Tracking SAH Recovery with aquired hydrocephalus; my thoughts

[Daffodil]

I'm now at the 15 month mark since my SAH and it's 11 months since I had my VP shunt placed. I'm just sharing and getting off my chest some of the latest goings on in my medical life.

 

One of the harder things to manage in my upsy downsy recovery is knowing sometimes what are the symptoms of the bleed recovery and what are hydrocephalus pressure effects. I had hoped to go to a Hydrocephalus clinic and share some of the facts here but it was weekly for 8 weeks in London, just couldn't manage it,or afford it. Another time maybe

 

Sometimes the effects of hydrocephalus are so confusing when combined with SAH recovery.. I have them all written down so that I or my hubbie can tell.

High pressure gives me tingling in hands and feet, extreme lethargy, eye pain, neck pain , I lose words and have all over head headache but it is better when you're upright ... And I can't go too high pressure, that's where the shunt comes in but tolerances can change and what was my high tolerance can shift over time.

 

Low pressure makes me very cold, , makes my head feel heavy , dizzy and nausea and it's better to lie flat with sunglasses on and ear plugs in.

Throw regular weather changes into the mix and I don't know whether I'm coming or going some days, not easy.

I've been up to the big smoke today for my regular clinic check up at hospital, this is something that will continue now as hydrocephalus is for life so I'm never getting discharged off their books. A strangly comforting yet odd thought. That said it was good to talk through recent events with people who know me after especially as they decided I needed that LP and scans last week.

 

All my scans and results show zero change in the coil or annies but a slight change in ventricle size. They discussed that as my brain is still healing from all the blood and subsequent hydrocephalus CSF pressure effects ( i had a level 4 bleed I found out today , knew i had a bad one but that was news to me) It could be that my CSF might now be absorbing more by itself which is good but it will upset the wonderful ecosystems in the brain thus sending some pretty intense signals.. Makes sense and they admit they don't really know for sure. They do think it's normal to feel this way after SAH plus adapting to hydro. I do know that right the way through this often the weeks I have felt the worst I can then go on and track that I must have had some healing at the same time as I then go on to have a good run.

 

The hard part is that I am super sensitive to pressure changes ( wouldn't you just know it). Not fair eh? I can handle many things i have learnt but take me low pressure and I'm flat on my back beng sick into a bucket. What this all may mean is another adjustment on the old shunt setting, our plan is to wait out another two weeks and if my high pressure symptoms don't fade then i will be heading back for a pitsop to get that done. Mind you that's why they gave me an adjustable one thank goodness as I think my surgeon realised I was a sensitive bunnie.

 

It's reassuring to know nothing is wrong with the coiling or the Annie's. Equally I am comforted that how I am feeling ( rubbish) is normal even though it's no consolation. I have to slow things down again a bit more and see if I can weather this change out but it's not life threatening just a bit scary at times.

They are going to send me to see a neuro physiologist though so I will await that with interest. Oh and MRI in a few week. London in June is lovely though. That's something eh.

[cheezo]

Hi Daffodil

My goodness what a time your having- surprisingly though you sound quite up beat (maybe im reading you wrong apologies if so). I hope they get you sorted as best possible soon - poor you.

Do you have days where you feel fine and days where uts just ? Hope you have a good one today

Lesley xxx

[Daffodil]

surprisingly though you sound quite up beat xx

Thanks Lesley, yes I try to stay upbeat, don't always manage it but I normally head back uphill as much as I can after a knock back . Good to get stuff off my mind and a trouble shared and all that...

[Louise]

Daff weather is a right 'thing' with this isn't.

neuro phycologist that's good....

take care

[Winb143]

Daffers,

Passes Daff my shunt, no give it back quick lol.

Had a few tired days Daff also but feeling a bit better now but neck and head hurt.

That's what we get for joining the Shunt Club xx

Be Well Daffers

Love

Win xx xx

[cathmat]

Hi all long time since I posted but im back in work full time and the time just goes . I think its good to share experiences just to realise some of the things we feel are normal .

