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General
1

Hi All and once again welcome to all the members of the BAF United Kingdom site, your comments and discussion points are appreciated as they give a unique insight to UK related issues.

A quick update on me and my 5 little buggers, 2 coiled and stented (1 x Basilar)

(1 x Opthalmic) and the scan and angiogram from last month show that they are both occluded, (sorted)

The other 3, 2 right side MCA's 10mm and 5mm and 1 x left side MCA 5mm still there, but no change in 3 years in size.

I have never had any symptoms of these things, until recently, but then again these symptoms are perhaps un-related? Any comments appreciated!

I have developed over the last 6 months or so, severe vertigo, also double vision on occasions, this can happen at any time, a few times a day and only when standing or walking.

Another symptom is occasional dizziness when I move my eyes from one direction sharply to the other direction, as in when hearing a loud noise and moving my eyes in the direction of the noise.

For me Vertigo is particularly strange as I have jumped out planes and climbed mountains the most memorable being Kilimanjaro, but then again that was a few years ago!

My immediate thoughts when this started was, could it be related to the coiling and stents done last year on the Opthalmic aneurysm, ie. a nerve being pinched?

Any way, on Wednesday I see a very special person who works closely with my Endovascular surgeon who is a specialist Clinician Scientist and Honorary Consultant Neurologist at the John Radcliffe Hospital in Oxford, UK. Dr Ursula Schultz, visit her site at http://www.esmint.eu/about/people/ursula-schultz for more einfo!

I will keep you all informed on this appointment if appropriate.

Kind Regards

Martinc

2

Martin, your life sounds fantastic! I’m glad you will get to meet Dr. Schultz. What a gift! Hope you get some info on what’s causing the inconveniences.

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Thanks, I will keep you all updated, as I am curious to find an answer, time will tell, but all is good. Regards

Martin

4

Hi Martin

My names Susannah and firstly I would like to say thank you for starting the UK BAF as I joined the original American site earlier in the year and even though it is very helpful and informative, the uk desperately needed its own site for the people here as people can relate more to areas and hospitals and surgeons that they are familiar with etc.
Unfortunately like yourself I have several aneurysms, one of which ruptured on my brainstem, a giant of 25mm which caused a SAH and my life was saved by Queens hospital in Romford which they coiled with platinum. I then changed hospitals to Charing Cross not realising I was jumping out the frying pan into the fire! They found the 3 further annies, 2 mca’s and a pcom after several mra’s and a groin angiogram which was horrendous as I was kept awake for the 2 hour procedure. Then came the problems, cancellations, not being able to get appointments for months for your results or to see a member of the team, secretary was never available and registrars never returning calls, the stress was unbelievable. For such a major hospital in the heart of London it’s shocking it does not even have a proper neurology clinic, it is just tagged onto the end of the fracture clinic and you end up waiting for hours after your appt time in a dingy corridor. I was constantly told if I had private medical insurance they would have me in tomorrow! The surgeon allegedly put me on the list for my surgery on the left MCA but after months of waiting the secretary told me I wasn’t even on the list & 2 theatres were out of order. I then went private to Nuffield for a private CT with contrast dye for £600 & was told the left MCA had grown & was dangerous. I then took matters into my own hands, told my GP who advised me to move closer to Cambridge to get under Addenbrookes who I am very happy to report is an amazing hospital and done all their own scans immediately and I am now under a brilliant surgeon who told me the left MCA has now got a prominent daughter aneurysm on the side of it & he offered me open surgery within 4 weeks as it is not amenable to coiling, I had to decline the offer as I had not moved into new house but I will be seeing him in 2 weeks & he wants to operate before end of January. I think it’s really sad that patients have to go through such stress with their hospitals & treatment when we are already going through the worst experience of our lives & looking at the American hospitals, patients over there seem to fare far better than in the UK. On a totally different note, do you have to join the British site separately or would I automatically be a member from the American site? If so, how do I join?
Sorry for the rant Martin & thanks for listening.
Susannah

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Susannah, this is the UK group -- it is not a separate site, but a subgroup of the overall Brain Aneurysm community. So, you are already in it and a member. You can bring your own discussions in the group if you have specific questions.

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Hi Susannah

I am glad that you finally got sorted at Addenbrooke,s they are good and have a great reputation like the JR in Oxford, where I am under.

If you ever have a problem with appointments or indeed a complaint, you should contact the PALS section in the hospital and they will do everything to sort the issue out.

I wish you well with your appointment in January, kindly keep us posted on how it goes.

Have a wonderful Christmas

Kind Regards

Martin