many women did not even know they had an implant during a hysterectomy in the past and their continued health decline became a mystery for many years. Many symptoms can happen at any time after implant, from immediately after surgery or many years later. Even when you have immediate complications, doctors will swear it is nothing to worry about and it’s only healing time and all will be well. Mesh can be in the body for ten years and your health make take a very slow decline and you don’t even notice until you become very ill, live on medications or have unbearable pain. You may also experience leg or foot going numbness and sometimes you can’t stand or walk without a sharp pain that shoots through your leg or hip. You may also have had back surgery, nerve blocks, or hip implant without good results or ever knowing that your past implant may be the cause of your pain. These symptoms are associated with mesh shrinking in your body. It is unbelievable that so many women struggle through years without know why they have pain until they begin searching through Google. They have usually searched for answers as to why they are always sick or in pain and doctors have no definitive answers as to why. This will explain about shrinkage.
Polypropylene (PP) mesh shrinkage represents a serious complication, as a significant cause of pain and recurrence of pelvic organ prolapse or ventral hernias, frequently requiring several surgical interventions. The retraction seems to be caused by the host, in response to the implantation, through the occurrence of periprosthetic adhesions and fibrosis. We hypothesized that avoiding the postoperative adhesions can prevent PP mesh shrinkage.
Methods Sixty rats were randomly assigned to three groups. A standardized hernia defect was induced on the abdominal wall, which was repaired using an extraperitoneal PP mesh alone (group 1), with application of a hyaluronate carboxymethylcellulose-based bioresorbable membrane (Seprafilm®, group 2), or an auto-cross-linked polysaccharide hyaluronan-based solution (Hyalobarrier® gel, group 3). Eight weeks after the procedure, a repeat laparotomy was performed. After scoring the adhesion and measuring the mesh surface, a microscopic study of the prosthesis-host tissue interfaces was performed.
Results Group 1 displayed a median shrinkage of 29 % of the mesh. The Seprafilm® group (p = 0.0238) and Hyalobarrier® gel group (p = 0.0072) displayed a significantly smaller reduction of 19.12 and 17 %, respectively. Control group 1 displayed a significantly greater adhesion score (30.40) than the Seprafilm® (11.67, p = 0.0028) and Hyalobarrier® gel groups (11.19, p = 0.0013). The fibrosis was reduced in the Hyalobarrier® gel group only.
Conclusion This experimental study revealed that Hyalobarrier® gel and Seprafilm® can prevent PP mesh shrinkage and postoperative adhesions. They might be integrated in a mesh size-saving strategy, which should preserve the quality and durability of the surgical repair and limit the postoperative pain. Before you say great these products are wonderful, you need to read my post about Seprafilm. I will give you the link at the end of this blog.
For some it may be changes with thyroid, brain fog, loss of hair and a general feeling of not being well and there have been studies on biofilms on implants and this will help you understand more. First though you need to understand the association between the implant in your body and biofilms and why you will never get well until your implant is removed and in fact your health will continue declining.
Biofilms form on the surface of catheter lines and contact lenses. They grow on pacemakers, heart valve replacements, artificial joints and other surgical implants. The CDC (Centers for Disease Control) estimate that over 65% of nosocomial (hospital-acquired) infections are caused by biofilms.
The following gets a little complicated but you get the idea of why this is happening to you.
