Log in
Brain Aneurysm Awareness UK
497 members194 posts

Still have my battle going on x

Desperate plea to you all haven’t posted in ages sort of gave up but since last September I have tried fighting again but getting no where what’s so ever and I need any help any one can offer me because I can’t carry on living like this!!! This is ruining mine and my family lives. Apologies if I rant because I do lol but hear me out xx

December 23rd 2016 I had planned routine MRI because I kept getting headaches and my face kept dropping on right side and going into spasms (still happens to this day) Received a letter end December copy of letter to gp to say I had been discharged they couldn’t see reason for headaches or dropping of face? But added a PS Mrs ******** you have an 7mm Aneurysm! That’s how I found out.

After many many phone calls I had CT scan then loads more phone calls and complaints to pals I got my first appointment with surgeon who then sent me to have a angiogram and yes it had grown to 7. 5mm

Basically I have heard every excuse under the sun they have always said shortages of staff. In September they said I would be all sorted before Christmas it’s a Joke I am now going into my 3rd year since finding out I have this ticking Annie in my head.

So I live in Coventry I wanted to know other hospitals that you have used who you would recommend me and why to go to for treatment I have a gp appointment next week and I hopefully want him to refer me to a hospital for treatment sorry for the big ask xxx

60 Replies
oldestnewest

Hi I found out in Dec after an MRI for something else 6.8mm had appointment 2nd January with consultant spoke to his secretary today who advised surgery should be beginning of Feb but until I get the appointment I wouldn’t be 100% sure. I am attending the QE. Hope that helps

Reply

Thanks for reply I wish you all the best not long to wait at all then.

Can I ask where about is your aneurysm x

Reply

Truthfully I don’t know he didn’t say I know it’s in the circle of willis and that’s all I know. Wasn’t looking for an aneurysm, had an mri as my oncologist was worried my breast cancer had spread to my brain as I was dropping things and my legs giving way so wanted to make sure everything was ok no cancer but found this instead. New day different challenge to face but that’s what we have to do. Good luck to you. I’ll let you know when I hear anything else x

Reply

Oh gosh you do get your challenges here’s me moaning look after yourself let me know how you get on xx

1 like
Reply

Always someone out there worse than us my eldest is in her 3rd year at Bcu children’s nursing and well I couldn’t cope with all the sick little ones. Just have to do what we can to get through what life throws at us. I will let you know when I hear anything xx

1 like
Reply

You know they say where there’s 1 there’s 2 n the second one is on the opposite side of head in same place z

Reply

Took me 5 months for my first op n mine was 18 mm z

Reply

Wow big 18mm I’ve heard that you usually get more than one ☹️ have you had both surgery’s done now? How you feeling x

Reply

Yes one was 18 other was 10 n both clipped x

1 like
Reply

This was nearly 5 years ago n i recovered very well except for tiredness x

1 like
Reply

Glad you have recovered well x

Reply

Hi Ruth have you had your surgery hope your well? X

Reply

Hi I am having it done on the 26th Feb haven’t seen consultant since first diagnosed so really nervous but I was told at pre op if I really wanted to see him it would delay op and I just want it done xx

1 like
Reply

I agree just get it done good luck for 26th let me know how you get on xx

1 like
Reply

Will do xx

1 like
Reply

Hi, I’m so sorry its taking so long and fully appreciate it’s such an anxious time. I live in Wales and luckily for me as part of tests for feeling unwell in September (headaches, BP, left sided weakness) an MRI scan at my local hospital picked up 2 ophthalmic aneurysms off the Cartroid artery incidentally. One 9mm the other 4mm. I was referred to the UHW in Cardiff as they are the regional area to perform neuro surgery in October and had a flow diverter fitted on 7th Dec.

