Cassandra

[Cassandra]

Hello everyone.

 

I'm Cassandra, I'm in my 50s, and I collapsed at work in June 2015 with a sub-arachnoid haemorrhage due to a ruptured aneurysm. The aneurysm formed at the site of a really small AVM on the right hand Anterior Inferior Cerebral Artery in my brain stem - an area of the brain one of my specialists describes as 'eloquent', meaning it was a sort of 'Grand Central Station' that basically ran my entire life.

 

For 4-6 weeks prior to the SAH, I experienced a range of symptoms that could well have been related: double vision, dizzy spells, stabbing pains up the back of the head, a regular, rhythmic sound in my head and excessive fatigue and exhaustion. I was referred to a cardiac specialist by my GP but my SAH intervened!

 

I had the aneurysm embolised during angiography, but from what I understand both cranial nerves # 7 and 8 (facial and vestibulocochlear nerves) were damaged through interrupted blood supply and the procedure. I had a 'tiny stroke' which contributed to mild and temporary facial palsy which has pretty well 100% gone away.

 

I have no memory of the first 6 weeks, but I'm told that it was a miraculous recovery from a huge bleed and that I had no vasospasms. I did have hydrocephalus so got a VP shunt (the non-adjustable type which just uses pressure to modulate the flow). 

 

Sixteen months after the event, after steady incremental improvement I am mobile and can lead about a 75% normal life. I can't drive or work. The biggest issue i have (aside from the almost constant fatigue) is the continuous chronic feeling of numbness, congestion, heaviness and pressure in my head - largely on the right side. 

 

This is the one thing that makes me say ‘I can’t live like this’. My anti-depressant is helping me  manage it short term to medium term, but long term, if there is no change, it stands in the way of what could be close to a 100% recovery.

 

None of the four specialists who have handled my case have offered a useful or helpful prognosis or explanation for what is causing this numbness, congestion, heaviness and pressure, and I don’t think waiting to see if it improves over time is satisfactory.  I can't help thinking that three years down the track, with no change, a specialist will finally pay attention and say, Oh, let's have a closer look.... I'd rather look now!

 

 

My husband has done some research and I have found that there appears to be a connection between ongoing neural inflammation and ‘foggy brain’ and  a significant ‘double-edge sword’ role played by activated microglia on inflammation

 

I found two papers that support this but no-one in the medical field was impressed..

 

Norman Doidge, author of The Brain That Changes Itself and, more recently and relevantly, The Brain’s Way of Healing” talks about the role of the glia cells and, importantly, the production of toxic cytokines. He makes a strong case for positively influencing how the brain handles this activity - and others - through laser light treatment. I tried weekly treatments for 3 months, but at $70 a pop it was becoming a bit of a financial drain.

 

Anyway, I've followed this forum for a while and with the help of my husband have signed up, and am hoping to get some insights from others!

[paul99]

Hi Cassandra

 

I've just read your post and feel for you although we cant give medical advice would like to suggest that the fatigue is a normal side effect from the sah the numbness maybe permanent side effect of the sah  the congestion could have another  reason I would suggest seeing your dr and ask if he could check your sinus's

 

Please don't use the web for self diagnoses as it could lead you way off track and panic you .

 

Be careful of which sites you use if you continue. It may also help you if you could get to see a clinical physiologist to help you come to terms with what has happened and suggest routes to recovery which you may not have thought of or been offered.

 

Wishing you well Paul    

 

 

[Winb143]

Hi Cassandra,

 

I had mine in 2009 and it has been a long haul, I awoke really when shunt was put in 2010,  as before that I have hardly any recollection just vague little memories. 

 

My Daughter found this site and it helped her.  So here I am,  walking is hard for me but 60/100 yards then back goes.

 

Do not look on sites as Paul said,  listen to others stories and you will see you are in an Elite Group lol,  as we made it !!  phew !!

 

It is time that heals us and the stronger we get the more able we become, fatigue is awful I must admit !!

 

Keep drinking water as our brain needs it and my surgeon said "No Stress"  well life is full of stress so I try singing or thinking happy thoughts.

 

You will get there eventually just keep typing and giving vent to your feelings by coming on here xx  a trouble shared as the saying goes !!

 

Wishing you all the best and never give up !! Order from Win  lol xx

 

Keep Happy and sing is my answer to all ills !!

 

Best wishes

Winb143  xx  

 

 

 

 

 

 

 

 

 

[Tina]

Hi Cassandra  

 

A very warm welcome to you and your husband.

 

I also had a ruptured aneurysm brain stem and can relate to all you mention. 

 

The nerve pain down the right side of my face is always there, but the numbness has improved over the years. my nerves were damaged and my eyebrow paralysed. I have metal plates in the side of my face and head, because they had to remove my cheekbone to get to the aneurysm  to clip it.

