Nearly 1 year after diagnosis and yet to have treatment

Hey, my name is Bobby,

I’m 25 years old from London, got diagnosed with a right cerebellar tonsillar avm that’s basically next to my brainstem.

I got diagnosed and referred to St George’s Hospital in tooting (London) on the 11th july 2023, nearly a year later and I’m still yet to start treatment or even know what my treatment will be. This feels so frustrating, has anyone had experience with this hospital before? I hope I get to have gamma knife since it seems the easier option with less complications, has anyone here had gamma knife on the cerebellum? If so, what symptoms did you have after treatment? Just want this avm gone but the longer it takes the more it’s starting to worry me.

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Hi @BrainCerebellum people!

Please help Bobby if you can by sharing your experience. We had a little glitch that locked the topic until now, so I’ve unlocked it but he does need a bit of support. If you can help, that would be fantastic!

Richard

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I sent a pm because I saw it was locked I hope he is able to see it!

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Hey, @Bobby

I hope you’re doing ok. Is there a particular reason why you’re still waiting a year post diagnosis? I know sometimes with cerebellum AVMs that “watch and wait” is often considered the right thing to do: have you been doing an amount of watching and waiting?

Best wishes,

Richard

Hey Dick,

Unfortunately I’m still waiting because the NHS (national health service) here in the UK is notoriously slow. The hospital I’m at is taking a very long time to do anything :frowning:

I suppose it could be worse than when I went through the same – a year is definitely worse than I had to endure – and there have been a number of challenges to the NHS in the intervening years. I’m surprised and shocked that you’re waiting so long but as you say, the are many patients waiting for operations on the NHS.

It took me a year from seeing my GP round to actually having an embolization but part of that was her thinking my symptoms were tinnitus rather than pulsatile tinnitus, so my first 4 months of waiting were to see an ENT consultant. Fortunately, he listened to what I was concerned about and was able to diagnose my dural arteriovenous fistula with a stethoscope and he referred me for an MRI and then to neurosurgery in a different city. That took three months. Then I had to wait on the surgery schedule for a further ~5 months. But your wait sounds longer than that.

What are they telling you about your date? Have you rung them to check or chase? Is your AVM giving you any symptoms? Mine appeared to be changing quite rapidly, though I think that’s unusual, so I was really quite worried by my wait. I’m hoping you’re feeling less in danger and doing ok with the wait.

Richard

Hello Bobby,

I wonder if I could help a bit here. I have had some very brief experience with St. George’s in London but the circumstances were completely different.

My diagnosis of multiple dural fistulae when it eventually came after a whole year of my GP wringing his hands and admitting that he just didn’t know what to do and what would I like him to do, was followed by several clinicians from ENT, vascular and rheumatology disciplines becoming fixated on their own ideas and simply not acting upon what was actually obvious and serious (yes, I’ve had the ‘come back if it gets worse’ exit clause when it clearly was getting worse). It took me needing to call the British Tinnitus Foundation charity (I had severe pulsatile tinnitus), to get clear guidance that I needed to be seen by a Neurologist straightaway. I owe them a great deal.

The next bit is still very horrible for me and it’s enough to say that I had two craniotomies at Southampton Neurosurgical Unit that failed, alongside diabolical care. My relationship with my neurosurgeon there broke down spectacularly. I did ask this neurosurgeon to refer me to St George’s which he did. But…I saw the following correspondence and was shocked. My Southampton neurosurgeon portrayed me as a patient who needed a great deal of time, energy and resources (why not call me ‘hysterical’ too!!) The St. George’s neurosurgeon responded that he didn’t have time for a patient like me and as I was clearly getting excellent care at Southampton (err, no it’s fairly obvious that it was going very wrong), he was rejecting the referral.

I presented my Southampton neurosurgeon with a ‘so where will you refer me on to next?’ He then sent me to the National Hospital for Neurology and Neurosurgery at Queen Square in London. They had very different opinions about my treatment so far and I had to do one of those 180 degree scary turnaround moments in my mind. I cannot tell you yet if their intervention has worked but so far, the signs are much better.

The last thing I want to do, is to ‘drown’ you with my story but with the state of the NHS, if you find yourself left in silence, you HAVE to take ownership of your care (ugh again, I hate that phrase!). This realisation of having to manage everything is terribly hard but it does get more bearable. St George’s is meant to have a decent reputation as far as I know but they didn’t want to listen to my side of my experiences and that told me a great deal.

However, this is about you and they cannot leave you in ignorance of what should be happening to you. Ring their secretaries/care coordinators/neuro nurses at least every week until they get back to you. Just ask what is happening to your care and have they forgotten about you? Never ever give up until you understand what your choices are. I try to keep the mindset of ‘okay, if you don’t like me as a patient, please be professional and help me find a consultant who is more sympathetic and understanding to me’.

Tons of encouragement and very best thoughts,

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