I joined the shunt club in feb this year as you all know .(im not a sensitive soul though daff weather doesn't effect me ). For me this has been nothing but a positive experience in fact I would go as far to say the shunt gave me myself back . I still have ringing in my ears and will vomit suddenly if I m moving about a lot but the change in my general well being is astounding. everyone comments how different I am and that "im back" . I remember you told me that my energy would improve and my motivation Daff but even im amazed how well I feel . I feel for you with your pressure changes though because I remembered how awful I felt after my last LP , keep your chin up you always manage to inspire me with your positivity. Thank you all don't know where I would have been without you all x

[Desy]

Hi guys, curiosity has got the better of me over this shunt thing so googled it and came up with a lot of medical jiberish lol

Does a shunt be fitted if the coils fail and small amounts of blood leak into the brain or is it to do with the fluid between brain and skull that needs regulated and if so do you do it yourself.

Also why as in daffodils case was the shunt fitted four months after the SAH and what are the symptons as she says she gets confused between the side effects.

As I say just curious but also glad I don't need one mind it does appear to make the quality of your lives better

Cheers desy

[Winb143]

Hi Desy

I had a shunt fitted as I had ventriculitus (can never spell it) then sepsis once all that was cleared my Family

noticed I slept a lot and they worried (None of this I new as I was totally out of it).

Surgeon said it was hydrocephalus, he said an op was the answer to have shunt put in but hubby was scared I might

get more germs. Glad he was persuaded to go ahead with the shunt as it was like someone turning a light on.

I remember saying to the nurse "If I die tell my Al and my Sarah I love them" she said she will stay with me and be

here for me when I wake up. she said "I wont let nothing happen to you" then hey presto !.

My hubby came up and She said to my hubby "Win has sung to me today". She was a lovely person but never got to tell her so.

WinB143 xx

Common name for hydro is water on the brain lol and I do shed a few tears, laughing and sulking xx

[Daffodil]

Hi Desy. Win has explained it very well. Hydrocephalus when it causes high pressure basically is like someone shutting your senses down slowly.

I have a great neuro team and As far as I have been informed sometimes when someone has a significant bleed it can cause the ventricles in your brain that absorb cerebral spinal fluid to stop working. When my SAH happened thats what happened and they placed an extra ventricular drain initially to drain off extra fluid and hoped that the ventricles will kick start. In fact they had to do that before they coiled me to give me any chance.

 

Anyway although I managed to have the EVD taken out after my inital stay in hospital and ICU it became clear a few months on that my ventricles were too damaged to work efficiently and I was going backwards in my recovery. A scan quickly showed that I had a dangerously high pressure build up again. A Lumber puncture to correct levels and after a few weeks back being stabilised Scans showed that pressure was rising slowly again so they decided to put a shunt in to mange it permanently. It basically keeps the CSF pressure from going to high and causing damage to my brain, bit like a toilet overflow device really. There's only a few of us I think on here that have had to have this surgery.

 

There's lots of kinds of VP shunts. Mine is adjustable and programmable and thanks to my support from fellow shunt guys and gals on here I am learning to live more confidently with mine. Main thing is that the weather and air pressure affects a lot, my head defnately acts like a barometer, guess its down to the tubing thanks for asking though.

[Desy]

Cheers girls, doesn't seem to common thankfully as don't think I would like as some of the images I seen when I googled it did not look nice, but it certainly seems to help.

Think I heard some one describe it before as akin to someone switching a light on possibly yourself win, and daffodil you speak my type of language "like an over flow on a toilet" lol perfect explanation

Just one other question, when the fluid is being moved to stabilise the pressure does the shunt move it to a different part of the head or drain it from the head.

[Super Mario]

The tube runs from the shunt under the skin usually into the abdomen where it drains into the soft tissue. I say usually because I think there is an alternative, something to do with the heart.

[Daffodil]

Desy. Sharing what I know. Kris will correct any mistakes I make about brain I hope.

In the middle of the brain are your ventricles which create CSF. They're not entirely sure how much and how often and what makes more or less of this fluid so it's one of the more mysterious brain processes. Anyway this miracle liquid bathes the brain and spinal column and gets absorbed naturally back into the body through the surface of the brain and this process happens many times each day.

