6mm Aneurysm and now in the waiting game

[Deeday67]

Hi everyone, new hear and just need to let off a bit of steam, and hopefully calm my wandering, panic mode, thoughts!!

After recently finding out that I had a suspected Pleomorphic Adenoma on my left Lacrimal Gland (benign tumour on the tear gland) I underwent a CT and then a MRI to diagnose the lump and to prepare for the surgery. On the 23rd January I attended the Manchester Eye Hospital (who are absolutely wonderful) to sort out treatment plan which involves surgical removal of the tumour and my tear gland. Whilst checking my MRI, the doctor aneurysm and has referred me to Vascular Neurosurgeon at Salford Royal. When she told me, I was actually too stunned to ask any sensible questions, but at my follow up apt on 16th Feb, I have found out I have a 5mm aneurysm, on the left side (same side as my Adenoma) and the name of the doctor I have been referred to.

The eye hospital are concerned the adenoma is growing (3.5mm growth from August to December) and want to remove as soon as possible, however the anaesthetist does not want to put me under till I have seen Vascular Neurosurgeon. I phoned Salford but after 3 weeks, they have not received my (emailed) referral and was told can take up 16 weeks for an apt!!!! I have had constant headache since early October and I put this down to the Adenoma but now I don’t know (Eye hospital say the headache is not related to the Adenoma and I should keep a dairy, which I am doing).

I am very shocked and worried, and although my aneurysm is relatively small, I do have a family history of these. My mum, grandma and cousin died after a rupture and my mum’s sister, who had a rupture, still has related health issues. I know I have to wait but I just don’t know what I can and can’t do!! The hospital and my GP just said to take it easy and if I get very bad headache, go to hospital!! What does take it easy mean? Two of the ruptures have occurred during sex, so guess that’s out for a while (not that I even feel like it at the moment) and I am doing the sensible stuff like cutting down on coffee, eating healthy etc., I previously had high blood pressure (as high as 220/110) but this is now controlled with medication but keeping an eye on it.

I did make the mistake of using google, but on the good side, I did find this site. There are so many cases where the aneurysms are just left and monitored, but how do you live with this? How do I get through each day worrying about if it is going to rupture? What can I do to reduce the chances of it rupturing and what should I avoid?

Sorry about the ramblings, and all the questions, but just needed to sound off.

[Deeday67]

Sorry, the title should say 5mm (that will teach me to proof ready properly before posting)

[Andersl]

Well good to hear you'e acting normal. We all freak out when we'e first diagnosed with an aneurysm.

Can you ask the consultant dealing with the tumour to call the neuro team where you've been referred? Much easier for him to get a response.

Another option would be to contact pals at either hospital and get them to help you.

Hope this helps x

[malalatete]

Hi Deeday

As andersl said, being preoccupied with the thought of rupture is completely normal after being first told of an aneurysm.

When you have seen the neurologist you will have a better idea about the treatment/management plan that is recommended in your case.

For annies under 7mm this can be 'wait and watch', although with your family history they may decide to be cautious and operate.

In the meantime, the points that you can tell yourself to try and calm the nerves are as follows:

- you don't know how long the annie has been there, and it has been ok so far...

- there are any number of things that could happen (being run over by a bus etc.), not just to you but to any one of us. The only thing that has really changed is that you are now more aware of the limitation on your own mortality.

- Panicking about this is more likely to be detrimental than helpful. You have some big decisions ahead and need to stay calm. Also increases in blood pressure are a no-no so breathe deeply and try and keep your heart rate at a sensible level.

- There is absolutely nothing that you personally can do about this. You are completely in the hands of the medics. Whilst things we can't control are often the most scary, in a way they are the things we really shouldn't spend our time worrying about, since we can do very little to change the outcome.

I was totally panic stricken when I found out about my aneurysm and devastated when I was told it was inoperable. Two years on from a flow diverter procedure that was only partially successful I am now living with a 5mm (at last measure) annie and have a lifetime of 'wait and watch' ahead. It doesn't scare me any longer. The above points have settled me into a place where what a lady yesterday called my 'knife-edge' existence is actually quite comfortable and acceptable. In fact I consider myself blessed to know the value of every day I have.

In terms of do's and don'ts I remember when I asked my neurosurgical consultant what might trigger a rupture he said it could be anything from heavy lifting, to sex, to a sneeze. Some things you can avoid ... but not all. Accepting you always live at risk (and that everyone does, they just don't appreciate that fact) helps you to be sensible about choosing which of those risks you will live with. It's a good excuse not to carry the shopping but I don't want to spend the next 40 years without sex and I certainly won't get through them without a sneeze or two!

I hope that your appointment comes through quickly but NHS-time is different from normal time. I was told about my annie in Feb 2015. My procedure was June 2016...these things take a while, and rightly so, since all options need exploring, the risks of each need weighing up, and you need time to make a decision that is right for you and that you will be happy to have made, whatever the outcome.

