masymay

Hi There Masymay
Thankyou so much for writing on my blog. I am so so sorry to hear your ordeal, it made me quite upset to hear what you have been going through.
About 4 years ago I was where you are, but not as severe...I too couldnt open my mouth properly or clean my teeth properly and still have some in the corner of my mouth, as they quite difficult to remove from there without the scarring. I know how you are feeling I too became a recluse in my house and distanced myself from people. I have had alot of people from Canada contact me, you are not alone over there I think Canada has been one of the worst hit with Dermalive. What have you been doing to treat the lumps? I suggest stay away from the steroid injections they make it alot worse. I really feel you need to see another Plastic Reconstructive surgeon to help you, somene who usually deals with tumours of the face and people who have been through serious accidents who are use to reconstructiving faces, rather than someone who is a Plastic surgeon who does face lifts nose jobs etc. Unfortunately I too am not fixed completely yet and have more to go. I had a fat transfer to my lips and it worked ok but I still have lumps there, which I have been trialling a new technique where the doctor is lasering each nodule using a fibre optic cable and a certain type of laser and heating the product up inside, you can smell the plastic burning when he gets it, and then the plastic melts out or comes like a puss a few days later. Some of the more stubborn nodules it has really helped and they have either dissapeared or become smaller and others they have become a little softer with not a lot of change...its all trial and error. Take care Masymay email me if there is anything else I can help you with x Penelope

Some Advice I received from a very reputable Doctors surgery who has alot of experience removing Dermalive, which is very very important:

Many dermalive patients feel they can go to any Plastic Surgeon and the treatment and results will be the same. Unfortunately, this is not true. Two problems exists:...one being the granulomas as a result of Dermalive and the second, scars as a result of how granulomas were surgically removed. We have seen many cases whereby the Doctor has done more damage in the way granulomas are surgicallly removed. This is not a quick fix nor is it about filling the face up with fat. I can only stress the importance of choosing the right Plastic and Reconstructive surgeon who has a proven expertise in reconstructive disfigurement and working with removing non absorbable fillers.

Make sure you see a Plastic and Reconstructive surgeon with the letters
MB BS FRACS after their name as this indicates the level of training they have had

*FRACS (Fellow of the Royal Australasian College of Surgeons) is the gold standard of surgical training and qualification in Australia. It requires 6 –10 years of training after the basic medical degree MBBS, which all doctors obtain from their medical school. Only with the FRACS qualification can a practitioner be accorded with Specialist Registration

Hi There
I wanted to give an update as I have been receiving a few emails of late asking many questions.

For the last two years I have had five surgeries under full anaesthetic removing around eight granulomas at a time, some have grown back after surgery but after two or three removals they have settled down and stopped growing. I have one more surgery to go and then I will be having fat transfer to reconstruct my lips.My lips are looking the best they have looked in years thanks to a great surgeon.

The best advice I can give anyone out there looking for help with this terrible product, is you have to get the product out. Your body will continue to react until it comes out. Your body realises its a foreign material so it will do anything it can to try and push out, so removal is the only option.

You need to find yourself the best Plastic AND Reconstructive surgeon you can find, as they are the most highly skilled and trained in the industry. Don't waste time seeing a Dermatologist or Cosmetic surgeon.

Some Important Points:

KENACORT steroid injections DON'T WORK.....they cause the product to react more and cause the good surrounding tissue to die leaving you with potholes in your skin...(i know from personal experience)

Laser Light treatments such as IPL cause the product to react also so stay away from any treatment like this.

I found that anything with high histamine levels such as red wine can make the granulomas itchy and aggravate them further, so try to avoid it

Please do not hesitate to contact me on my email if you have anymore questions,
or if you would like to share your experiences please do I would love to hear what others have found and maybe we can all help each other out...
Kin regards
xx Penelope

Welcome

Welcome to my Blog.

I am from Australia and I have been battling Dermalive granulomas for 4 years now in my lips.
I have had 45 steroid injections, laser and light therapy to draw the lumps out, and 7 lots of surgeries to remove over 15 lumps so far, with many more surgeries to come.
I can see there are many of us going through this around the world and wanted to create a network so we can help each other out in finding a cure for this.
I have had some bad experiences as I am sure many of you have, and have found also some amazing people who have helped me on the way.
In particular I am looking for other Australians who have gone through this and would like to connect with them. Maybe together we can fight this injustice as they are in countries around the world.
I would like to welcome anyone from around the world to share their stories and experiences also.Thankyou for sharing in advance xx