I wondered if anyone has any experiences of having surgery with a General Anaesthetic since diagnosis with anti-synthetase? I need to have surgery soon, and met with the anaesthetist who admitted they had never heard of Anti-Jo 1, and she asked a colleague who shrugged and told her to 'wikipedia' it, lol! So, I am not filled with confidence! She said they weren't sure how my lungs would be affected by the gases, so she may just give me oxygen and put the anaesthesia into my bloodstream. She said I may have prolonged muscle weakness, take longer to wake up and be affected by arrythmias. Just curious to know of anyones experiences, I am on a waiting list so will probably have a while to wait until I am given a date. Alison

Hi Alison. Sorry to hear you need surgery. I did not have surgery but was given a general anesthesia for a colonoscopy. I was petrified but I did OK. I too needed to meet with the Anesthesiologist and not the one who would be available for the procedure. They gave me diprovan which I call Michael Jackson juice. It was 13 minutes just gone. I woke up and was fine, no problems. walked out of the hospital. I pray you have a very easy time. God bless. You are in my prayers, Barbara

I recently asked an acquaintance who is an anesthesiologist about any special concerns I might have if I ever need surgery given the AS and how it's affected my lungs. She said that if it was a planned surgery, she'd want to see my most recent pulmonary function tests and possibly have them repeated so they could make any adjustments if I had to be intubated. Depending on the type of surgery, say if it was upper abdomen, etc. she said I might require extra time on a ventilator to help recover. And depending on my degree of immune suppression from the medication, they would be vigilant about pneumonia and other potential infections. I say it's good to have the conversations, eduction all your doctors, find out if there or any special concerns or not and then you're set to go. Hope it all goes well for you. Kelly

Hi Alison I'm new to the site so not yet used to it. I to work at the hospital where i'm so often a patient so I know how difficult it is when you what answers but you don't want to seem as though you are being difficult. I am a pre assessment nurse and I know the anaesthetists can't know everything and thats fine. However it is their job to find out so that you can give informed consent in order for the consultant to proceed with the operation. If you have a pre assessment unit at your hospital i'm sure the nurses there would be happy to offer you some advice or maybe speak to your consultant. I am meeting with my anaesthetist soon who is also a colleage so I will pick her brains. I know they will not let me have a general anaesthetic as it can be done under local but i what to be sure as the procedure will be painful and for future reference. Good Luck if I don't speak to you before Katrina x

Hi Alison, I had an open lung biopsy and was intubated and under a general anaesthetic for a couple of hours. After the surgery the doctors reinflated my lung and removed the breathing tube and I was able to breathe on my own very quickly. This was when my lungs were at their worst. I did not have any trouble with the anaesthetic. I recovered fairly quickly from the surgery, but was in hospital for six days with a chest tube for fluid drainage. I hope all goes well with your prodcedure. I wanted to tell you that I just had another CK level taken after my second round of IVIg, and it is down to 209! My next week of infusions begins November 15. Stephanie

Thank you for all your replies, it's good to know your experiences, because through each other we can become the experts in this disease. It's very reassuring to know that there are quite a few of us that have had a GA and managed ok. I must admit i'm a bit apprehensive, and just want it over with, but this is the UK and I have to wait my turn! Stephanie!!! I am doing a dance here in celebration of your CK level....amazing news, woo hoo!!! Good luck with the next round of treatment. Hugs everyone Alison

Ps, hi to Katrina, i just read your story, what a journey you have had. I too have raynauds, ASS with mechanics hands and lung disease, and maybe sclerodactyly (although there is some debate on this, one doctor says yes, another says no). I wondered whereabouts in the UK are you? And which hospital are you under? I've heard good things about the Royal Free in London for scleroderma. I hope your meeting with the anaesthetist goes well and your procedure goes fine. Alison

Thanks Alison I'm on the Isle of Wight as you can imagine I'm a bit of a novelty. I'm seen by consultants here and at Southampton General. Southampton have been brilliant at sorting my lungs. I had a course of cyclophosphamide and I'm now on cellcept with no side effects. I have exactly the same problems with my hands they aren't sure if I have sclerodactyly or it's just the raynauds. Last year I had ulcerated fingertips which put everyone on edge. I had a problem with Nifedipine because of my low blood pressure and heart failure. The heart failure specialist in Southampton changed my dose from 3 times a day to once a day modified release. This really helped because I could increase the dose without the side effects. They also have recommended that I have iloprost infusions this year. Has anyone else tried this? Katrina x

Hi Katrina You are not far from me, I am in Worthing on the South Coast. I heard good things about Southampton; my sister was keen for me to get a second opinion there when they originally thought I had Lupus, but then my local hospital sent my lung biopsy off to London for a second opinion and I ended up being referred there. They think I could possibly have sclerodactly because I have such tight skin on my fingers, but i'm not convinced, I think it is just the inflammation in the muscles. I had terrible sausage fingers a few months ago when the disease was out of control, but they are much better now; I still can't pinch any loose skin on my fingers but they are much less swollen and less painful. I have just had my nifedipine reduced to 30mg once daily, instead of twice, because I have been getting awful palpitations, and I asked my consultant if it could be any of my meds causing it, and this is the one he decided to reduce. He is sending me for an ECG too, just to check all is ok. Keep warm! Can't believe how cold it's got recently Alison

Hi Alison Dr O'Reilly is my Respiratory Consultant at Southampton she is fantastic. She also organised for me to go to a joint clinic that she runs with the Rheumatologist so I only have to go over the once. I was getting palpitations, chest pain and extreme exhaustion in phases. Short acting Nifedipine is contra- indicated with heart failure however the modified release dose seems to be ok. I hope your ECG is ok. It's definately time for the thermals! Katrina x