Laura's elective surgery story

I have had ankylosing spondylitis for nearly 30 years and consider myself fairly well informed about the impacts of the condition. However my recent experience with elective surgery came as somewhat of a surprise and wanted to share my experience with others.

Last year I was advised that I needed to have my tonsils out. I knew it was a fairly standard operation, so I didn’t question the necessity of this or whether there were alternatives.

Throughout the process I mentioned my axial SpA.  In particular, I highlighted my neck fusion as I was concerned my neck might be moved and injured during surgery.

During the meetings with the various anaesthetists I saw, both at pre op and on the day of surgery, I raised my axial SpA and limited neck movement. As I’ve had two hip replacements, this was more for completeness than for any particular concern over the administration of anaesthesia.

As I think is standard for all patients, I was asked to tilt my head back and open my mouth whilst seated. Even though I cannot make this movement and my mouth opening is limited this didn’t seem to raise any particular concern at first. But on the day of the surgery the registrar referred me to see the consultant.  It was at this point I was told that because of the lack of movement I would need a awake intubation. This involved a tube through my nose whilst awake (not very pleasant) instead of being unconscious.

I was warned that it is more tricky but the consultant didn’t seem overly concerned.  I think if I’d known about it before the day of the operation I would have looked into it and asked more about the alternatives to the tonsil removal.

During the surgery the tube dislodged and the operation was abandoned.  As a consequence, I have been added to the Difficult Airway Society’s register and given an alert card.  At my request my GP has also added an alert to my notes, which I understand can be accessed by any NHS hospital in the event of an emergency; although of course neither is infallible.

I am left somewhat shaken by the experience and concerned any future surgery (which obviously I hope won’t be needed) may be problematic.

I would advise anyone with neck fusion having elective surgery to make sure you speak to the consultant anaesthetist. After meeting them you should feel confident they fully understand the impact of your axial SpA. Never assume! Do also ensure they fully explain the procedure and options available to you, including any risks.