I'm new here and seeking advice following SAH and Spinal AVM Diagnosis

[Miiimiix]

Hi Everyone,

New to this and although I suffered my subarachnoid haemorrhage in September 2014 this is the first time I've come across this site so I'm hoping to be able to seek some advice / reassurance about some of the symptoms that I'm still experiencing.

Firstly.... a little about my experience.... I was 26 when I suffered a sub arachnoid haemorrhage due to a ruptured aneurysm. I had an embolization done on that day and had the aneurysm coiled. They've since diagnosed a condition called Spinal Arteriorvenuous Malformation which they now know to be the cause of the brain aneurysm. Although spinal AVM can usually be treated / corrected via surgery I've been advised in my case that this is too dangerous and the AVM is much larger than any of my neurosurgeons or neurovascular consultants have previously encountered.

Due to this they've effectively said that at this stage it is effectively "inoperable" and have opted for leaving this and just doing regular scans and checks. I don't think they want to do anything further on this unless the symptoms worsen and they are inevitably forced into having to operate. But at this stage they feel I am maintaining a better quality of life than what I potentially could be if the risks associated with surgery were to happen.

I am however struggling with ongoing symptoms and am unsure of where to go with this.

All of the relevant NHS documentation states that by this point at 2 and a half years since the initial bleed I should have effectively made a full recovery and any pain, fatigue and other relation symptoms usually dissipate within the first 12 months or so.

But for me this does not seem to be true and I'm wondering if anyone else is experiencing these ongoing issues? I'm trying to figure out if this is still linked to the aneurysm or if this could be due to the spinal AVM and it is just something I'm going to have to live with.

I seem to go a few months where I feel great and other than a few occasional headaches I feel pretty much back to normal but then all of a sudden I seem to regress and spend the next 2 months with continual headaches (sometimes 5 or 6 times a day) which are comparable to migraine on atleast 50% of the occasions. Sometimes waking me up through the night. I feel exhausted and achy and my limbs feel heavy and stiff during this time and I struggle in general with the day to day routine.

I am currently in the middle of a month long bout of pain and this time has been worse than previous. Just yesterday I felt pain comparable to the pain I felt in the initial 2 weeks following my surgery and I'm unsure of how concerned I should be about this.

The Consultants are great at what they do but with regards to ongoing day to day management they don't seem to be able to offer any reason or solution to why I would get these ongoing instances of pain every few months.

Following the suggestion of one neurologist who said that my pain could be worsened instead of helped by using regular pain killers I have almost stopped using the pain relief altogether unless absolutely necessary and now tend to use over the counter pain relief approx. 1-2 times a week. But the headaches have worsened instead of improving and am at a bit of a loss for what to do next.

Any ideas / experiences that anyone could share? As I said its mostly just reassurance that this is normal ....... as everything I read seems to contradict my current situation and offers no peace of mind! At the age of 26..... this turned my life upside down and at the age of 28 now it would be nice to have some clarity as I (hopefully) have a fair few years ahead of me and don't want to always be so worried when feeling these symptoms!

Thanks in advance

Mia

[Hidden]

Hi Mia, welcome to this site. I don't have any experience of your problems but I am sure many of our fellow Headway people will be able to help you. You will find lots of help and support here. Do keep us up to date with how you are and lots of luck for your future.

Jan

[cat3]

I'm going to call you Mimi ; it's easier !

Firstly Mimi, there is no such thing as a complete recovery from any type of brain injury whether traumatic or acquired and the idea that rehabilitation is completed within 12 months is a very dated one. I'm 5 years on from a SAH and, though I feel I've plateaued now, I was seeing progress way beyond the 3 year point.

Our 'recovery' is partly natural healing plus the amazing process of re-wiring and development of new pathways which occurs naturally, to varying degrees, in damaged brains. But I think the most significant part of recovery is our ability to accept our new limitations and to adapt our lifestyles to fit our altered needs & abilities.

I still suffer with fatigue, balance issues and headaches and my neuro doctor tells me I have to manage these symptoms rather then worry about them as they're quite common. And it's true that too many painkillers can exacerbate the symptoms, so I tend to take them with caution.

I'm sorry about your AVM and I know surgeons always avoid operating unless absolutely essential. But you'll be carefully monitored so they can constantly review your condition. I wonder whether you've ever discussed the 'Gamma knife' procedure, sometimes used in cases where there's an inaccessibility issue ?

Please stay with us and talk to as many people as you can ; it really helps being amongst folk who care. Hope to see you around Mimi. Cat x

[Miiimiix in reply to cat3]

Hi Cat,

Thank you for your reply

They did mention Gamma Knife amongst other methods as forms of treatment for the the AVM but have said that mine is more "complex" than they've seen previously and believe that having made such a good recovery and still being so young that this procedure or any other to try to correct the AVM could inevitably decrease my quality of life instead of improve it therefore they've chosen not to do this.

I guess you're right when you say its also a mental recovery by way of accepting the new limitations and cautions I have to place on things I used to do with ease and without even thinking! It is just difficult to go from being a very active, outgoing, adventurous 26 year old with a physical day job.......... to having to rest, stick to routine, decline invitations to social events that I'd normally be a part of! Very big changes but I also have a lot to be thankful for. I'm still here and fighting!

Mia x

[cat3 in reply to Miiimiix]

I can only sympathise with younger survivors of brain injury Mia ; the sudden limitations we face are obviously so much more potent, and the losses greater.

Another person on this forum who immediately springs to min is Ben ( B_S_A ) who's even younger than yourself and has faced a very similar challenge to yourself yet achieved so much.

He's a fine example of how, if we can curb our frustration and disappointment and keep our eye on our goal, life can still be rewarding.

You already seem to have the measure of the situation Mia, and I hope that time will be your friend in helping you to develop more & more 'tricks of the trade' to overcome life's obstacles after a brain injury.

If you haven't already, phone the Headway helpline for printed information on SAH & AVM and advice on dealing with the after effects. The no. is 0808 800 2244 (free call - office hours).

Love, Cat xx

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[Miiimiix in reply to cat3]

Thankyou Cat!

You've been lovely and extremely helpful.

Mia x