Truly hope you get a date soon

Best wishes

2 likes
Reply

Thanks for replying spinner222

I wish you speedy recovery x

Reply

I can't believe you've not been sorted out!! That's disgusting. If I was you I would be contacting PALS & letting them know the ordeal you are facing EVERY DAY & ask them to get you some immediate action or ask them WHERE you else you can. I know they did an amazing job for me so to email them (There's a PALS in every hospital) you certainly have nothing to lose. They seem to get better results for you than you will achieve on your own. The other thing is they normally respond within 24 hours with some sort of result. I feel so sorry for the situation you've been left in & for SO LONG!! I honestly believed you'd had your surgery & would be healed & enjoying your life.

Please don't let the situation get you down - Use your frustration to get some ACTION.

1 like
Reply

Yeah I thought I would of been all sorted. How are you how is recovery? Back to your old self or still working at that?! Or maybe a new you 😘

Pals done loads of times last time they pinned hospital down to before Christmas 🎄 phoned last week and same old story no staff!!! Contacted Pals again they said they were sorry!!!! Even they are fed up with me 😭😢xx

Reply

I wouldn't be bothered how fed up they were of me - Honestly I would drive them up the wall to make sure I got some action just so they would want to be rid of me. I'm the sort of person with something like this the means justifies the ends. It's a shame but a fact that if you don't make yourself heard others who are kicking off will be getting a lot quicker progress than you are and just look how long you've been waiting??? I couldn't believe it when I saw your message I was SO shocked. I was lucky that I had Hull Royal Infirmary about 18 miles away and Leeds about 22 miles away but I knew Hull was excellent in Brain Procedures. I know when the Patients Charter was introduced it allowed patients the choice of hospital. Here in Yorkshire, Hull are renowned for all their brain work but the consultant who did my operation is working at the Royal London now. He was amazing and really modest which you don't find very often in Brain Surgeons. I'm sat here in shock really as this was the LAST thing I expected to read on here. I replied to you and one other patients on this website with all three of us been diagnosed around the same time with roughly the same thing going on. The other patient had her surgery roughly two weeks after I had mine I was diagnosed in April 2017 and had the surgery in July 2017. I don't know if it's right or not but one of my customers told me the NHS are been told by the Government -or are in the process of trying to stop all clipping taking place in preference to coiling. This apparently for cost reasons. This should spur you on as well because if you had decided on the clip you need to be getting some action NOW!! I know if I was in your shoes after waiting SO long I would be emailing PALS EVERY DAY for some answers, then my MP straight after that. What have you got to lose?? You must be totally fed up of NOTHING happening. I have a feeling you are a really nice person and this doesn't help with the NHS today. It's the patients who shout the loudest who seem to get treated first. Now go and start getting on everyone's nerves and be a PEST and start driving everyone MAD like the situation must be doing to you. Your life is on HOLD as how can you plan anything with this situation just hanging over you? Your life is completely on hold until you get some action so PLEASE just be a total nuisance until you get some ACTION.

1 like
Reply

Thanks will try I’ll keep you up dated my journey started 23rd December 2016 xx

Reply

I completely agree with everything Linda said. What is happening to you is a disgrace. As you know, I have difficulties here in Glasgow also, including a surgeon's secretary being extremely rude and dismissive to me when I was chasing up MRI results. The liaison service did try to help, but eventually it was the pa of the unit manager who eventually sorted a proper consultation with a different surgeon for me. Whilst no further forward, at least time was spent explaining everything to me. I had posted on care opinion, so out there on the world wide web for all to see. Those posts are also automatically forwarded to your MP. I intend to post an update soon about my experiences. These services really do need to understand the anxiety and distress caused by long delays and lack of information. Some of them could also be doing with a wee course on how to deal with the public! Take care

1 like
Reply

Good luck to you thanks for reply. Can anyone post on care opinion? Or is that just in Scotland? X

Reply

I managed to get my surgeons secretary’s email adress which was on a letter n I literally stalked her to death for appointments, I was scared to death waiting with ticking time bombs in my head n even tried to get the ops done all in same op, not thinking about how long the ops was n how tired the surgeon would get doing the second one n that would be putting me a risk, I just wanted them doing n getting it out of the way. They decided I’d av one one week n stay in hospital to see how I recovered then go to theatre a week later n have second one, but there was an emergency that came in on the morning of my 2nd op n no hdu bed for me so I was sent home till the week after n was home 3 days later all fixed x

