Yesterday’s outpatients appointment was helpful and gave us answers to lots of questions. We now know that Jonny’s surgery will take place on 22nd March at St. James’ Hospital with both the thoracic surgeon and neurosurgeon involved. The consultant believes that the soft tissue showing up on the scans is just scar tissue and not another tumour. He believes the pain Jonny has been in is as a result of this putting pressure on parts of the spine and nerves around it. They will remove the scar tissue and open up more space by shaving some more off the vertebra affected and a nearby rib. This should mean that all pressure on the spine and nerves is removed. They may still reconstruct some areas of spine, but probably won’t need to. It will be a major operation, lasting around 4 hours, with an anticipated 5 days in hospital afterwards, during which time they will assess the levels/types of pain Jonny is experiencing post-op and hope to be able to begin to drop the pain medication Jonny has been taking for the past 8+ years.

So LOTS of hope in this and confidence from the surgeon that this operation will go well and should address the pain and medication issues Jonny has lived with for so long. That’s certainly what I will be calling for.

Things are moving again…

The neurosurgeon has said that he is happy to proceed with the surgery so I ha an outpatients appointment on the 22nd Feb at 11.30am.  I have blogged on this here.

Ok, 6 days since the last update and not much has happened regarding the upcoming surgery. Kirsty, the N.S. secretary has been off ill for a couple of days (meaning there was a further delay) but has told me that she will call me as soon as she has typed up the notes from the N.S. – so we’re still waiting, getting good at it now!

In other News, I’m not in work today due to increased pain overnight that hasn’t shifted. This is draining and I’m hopeful that it have shifted by tomorrow. Any positive thoughts/prayers welcome for this!

Thanks for following this blog – it means a huge amount to us that so many people are concerned enough to follow the journey we are on.

Still no real news today. I spoke with the thoracic team’s secretary yesterday and she told me that the N.S. has dictated a load of case work on his return from India. Once his secretary has trawled through the tapes to my case she will contact the Thoracic secretary who will, in turn, let me know what the deal is. Hoping that’s going to be at some point today… but not counting on it!

Jonny has had a reasonable couple of days with the side effects from increasing his medication settling down since the weekend. So far, the thoracic team have not been able to make contact with the neurosurgeon’s secretary, so no outpatients appointment today. Maybe next week.

Spoke with the thoracic surgeons secretary this morning and she has informed me that the Neuro-Surgeon is currently in India and his secretary is off till Monday. So there is nothing that can develop until after the weekend. I could be in the outpatients on Tuesday if the neurosurgeon can have a look at the CT scan over in India.

Going round in circles

Just a quick update on the thoracic surgical outpatients appointment today – probably better described as a dis-appointment.

We were expecting answers to some of our questions, most importantly, when is Jonny’s surgery likely to take place? Well, its fair to say that we didn’t get any of our questions answered and actually came away with more questions.  The neurosurgeon has not yet looked at the CT scans Jonny had done at the beginning of this month (scheduled a few weeks ago so that there would be time for him to make an assessment before this appointment) so consequently has not advised the thoracic surgeon on what action needs to be taken.    The registrar could not tell us anything new except to suggest that the neurosurgeon may advise that an operation is not the best way forward and there is a small chance he might suggest more medication instead.  Not really what we wanted to hear.

So we’re back to waiting.  There will be another outpatients appointment once the neurosurgeon has looked at the scans, but we don’t know when this might be – it could be tomorrow, or 3 weeks time.  Maybe then we’ll know what’s happening.  Until then, we’ll just carry on in limbo.

Click this link for Jonny’s Blog on this…

Hi guys, had a particularly bad night last night with my pain levels being really high. I have upped my morning dose of drugs this morning and, as a result, have been really spaced out. Wish it were a cheerier update today but this is the reality of today – a challenging day.

Outpatients appointment with the Thoracic Surgical Team on Tuesday 24th January at 1.30pm

Gill

Thanks for reading

We have set up this blog because we know that there are loads of you who have been walking with us and supporting us through the issues Jonny has had with his back.  By subscribing to this blog page you can receive all the updates that either of us posts.  We can keep you informed with how things are, what hospital appointments are coming up and when Jonny’s operation happens, regular updates as to his progress.  Please follow this blog if you are already a wordpress user, or if not, sign up for email notifications.  Thanks for your ongoing support.

Gill and Jonny