Hydrocephalus question

[bessie]

Hello,

My mum had an SAH back in July 2009 and had complications, one including hydrocephlus.

She was having daily lumbar punctures in hospital to relieve the pressure and they were gradually reduced until she didn't need them anymore.

After a spell of no lumbar punctures or scans for about 8 weeks she was sent home. She had one last scan and lumbar puncture, before she left hospital, and the pressure was showing as normal so they sent her home.

She is completely bed bound and has to be hoisted into her wheelchair at home. She is having physiotherapy but is not making any significant progress after 12 weeks of physio.

She finds her right side difficult to move and her short term memory is very poor.

Can anyone advise on the signs to look out for with hydrocephlus?

Edited March 2, 2010 by Karen
Moved thread to SAH forum

[rod123]

Hi my wife developed hydrocepahlus a month after i brought hers home, her started with just saying wierd things, i think, we caught it in the early stages , but there is a web site for hydrocephalus it is http://www.hydroassoc.org/

hope that helps best wishes Rod

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(some one tell me how i put that link in properly please so she could just click on it )

Hi Rod, open the website that you want to put a link to, in another tab of your browser - then select and copy the web page address in the top bar and then you can paste it into your post. You can also just type it in, as long as you include http://www. or the link won't work. Hope that makes sense.

Edited March 2, 2010 by Karen
Full web link inserted

[Karen]

Hi Bessie,

The following link may be of help to you. xx

http://www.nhs.uk/conditions/hydrocephalus/Pages/Introduction.aspx

[paul99]

bessie the other site if you type in hydrocephalus there is a uk based asbah which i found very helpful gave all the symptoms that identify s the condition even gives you a comparison chart so you can follow it through if you have a problem pm me and i will send it to you take care

[paul99]

the site is http://www.asbah.org/ if this helps

Edited March 2, 2010 by Karen
Full web site address inserted

[Karen]

An interesting web site Paul and I don't really want to go "off topic" from Bessie's original thread, as might have to delete my own post! ... but find the article on Folic acid deficiency very interesting, as I've had to take supplements since the SAH. Will continue with some further reading. Many thanks.

[johntaras]

Hello Bessie, sorry to read about your mum.

I myself am suffering from hydrocephlus as a result of my SAH. I have had a shunt fitted in December 2009 which now controls this problem. Before the Shunt I was a completely different person, highly confused and disorientated. I could not walk or talk or feed myself. Before my SAH I was a perfectly healthy middle aged man.

I cannot advise you of what to look for but I can give you examples of what I was doing.

I was sick in drawers, hallucinating, incoherent and completely disorentated prior to be admitted to hospital. My wife was told not to continually monitor me now I am at home as the changes in me if the shunt blocks and the hydrocephlus returns as she will spot the changes as they will be quite obvious. She was told that my symptoms would return but much slower.

What transformed my life was the fitting of the VP Shunt with the pipe to my stomach.

I wish your mum well and hope that her condition improves.

[rod123]

Hi thanks Karen for that we learn something everyday and I think i will give that site a look Paul, Hope think sort theirselves out for you Bessie, Good luck Rod.

[paul99]

thanks karen

for adding the link i found it full of useful information includeing thwe check chart ii knew about it many years ago that why i faced the dr off with it but i think it would answer many of bessie questions bless you

[bessie]

Thank you for those links. Its much appreciated.

This is where my confusion lies because one of the websites says there is no non-surgical treatment for hydrocephlus, yet my mum was sent home after treating it with lumbar punctures?

Is she confused because of the SAH and brain infection or does she have hydrocephlus again.

Its so confusing to me let alone her. Not sure what to do really. Shes having a follow-up scan in April, should I wait until then or talk to the hospital about my concerns now?

[rod123]

Hi Bessie, sorry i can't say why your mum is confused i think it would be wrong for me to try and guess, but i can tell you that even after the shunt was fitted Merrill still experienced a certain amount of confusion,and still do nearly a year on so i should'nt be too alarmed by it (as i was) if you have concerns then i would ask your gp to take the time to try and explain it to you, Good luck Rod

[paul99]

hi bessie

the confusion could be just because of the bleed it takes some time to clear itself and it will take time for mum to become more alert

the drs sometimes do a lumber puncture to draw off the fluid it is also used to check if there is any blood surrounding the brain lin had two lumber drains to draw off the cfs fluid because she was not well enough for surgery sometimes the hydrocephalus clears on its own so no further treatment would be necessary

i think it would not be feasible that mum has an infection because the signs and symptoms would be very obvious along with hydrocephalus believe me they are very obvious

i would suggest that you speak to the phyiso and ask why there seems to be no improvement and ask if mum can attend a day center once or twice a week if possible i would also like to suggest contacting the headway group in your area i believe they also give support for people who have suffered a head injury or sah it sound like you have left hospital with mum with so many questions unanswered headway will help you answer them or when you go for the check up write all your questions down on a piece of paper and ask them when you see the consultant i hope this helps Bessie pm if i can be of anymore help take care

[KelBel]

Hi Bessie,

I hope you manage to find some answers soon, if not from Headway then yes call the hospital to get some answers (or even try the Brain & Spine Foundation helpline), as you don't want to go another month with all these questions going round and round in your head. (I know that feeling...and I wish I had called a helpline or the hospital before my follow-up...)