Reply

Hi I think I saw posts related to English hospitals as well. After I posted, the liaison service got in touch ( I think that's the same as PALS) within hours. The post was forwarded to my MP, MSPs, Scottish Government and some other organisations. Site also notes who has read post. My plan was to contact MP etc if I didn't have proper consultation with a different medic and I will do that in future if I need to. Might be worth a try, if your MP does not read it, you could flag up to them. Politically wouldn't look good if they fail to respond to a constituent in need. Good luck and please let me know how you get on

1 like
Reply

Thanks will let you know what happens x

Reply

I have a 6mm aneurysm which I'm having monitored yearly as its difficult to get out without causing problems to eg my sight and also because 7mm is the cut off point where they start to consider intervention like coiling/clipping etc. I'm being seen at the Atkinson Morley Unit at St Georges Hospital London. The consultant is very good.

My advice would be not to worry too much about how far to travel - focus on getting seen. If you need to get transferred elsewhere later it should be easier once you're in the system though if you're nearest hospital doesn't have the staff then I'd think carefully about going there.

Make sure you take someone with you when you do get your appointment so they can take in any points you miss. And get your list of questions ready.

Anxiety, I've found over the last two years since diagnoses has not reduced the size of my aneurysm nor made it go away. Just something to think about :)

Reply

Thanks for all your help advice support but guess what I have news it’s only taken two years I have date for my operation/coils I say this as I’m not sure what it is I’m having done as I haven’t met my surgeons yet!!! But my operation is 15th February xxx

2 likes
Reply

Wonderful news. Let us know how you get on

2 likes
Reply

Will do have pre op next Monday and I meet the surgeon for first time so hopefully I will find out what they plan on doing to me lol scary x

Reply

Av u had angiogram as i had to have one of them first so they knew how to operate x

Reply

The Jr at oxford was where I had my coiling done

UHCW do not do the coiling process.

1 like
Reply

What’s the hospital like kazzy4 I’ve never been x

Reply

The JR is simply amazing think 5star hotel!! Staff are fantastic food not bad either!! I was on green ward and then moved to purple The walsgrave I spent 2 nights in there first night on stepdown, second night on ward 43, not a patch on the JR, my meds were late I had to fight to get my obs done every 2 hours as I had low BP, was glad to get out of there tbh! You can request the JR as your preferred hospital despite it being in another county

What are they saying?

Kx

Reply

Oh so do you live in Coventry? They were worried I wouldn’t get the care after and from what you have just said maybe I should be glad they cancelled on me just telling me that there team are all in oxford and if needed even out of hours they would get to me and sort me out 🤷‍♀️ Coventry don’t have the staff!!!

Reply

No I live not far from Stratford upon Avon, so not too far away from you! you’ll get everything you need at the JR!

I hope they put you on green ward there, the staff are amazing day and night! It’s only a 4 bed ward And they switch the lights off completely at night!! Unlike the walsgrave!! Hated it there!! You’re right about the staffing issues too!! Pandemonium on my last day there!!! Even I felt stressed for the staff!!

I’m glad you’re not going there!!

Kx

Reply

Oh so did you have it done in walsgrave then move to Jr? Which doctor you under? Oh gosh sorry for all the questions how long were you in hospital and how long for recovery x

Reply

Please don’t be sorry

No I had it done in the jR and spent last 2 nights in Cov

Can’t remeber name of my Dr at hospital but my neuro radiologist was Dr Chong,

My Annie’s were 3mm and 5mm had coiling via angiogram

Expect to be in the JR for at least 7 days I was “repatriated” to cov as I was doing so well overall I was in hospital 10 days

It’s been 23 days since my op (23rd jan) and I’m home in recovery period

They say 6-8 weeks off work depends on the idividual

I’m doing ok still get tired easily and have good and bad days the good out weigh the bad though! Expect to be a bit wobbly on your legs, post op.