Medical implants serve as a polymer surface to which bacteria can attach to via hydrophobic or electrostatic attraction. Binding of bacteria to the hydrophobic surfaces of implants is energetically favorable and is a critical first step in biofilm formation. Biofilm development occurs in a stepwise manner, beginning with adherence of bacteria to the implant surface, followed by their proliferation and differentiation, and culminating with their dispersion (Figure 1). Adhesion occurs via surface adhesins such as polysaccharides and components of bacterial membranes such as teichoic acids in gram-positive bacteria. Common to many bacteria is the adhesin poly-GlcNAc (Pga) and its biosynthesizing proteins PgaA and PgaD. Pga production regulation depends on the bacterial nucleotide second messengers guanosine-bis 3′, 5′(diphosphate) and. Nucleotide second messengers are universal signal transduction molecules that regulate transition between motile and sessile states in many bacteria by altering adhesin expression. For example, ribosomal stress caused by sub-inhibitory concentrations of ribosome-targeting antibiotics triggers biofilm formation via the nucleotide second messengers C-di-GMP and ppGpp upregulating PgaA and PgaD synthesis, leading to Pga adhesin biosynthesis and consequent attachment of the bacteria
Bacterial biofilms on implants can cause blood stream infections and systemic inflammation when cells of the biofilm detach and disperse as part of the process of biofilm development Inflammation is initiated by host immune system recognition of conserved bacterial molecules such as cell wall components. Chronic inflammation instigated by persistent biofilms damages host tissues due to oxidants produced by immune cells that accumulate and kill host cells due to lack of penetration in the biofilm. Ironically, these necrotic host cells offer biomass and biomolecules that contribute to sizing and strengthening the biofilm matrix, respectively. Diagnosis of implant-associated bloodstream infections is often difficult because there are frequently no signs of inflammation around the implant since bacteria disseminate in the body.
Traditional antibiotic use has been selecting for multi-drug resistant bacteria and by its self has not been effective in combating the resilient biofilm-associated bacteria.
In another article I found this.
Biofilm formation of microorganisms causes persistent tissue and foreign body infections resistant to treatment with antimicrobial agents. Up to 80% of human bacterial infections are biofilm associated; such infections are most frequently caused by Staphylococcus epidermidis, Pseudomonas aeruginosa, Staphylococcus aureus and Enterobacteria such as Escherichia coli. The accurate diagnosis of biofilm infections is often difficult, which prevents the appropriate choice of treatment. As biofilm infections significantly contribute to patient morbidity and substantial healthcare costs, novel strategies to treat these infections are urgently required. Nucleotide second messengers, c-di-GMP, (p)ppGpp and potentially c-di-AMP, are major regulators of biofilm formation and associated antibiotic tolerance. Consequently, different components of these signalling networks might be appropriate targets for antibiofilm therapy in combination with antibiotic treatment strategies. In addition, cyclic di-nucleotides are microbial-associated molecular patterns with an almost universal presence. Their conserved structures sensed by the eukaryotic host have a widespread effect on the immune system. Thus, cyclic di-nucleotides are also potential immunotherapeutic agents to treat antibiotic-resistant bacterial infections.
When you realize you do have symptoms that could be associated with mesh complications it is time to begin documenting everything that happens from that point on and get your medical records and begin reading. However, you may find that your records from your doctor are sorely lacking in information. It in fact may be shocking to you that all the things you have complained of are not even in your files. So many of us have had had that moment when we read our doctor’s notes and things we said about symptoms have been taken out of concept or been totally ignored. It is as if none of it ever happened, as far as the doctor is concerned.
I know you will be searching for a lawyer but DON’T sign up through Facebook when you see ads like these float through your feed. These are marketing companies, and they are signing up women without any promise that they will have a case in the future and it is difficult to get the answers you need because they are vague about what they do. They do this to sell your case to lawyers when the next warning comes down from the FDA.
Attorneys at Law Sponsored. Pelvic Mesh Lawsuit Criteria: Must Have Had Pelvic Mesh Implant After 2001 – $41,500+ for Eligible Victims
Take this Free Evaluation. Time is running out to submit a claim! Free Case Review
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Women who suffered complications with Vaginal Mesh may be eligible for compensation. Click “Contact Us” to request a FREE, no-obligation case review.
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Be aware that the judge just threw out 150 cases and if you file with the wrong lawyer, this could happen to you.
When you click on a link like the one above, it will not tell you who is asking for your information. You will not know who these people are and they are the same type of marketing companies as the one Jane Akre of Medical Mesh Newsdesk, works for. DO NOT GIVE YOUR INFORMATION TO SOMEONE YOU DON”T KNOW. The reason being is that they have a perfect right to sell it because you willingly gave it to them. I will give you links to read at the end of this blog.
