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AVM Survivors Network

QE Hospital Birmingham


#1

Has anyone been treated at the QE Hospital in Birmingham? I have an appointment there next month, followed by another appointment the following day at another hospital? I was diagnosed with my AVM at the end of June. Thanks


#2

Morning Aquarius,

I was treated at QE hospital by Dr Stephen MacNally 7yrs ago, following a ruptured AVM and he saved my life. Stephen has moved to Ireland now but I hear the other surgeons there are also very good.

I wish you good luck with your appointment next month. Be nice to hear how you got on.

Arabella x


#3

You are so close to Atlanta that if you can, I would try to get in at Emory. Their chief neurosurgeon is top rated and an expert in AVF. And I assume AVM as well since they are so similar. Maybe even if just for a second opinion.


#4

Dr Barrow is the chief of the department. Here is an article I found on their website that you might want to take a look at. Good luck!

http://www.neurosurgery.emory.edu/news_stories/neurosurgery-top-docs-seventeen.html


#5

@Bon

This is great but Aquarius and arabella are talking about Birmingham, UK! This is part of the trouble of being an international community! :slight_smile:

Richard


#6

Thank you Arabella. I’m nervously waiting for my appointments next month, to find out more about my AVM and the treatments available. :grimacing::grimacing:


#7

Aquarius,

If there’s anything we can do on this forum to help you get prepared for what the options can be, what questions to ask, anything, just ask. We are all here to help you get a bit more comfortable about all this. We’re all going through it, or been through it.

Best wishes,

Richard


#8

Thank you Richard. The AVM diagnostic came as a shock. Ive been getting episodes of struggling with my speech, at first they suggested mini strokes but the neck scan came back negative. I was then sent for a MRI and was told that I had an AVM, was put on Keppra and banned from driving immediately. It all came so suddenly and very upsetting. :slightly_frowning_face:

I have two appointments at the start of next month, one day after the other. I’m just desperate to find out more about my AVM and the treatments available.

So glad that I’ve found this forum, I have never heard of AVMs until my diagnostic.


#9

It is all a bit shocking, I agree.

I could hear my AVM and Googled whether it was something I should worry about, or not. Eventually, I found AVMs (specifically a Dural AVM or AVF) and decided I was in trouble. I got to see an ENT specialist at first and fortunately, he decided AVM, too and I had my “OMG!” moment. A month or so later, an MRI confirmed it (as well as giving an idea of how big is dealt was, how invasive).

Depending on where you have your AVM, how big it is, how difficult or easy to get to, there are different options of leave it alone, zap it with radiation of one sort or another, glue it up (“embolisation”) or open surgery (“craniotomy”). I’ve got craniotomy in the scary category but there are really skilled folk out there and actually a lot of people here who’ve gone through it successfully. I had my AVM embolised back in April. I’m not convinced I’m 100% back to normal but the doc says he sorted it 100% and I do feel I’m getting better, getting used to how my head feels post op.

Again, I’d say that the impact of any op is very specific to you but I’ve read stories here of people who’ve had quite a struggle post op to people who feel top notch pretty much straight away.

I’ve no experience of QEH Birmingham but I can see it has a neurosurgery department. I’m in Leicester which has no neurosurgery capability, so was seen in Nottingham. I know that if they decide radiotherapy is appropriate, there is a major centre at Royal Hallamshire in Sheffield, so don’t be surprised if you get pointed in that direction.

Let us know how you get on with your appointments.

Very best wishes,

Richard


#10

Oh dear. I didn’t see that.


#11

Hi Richard, believe we have spoke before.

I have an AVM and an AVF. I went to Nottingham Queen’s Medical under the consultant, Mr McArthur, brilliant man. He performed the embolisation in December 2014 which took a total of 11 hours, in 2 sessions. I then went to Sheffield hallamshire for the gamma knife radiation in March 2015. Initially I was doing really well, starts driving again but 6 months after the radiation treatment I know have problems with my eyesight which was caused by the gamma knife. It is called Homonymous Hemianopia. This is caused by swelling and damage to the brain cells around the gamma knife area. Consequently I no longer drive, given up work and am learning to live with it. Trying to explain to people who haven’t gone through all this is not always easy. I have to tell them that even though it has manifests itself via my sight, it’s actually the signals from my brain that has caused this.

