I wonder, is there anyone out there like me?

[Ribrabs]

Or anyone who has advice for me... I was 46 when I had my haemorrhage from an aneurysm. It was at the back of the brain in the Cerebellum (I think that’s it). Apparently it was ‘catastrophic ‘ but I defied odds with my initial recovery - nothing to do with me or my attitude as I don’t remember anything from those days. It is now 8.5 months on and I’ve been struggling with my current symptoms for quite some time. Some of my nerves were affected and have not recovered yet so I have double vision and a palsy of the vocal chords - which means I get out of breath easily. My balance is also affected so I wobble around a bit, especially after just getting up or turning a corner.

Anyone got a similar story or similar symptoms?

[Shon48]

Yep I have something similar which is really getting me down . In June 2018 I had a 28 mm unruptured aneurysm coiled with 17 coils , an artery occluded and a stent placed. Had to learn to walk again which I still can’t do on my own. In September 2018 I had another stent placed and since then I’ve just been awful . Right side of face is frozen/ numb eye won’t close properly and a drooping mouth . I haven’t had a stroke but have the symptoms. Always so dizzy and very unsteady and I know it’s early days but I want to get better but am finding it so difficult with the dizziness to improve. I’m forever staggering like a drunk toddler. My vision has deteriorated too . I honestly wish I had taken my chances with “ the beast”. This is no life .......l.

[Ribrabs in reply to Shon48]

Well, we’ll always remember June 2018 eh? But maybe not in a good way. You do have a lot to deal with and I’m not surprised it gets you down. I wish I could give you some good advice but I can’t at the moment as I definitely haven’t found the answers. I don’t know about you but I just keep hoping I will ‘turn a corner’ or a big wave of acceptance will come over me but it doesn’t. It seems to be that things worked like that before but not this time. This is a new one. If you think you’ve found any answers let me know will you? I’ll do the same for you.

[Shon48 in reply to Ribrabs]

Thank you I certainly will let you know if I get some answers. I do think we are wanting too much too soon . I’ll never forget June 2018 but at least I saw The Rolling Stones three days before the first operation . Result !!!! It was so worth it .

All the best , Shona 🏴󠁧󠁢󠁳󠁣󠁴󠁿🤗

[cat3]

Hi Ribrab and welcome. Mine was a frontal bleed in 2011 and I can assure you that poor balance (my worst issue) is a common after effect of any brain injury. We usually try to laugh off the 'drunken' gait problem, but it's still pretty wearing at times having to concentrate on every step.

I hope you're having ongoing therapy for your nerve issues. I hear of many people's eyesight being affected although it's often rectified with appropriate measures. My peripheral vision was poor after the bleed but did improve without treatment within a few months.

And swallowing was scary at times when I was eating ; my muscles would spasm causing involuntary swallowing and, unprepared for it, I'd cough and food would enter my windpipe.

It's eased off over the years but still catches me out sometimes.

Brain injury's a strange business with all manner of offshoots ; some of which we learn to adapt to and others which abate naturally.

I hope you'll find some answers here Ribrab. Best wishes for better days ahead...….. Cat x

[Ribrabs in reply to cat3]

Thanks Cat. It’s good to know that most of your issues have abated naturally. That’s something I hear mixed responses about - some Drs think things will heal naturally and some seem to think not. I know it’s not their fault. It’s such a confusing and varied thing this brain injury business.

I’ve never heard of nerve therapy, by the way. What is that?

I know all about the ‘drunken gait’ though. I have explained a few times that I’m not actually drunk and it definitely doesn't seem funny anymore.

[cat3 in reply to Ribrabs]

mayoclinic.org/diseases-con...

Hope this helps m'dear… x

[Elenor3]

Hi

Welcome

BBC news had a link to a feature of a lady who was told she’d never talk again but eventually did and found that singing helped with her speech returning.

Fatigue and dizziness can be so debilitating, tryto get as much rest as possible as it’s still quite early days Wishing you all the best for your continued recovery. x

[Ribrabs in reply to Elenor3]

Thank you, Elenor. Your words of encouragement are so much appreciated. Thanks for taking the time to reply x

[Nettiefour]

Hi,recovery takes time,I am now 3.5 years post cooling and stent for a 14MM unraptured aneurysm and doing well apart from fatigue,take the time you need the brain needs time to heal and can improve over years. Good luck

[Ribrabs in reply to Nettiefour]

Thank you. I hope I can find the patience you have obviously found. It’s early days for me compared with you!

[swedishblue]

Gosh your post takes me back a bit. I had very similar after effects to my parietal/occipital bleed - balance being a major issue, (particularly on getting up, turning a corner). Also peripheral vision distortion. My balance is still topsy turvy if I've taken a hammering, energy wise. Its very early days for you I'm afraid. Keep persevering. In my first couple of years post-sah, I was walking miles in the countryside everyday to help wake up senses, increase my strength and stamina. I found it actually works. And If you can find a friend to go with, all the better - to keep you motivated. Its a mammoth struggle but you'll get there with perseverence - so good luck!

[Ribrabs in reply to swedishblue]

Thank you so much for that. It really helps to know people have got better over the years. I can’t really walk far at the moment due to breathing issues but I will remember that for when I can. All the best to you.

[swedishblue in reply to Ribrabs]

I'm sorry to hear about your breathing difficulties and hope they improve with time. Yes my overall health has strengthened but I still feel a wreck (with chronic fatigue). Adjustments have been easier to make than finding acceptance. We have lost who we were so you need to mourn those losses which will take some time. I didn't really address them til recently. But I'd like to suggest the most valuable support I've been able to find has been through Neuro-psychology, even a Neuro-psychotherapist (Tavistock Centre) to help you process those losses and work towards acceptance.

[Alibongo60]

Hi ribrabs, I’m similar to you I have an aneurysm had stents and coils fitted in 2012, recovered well went back to work then had bleed in 2016, further coils fitted then last year started having mini strokes ended up in hospital in Majorca,on holiday lol, it’s been found since my aneurysm is growing and pressing on my brain, I am waiting to go in hospital,to have more coils put in to hope it gives me further five years. I will put up with any side effects for an extra five years at the moment, so never give up, love Alice xx

[Ribrabs in reply to Alibongo60]

Gosh, Alice, you’ve really been through it. Good look with getting your coil. With your positive attitude I’m sure it will give you more than 5 years. I’ll be thinking about you.

[eileenleach in reply to Ribrabs]

My surgeon said he thought my positive attitude helped me get thru surgery and recovery easier x

[eileenleach]

Read up on headway pages they are very good n email them too they helped me a lot with my son when I didn’t av a clue why he was like he is after his crash x

[Ribrabs in reply to eileenleach]

Thank you, Eileen. I will do that. All the best for you and your son.

[eileenleach in reply to Ribrabs]

Thank you x

[Alibongo60]

Thank you, positive attitude all the way xx

[eileenleach in reply to Alibongo60]

My second op day the helicopter landed on roof n I half knew it was a head injury emergency n it could delay my op n I was right so they sent me home n following week I was sat waiting to go theatre again n nurse shouted they are ready for you n as I walked towards her I heard that frigging helicopter agsin n set off running, nurse said what u doing u said there not getting my bed this time run lol n she was laughing n said she’s never seen anyone that eager to get to theatre n especially not one going for brain surgery x

[eileenleach in reply to Alibongo60]

They wanted to coil one of my anyeursms n clip the other but I wunt let them coil, I told em I wanted them both clipping Cos there not getting me back in theatre months later for more coils putting in x