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Hi all

 

A newbie here. I came across this site by accident and wish I'd known about it before. I had an unruptured right sided ophthalmic aneurysm clipped 2 years ago and was diagnosed with another on the opposite side, same place, last September. They found the second one as I was still having visual problems so they investigated. To be honest I was surprised to hear I had another one but had no obvious symptoms and was told it would be treated. 

 

I was seen in December 19 and advised a flow diversion stent will be fitted which was booked for end of March 20 which of course with the current Covid situation was cancelled. 

 

I have two questions. 

 

1) 8 months on from diagnosis I now have, and have had for some time. symptoms due to the location of the anni - vision, flashing lights, permanent head pain, dizziness. I've managed to get a video consultation with my surgeon on 3rd June after emailing him directly. I'm concerned about the development of symptoms especially as with the last one they were very keen to fix it quickly. I don't know whether to say I consider this to be urgent now? I've had no real feedback from the hospital and was just told they'd be in touch at some point. I want to make the most of this appointment so I'd like to know what others think. I believe the risks of attending a hospital are much lower now, I have no symptoms of Covid, the hospitals are beginning to see other patients. Would others push this with the surgeon? Or should I be patient and live with the symptoms and the every day fear that the anni is growing and could rupture at any point. 

 

2) I only have experience of being clipped. The recovery was long and hard. What are others experience of the flow diversion? I'm self employed now and would rather not take a long time out. I will of course if I have to but what on average is the recovery time and the level of discomfort afterwards?

 

Thank you in advance. 

 

Lynne 

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Hi Lynne and welcome...:thumbsup:

 

If the op should have taken place in March, then if it were me I would definitely push to get the op re-scheduled. Write down a list of all the questions that you need to ask your surgeon, as it's easy to get distracted and only realise when you've got off the phone that there was something important that you needed to ask. Tell them that you've got a list of questions, as most are pretty good in understanding that our short term memory is a bit shot post SAH.

 

Make the most of the opportunity to speak to him/her and also ask him about question no 2 . No question is ever too silly either.

 

The stress and worry to you won't help the symptoms that you're currently experiencing. It might also be worth contacting your GP to see if there's anything that they could prescribe to temporarily help with the flashing lights/dizziness. I suffer from occular and classic migraine and the aura/flashing lights is normally an indicator that I'm going to probably get the mother of all headaches! I was put on a medication called Propranolol and it's greatly reduced the incidences of them.

 

I wish you luck and try to keep your stress levels down as much as possible. x

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Karen

 

Thank you for your reply. I wasn't sure if I was just being OTT with it. I'll write down my questions. I hadn't thought of speaking to the GP, she is not that experienced with this sort of thing but will get the migraine side of it I would think. 

 

On the whole I'm not too bad on the stress side. I'll stop what I'm doing if I feel a headache getting worse and try to remain calm about most things. There are times though when I remember the time bomb and go a bit wobbly!!!

 

Another cup of tea!!

 

Lynne x

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Lynne , agree I would speak to GP and ask them to refer as well but definitely speak to the consultant in June 

 

i think we all are wary to be in hospital inthese times but equally I think if the procedure was deemed to require surgery and now things are not improving but actually new symptoms it’s time to have the conversation. 

 

Stent diversion is less invasive people have reported than being clipped, so through the groin as per coiling I think but I’ve not had that experience of a stent. Others may be able to reply on that. 

 

Good Luck, keep us posted x

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14 hours ago, Daffodil said:

Lynne , agree I would speak to GP and ask them to refer as well but definitely speak to the consultant in June 

 

i think we all are wary to be in hospital inthese times but equally I think if the procedure was deemed to require surgery and now things are not improving but actually new symptoms it’s time to have the conversation. 

 

Stent diversion is less invasive people have reported than being clipped, so through the groin as per coiling I think but I’ve not had that experience of a stent. Others may be able to reply on that. 

 

Good Luck, keep us posted x

Thanks Daffodil. I will let the consultant know what's going on and suggest it may be wise to get this done sooner rather than later. Even if it is just for my peace of mind. 

 

I'll report back after my video appointment. 

 

Lynne x

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Hi Lynne

 

I hope you are getting on OK.

For any emergency you will be treated if you need it.  In Scotland, there is a parliamentary discussion to agree for the restoration of non-emergency treatment. I'm hoping it is soon because my husband needs hip replaced.

I'm afraid I don't know about stents, my aneurysm burst. I wish I had known about it.

Hope you get treatment soon.

 

Fiona x

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Hi all

I thought I'd give an update as I'm getting quite frustrated. I had the video consultation with the surgeon in Cardiff which I felt went well with agreement that I would be progressed now that things are opening up again. He said that I should go in just the once, no pre op appointment etc and could expect a call over the next week regarding dates.

 

After waiting two weeks I send him an apologetic email (I didn't want to keep bothering him) asking when I could expect this call as nothing had happened. He sent me a really long email back saying he hadn't said that at all, that I would have to go for an outpatients appointment to be measured for the catheter and that I had clearly got it wrong and that he hadn't said that I would be going in fairly soon. I even made him repeat on the call that I could expect to go in over the next 4-6 weeks. We're now 4 weeks later. 

 

He made me feel really stupid, like I'd got it totally wrong. I wrote stuff down during the call so I knew I hadn't but the dismissive manner made me feel like I was again left hanging. 

 

He did reassure me though that if anything happened they were fully able to deal with the fallout! Well that was reassuring - not.

 

So, now I'm back to square one. I considered phoning PAL's but haven't. I can't quite bring myself to speak to the GP, I feel now that no one really cares about this and I just have to live with it. 

 

Is anyone else experiencing this sort of thing? 

 

Thanks

Lynne 

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