N3il's Blog

A week after getting a great result from the ‘carotid balloon occlusion test’  I am still feeling the after effects of the surgery, with the remains of a 6 inch round black bruise at the top of my left leg and still feeling a bit stiff when I walk, but this is slowly getting better and as its been half term this week and have had 2 personal chauffeurs to give me a lift to and from the station each day. Thanks Sue and Dan.

Today I have been to Guys Hospital for an appointment with Joint Endocrine & Genetic clinic. These guys will be looking to see if there are any genetic causes for the Paraganglioma tumour that I have. They are also looking into my genetic family history and will be doing tests on a blood sample. This will take about 4 months to complete. They have also asked me to take part in a research project to help them to increase understanding into the clinical and genetic features of: Phaeochromocytoma & Paraganglioma. Whilst my tumour is a Paraganglioma, this research and this might not help me, it will help the medical teams to understand more about these 2 different conditions. Phaeochromocytoma tumours are rare and only occur in 1 in 100,000 people per year and my Paraganglioma tumour is even rarer still.

So looking ahead positively, next Friday 8 November we will be meeting up with Mr Obholzer’s to review where we have got too so far and hopefully at this meeting they will be giving me a date for the main operation, which hopefully will be by the end of November. I am also feeling far more positive about the procedures that need to be done and whilst I can’t say that I am looking forward to having the operation and the time its going to take to get over the effects of the surgery. I do know they one way or other I will get through this I keep coming back to the words that a good friend Tim gave me back in September about looking beyond what I face.

These words and with the love, support and prayers of all our families and friends and knowing that my heavenly Father is watching over me every step of the way. I know I will get through these next few months and hopefully be back working in the new year.

Thanks Neil

Hi everyone

I hope you was all as impressed as I was that Sue managed to post an update on the blog yesterday whilst I was still in recovery, there’s nothing like getting the news out on the day especially when I’m not up to doing it myself, thanks Sue. I also wanted to say a big thank you to all our friends and family who have been praying and supporting us through our journey, we believe that the good results of this operation are a direct result of this support and knowing that God is in full control all the way and it’s really encouraging to know that we have this sort of support around us.

Thanks especially to friends Maurice Clarke and Mike Lacaille, Maurice took us to the station at 5.45am yesterday morning, we then missed the train as the platform changed without any announcements, which meant we was gonna be late at the hospital. So we called Maurice again and he got back out of bed and came straight over and took us straight up to Kings in his car, arriving on time. Mike then came along in the afternoon to pick us up, this was so greatly appreciated as I wasn’t feeling too good, as the scars were sore and a migrate had come on since the operation which didn’t make the journey home too good. Thanks guys.

As for the operation, Sue blogged yesterday to say the operation went very well, which it did. So I’m just gonna fill you in with some of the details. I was awake for the whole procedure with a local anaesthesia in my groin where they inserted the tubes which was still a pretty painfully experience. After the operation the surgeon talked me through what they had done and he was very happy with the results, saying that the whole procedure couldn’t have given us any better results. During the operation they temporary blocked off the left carotid artery to see if in doing so blood flow could find other routes around  my brain and they could see from the results that the blood flow was easily dispersed around the brain though other arteries. These results are positive for me, in that the risks of having a stoke during the main operation have gone down from 30% to 5%.

The main surgeon Mr Obholzer was sent the result yesterday afternoon and he will hopefully review these and set a date for main operation and I am hopefully meeting up with him again on 6 November to discuss the next steps.

So after 20 hours my groin is still tender, but I am now feeling a lot better and now just need to take it easily for 48 hours.

I hope I’m doing this properly, Neil will be amazed if I do!

Just to let all you Neil watchers know that his operation has gone really well. This feels like the first piece of good news in months! His blood vessels passed all the tests and this should be good news for the main operation. Thank you to everyone who has been praying for us today.

God is good! Sue x

With less than 24 hours to go and the operation is firmly on, even had a call today Wednesday 23 to confirm this from the admission ward!

Yesterday Tuesday 22 November I had a call from Dr Hart the doctor doing the ‘carotid balloon occlusion test’ tomorrow and he has given me a few more details about the day and he has talked through what they will be doing. I need to be at Kings hospital by 7am in the morning and I am first on the operating list for the day. The procedure should only take about an hour and hopefully I will be able to come home the same day. Sue has also been given the day off to come up with me.

The procedure will involve putting in 2 different tubes into both carotid veins in my groin, these veins run up the whole length of my body to my neck. One will have the balloon to temporary close off the vein, whilst the other with be to monitor the blood flood when the other one is closed off during the test. This test is being done because the surgeons doing the main operation, need to take out the carotid vein near the tumour and they testing that there is sufficient blood flow around the rest of my skull without this vein. This test is really for my safety and benefit and reduces my risk of having a stroke. So I can’t complain as it for my good.

I am in the hands of a great team and a great God who is with me every step of the way. So I trust that God will guide their hands and that hopefully the rest of the veins in my skull will be able to manage this extra blood flow.

So if you believe like me that God is in control and that he can ultimately heal this tumour, please pray with me that this procedure might go well and with no complications. Mr Obholzer the main surgeon will be reviewing the results of the test hopefully on the day and I am then schedules to meet up with him to review this at his clinic on 6 or 8 November and hopefully by time I see him he will have arranged a date for the main operation.

Thanks again for your love, prayer and support.
Neil

After emailing my consultant on Tuesday to tell him the test was cancelled, he wrote back to say  ‘I agree that this is completely unacceptable’. He has since been sorting out a new date and I am now booked in for the test next thursday 24 October at Kings, with the stipulation from on high that this is not to be cancelled under any circumstances.

He will then if possible review the results on the same day and then make plans for the next steps, which hopefully will be to book a theatre date in November.

So after another frustrating week, the plans are starting to happen again.

Thanks again for all your support and prayers.