 

The blood damage in mine post SAH prevents this happening so this is why they put the shunt in. The shunt is a small siphon device placed into the skull with a tube running from it direct into the ventricles and then the drainage tube runs down over the collar bone into the abdominal cavity where it releases the fluid. None of this kit moves once in position.

 

When the valve measures pressure equal or higher than its setting it opens and drains the ventricles back to a closing pressure, thus my toilet overflow comparison. It's a clunky version of what the body naturally does.

 

The main valve on mine is about the size of a 10p piece which you can feel raised bemeath the skin but its not painful and then I have a gravitational Device beneath it which basically adjusts the flow rate of drainage depending on whether I'm vertical or horizontal.

I've always said it would be good to get an intelligent shunt which is more adjustable but I'm not sure about having a roving one like you imagined .

[kpaggett]

A shunt ads yet another twist to an already brain stressed SAH. It is wonderful that you are able to identify albeit not control the extra symptoms. I remember I was very concerned with the size of my ventricles afterwards. My scans showed they were normal. I couldn't figure it out then why did I have such a sore back, but I was lucky.

The contents of the CSF is out of whack for everyone for a bit which can be disruptive in the extracellular environment, but hopefully doesn't cause too much extra damage after the bleed. I'm glad your doc's figured it out for you.

~Kris

[Desy]

Think its just fascinating what they can do now and often wonder what things were like in the olden days, scary really.

[Winb143]

Hi Desy,

My shunt is behind my right ear/lower head and a tube runs down side of neck into tummy.

Must be a big tube as I have a big tum joke, Not !!

I have a scar a wee one just at bottom of ribs.

When I first had it done I was like this "Yuck what's this tube " now I never notice/feel it.(apart from hair wash).

So it is a good job you cannot get drunk on cerebal fluid. hic !!

Be Well Desy

Win xx

[Daffodil]

So sharing and off loading today as I feel very out of kilter today and figure it's down to the weather pressure changes and my head letting me know about it. Just wish I had a way of knowing when to ignore odd symptoms or when they need checking out , that's really hard to learn isn't it.

I have spoken before that I am very sensitive when I get pressure changes in my head. It adds to my fatigue fog by making my head feel like a ton of bricks. It frustrates me if I am honest how little is really understood about CSf and what it does for the spinal and brain system and what the effects are when you have mechanical intervention like me and the shunt club guys and gals do. Some days I can feel pretty ok but then I hit times when it the discomfort and pain are inescapable , like I have today and then it's down to 0 mph.

So I distract myself a little, rest a little more, sing a little (just for you. Win) and hope my mantra of tomorrow brings a different day will help. But it really is a pain in the #### somedays living with a shunt.

[Louise]

Desy I have both shunt & a tube in my brain, for me it drains the fluid from my brain as I produce too many vitimums...

[Alison Q]

Thank you Daffodil for all your information, this has really helped me think about this now. And to everyone for sharing all their experiences!

I am 7 weeks after SAH but having lots of pain in my head, neck, feeling sick, dizzy etc. in fact very similar to some of you. So I had started to wonder if this was any kind of hydrocephalus or if I was just "normal".

Great to read in this Discussion

[Karen]

That's miserable Daff ... I don't even have a shunt, but in my early years I used to call it my "barometer head" ... any slight change in the weather used to bring it on. This doesn't happen so much now and I wonder whether it's just the brain healing or is it because I've become more desensitized and less anxious?....to be honest I don't know the answer.

I just wanted to chip in with your comment

Just wish I had a way of knowing when to ignore odd symptoms or when they need checking out , that's really hard to learn isn't it.

I think that this is one of the hardest lessons to learn, as to what is normal and when does it need checking out?

I had many years of thinking exactly the same ... Doctors or no Doctors, should I go, is this my new normal or will they think that I'm a hypochondriac? ... that stems from being told by a GP just before the SAH, did I think that I had a brain tumour or did I have marital problems?

All I can say, is that I think that if you're not feeling good especially in the early years, is yes, go and get checked out ... it could be something that's easily fixed or just one of those weird brain things that happen after an injury and having some peace of mind will help with your anxiety.