Once you suspect you are having issues with mesh, it is up to you to begin documentation and build your case. Get an inexpensive notebook and pen and put it beside your bed. Don’t document through your phone or tablet because things can happen to them and you will need to print them out later anyway. Documenting on paper will make it easier for you to make copies and can help prove your case. Things you need to write about are doctor’s visits and things you told the doctor on that date. If you have a nerve blog because of nerve damage, make sure you document every one. Every urodynamics test will count after mesh. Every procedure that you have done under anesthetic will count. Every cystoscopy you’ve had done because of problems or pain will count. If you wind up with the Interstem implant keep track of what happens. Take photos of anything strange that happens to your body, and print them out and tape them in your book with date of entry of things like strange rashes and sores that suddenly appear. If your hair falls out keep some in a small Ziploc bag and tape it in your book and the date the clumps came out. Hair loss shows your immune system is severely compromised by the implant.
I you wind up in the E.R add the date and report in your book along with any antibiotics you were given by IV. Keeping track of all antibiotics by IV or taken by mouth is very important for two reasons. It documents the trail of infections you had or have and you will know exactly what antibiotics did not work to clear the bacteria. Keep all lab reports in your book or additional folder documenting type of bacteria the culture reported.
This may help you find a lawyer when you do have enough evidence to back up mesh complications and documenting will also help you later when you receive a low offer from your lawsuit. You can send copies with all you have gone through and say you disagree with the offer. If you write anything to your doctor, make a copy any put it in your notebook. By doing this you will have a better handle of all you have been through and all you have done to try to resolve your complications. If you are met with hostility from any urologist, document it and enter a date. Going back later is really hard to do, so documenting as you go is extremely helpful. You can also report severe infractions and this information will be helptful.
Don’t worry about the past stuff you did not keep or document. You can’t worry about those “I should have’s”. Begin now and do something positive that could change your future. Then work on getting the funds together to go and get a proper diagnosis from a doctor who truly believes you do have complications from your mesh implant. Then you can work on changing your future just like the two women I wrote about at the beginning of this blog.
Once you are sure you have mesh complications work on a plan to get it removed. If you have a lawyer, you need to send an email (keep that email as evidence) before removal and ask for a letter to give to the surgeon with instructions as to where to send your removed mesh. This is all part of a lawsuit. If you don’t have one, ask your surgeon where he sends it for testing and storage and how long it will be there for and document it. Don’t take the removed implant home with you because in law, evidence has to be placed in storage by a third party in case it is needed to prove your case in a court of law for a trial. My lawyer sent a letter to me without asking for it and gave instructions to hand it to my surgeon before removal.
If you can, keep a personal journal to write down some of your thoughts through your journey. Use a little humor and don’t make it a constant whine and self-pity trip. No one will want to read it if you do. Writing your thoughts down can help you through your worst times and once you get through the worst days and a light shines through, you can look back and wonder how on earth you did it. We are all more resilient than we could possibly imagine. You can also help another women with all you went through so that she does not feel she is losing her mind. It will be very good to leave something like this behind for your children, so that it is a reminder what mesh did to you and they should never allow it to happen to them.
I can’t tell you where to go for removal because that is your choice, but I can tell you where I went for the best care possible and I know for a fact that any repairs you need at all afterwards, IF you need them, can be done at UCLA, WITHOUT USING MESH.
Positive actions will give you the reward that you know you are not crazy or stupid. You will also have proof which will keep you going towards your recovery plan and final lawsuit pay out. So begin documenting your journey now to find your way back to your new normal and a place of wellness.
You must get your records from the hospital, not your doctor if you don’t have a lawyer as yet and are seeking one. Read this blog. http://www.meshangels.com/report-to-the-fda/
If it was several years ago that you suspect you had an implant, read this blog http://www.meshangels.com/medical-records-law/
If you think when you file a lawsuit, you will be paid millions you need to learn as much as possible. http://www.meshangels.com/how-much-will-you-get-from-a-lawsuit/
This blog is about Seprafilm. http://www.meshangels.com/what-is-seprafilm/
This is another product used for scar tissue. http://www.meshangels.com/what-is-interceed/
This one is about scar tissue. http://www.meshangels.com/scar-tissue-formation/
Women are always asking me “How can I prove it is the mesh causing my symptoms?” You can read this blog. http://www.meshangels.com/proving-its-the-mesh/