 

Antidepressants helped with the pain but made me feel so ill I had to stop taking them. I could not function,   My SAH was eight years ago, I was clipped. You are in the first year and few months of recovery and your brain is still mending from a huge trauma. Make sure you are drinking plenty of water and try to rest up as much as you can.  You are doing really well.

 

 I still suffer from the dreaded fatigue, but have learnt how to pace myself. If I push too hard my body lets me know. I used to get so frustrated and still do sometimes that can't do the things I used to.  Be kind to yourself, listen to your body,  rest up and try to be patient, not easy I know .  Things will improve it just takes time.  

 

I agree with Paul & Win not to keep googling things as will just add to your stress. 

You have certainly come to the right place for lots of helpful information  and friendly support. I hope reading through some of the posts will give you comfort. Look forward to hearing more from you and your husband. 

 

Take care

Tina xx

 

 

[Daffodil]

A lovely post from Tina which I hope will allow you to take hope that there will be improvements, they will come and creep back into your life but you have to start with being kind and patting yourself on the back for what you are already doing and how far you have come from that bleed.

 

Hydrocephalus I think is a strange state and condition to live with and having this adds complexity to the healing from a bleed, I have talked at length with my doctors about this and wondered about how the brain compensates to its 'cleansing' system not working so efficiently. 

 

It's amazing we have this contraption of a shunt which keeps us alive but at the end of the day it is a very mechanical and clunky solution for what is appears to be a very complex and continuously adjusting state of our cerebral fluid and that can just add pain. Heaviness is something I battled with for the first couple of years. Maybe capture and note when you feel any slight improvements, or when things are worse. Maybe try sleeping a little more upright. Keep the fluids up, it's a education now to learn this new adjusted state. 

 

I met someone who had a shunt, not from a brain bleed, who said it took them three years to become used to the new operating pressure...I didn't want to hear that to be honest but looking back I can see that it was only about then that I didn't have so much of a reaction to medications, or changes in pressure.

 

It was as if it took that long for my body to realise that how it functioned was with a new level of fluid...not sure if that makes sense or just sounds nonsensical but if you can make allowance now and give your body time and space to heal then I think you'll find that you will continue to regain and improve. 

 

Good luck. 

 

 

[Louise]

Hi there

 

And warm welcome to the site, glad that you found us.

 

Yes agree too, sometimes Google is not your friend (that's what I got told)

 

Another one I too, have a shunt like you pressure adjusted, humid days are a challenge but hey here to tell the tail yay!

 

Take care hope to hear more from you soon...

 

 

 

[Cassandra]

Thank you so-o-oo much for those uplifting responses, it is so wonderful to hear your reassurances, particularly from people who have been on this journey for so much longer than i have!

 

I will start to note down any relationship between humidity and head pressure, and for the good and bad days. And water! a great reminder. Lots more visits to the loo!

 

Clearly time is the biggest healer here, I've found a great counsellor and a brilliant kinesiologist to help me on the journey. That plus mediation, a choir, community garden and Lumosity (a great brain trainer website, highly recommend it). Oh, and the balance exercises on the Nintendo Wii. Really good. Apparently walking also helps my brain re-calibrate and deal better with the dizziness and vertigo. I'm continuing physio as well.

 

Thanks again and I'm touched to realise that I now belong to a new community of SAH survivors.

[Tina]

Hi Cassandra

 

That's great you have all these things in place to help you with your on going recovery.

Keep in touch and let us know how you and your husband are doing. It is a difficult time for our family too.

Please feel free to join in the daily banter in the Green Room, we are a friendly bunch.

Wishing you well.  

 

Take care

Tina xx

[Macca]

Hi Cassandra,

 

First, welcome to BTG!

 

My aneurysm was 6.5 years ago now, at the age of 53, and was a ruptured 'left anterior communicating artery' that was irregularly shaped and difficult therefore to coil - but luckily for me they finally managed it!  I was in a coma for a week, they had three goes at a lumbar puncture, calling in a top consultant to have a 'last go.'

 

I'm still here.

 

My pituitary gland was damaged whilst they repaired me. The gland stopped producing growth hormone and as a result left me with chronic fatigue.  I was given various scans and blood tests and tests for hormones and eventually after nearly three years they identified this deficiency.

 

In the meantime, I was suffering with chronic fatigue, sleeping up to sixteen hours a day and when I was awake I just wanted to go back to sleep again and felt I had no strength in my muscles.

 

I am now on HRT, (yes you heard right, a bloke on HRT - remember the song 'Man I feel like a Woman' by Shania Twain?).  I have daily injections of Growth Hormone (a substance that athletes would be banned for). In my case though, the improvement in my quality of life is immeasurable. 