Expect tears and frustration... it’s ok and it’s normal!! I used to cry at nothing still get emotional now if I’m tired, I am having to cancel some of my jobs I’m self employed as a cleaner and have 28 jobs!! I won’t be able to go back to that amount of work for some time,

X

Reply

Sorry only just saw this post gets mixed up on my phone.

I haven’t same neuro radiologist because I’m still under Coventry Cov borrow Oxford staff I’m under a Dr Fossi Dr Amar and Mr Beltecni they are all very nice but do like to mess me around 😂

My Annie is 8mm but waiting for scan so interesting to see size now hopefully I still only have one!!!

If you have Facebook I can give you sites to join that may help you just ask

You have made me feel better about Oxford didn’t think I would be in hospital that long but if staff are ok that’s fine x

Thanks speedy recovery keep in touch to how you are getting on x

Reply

You will be in the very best hands there! I promise you!

Do keep me posted on updates as and when please

I don’t have FB or any other social media.

I’m doing ok , good and bad days still tire easily but off the nimodipine so no alarms every 2 hours to take tablets! but I’m all good and still smiling n I just trying to get on with things when I can! When I can’t I have Netflix!!

U may suffer sciatic pain after the op, but as you’ll be in the JR Cat Lamb the neuro Nurse can’t think of her proper title (bloody memory!) will go through all of this with you she’s brilliant!!

If I can help u in any way just shout

I’m here xx

1 like
Reply

Just thought how long did he say you couldn’t drive for or fly? X

Reply

Morning! Sorry I have only just seen your message.

Driving all depends on your recovery

And whether you have any on going problems that could potentially affect this.. seizures/epilepsy.. you may want to contact the DVLA just incase you get fined.

Flying.. advise against it unril at least 6 weeks after, speak to your Neuro Team

I got this info from my Brain and Spine Foundation book that Cat Lamb gave me in the JR

They have a website too.

Have a nice sunny Sunday!

X

1 like
Reply

Thanks x

Reply

I had a seizure n they found my anyeursms n was adviced not to drive n dint after that Cos I was to scared, I then had ops n was told to wait until I’d seen them at the seizure clinic which was few months later, they told me it was fine to drive but to contact Dvla n when I did they made me wait until they’d confirmed it with neuro which took months n I was given a 3 year licence n then told I’d get letter thru post before it runs out, I then was given 5 year one which Iv got now x

1 like
Reply

Hope your Op went well. Keep us posted please!!

1 like
Reply

I was cancelled ☹️ Annie to complex for Coventry to do only took them 2 years to decide this have been told middle of March in Oxford where they say I will get the after care I will need xx

Reply

Honestly you will be fine at the JR, they’re fantastic! I had my op with less than 48 hours of my symptoms! First night in Warwick hospital blue lighted to the JR, in the Tuesday 7 nights in the JR 2 nights in Walsgrave.

Are you having coiling done? Via angiogram?

Reply

Yes coiling and stent x

Reply

That’s what he was going to do today in walsgrave x

Reply

Leeds general infirmary has the best neuro in England I believe n I’m living proof they worked for me, but far from Coventry but this is where ur flown to by helicopter if uv head injuries so I’d ask to go there x

1 like
Reply

Thanks 🙏 it is a long way from me 2-3 hours x

Reply

That’s a shame as it’s a very good place for brains z

1 like
Reply

How are you? Do u have a date for your Op? X

1 like
Reply

I will be 54 next week they are now saying middle of March but I won’t hold my breath 🤔😉x

Reply

Happy birthday for next week!

X

1 like
Reply

Lol just re read I thought you asked how old I was 😂😂😂 thank you xx

1 like
Reply

Well op got cancelled and after not having and water for 7 hours and I have dry mouth syndrome I have woken up this morning with oral thrush last time it took 5 weeks to clear they have me rebooked for next Wednesday but I’m not hopeful. X

Reply

Oh no 🤦‍♀️ poor you can relate with mouth I have dry eye 👁 dry mouth 👄 syndrome as well hopefully fingers crossed for next Wednesday xxx

Reply

Haha me too xx

1 like
Reply

On the dry eye also x

1 like
Reply

You may also like...