Post Brain Surgery Anxiety

[Ash02]

Hi everyone, I’m new here and just over 9 weeks post Brain op. I had keyhole surgery to drain a tangerine size cyst in my 4th Ventricle caused by Hydrocephalus. I’m thankfully now recovering well and living independently again with my housemates in London. Im sure I’m not alone in this but I keep constantly waking up in the middle of the night with panic/anxiety that something is wrong. The slightest sign of a headache, tinnitus or unbalance and I feel like somethings wrong, I stress so much I can’t get back to sleep is this normal? The new lockdown hasn’t helped as I’m due a follow up MRI but it’s all been delayed. I know I should be feeling grateful as I’ve come out of this pretty well, all things considered, but I’m constantly worrying about what’s next and if I’ll have to go through the whole thing again! Any advice or just to chat to people who have been through something similar would be much appreciated! Thanks, Ashleigh (25 y/o F) x

[Marnie22]

Hi. I can strongly recommend the Headway helpline. They are brilliant with this sort of thing. Their number is 0808 800 2244.

I do hope you find help, it sounds very difficult.

I can also recommend looking at Caroline McCready's videos on YouTube. They are really helpful.

Take care. 🙂🌸

[Ash02 in reply to Marnie22]

Hi Marnie! Thanks so much for your helpful suggestions, I may give them a call this week. At first I thought it was a normal part of recovery but it’s starting to really get me down and I don’t want to bother my family with any further worries (they’ve had enough of that the last few months)!

I will certainly take a look at her videos. Thanks again for your help and take care! ☺️

[Marnie22 in reply to Ash02]

Headway have been amazingly helpful to me. I wish you all the best. 🙂🌸

[cat3]

Hi Ashleigh. Any procedure on the brain will leave side effects such as imbalance, headaches, dizziness, confusion etc., and 9 weeks on from surgery is very early days in terms of recuperation. Tinnitus too is often reported.

I had a coiling procedure after a bleed on the brain and the headaches seemed interminable, but with time they became less frequent and less severe. But you may be left with after effects for many more months ; we don't always escape the long term effects but we learn to manage them.

On discharge, my neurosurgeon told me to go home and live my life, and that I was no more likely to suffer a repeat issue as anyone I pass in the street. That was 9 years ago. So when you wake feeling anxious, try to focus on how lucky you've been to be back safe and sound with your housemates !

Brain rehab is a long, drawn out business, so give your after effects time to improve or subside m'dear, and be patient whilst your brain recalibrates. It's only when looking back after 6-12 months that we see how far we've come.......

All best wishes. Cat x

[Ash02 in reply to cat3]

Hi Cat! Thanks so much for your response. Sorry to hear you went through such a tough time too. I am trying to learn what is normal for me, I’m sure over time I will learn to manage these things.

Wow, 9 years since op is amazing! I do try to be optimistic, I know I’m super lucky so will try to remember this each day and be thankful for the second chance I’ve been given. ☺️

Thanks again for your kind advice, just speaking to people like you who have been through it is so reassuring! Best wishes, Ash x

[Glenquoich]

Hi Ash02, welcome to the forum from another recent 'newbie'.

If I could give myself advice back in '84 when I had my TBI, it would be this;

Be gentle with yourself, you've just had pretty invasive surgery on the most complicated object in the known universe. Recovery and improvement are going to take time and at different rates, 7 forward-6 back, then 2 forward-3 back, followed by 3 forward-1 back and so on.... but the direction of travel over time is slowly forward. Rest as much as you can, turn your bed into the greatest place on the planet and sleep as much as you want because that's when the healing happens. Drink as much water as your bladder allows. Don't be too anxious to return to life before your surgery. The world can wait.

Sometimes it might feel like you've been buried when in actual fact it's just the seed of the new you that's been planted.

I wish you well on your journey.

[Ash02 in reply to Glenquoich]

Hi Glen, Thanks so much for your welcoming response and great advice!

I sometimes forget just how surreal it all is, we have all been through a major, life changing event and I definitely need to give myself some time to process that. I’m glad you said about sleeping lots as I’ve been doing a LOT of that, at least we’re in Lockdown so I’m not missing much!

Such a lovely way of putting it, I can only grow from here. I hope to be able to give new TBI survivors the same excellent advice you have given me when I am more recovered! Thanks again for taking the time to reach out, take care, Ashleigh ☺️

[lcd8]

Hi Ashleigh. Good to 'meet' you. I have a brain AVM that causes recurrent hydrocephalus since it blocks the flow of CSF from my 4th ventricle. This must be really awful for you, especially since your surgery was still pretty recent. I'm glad you are recovering well but can understand your anxiety. I too am a fairly anxious person and I believe anxiety is associated with hydro anyway. I find it helpful to practice relaxation techniques, deep breathing and yoga. I've heard that meditation is good also although I confess that I've never got round to trying it for myself. In addition try to be kind to yourself, eat sensibly, take exercise but don't put too much pressure on yourself. I'm so glad you found this site and hope it provides some comfort. You are definitely not alone with this (as I once thought I was) and there's always someone to talk to here. Best of luck.

Lulu x

[Ash02 in reply to lcd8]

Hi Lulu, thanks so much for your lovely message. Sorry to hear about your recurrent hydrocephalus, that must be hard too! I have actually been trying out some meditation and Yoga this week to help with it and have had mixed results so far but trying my best to stick to it. 'Balance' (meditation app) is offering a free yearly subscription for anyone interested!

Thank you for your suggestions, I will be sure to try all these things. This site has definitely given me some confidence in knowing i'm not alone. Cannot thank everyone enough for their kind support, it's really helped.

Take care and thanks again,

Ashleigh x

[lcd8 in reply to Ash02]

You're very welcome. Take care. x

[Shreds]

Welcome to the hydrocelpalus club!

Waking in the middle of the night...I get used to it. Cool down, glass of milk and back to sleep.

My neuro warned about anxiety and stress so take comfort you are not alone. Did they fit a VP shunt or similar to prevent fluid build up? You may not have needed one, but try to worry less. The guys who do this stuff are pretty skilled and know what they are doing.

No doubt you will get follow up in due course and a CT scan as a final check all is ok. But for now try and chill. They have done the most difficult bit!

[Ash02]

Hey Shreds, apologies I've only just seen your comment but great advise! Turns out the seizure medication I was on (keppra) for pre-caution measures was quite responsible for my low mood and anxiety but I sill creeps up every now and then.

No full shunt for me but I have one inside my head should they need to fit one later down the line. Certainly had the experts on the job and over a year since my op I'm feeling a lot more confident in myself and my abilities. It's been great being a part of this community - crazy how many people have these same issues.

Hope you're well! Thanks again - Ash x

[Esparrow]

Hi Ash02 -- I can tell you that I too have been having the same experience after having a craniotomy for a subdural hematoma about 8 weeks ago. I too came through pretty well physically, but mentally and emotionally has been quite difficult. I too worry that I might have to go through the same thing again.I don't know that I can tell you what to do about it -- for me it comes and goes and I try to have faith that things will be ok. Because physically, I'm doing pretty good.

So as others here have said, better than I, be gentle with yourself and give yourself time to heal.

Wishing you all the best!☀️