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The Voices Today on Messed up Mesh (TVT Mum)
Help and support to both men and woman who have had the medical device TVT Retropubic, TVT-Secur, TVTO and TOT, synthetic polypropylene mesh for hernias, prolapse, stress incontinence and bladder and bowel disorders. You're not alone!

Advice and Help on TVT, TVT-Secur,TVT-O and TOT Tape/Mesh Medical Devices


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Revised and Updated: 2nd December 2011

This small self-help guide is for everyone when you first discover you have a problem with your tvt, tvt-secur, tvt-o and tot or any other mesh related medical device.

It is advisable to read a little each day to familiarize yourself on the whole scenario concerning this growing serious health problem many people are facing every single day around the UK and Worldwide. When you first approach us for help we listen and give advice to help you through your difficult time coping with your health changing circumstances the best we can. We usually give everyone the same advice as pointed out below.

What do I ask my surgeon if I have a problem?

Following are some useful questions to ask your surgeon:-
1. Are you qualified and experienced in mesh related complications?
2. How many partial and full mesh removal surgeries have you done to date?
3. How many have been successful?
4. If I have a mesh complication, will you treat it or will I be referred to a specialist experienced in surgical mesh removal procedures?
5. If I have a complication related to the surgical mesh, how likely is it that the surgical mesh will be removed and what could be the consequences?
6. Can you do all the necessary medical tests ie: CT Scan, MRI, PE/CMOS and pelvic floor ultrasound using translabial/ transperineal 2D and 3D transducers.?
7. Can I have a copy letter of the surgical procedure if it becomes necessary to perform the surgical procedure for a partial or full mesh removal?
8. What are the risks involved in partial/full mesh removal?
9. Can I see how much mesh you have taken out or can you tell me how much was taken out by measuring it and can I keep it?
10. What other things can I expect ie: catheter? infections? I need to know what I will go through after surgery.
11. Will I have post-operative care and follow up appointment?
12. If any problems arise post-operatively who do I contact?

Handy advice

Stress Urinary Incontinence Pads
You can ask your surgeon to refer you to the incontinence nurse if you need to use long term pads, you will find most hospitals will provide these for free plus any other item you require to help with your recovery.

This is a 'Hidden Disability' Medical Condition
6th November 2011
Breakthrough News
In the UK and in the USA this is a recognized 'Hidden Disability' - Confirmed Medical Condition UK: 'Chronic TVT/Mesh Implant Inflammation' and in the USA: 'PFS Syndrome'. I asked Mr Drake on the 3rd of November 2011 for his opinion about our 'hidden disability' we can't keep saying we are 'mesh sufferers' as this is not really recognized. I have authorization from Professor Marcus Drake we can use this medical condition term in the UK 'Chronic TVT/Mesh Implant Inflammation'. To read more please visit the link below for more information:
www.tvt-messed-up-mesh.org.uk/hidden-disability-chronic-tvt-mesh-implant-inflammation.html >>>

Disability Living Allowance (DLA) and for the over 65 years of age Attendance Allowance (AA)
You can also apply for Disability living allowance if you unable to walk far, you are housebound and find daily life difficult. Claiming for DLA does not take into account your working life if you have one, it is a benefit soley to help you with your daily life and care needs. Direct link to view more information on DLA:-
www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOtherSupport/Disabledpeople/DG_10011925 >>>

Carers UK - For more information please click on the following external links:

Disability Living Allowance (DLA)
www.carersuk.org/help-and-advice/help-with-money/benefits-a-tax-credits/dla-and-aa >>>

Over 65 years of age Attendance Allowance (AA)
www.carersuk.org/help-and-advice/help-with-money/benefits-a-tax-credits/dla-and-aa/all-about-attendance-allowance >>>

More Help for the senior citizens - Warm Front Insulation Grants
Insulation grants are available to every home in Britain to help you create a more energy-efficient home. Grants will fund between 50%-100% of the cost of insulating your home as part of the Government’s pledge to reduce carbon emissions.www.insulationgrants.info/applying-for-an-insulation-grant/warm-front-insulation-grants/?gclid=CNO91_zOoawCFUtC4QodVg2A7A >>>

Health Assessment and Care Needs
If you are finding it difficult to cope around your home you can apply for a health assessment usually arranged through your Local Council. Ask your GP to refer you for a health assessment. This is handy if you find it difficult to get around your home, cooking, climbing stairs etc. You could be entitled to grab rails, walking stick, bath/shower stool and other adaptions and aids to help you cope with everyday living.

Record everything to do with your health and care
It is advisable to do a daily health diary, to have copies of all your consultant letters and make sure you have a copy of any surgical procedure your surgeon is going to perform on you.

