Just when I thought I was moving away from the horrendous episode of my neurosurgical care at Southampton and making good progress with trusting my new interventional radiologist at Queen’s Square in London, I have found out today from my neuro nurse that he resigned in July and has gone. He is going to work exclusively with children and only hold a private practice for adults. He did my embolisation in May only this year.
I was meant to be having a follow up angiogram in November after the usual 6 month approximate interval. The signs are better than before compared to how the blood vessels in my face swelled up within a month after my open surgery at Southampton. I’m not so naive and trusting this time though, and know that only time will tell if embolisation has worked properly for me. I have had the ‘brain on fire’ pain, I crash into sleep only for a few hours at a time and my hair is definitely damaged (there seems to be more of my skull than hair and don’t even get me started on my scarred area of skull from the headclamp that my surgeon at Southampton has still disavowed all responsibility for). I was beginning to think that it might be better to do this in stages: have a head MRI first to get images of the overall state of my brain, assess whether there is some bright signal that would indicate a possible regrowth of the fistulae and how the existing area of loss of white matter in my frontal lobe has possibly changed. My neuro nurse then gave me the news about my interventional radiologist and all the terror that I remember I had on making the decision to get out of Southampton before they ruined my body, brain and mind completely, came rushing back. I am now meant to be having a face-to-face with the interventional radiologist who is taking on his workload, sometime around December. I have read her profile, background and history and she just seems as if she is far less experienced overall. I had not realised how much I had made a connection with the other interventional radiologist who was the first person that actually answered my (unusual? curved ball?) questions properly instead of the usual dismissal. I think I’m really devastated and I’m so tired of this all. If anyone can help me with other recommendations around the London area or beyond, I would be ridiculously grateful.
I know you’re having a tough time. To some extent you’re inferring a worse experience with a younger lady doctor without having met her. I’d have the view that there’s just as much likelihood of her being much more open to understanding you than someone who’s “seen it all before”. Honestly, I think the younger they are, the less the enthusiasm to help people has been crushed out of them by the drudgery of work!
@corrine might be able to give you the names of her neuros. She was seen at Queen Square London. And I’m happy to give a recommendation for Dr Norman McConachie at Queen’s Medical Centre Nottingham but I found him a bit less good at conversation, at encouragement, until I met him in theatre for my embolization where it was clear he had a great team around him and a fantastic rapport with his team. He was also perfectly right about all he told me but it all took time and I had to believe him for a long time before it appeared to come true.
Richard,
thank you very much for the recommendation of your own interventional radiologist. I can’t bear re-reading my post because I know that it seems as if I’m just having a moan because my interventional radiologist has decided to do something quite normal and leave to continue developing his career. I know that there are people who can’t get treatment and there I am, complaining because I have been treated by a clinician who has now gone. The fact that he couldn’t or wouldn’t give any notice whatsoever to his patients is pretty shocking to me though (am I just naive/silly?) and stinks of politics. I had a previous breast cancer surgeon who managed her retirement in stages that was far more kind and considerate to her patients and colleagues. It can be done.
So my suspicion radar is back full on. I worked so hard to get over my fixed idea of embolisation being ‘pea-shooter’ medicine. I find that I now regret so much, not trying to get a second opinion at the very outset of my diagnosis. I definitely want to be open and do my best with the new interventional radiologist but she now has to deal with her colleague’s workload and will be in a different ‘cope with the workload’ survival mindset. From the very few conversations that I had with my now ex interventional radiologist, he talked through his plan and I think he did do the ‘think outside the box’ approach.
Regardless of whether it has or hasn’t been successful, he is not there now to provide the continuity or the handover or the opportunity for me to come to terms with his work and ask questions, and that makes me feel unsafe. I feel even more unsafe because so far, he seemed to be the only person who appreciated that my previous two failed craniotomies were just not done properly. Different response entirely from my ex neurosurgeon from Southampton who said both my craniotomies were ‘perfectly good surgeries’ but who still has great difficulty in accepting the other appalling things that happened to me as an in-patient at the same time. All the managers in that department are also still pretending that I don’t really exist so I feel a bit like being on a loop, repeating that I need support and acknowledgement of the injuries that I now have.
I’m sorry for this drone/moan/whine. I think not being believed or taken seriously is unspeakably toxic and is getting into my head.
If it is any consolation, I found the neurosurgeon to be completely stuck up and almost impossible to talk to but fortunately the consultant who did my embolization to be a genuine star.
That means a great deal. I feel very much the same sick fear as I did when I was trying to get my neuro care out of the hands of my old clinical team at Southampton and into somewhere else, a refuge, but knowing that I would look like a load of trouble in the process. The only way I can deal with it, is to make plan B, C, D…Z?