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AVM Survivors Network

Ulcers


#1

Hi, has anyone here ever had ulcerations that have been healed? My 13 year old daughter has 2 large ulcerated areas on her right foot that are getting worse and are extremely painful. We have tried various types of dressings and creams but nothing helps. Our doctors here in London don't seem to have any idea what to do next. Any advice please.


#2

How do you treat the ulcers?

Try to use these non-adhesive pads:

Mepitel One http://www.molnlycke.com/patient/en/Products/Wound/Mepitel-One/ or
PolyMem http://www.polymem.com/ and for decontamination and moisturizing:
Prontosan http://www.prontosan.co.uk/


#3

Hi Max thank you for sending the links. We are currently using Mepilex and a Hydacolloid dressing. Mepitel and Polymem sound familiar - maybe something we have used in the past. I will ask our doctors about all 3 of them. Do you have ulcers yourself? Have you ever managed to heal them? Thanks again for the advice.


#4

Thank you for your amazing reply. I am so happy for your cousin. Mia's ulcers are causing a similar threat to her leg ..... I am going to forward your whole reply to our doctors to see what they have to say. As far as I am aware there are no wound care centres in London/UK. Maybe AVM ulcers can be treated similarly to diabetic ulcers. Her life would be a million times easier without the ulcers on top of everything else.
By the way, I met Dr Rosen here in London last year. He felt he could treat the ulcers with further embolization and we have been seriously thinking about coming to New York (although we have no insurance). I believe you know him well. Do you know of anyone that he has helped with ulcers?


#5

Hi Eileen thank you so much for your replies. One of Mia's ulcers was as a result of embolization and they do have an odour. She hasn't yet taken any meds for them. We are just going through every dressing possible! None of which are working. As you say, she is having a tough time not being able to do the things that 'normal' 13 year olds can do. She won't even tell anyone what is really wrong with her. My fear is that these ulcers will never heal and will just get worse and worse. That is frightening.
I didn't know that teams from the US came to Europe. That might be better for us although obviously we would travel anywhere if there was a real chance that she could be helped. Thanks again for your words.


#6

I will tell you what. Dr. Yakes comes to Europe for making embolizations, consultations and making plan for treatment. There are Prof. Iris Baumgartner in INSELSPITAL (www.insel.ch), Swizerland. I think you should contact her for details.


#7

Aaah your poor husband. Not his fault he has no sense of smell!! When I met Dr Rosen I felt he was genuine and a truly nice man. I have left things up in the air with him while we try to work out whether having surgery so far away is feasible, especially when we would have to turn to our doctors here for check ups and back up in case of any eventualities. I am still not sure which way to turn. Maybe I should have a chat with his secretary?
Mia isn't even aware of this website. She doesn't know that I am forever trawling the internet for information, any advances in research, new doctors or speaking to someone like you who really understands our situation which I so appreciate. x


#8

Max you are so kind with all your links. I will look into Prof Baumgartner. Thank you so much for your help.


#9

Sorry Eileen it would not be a matter of cold-calling as I mentioned to you earlier I have already met Dr Rosen and have been in contact with Michele with a view to surgery but I will look on birthmark.org for the international section.


#10

Sorry for the late reply. I currently have one large ulcer on my right toe that I am struggling to heal. Seek out a wound care physician. Thats the only way they have healed for me in the past.


#11

I understand what you are going through. I have a high flow AVM in my thumb/hand. I have had this since birth (40 years). I too struggled with ulcers/sores/infection. I could get an antibiotic from the doctors and it did help but, I was getting them ALL the time. They were sooo painful! It drove me crazy!!! Anything I did to try and "prevent" it from happening, did NOT work. So, I figured this out almost by accident: For unrelated reasons, I started drinking Herbalife Formula 1 Nutritional shake mix (I order it on the web at Herbal Living Shop), after drinking it for a while (1year), I noticed that I hadn't been to the doctor for a while. Too long of a story to explain but, I stopped drinking the shake mix for a couple of days and guess what came back !?!?! yes, sores! I made the connection when I would run out of mix and had to wait until more arrived. Then more recently I tried to "switch" to another mix and NOPE, my AVM did not like it. I got (2) sores during that episode. I started drinking the Herbalife, and immediately one of the sores healed quickly, then the bigger sore slowly healed. My doctor once told me that I could never get rid of my AVM, it's 99.9% of my DNA, so keep it healthy so that you will have minimum work/maintenance that will have to be done to it, through out my lifetime. I personally realized that I do not eat enough food to consume the proper amounts of vitamins and minerals to keep humans "healthy", so that's why I continue to drink (2) shakes a day to maintain a healthy immune system/blood cells/etc.(what ever is keeping my AVM healthy). Don't expect immediate results at first. Give your body time to absorb the healthiness. I think it took me like 6 months to a year at the beginning to realize something was going on. Just keep remembering "Happy healthy skin=Happy healthy AVM". I hope this helps you. Please keep us updated on your journey.