To me, you're doing the right thing ... rest, divert your mind and tomorrow will hopefully be a better day ... I did the same and still do with the odd times when it happens now. If it lasts more than normal, make an appointment with your Doc and get checked out.

No magic answers I'm afraid, but you're not alone with what you're experiencing and a lot more research needed ... sending hugs xx

[Winb143]

Daff my song before shunt was the following:~

"The lights are on but I'm not home

My Mind aint not my own

My body sways in double time.. Song is ~ Addicted to Love

Seriously we have good days and poo ones, now the good days outweigh the bad days.

I cry when anyone raises their voices, what a baby Win!!

Keep well all and when feeling down just go to sleep or sing xx

Be Well All SAH'ers shunt or otherwise.

Love

Win xx keep that dismal weather away ! xx

[iola]

Good Morning,

Daff, I am sorry I did not see this thread earlier. You are always the one to provide the most positive outlook on things. I am sorry you were not feeling well. It is definitely ups and downs on this road to recovery.

Hope you are feeling better today.

iola

[Daffodil]

Well three years have passed since my SAH and I thought it might be useful to give a little update to this thread about how my recovery is after that much time has elapsed and share what has changed and improved in that time.

 

One of my greatest challenges early on was almost knowing what to worry about and not how to stop;, was that strange head sensation another bleed, was my coling failing, had my shunt stopped working, I spent months and months on high alert watching the changes in my head and wondering if everything is ok. I am pleased to say I no longer do this, I have had CBT counselling and seen a neurophysiologist and both really helped me understand my feelings, I got diagnosed with PTSD and once my family and I understood it has allowed me to just sit with the sensations. Now that's not to say I can't be roused to a state of panic if things get horrid which they still do from time to time , physically sometimes or emotionally but as the process of these ' brain moments' are more familiar to me now I just watch and wait for them to pass and thankfully they always seem to given time and rest.

 

My hydrocephalus is managed well , I occassionally hear James ( Shunt) whirring away and I do note some effects when draining occur which includes an urgency to be near the bathroom on some occasions. The sensation around my shunt have increased a little over the years , it's no longer numb to the touch but I am also comfortable with my notchy bumpy head and pipework, it's all familiar to me and my family now, my daughter even deigned to touch it for the first time last year after ribbing me mercilessly about my shark bite !!

 

I am back working. That took a long while, 16 months before I could even find the energy and cognitive concentration required to do a few hours. I now do 16 over the week and even find a little time to moderate on here which I love. I do more with the family. Driving, not masses and never long distance but I manage and they know some days I just have to stop and we have all accepted that and seen it is actually a gift if I do as it means I can often pick up pretty quickly , pushing through is not pretty, I try to avoid that.

 

I have ticked off lots of regains and accomplishments. After lengthy hospital stays and all the trauma I could barely walk a few steps and couldn't manage anywhere which was over stimulating be it at home or out but now for example I have been able to go into London unaided to meet work colleagues a few time and took my first flight last year so progress continues. I don't drink at all now. To be honest it scares me the thought of notching up my headaches as yes I do have pain and would prefer not to add to that voluntarily.

 

I now wear a hat most of the time which I have learnt protects me against cold, wind and rain, three weather conditions that do affect me more than warmth, I can only assume it's barometric pressure which affects my neurons more but can't be sure, but hey if it helps I'll keep on doing it and have a lovely collection of hats and walking sticks now. So I may no longer be a yummy mummy , and I can't do what I did but I'm here , happy and making steady progress still and that's something I'm thankful for every day.

 

So keep going folks, it does get easier with time.

[Macca]

Daff,

 

You're doing just great - and sensible with it.  You are a grounded person and it will see you well long into the future.  As Mr Spock used to say 'Live long and prosper.'

 

I wear hats too.  Great invention weren't they?

 

Best wishes

 

Macca

[Karen]

A great update Daff ... you're doing really well.   xx

[subzero]

Thanks for your update Daffodil and your encouraging posts throughout the site- great to know you can look back and see your progress and look to the future in a positive way- keep going...............