Best places for Aneurysm treatment in the UK, anyone?

[MikeMe]

Hi,

So background info on my first thread (healthunlocked.com/headway/... but I’m wondering if anyone knows of a good hospital for Aneurysm treatment in the UK?

I see lots of studies say it’s really important, success-wise, to go with a high-volume Nuero centre, and I read one recommendation of ideally somewhere that does over 20 operation per year (though that actual figure was just in one report I read, most that suggest anything seem to say high volume centres are generally more likely to have more experience surgeons & better success rates).. Not sure if that applies to clipping, or endovascular treatments - but I guess makes sense for both?

I’m on the NHS, not private (annoyingly had been considering private insurance about 2 months before they found the Aneurysm, but didn’t get around to it! Grrrr!).

They found my Aneurysm about 3 weeks ago, and the GP sent a referral off about a week and a half ago, but I’ve heard nothing as yet. Love that we have an NHS, but sad about wait times.

Anyway, I’ve been getting odd twinges in my left eye, which is a concern, as it’s a left ophthalmic annie (4mm). So I’m now wondering where the best place to go would be.

I’d asked my GP to try to refer me to the ‘National Hospital for Neurology and Neurosurgery’ in London… But then I saw an old thread on a different forum that seemed to have an issue with treatment there... So, am wondering if I made the right decision?

Can we even find out, in the UK, success rates of hospitals/surgeons or how many ANEURYSM treatments (as opposed to general or other Neuro surgery) do each year?

I’ve not got an appointment yet, so I think I may still be able to choose (current NHS rules state you can choose the hospital for your first outpatient appointment - NHS or even private if they do to NHS standards and fees).

So… anyone recommend somewhere good? Mainly I want to get the right advice (watch & wait, endovascular treatment, surgical? I’m hoping not surgical).

Also, I’ve read so many papers (tried to understand them, but can’t always), but from what I can tell, an Ophthalmic is one of the least likely to rupture, but I only read that in one paper. Anyone heard similar?

Thanks in advance - amazing to have a community of people here that are so supportive.

[Tracy331]

I have a month ago had clipping surgery in Leeds general infirmary they were fantastic in making good progress my surgeon mr sharik was so informative his nurse gave me a mobile number as well if I had any concerns while I healed I can't praise them enough hope this helps

[MikeMe in reply to Tracy331]

Thanks Tracey - Glad you're okay Good to hear Leeds were fantastic!

Wishing you a good recovery

Mike.

[Hidden]

Just a comment on NHS/private that my brother who used to be a medical rep and now works high up in NHS. The NHS use the patients charter which gives us a certain level of protection but private you will get a great room ect, but unless you are at the top of the money chain, because they operate on a profit basis in general they tend to use the cheaper materials thus maximizing profits. I had never thought of this but it makes sense.my brother used to supply materials to both sectors and assured me he would go NHS all the time.( At the time he was earning mega money working for a top end drug/health product company)

[Hidden in reply to Hidden]

Preston Royal did my op and I can't praise them enough

[MikeMe in reply to Hidden]

Thanks Jason, appreciate the reply. Glad your op went well, and hope you're well now

[MikeMe in reply to Hidden]

Ah thanks - that's very very interesting to read!

I guess my main concern with NHS, is the waiting times... heard some folks have to wait like, 16+weeks for the first referral.

Really good to hear re: all you said above though

[Hidden in reply to MikeMe]

I didn't get that luxury, I had a subarachnoid heamorrage, then had it coiled in emergency surgery, despite them telling me in Blackpool they thought I'd had 3 Tia's and stopped me driving twice for 6 weeks and 10 weeks, they did not pick up or do anything to check for aneurysms. Only found out when my head went bang.

[MikeMe in reply to Hidden]

Wow, sorry to hear that! Glad you're okay (hope you're okay!) now.

[Hidden in reply to MikeMe]

If your issue is with referral times, it is possible to go private for your initial appointment get a referral back to NHS.

[MikeMe in reply to Hidden]

I know that used to be the case, but I thought it had changed? Maybe I'm wrong though! Hope so, as that'd be an easier option!

[maya72]

Hi, I had extremely bad experience they ruined my life and life my children I had had elective procedure and as you worried to much checking all site especially American people make procedure and go and live normal life . I initially went private for consultation and it was arrange without moneyAnd they arrange surgery in 2 weeks and end up with epilepsy which didn’t control even. They did not want to take honestly My brain was damaged 27 mm and 22 mm. I have small children. Please please please do not go to best hospital "........."Please please please take it easy do not rush wait for your appointment calm do not worry about nothing. They will not do your procedure until it’s gonna be6 or 7 mm just watch every year if they will decide then carefully choose your surjeon even it is takes year . Do not spend money now not even pence.