Stephanie M. Taylor


#12

Hi Stephanie thank you for your reply. How amazing that something like Herbalife can do so much good. I will definitely look into it. I am sure we can get it here in the UK. By the way, have you ever been prescribed propranolol which is beta blocker to slow the heart and therefore the blood pressure? We have just been prescribed this, together with Doxycycline which is for infections. I was going to throw this into a forum but thought I would ask you first. x


#13

Jaycee, the propranolol/doxy combo is theoretically supposed to slow progression of avms, and many of our facial AVMers have been prescribed this combo. At this point, evidence is primarily anecdotal rather than evidence-based; we need more studies. So, in the meantime, your experiences will be useful to all of us. Please continue to keep us updated.


#14

You are always so well-informed Dancermom. I will let you know how we get on.


#15

Hi Jaycee! Hope your daughter is feeling better. Will pray for her.

My daughter is 7 years and her AVM on right foot has ulcerated for past 10 months. We have been doing our best to heal it but no relief completely.
Anyone knows what can really expedite the healing as now the ulcer is causing pain impacting her routine on daily basis.
We have been seeing an interventional radiologist as well as treating her wound in a wound care hospital. With all this we have made very less progress in curing the ulcer. Any remedy/suggestion?


#16

My heart goes out to you and your daughter. I know exactly how you must be feeling. Sadly we have no remedies for ulcerations.

We tried embolization 12 months ago but due to the change in circulation that procedure resulted in another ulceration. We have tried so many dressings and ointments etc. We are currently using Mepilex and Granuflex dressings which have helped a little but definitely it has not got worse. Where are you? Do you have good doctors that understand AVM's? My daughter also has severe pain every day and spent most of last year in a wheelchair.

Our consultant here in London has suggested taking Propranolol, a beta blocker to slow the blood flow, together with Doxycycline, an antibiotic. She has only been taking these for a few days so we don't yet know if they are effective. I will let you know the outcome of our trial.

We are always praying for someone to have a eureka moment that will suddenly mean that AVM's can be cured and we must never give up hope.


#17

Thanks Jaycee. You said it right we must never give up hope and continue to pray that the eureka moment will come.

We are located in Houston, TX. My daughter has the AVM by birth. So far all the doctors that we have consulted have recommended against embolization since her's is a diffused AVM. Till last year it was asymptomatic until a small injury turned into a very slow healing ulcer. Her pain is very intermittent - mostly at nights and comes and goes in spurts. Right now she isn't on any medication other than the daily dressing with a topical antibiotic cream. Her AVM doctor is suggesting Sirolimus as an anti-angiogenesis drug as a possible treatment to suppress any further aggravation of the AVM. We are in the process of consulting a hematologist to understand the issues around Sirolimus. Is this something your doctor suggested?


#18

LightofourLife, have I talked to you before about the Facebook group "Sirolimus for Complex Vascular Anomalies"? It may be helpful to you. Sirolimus cannot be taken long-term, but it can be helpful for awhile.

https://www.facebook.com/groups/SirolimusforComplexVascularAnomalies/


#19

Hi there, I have not heard of Sirolimus before your message. It has not been offered to Mia. I have looked it up but I am not sure how it is relevant to us. Mia has taken herself off the Propranolol as she said that within days of starting it her foot and heel became even more painful. She is still taking the Doxycyline. Our doctors now want her to re start the Propranolol in a smaller dose. Will let you know. Wish I could tell you something positive to hold on to, until then ..... big hugs and lots of strength x


#20

Thank you so much. I will join the group. You mention that it can be helpful for a while? In our case, the doctor is suggesting Sirolimus to possible prevent worsening of the AVM although they are not fully sure whether Sirolimus would be helpful in foot AVM cases. Would you be aware of anyone with foot AVM and on Sirolimus? Was it any helpful?