Has anybody else suffered this?

Thanks
Lorna


#12

Thanks a lot for sharing Lorna. This is exactly the sort of experience I am interested in. This site is full of people exclaiming the virtues of being AVM-free and how treatment is the best solution (for everyone?) But as a fairly negative person(at times) I am all too aware that it isn’t always like that, and that it is quite possible to end up with further deficits. My own AVM is untreated and thankfully doesn’t cause too many issues at the moment. I walk, drive, work etc exactly as I always have. I have been offered treatment but at the time even the surgeon advised that ‘do nothing’ may be the best course of action for me since there would be a huge risk of creating further problems due to the location and size of my AVM. I decided not to pursue treatment although do sometimes still wonder if this was the right decision.


#13

Hi Lulu

I’m pleased that you’re able to carry on with your life and that treatment wasn’t the best thing for you.

Unfortunately I didn’t have that option. I’d already had 2 bleeds and was told there was a risk of another when the AVM was discovered. My sight deficit is because my AVM involved the left occipital lobe. The size was 34 x 36 x 42 mms, with large superficial and deep draining veins. I remember nothing of the bleeds. I have to say that despite the problems I have now, I don’t regret having the gamma knife.

If you are well and not having any problems then I’d say you’ve made the right choice and don’t forget your doctor did advise you, so can’t be wrong.


#14

Thanks a lot for your reply and all the best. I really hope your problems have been laid to rest. Sounds as if you have been through a lot. xx


#15

Hi Aquarius, This is not an answer to your question but a question to you.

I live in Coventry just up the road from Birmingham. When I asked if I could be have my treatment at the QE birmingham the hospital said they had stopped treating avms several years ago.

So I went to Sheffield instead. I was also told by my consultant it was a choice between London, Sheffield, Liverpool and can’t remember 4th option.

Obviously I would have gone to Birmingham as it was closer to home but my consultant did not inform me of birmingham and said Sheffield was the best option and had the best reputation.

A friend of mine phoned the QE and they said they had stopped doing the procedure unless you paid private.

I shall make enquires into this matter again.

Which hospital refered you?

Kind regards,

Jason


#16

Jason,

It depends on what procedure someone is in for. Gamma knife (in your case) is undertaken in very few places in the UK. Other procedures may well be more widespread. For example, I had an embolization in Nottingham QMC.

Best regards,

Richard


#17

I had my angiogram at the QE Hospital back in October last year, next appointment not until end of April to discuss the results and treatment. It does seem a rather long wait, 6 months.

Originally I planned on opting for Gamma Knife at Sheffield but getting nervous from the potential swelling in the brain and other issues.


#18

Yes, angiogram only at Sheffield.


#19

Hi Richard, The other hospital’s I was told who carry out gamma knife include Bristol which I could not remember earlier.

Regards,

Jason


#20

His Aquarius, I had my angiography in Coventry and gamma knife in Sheffield. Birmingham QE used to carry out procedure of gamma knife but only on a private basis now I was told.

Yes it is scary the thought of odema (swelling of the brain). I was admitted to hospital several months after gamma knife with severe headaches and I was told it could be swelling of the brain. I actually went in on a Friday and had to wait until Monday for an mri. They told me that I had a small amount of swelling then changed their minds and said it was just severe headaches more than likely caused by post gamma knife treatment. I was also told that even if it was swelling then it could have been treated with medication ie steroids. Then when I had a follow up appointment with the same consultant he said their was swelling but not substantial enough to worry about or operate on.

I was warned however that you can suffer from headaches amongst other medical conditions. I also lost some hair in four areas which has grown back.

Keep thinking positive and write your questions down on a piece of paper and record the conversation with your consultant for future reference.

Kind regards,

Jason