As Paul said; do make a list of questions to ask the consultant at the next appointment. Keep a note of all symptoms, however small, and work your way through your questions; and make notes for yourself to look back on. It definitely helped me at my follow-up appointment.

Good luck - sending some healing your way, for both you and your mum

Kel x

[bessie]

It has been such a worrying 8 months. She did have a grade 4 bleed, plus the ventriculitis infection, then sepsis and then hydrocephlus. She did go through it.

The physios seem to think its her cognitive function thats holding her back, but her stiff neck, confusion and balance problems seem more like hydrocephlus symptoms to me. But as you said Paul about the bleed clearing itself, the other part of my mind thinks that her brain has been through so much that she is going to have these symptoms.

I've got a leaflet for headway, but haven't phoned them yet. Perhaps I ought to.

My dad has contacted the hospital to express our concerns to them and to bring her check up scan forward if possible. Just waiting for a reply back now.

Thank you - it does help to express my worries on here and also to read others experiences.

[paul99]

bessie

that was a fairly big bleed lins was 5+ do you know which blood vessel gave way as it does have an effect on what damage is caused and what the after effects are will pm you my number give me a ring anytime the phone is never off your more than welcome to view your concerns because someone has gone through the same experience so never worry the stiff neck is the same as lin its normal is her head off to one side and does mum seem to push her neck backwards please ring take care

[bessie]

Thanks Paul.

Not sure what blood vessel burst but her head is always leaning forward after about 30 mins in her wheelchair. When she goes back to bed her head is always leaning either one side of the other?

She does have severe balance problems.

We have been told she can have an MRI scan towards the end of March. So I hope this is just part of her slow recovery and these symptoms are not because of anything else going on in her head.

[paul99]

bessie your mum is the same as lin head to one side try not to worry to much

[bessie]

I am one of lifes worriers I'm afraid. Shes saying she has shoulder pain at the moment and I panic over that.

Try not to though.

Well the physios told us yesterday that they are discharging my mum from home physiotherapy and that this is how she is going to be and there is nothing more they can do to get her standing and walking.

I knew it was coming so I refused to attend their meeting. To be honest after 3 attempts at getting her to stand was unsuccessful they gave up and give her a balloon to tap for a month instead

So its left to me and my dad to continue with her physio. The physio team call it maintenance, but I call it trying to get her to improve and hopefully standing one day. Then who knows!

[rod123]

hi Bessie, hope you're well, i know it gets all very frustating,i'm carer to my wife she too has mobility problems, she ahs also had severe leg pains, at at the moment she has a bad right shouder, and she has had sll sorts of other aches and pains,,and iknow you are probably sick of hearing this (it's the old get me out clause) if you are worried talk to your gp, Good luck Rod

[bessie]

Hello Rod,

Not really, finding it hard to except how my mum is at the moment.

Ditto - my mums pain is in her right shoulder also.

Spoken to the GP and he prescribed paracetamol at first but now she is on gabapentin as he agrees with the district nurse and the physio (before they dumped us) that it could be neuropathic pain??

[Sarah]

Hi Bessie,

My mum had a similar thing when she was discharged from hospital onto a neuro rehab unit. She had very low awareness and would sleep alot and would rarely talk and was like this for a good 3-4 months. The rehab hospital were about to discharge her when they wanted to make sure that they had covered everything and decided to send her back to the hospital where she had just come from. The scan confirmed that she had hydrocephlus and she was transferred back to the initial neuro hospital she was at when she had her SAH. A shunt was fitted inside the back of her head which was linked to her stomach and within a week she had woken from this minimally aware state to be telling people my name and just generally being more with it.

I am not sure if this will really help but having resigned myself to the fact that she was going to be that way forever she is at least 50% better than what she was.

Also in regards to the tilting head the same thing happened with my mum, again whilst in rehab she was given a number of botox injections to (I am not sure if contract is the right word) but it basically relaxed the stiffness in her neck to allow it to sit straight. She had the same thing in her knee and arm as she has left side paralysis and it did seem to work.

Also recently my mum has moved into a nursing home and the same thing has happened with the physio. Whilst in rehab she was getting it 3 times a week and now we have been told due to funding it is better that the family and staff at the home continue with the 'maintenance' of her limbs. Funnily enough despite the fact that her left leg has started to move having been told it never would we still won't get any the joys of social services!!.

Anyway if I can be of any more help, please get in touch.

Good Luck

Sarah

[bessie]

Hello Sarah,

Sorry for not picking up your reply but because my mum is at home I don't get much spare time.

Was it the rehab unit at Sevenoaks your mum went to? They wouldn't except my mum there. They said because she had a catheter in situ they couldn't take her??

My mums follow up scan showed fluid in her brain ventricles so she is visiting the consultant tomorrow to see the benefits of having a shunt fitted.

It is frustrating - you really have to shout to get heard with regards to her physio anyway. Then again they still ignored us.

Hope your mum keeps improving

[paul99]

Bessie

i wish both you and mum all the best for tomorrow i hope they can do things for you i know when lin had her shunt her Glasgow coma scale went for three to ten i really hope they can put a shunt in if necessary quickly then i think you will see a difference in her fairly quickly im pleased the scan pick it up i really hope you will get peace of mind and when mum has it put in please take a few days for yourself and rest up please take care you have my number

[Karen]

Bessie, wishing you and your Mum all the very best. xx

[Janet]

Hi Bessie

Hoping things go well for your mum at tomorrows appointment.