Reporting your faulty medical device to the Medicines Healthcare Regulatory Agency (MHRA)

First you need to get your medical devices details. You can ask your surgeon's secretary for these details or you can find your medical device details in your medical records, you can apply for your medical records directly from the NHS:-
How do I access my medical records? Please click on the NHS external link www.nhs.uk/chq/Pages/1309.aspx?CategoryID=68&SubCategoryID=160 >>>

The details you require on your medical device are as follows:

  • The name of the medical device

  • The name of the manufacturer

  • The modal and serial number

If your surgeons secretary asks why you want these details please say you want to put in your adverse report into the MHRA as there are already significant numbers on their database plus they have launched an investigation.

When you have your medical device details contact the Medicines Healthcare Products Regulartory Agency (MHRA) as per the link below and submit your adverse report. Please make sure you have a copy of your adverse report for your own records before you click submit on their website! You will receive an automated reply from the MHRA to say they will carry out an investigation and you should receive a concluding outcome on your report.

DATED: 30th November 2011
Online MHRA reporting adverse incidents involving medical devices:- www.mhra.gov.uk/Safetyinformation/Reportingsafetyproblems/Devices/index.htm >>>

Information on the Medicines Healthcare Products Regulatory Agency (MHRA)

Date: July 2011
Recent Public Health Alert issued from the MHRA
Advice from the MHRA:
Synthetic vaginal tapes for stress incontinence
The MHRA has seen a recent increase in numbers of adverse event reports in comparison to numbers received in previous years, increasingly from patients. As a result, the MHRA has launched an investigation to better understand the use of these devices and the complications associated with their use. Please click on the following links to read more:
MHRA-PUBLIC-NOTICE.pdf >>>

2nd September 2011:
HERE IT IS! - THE PUBLIC HEALTH ALERT WE HAVE BEEN WAITING FOR FROM THE MHRA BUT IT IS SHOWING ON THE EUROPEAN ASSOCIATION OF UROLOGY WEBSITE Synthetic Vaginal Tapes for Stress Incontinence: Proposals for Improved Regulation of New Devices in Europe Paul Abrams , Christopher R. Chapple, Marcus Drake, Suzy El-Neil, Susanne Ludgate, Anthony R.B. Smith.
european-association-of-urology.html >>>

Questions patients may want answered before undergoing insertion of vaginal tapes for incontinence should discuss with their surgeon prior to surgery:

Advice for new patients considering Vaginal Tape/Mesh implant from the Medicines and Healthcare Products Regulartory Agency (MHRA)

  • Full description of what the treatment involves

  • Why this type of treatment is appropriate

  • What are the different devices available?

  • Pros and cons of different devices

  • What are the alternative treatments?

  • Possible side effects or adverse events associated with the treatment

  • What happens if this particular surgery does not work?

  • Has the surgeon performed this operation before and if so in how many patients?

  • Has the surgeon performed an audit of his or her results of the procedure proposed? If so, what were the success and complication risks?

Personal View on TVT Treatment

Unfortunately many people are not told the truth at their first consultation on what their TVT Vaginal/Mesh surgical procedure involves and most were and still not offered alternative treatments, please click here to view alternative-treatments-for-stress-incontinence.html >>> We have been told by our medical expert most of the time surgical intervention is completely unnecessary. We have heard on many occasions the 'TVT' as it is often referred to (this is not the correct term for these mesh medical devices they implant in us as there are numerous different mesh products flooding the market ie: TVT, TVT-Secur, TVT-O and TOT and many more!) we were told it is a nice piece of tape to hold up the urethra and most of us thought it could be removed if it went wrong. We are not told the truth on the exact model of the medical device, the make-up of the device and it is a permanent implant. It is advisable to research your medical device and try to understand what exactly has been or is going to be implanted in your body.

Advisable to ask for an informative leaflet on the medical device from your surgeon plus always ask for a copy letter on the actual surgical procedure the surgeon is going to perform on you.

Support Group
Confidential Telephone and Email Help-line please visit the link below for details:
Contact us >>>

It is advisable to join our support group on the message board tvt-messed-up-mesh.org.uk/phpbb >>> to share your tvt experiences and stories, you're not alone!

The purpose of our support group is to give a listening ear and to comfort one another we are not here to give medical advice. Please read the medical disclaimer located at the bottom of each webpage.

Petition
Urgent Review on TVT, TVT-Secur, TVTO & TOT Medical Devices
There are many people who have signed our online petition and some have shared their stories. Some have also downloaded a copy to collect signatures. It is fantastic to see the men are starting to sign the petition too, we need you all to support our cause and help all women who are wives, mothers, grandmothers, sisters and daughters suffering.

Online Petition:
TVT Mum Petition to sign online >>>

Download Petition to collect Signatures:
www.tvt-messed-up-mesh.org.uk/petition.pdf >>>
Progress on petition signatures:
Petition and Signatures >>>


You will see and hear from people who decided not to go ahead with surgery after reading our website. They have been saved from harm!

For more information on our petition please visit here www.tvt-messed-up-mesh.org.uk/petitions.html >>>




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