 

I still have fatigue, so it isn't the complete answer, but it isn't nearly as bad as it was - but I'm still here and my recovery is probably around 95%, so I am grateful for that - after all, it could have gone the other way.  I also still have short-term memory loss problems, but I have learned to manage these.

 

So, the way I look at it now is that life is for living and every day is a bonus, the sun still comes up, and there are people far worse off than me.  It doesn't rid me of my problems, but it does set them in context.

 

Time is the biggest healer.  Remember that the brain is incredibly complicated (although my wife disputes that in my case sometimes!) and it is at the centre of everything you do.  It has taken an enormous knock but it is still functioning well and, by your own realisation, is improving incrementally.  That is progress and is brilliant.

 

Your rationale, in your post above is spot on, so no problems there - that's good, isn't it?  Most of us are improving, years down the line, at different rates depending on our own bodily constitutions and the severity of the problems we encountered.

 

There is no single answer, but we have hope and we have belief. 

 

We also have records of improvements over time, as you are finding out now.

 

Yes, it can be unpleasant whilst we endure, but for every knock we take, the flip side is that there is also an opportunity.  That is to look at the problem in a different way, to find a new way of beating it, to re-assess our current values and way of doing things.

 

Try not to read too many of those academic papers.  Usually, I find, they are very narrow in scope, leave you dissatisfied and with a whole new range of other questions. Often, you have to look at what they don't say rather than what they do.  Their sample audiences also vary enormously (in terms of age, gender, ethnicity, socio-economic groupings and so forth, and are quite small.).

 

So, keep your chin up, keep battling and keep challenging your doctors for answers.  Don't be shy, it's what they are there for.

 

Please keep us posted on our progress and if you've got a problem, we will help you if we can -  we just can't answer medical questions. because we are not doctors, which is why I said what I did, above.

 

I wish you well,

 

Macca

[Cassandra]

Thank you Macca, and Tina, great reassurance and wow, what a story Macca - so many people, all with individual journeys.

 

I've added to mine - two weeks ago, after 5 days of increasing amounts of head pressure, drowsiness, nausea and dizziness, i woke up deeply drowsy, severe double vision, extremely unbalanced - could hardly stand - and feeling very, very unwell. My husband, suspecting a blocked shunt, called the ambulance immediately.

 

To cut to the chase, my neurosurgeon finally took my symptoms seriously and had a close look at the CT scans. He discovered that i had an 'isolated' or 'encysted' fourth ventricle - rare, but can happen following VP shunt insertion.  Basically, either the duct to the ventricle closes down, or a cyst surrounds the ventricle and stops the CSF draining, enlarges the ventricle and puts pressure on cerebellum and brain stem.

 

He whipped me into a 2 hour operation, they sliced a gap in the cyst and stitched it open (called 'marsupialisation'!) and the CSF started flowing again. So here I am in recovery mode again, but looking forward to improvements in head pressure, dizziness, nausea etc.......

 

I'd love to hear from anyone who may have had an operation like that (i.e. craniotomy, some quick surgery, and bingo, stitched up and sent off home after only a few days in the ward). What to expect...pain, pressure, other symptoms etc.

 

I'll head to the Green Room!

[Macca]

Hi Cassandra,

 

I'm sure you will get some answers.  In the meantime, try to stay positive - at least they appear to have identified one of your problems and they can do something about it.

 

Good luck and best wishes. Please let us know how you get on, we'd love to hear from you when you are able.

 

Macca

[Daffodil]

Cassandra

I'm so sorry to hear you have been through the mill again and completely knocked off kilter. I'm glad however that for your sake they caught it in good time and have now been able to make the correction, maybe after some good healing you will find this will help with the other symptoms you were having. I hope so. 

 

I can only share a second hand account of a friend who had a craniotomy and who helped me a lot post shunt surgery with calming my anxieties.. Basically make slow movements , slow to rise, slow to lower, and it may occasionally give tickly odd sensations all around the incision area.

 

She advised me that she didn't wash her hair fully for quite after surgery, for a while longer than me I believe , so nor did I post shunt surgery certainly not until all stitches were out or dissolved but then it's  less of a incision than a craniotomy. Even then I had to ask my MIL do it for me. I sat in the shower so I didn't have to put my head forward ... it certainly strengthened my relationship with her ?

 

My best advice is be kind to self, slow everything right down and just ease back in very gently, it's another brain surgery. Use what helped you before and If in doubt phone and ask and maybe an email to the consultant or surgeons PA to ask if there is any specific advice or follow up..? 

 

Take care now 

[Cassandra]

Thank you again Macca, and to you Daffodil, brilliant advice, thank you for the insights. you've nailed one of my issues - impatience - and will make an extra effort to keep it slow. Frustrating but it's a life lesson, I guess.

 

 

i'll keep in touch