I have crest and had a foot op July 2011 and it has not healed.In time my toe will have to be amputated.Has anyone had experience of this.

[smiler2012]

[Hidden]

I havent had an amputation, but i do find a problem with healing. I also have crest and have just been diagnosed with hypothyroidism which i understand can contibute to poor healing, so it might be worth getting this checked. The trouble is with raynauds it does present problems with healing, so hope you are keeping as warm as poss X

[smiler2012]

Hi inkedup ,thanks for your reply.I will ask to be checked for hypothyroidism, although I do have blood tests regularly and this has never been suggested. I was diagnosed 12 years ago with crest and have all the relevent symptoms.My main problem is the healing. I have had 2 sessions of iloprost, each for 9 days with 6 hours treatment each time.I take Nifedipine which has really helped with my raynauds and I do keep as warm as I can.Thanks again for taking the time to reply to my question and I wish you well.X

[TwiceShyNow]

Before I was ill, I was a nurse, and we would apply a wound vac to area which lacked proper circulation to heal, and it can work wonders. Has this option been offered to you?

[smiler2012 in reply to TwiceShyNow]

Hi TwiceShyNow,thanks for your reply.I had a second op in February this year to remove screws from the first op.Negative pressure treatment, I think this is the wound vac you are referring to, was tried for six weeks but was unsuccessful.I discussed with the plastic surgeon if we could try this again but he said it would not help.I was also told I could lose my foot and I feel the decision to delay amputation is so I am able to keep the quality of life and independence for as long as I can.Nurses are fantastic support when having treatment and you are continuing in that roll evan though you are ill yourself.Thanks X

[Hidden]

I have heard that pawpaw cream which you need to order over the internet, is a little miracle cream for healing!

[smiler2012]

Thanks inkedup for this information,but my problem is that the outside of my wound heals but it does not heal from the inside.It closes on the surface but continues to track upwards or downwards inside.I have dressings twice weekly of aquacel ribbon packing and mepore dressing.I am allergic to most other dressings and creams,and I have to keep the wound open so as not to encase any infection. I will look into pawpaw cream as I have heard of it before and if my surgeon oks this I would be willing to try anything.I do feel that the decision made previously re amputation will be the end result although I hope that will be in the long term.Thanks X

[smiler2012]

Hi everyone,I have not been on this site for a long time.I had a further op on my right foot and after lots of treatment and patience from my surgeon and care nurses it has healed.

I am waiting to have a toe amputated on my left foot bit this should not be as troublesome as the other foot.I will have iloprost treatment afterwards and hopefully a successful outcome.

I have a wonderful surgeon and care team.I go on the same ward whenever I need iloprost treatment so the nurses know and it is like my second home.

I am looking forward to reading how others are doing.