Do not please like me worried running up and crying . I feel like they are experimenting to do more-money . There is nice surgeon in Kent. Usually if they doctor have doubt they will not touch it but I end up as I had big accident. I am crying nearly every day and if I go fo coil my life will be different. So sorry for my message as I want just help that you live normal life and wait for your appointment . There is nothing happen with it’s too small as I did a lot of research. it’s very rare it’s can burst .people live comfortable life. Thank you for listening me and good luck

[maya72]

I would advice not to go for initial private appointment you just gonna spend-for 10 mins 400 pounds but of course it up to you. Each case is different and the last call is yours.From my experience just wait your appointment even takes 6 month . So sorry

[MikeMe]

Maya72, thank you for your reply and so sorry to hear what happened to you!

I hope you don't mind me asking, but when you say "Hi, I had extremely bad experience they ruined my life and life my children", - Where was this? Who was 'they'? Was it a UK hospital?

Thanks again for your post. I think you're right in some ways, I shouldn't rush. To be honest, as I've only had one scan, I think I'd at least like a 2nd scan a little later, just for peace of mind that it's not grown (as 1 scan is all I've had, the one that found it - it's kind of like a snapshot, I want to know if it's changed or stayed the same etc).

I'm trying to stay calm, keep my blood pressure down, eat really well, and consider all options carefully

Thank you so much again for your post and I wish you & your family all the best Maya72. Really interested to know where you went for treatment.

Mike.

[maya72]

London uclh .Thank you very much for your wishes. When I saw your message yesterday I was ready to sleep but when I saw your message I was thinking I have to replay I was in your shoes running like a mad paying money for the private just belive you are not in a risk.And you have right to have second opinion even it takes months I wish you all the best do not worry about anything.

[RuthJ]

I had a right optical 8mm aneurysm found out in dec18 saw consultant jan19 booked in for webbing stenting device fitted. In March procedure was cancelled due to emergencies rebooked for the following week but I got oral thrush so I had to cancel rebooked and completed 23rd April 19. All done via femoral artery. 3 hours surgery 4 hours 1 to 1 recovery lying flat for 4 hours then overnight stay and discharged following day. Had bad nerve pain in my head for 4, weeks after a lot better now but still very tired and I do forget things but I feel better knowing it’s not there. I had mine done at Queen Elizabeth Birmingham. Good luck

[MikeMe in reply to RuthJ]

Thanks for your reply Ruthj, really appreciate all the folks who take time to respond, so nice of you all

Re: Being an optical aneurysm, was than an Ophthalmic aneurysm then? Just asking as mine is a left Ophthalmic anuerysm and one thing I've not been able to find out, is with it being on the actual Ophthalmic aneurysm (rather than on the ICA), as the Ophthalmic artery is quite thin, I've been trying to find if they can do a pipeline or other endovascular surgery through the femoral artery, or not. So interested to hear if yours was on the Ophthalmic? No worries if you're not sure, just wondered

Thanks you so much again for your replies

Mike.

[RuthJ in reply to MikeMe]

It was a right para-ophthalmic aneurysm. Hope that helps.

[MikeMe in reply to RuthJ]

Ah okay - I think that means it was on the ICA, adjacent or close to the Ophthalmic. I think mine is on the actual Ophthalmic.

Thanks again for your answers, really appreciated

ALSO, I should have said earlier... I'm glad the nerve pain has reduced or gone away & I hope everything else (tiredness & forgetfulness) improves in time. I read that a lot can get better in time, our brains are amazing sometimes with healing it seems. Best wishes are with you, and I hope you're getting plenty of rest and managing to not push yourself too much

Have you had any advice like keeping hydrated etc? Just wondered what advice they give in that regards etc.

Mike

[RuthJ in reply to MikeMe]

Just rest and fine to go back to work after 2 weeks but it’s at a desk. I am also 18mths post active breast cancer treatment so I have to keep hydrated for that. I am still on hormone treatment for that for another 3 years. I rattle if you shake me I’m on so many meds. I must say I do bruise really easily on the blood thinners you have to take for 6 months check up and then it’s reviewed. Hope that helps

[SAH-survivor]

Hi Mikeme

I had a SAH at the Queen Elizabeth Hospital in Birmingham. They have some of the best neurosurgeons and are one of the lead hospitals for the UK army. The after care isn’t the best so I have paid privately for that.