Best wishes and blessings as you take your next steps.

[Deeday67]

Thank you both so very much for your replies and for the kind, and so very sensible, comments. The Eye hospital have resent the referral and have suggested I phone again tomorrow to follow this up.

I do know I am probably being a bit silly and worrying about something I can do nothing about, I may have had this a month, a year, or even all my life and I do know all I can do is keep going, try and stay healthy. I need to balance the risks of a very boring life against, doing nothing and sitting on bum, or just carry on and being sensisble. Putting on paper is probably easier than doing it every day, but it is a start and is my first step forward (with a bit of a push from you all)

Thank you xx

[Peppy2 in reply to Deeday67]

Make sure you ask all these questions I didn’t I was in shock. I found I had an aneurysm and three weeks ago had it coiled.... nobody told me anything! What I could and couldn’t do. I also was just told after it was done ;you now can do anything you used to do) before you found out about it. This was not true. I’ve always took ibuprofen for pain. And since having the coil I’ve had a lot of new pain so was taking ibuprofen. To then be told by my gp and. Hospital no you must not take it. As it can course me to have a stroke. So not even a month later I’m already finding out there will be things we can’t do because of anrysm. So if I were you get a list made and ask ask ask. As you will have a long wait. I don’t get my next scan until April next year. I no I can fly ect. But things like insurance ect I don’t no if I need to let them no. As nobody believe me tell you anything when you go home after operation.

[Deeday67]

Thanks Peppy and wish you well on your road to recovery. I have a growing list of questions but just need an appointment to see someone so I can ask them. Been told my case was being discussed by the MDT this earlier this but not heard back on what they are recommending. So very fed up with the constant headache and freaking me out as having very odd dreams (probably totally unrepeated) and for the first time in my life, started with eczema, which my Dr says is probably stress related. My boss has been amazing and found me a managed move to a new team with less travelling and no studying or examinations (I was hoping to qualify as an accountant) but this has made me realise that life is too short and enjoy it while you can and i start with my new team early may.

You have been through so much and come across as one very brave lady. Wishing you a very speedy recovery and thank you for your post x

[Peppy2 in reply to Deeday67]

Hope you are feeling less stressed and you now no what they are going to do. I’m glad your boss is good and understanding. I’m still not back at work. But got a call off boss wondering when I’m back. Hmm. I developed neuralgia after the operation also abit depressed. That’s why I’m still off. As for the coil and the operation I’ve now come to terms that I’ve coils in my brain and to be honest I at times forget about it. I had mine done February 12th this year. Anyway let me no how you are getting on. Take care

[GrannyTWest]

I find sometimes I have to push quite hard for appointments etc which some folk may criticize me for (ie trying to get to the head if the queue) but I think you just have to. Also we don't really know how long the aneurysms have been there, they could have been sitting there in tact for years. Remember not all aneurysm rupture. Keep going, stay strong.

[Deeday67]

Thanks GrannyTWest, and I did take your advice and phoned the Hospital. They was able to give me an update saying my case has been reviewed by the MDT and I would be getting an apointment to come into clinic and would be having an angeogramme with CT scan. So, although I am still in the waiting game, at least it feels like something is happening at last.

Really apprecate all the responses, thanks everyone, and hope you are all keeping as well as you possibly can xx

[Deeday67]

Well I now have an apt to see the Nero radiologist or something like that, this Saturday morning, the apt I've been waiting for but now just so worried and actually dreading it (I know, totally silly reaction) but this appointment makes it real. As long as I was waiting for my first appointment, it felt like this was happening to someone else, but now the appointment as arrived, a letter with my name on it, it makes this all so very real, if that makes sense.

I had prepared a list of questions to ask but tore it up (don't ask why, no idea) and now going to have to start all again but no idea what I want to ask apart from can you fix me. Sorry for the waffle and ramblings, and after feeling calm this last few weeks, I feel like I have taken a step backwards not in a good place right now. At least only a few more days before I see him.

[Peppy2 in reply to Deeday67]

I hope everything went well at the appointment and you feel a little bit calmer.

[Deeday67]

Hi Peppy, thanks so much for the reply and do hope your employer is understanding of what you have been through, but also how much you have acheived in such a short period of time.

I had my apointment on 7th April and although the news was a bit scarey, I felt so much at ease with my consultant. I now know the aneurysm is on the internal carotid artery and is around 7mm. I had not increased in size from my CT scan in August to the MRI in December (I was not even aware it had been seen on the August CT Scan). The consultant is recomending treatment due to location and family history, and I go for an angiogram on 2nd May. He did say he would come and see me on the ward following this and discuss the findings and the options available moving forward.

So even though i am worried, I do feel much better that something is being done.

Please do let us all know how you are getting on and do hope that you are feeling better soon x