Reply To: Advice on next steps?

[Starlighter]

Hi Maria. Some tough decisions to make. Must have been so frustrating to have your appointment cancelled at the last minute, after all that travel. I think you have to do as much research as you can and also trust your instincts which it sounds like you are doing.

Can I ask why Peter Barton Smith thinks there is a chance of recurrence? (at least he was honest but I think a lot of surgeons oversell excision sometimes as being a complete cure).

I’m in the process of pursuing surgery with Chris Mann-had initial appt before Christmas and telephone consult after MRI was reviewed. I have decisions to make about excision only or excision and hysterectomy. I had narrowed it down to him or Peter Barton Smith from research but only had consult with Chris Mann. I think after a few surgeries it is difficult to have faith that significant relief can be had but I feel that I have a better chance with Chris Mann than in the Irish system. I would really like to know long term stats for patients who are 2-3+ years out but hard to find this information.

I waited nearly 3 years for a joint surgery (18mths from surgery consent) with Aoife O Neill and Prof Neary (colorectal surgeon) and unfortunately they couldn’t fully address bowel situation. I haven’t had any relief and am in fact worse off than before (not entirely unexpected as most of my symptoms are due to bowel involvement I believe). This is just my experience and I am sure lots of women have had relief in Tallaght. If I proceed with another surgery in Tallaght there is a 98-100% chance of stoma, whereas Chris Mann feels the chance of this with him are quite low. Before the most recent surgery I thought I wouldn’t travel because of practicalities/recovery/risk of something going wrong but I’m trying to focus on the bigger picture.

It could be worth even doing an initial phone consult with Chris Mann (same price as in person but at least you will save on travel costs). He seems to routinely look for an MRI that is no older than 3 months so if you got this, you could maybe get a sense of what he is recommending and compare that to what Peter Barton Smith has said? Best of luck with your decision and if you have any questions about my experience in Tallaght feel free to ask.