Some hospitals in the US are far more advanced and their survival rate is higher than the UK. It is worth doing your research...without the panic.

X

[MikeMe in reply to SAH-survivor]

Hi Thanks for your reply. I noticed that people in the USA seem to be able to find the 'best' etc hosptials for aneurysm treatments - I'm struggling where to find such info to be honest! (Any tips?!). The USA seems like somewhere that has very good surgeons and endovascular radiologists etc... But I'm guessing to go there & have it done privately would be... Expensive to say the least!

One specific question if that's okay? When you say you paid privately for aftercare, can I ask how you did that? How does that work? Was the care outside of the hospital then? I'm new to all this & a bit lost not knowing the options

Really, really appreciate your replies

I'm hoping the National Hospital for Neurology and Neurosurgery at UCHL is decent in terms of treatment if needed, but on their reviews, I see mixed reviews of the after-care there in the wards, too!

Thanks again for your replies, seriously appreciated

Mike.

[SAH-survivor in reply to MikeMe]

Hi Mike

I had a SAH so needed urgent treatment for coiling and was lucky to be near a specialist hospital. By the way, the paramedics that visited me at home said there was no need for a referral to a hospital and to go and see my GP later. As soon as they left my husband drove me to the QE in Birmingham and after a quick CT scan, I had surgery. Imagine if I had taken the advice of the paramedics! Anyway, I wanted to see my neurosurgeon afterwards as I had a flight booked for work and wanted to ask if I could fly. I found out his secretaries number from the hospital and paid to see him at a Bupa hospital. Since then, I then saw a neurologist and paid about £250 for a consultation but had to be referred by my Gp. The aftercare from NHS is not great, but I could not fault the surgery in care at all. The Cleveland Clinic are a leading Neurocentre. They also have one in Dubai. I hope this gives some help and guidance.

[MikeMe in reply to SAH-survivor]

Thanks again for the replies. So, by aftercare, was this in-hospital, or just outpatient follow-up etc?

I've just booked to see 'Daniel Walsh' (Neurosurgeon) at The London Clinic (I think he's good... hope so!) on next Friday afternoon, so I can get some input from someone sooner rather than later as although my GP referred me to the UCHL neuro hospital on 3rd June, STILL the hospital have no record of me! Chased and they did e-referral today, so will call later this afternoon to see if they sorted it yet, as I have a referral booking reference number now. Honestly, trying to keep blood pressure down when GP & hospital seem unable to communicate & I have to keep chasing, isn't always easy

[SAH-survivor in reply to MikeMe]

Sorry, in hospital was great. Outpatient not so great but that is because of the time. You get an appointment 6 months after, then 18 months after...thats it in Brum!

[MikeMe in reply to SAH-survivor]

Ahh okay cool. So the aftercare you paid for private, was like follow-up appointments and things? Not private aftercare in a hospital or with overnight stays etc, more like private consultations at Bupa with the neurosurgeon & with the private neurologist?

Sorry for all the questions

[SAH-survivor in reply to MikeMe]

Yes absolutely right!

[MikeMe in reply to SAH-survivor]

Thanks Quite surprised they only give a 6 month then 18 month checkup afterwards for something like this! Wonder what the standard is in other countries re: follow-ups? I guess it's partly down to NHS funding?

I think I'll probably do the same, and pay for some private consultations afterwards! Good that the hospital gave you his number

[RuthJ in reply to SAH-survivor]

Me too at the QE

[Audifan]

Hi, I had a web device (woven endobridge) for a 6.5mm annie fitted at the Western General Hospital in Edinburgh last November and I could not praise them enough. It is a university hospital so it has all the latest tech and ideas. They do 500+ ops per year. In respect of information, do your research then ask, ask and ask again. They tend not to give you lots of info, apart from the risks, unless you ask the q's. It is a daunting time but be positive and be glad they found it before it claims you. Good luck. Campbell.

[MikeMe]

Thanks Audifan/Campbell That's quite far away from me, but sounds very good! I'm wondering what UCHL (National Hospital for Neurology and Neurosurgery) is like, how many cerebral aneurysm operations they do each year etc - But struggling to find out!

I've started a list of questions, but will be trying to think of all of them & adding them to the list... though I'll prob only think of some AFTER I have an appointment!

Thanks again for your reply

Mike.

[Audifan]

Another tip I forgot to add was speak to your GP. Nine was very good, gave me somsome

[Audifan]

Sorry, pressed wrong button. My GP gave me some answers and some suggested questions to ask. I was more relaxed with him than the consultant that I did not know. If I think of anything else, I will give you a shout. C