Hello everyone. I found this forum and it looks like it could be of real help.
4 years ago my wife was diagnosed with an AN and, following 6-8 months of monitoring, was given radiotherapy (at Addenbrookes) to treat it.
To cut a very long story short, she has suffered distessing symptoms ever since. She was told that the tumour was "stable" after follow ups despite the fact that there was still some growth. I suppose that there is a margin they work within to determine whether it is stable or not..........
Last week she was advised that surgery will be the best course of action but it is not urgent. The specialist believes that the tumour will continue to grow slowly and advised the surgery is done soon in order to alleviate the symptoms she suffers from. He believes this will improve her quality of life.
I am absolutely determined that she has the very best surgeon to do this, wherever he or she may be. We will find the money to do it. I have read research which states there is a clear correlation between a successful operation and the number of times the surgeon has carried out the procedure. This is logical but the research is proof it is true.
So, my VERY big question is who is the right person. I keep seeing Queen's Square appear as a centre of excellence but, if so, who would be the best surgeon to see for a tumour which has already had radiotherapy.
Is there another centre / surgeon within the UK or abroad we should be considering?
Any advice anyone can give would be hugely appreciated. THANK YOU!!
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WhBoSc
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For a lot of people it is the area you live, their nearest but there are quite a few areas of excellence for skull base surgery. I think Queens square a s Addenbrkkksthe Salford one I’d also extremelly good but you could check them all out
Hi You can talk to BANA uk and they maybe able to offer there advise as to the best.However from my experience the two best in the U.K. are Cambridge and Salford. Salford are probably leading it in the U.K. , but Cambridge is probably the second and they both work very well.
I had mr McFarlane at Addenbrookes and he is a very good surgeon and has done many of these operations.
Mine was a very large tumour that was vascular. They had to deal with many blood vessels before trying to remove the tumour.
My operation was 17 hours, many doctors would have stopped and planned a second look surgery but this doctor wanted to try debulk as much as they could do.
My local hospital Birmingham QE couldn’t do my operation due to covid and NHS England had to step and advised Cambridge could do it. My neurosurgeon advised that he wouldn’t have been able to do a good job as good as Mr McFarlane at Addenbrookes.
If you don’t feel like Cambridge is good enough for you then perhaps see if Salford in Manchester can take over the care as they are supposed to be the best in the U.K. , and both Cambridge and Salford are main contacts for advise from some European hospitals and have had people travel from Europe to them for treatment.
Hi Steve, I too have been referred to Addenbrookes from the QE as the wait for an op is in excessive of 12 months there now. How long ago was your op? Did you have to wait long for treatment after being referred?
My op was april last year right in middle of covid.
I was diagnosed 21.01.21 with 4cm x 2.5cm vascular AN.
Due to covid it was a struggle to get my op as they prioritised Covid patients in the ICU:
So it was 2.5 months after my diagnosis that they operated at Cambridge.
I am shocked QE has not operated, I know someone in work who to was diagnosed with a different benign tumour at the back of the head in July and within 2 weeks they operated on there tumour.
Many questions to be asked about the QE.
I am under Mr Kay and only got referred back due to being easier for scans on follow ups etc
It’s just over 2.5cm, but is compressing the brain stem so needs to be operated on. I was diagnosed at the beginning of June & was told originally that the waiting list was 6 months.
I’m guessing you was under Mr Kay at the QE, do you know who you’ll be under at Addenbrookes? Mr McFarlane is one that’s very experienced there. Have they gave you a date ?
Patrick Grover,was the surgeon my wife had at Queens Square he was excellent as was the whole team. He removed a huge 30mm tumour 16 months ago. We can not praise this hospital enough .
That's interesting. I am under his team but didn't get to see him only Dr Darie I think her name was....a registrar I think she said she was? She said she believes all these tumours grow only 1mm per year. This did concern me as I had done such extensive research - looking at lectures in USA by top neurosurgeons. The USA surgeons say that there is no possibility of predicting growth rate. You might have a tumour that doesn't grow for years and then suddenly grows. You might have one that grows rapidly then stops growing etc etc. It gives me some relief that your wife had a good experience though. I guess most important is the actual ability of the surgeon as a surgeon not as a communicator!
Hi I can't offer you an answer to your question, only to agree with you about the best and most experienced surgeon. I had a professor to remove my Thyroid and it's never caused a problem. Older and wiser sometimes is good. I know that there are several in the US but also others in the UK. I hope that you find one soon, good searching.
sorry but no. I don’t recall the team. He has a tight team so guess if you get him, you get the team. I got treated through BUPA at the National Hospital of Neurology and Neurosurgery.
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