This forum allows members to post a question on Subarachnoid Haemorrhage matters which should also include a Poll. All newly started Polls will be subject to Admin and Moderators approval before they appear on this forum.
Tell us what you've found useful as an aid to your recovery (such as relaxation techniques etc.) and discuss natural diet advice/healthy living tips. This is also the forum to post in, if you need or can offer advice on Benefits that can be claimed after a SAH/Stroke
Hi Sean and Julie.
great reply from SM which I hope will Help you. Hydrocephalus itself is pretty damaging to the brain and like SM I think the impacted balance and dizziness was mostly the lasting effect of that although equally caused by bleed too but 8 yrs on I’m so much better now and can do most things.
Sean not sure what Shunt you have placed , I have a Meithke ProGav, but most placed these days have gravitational valves, adjustable external magnetic setting which also can be checked using a special tool which the specialist nurse can look at. (Mine is being monitored because we aren’t sure if my valve is playing up but no Shunt failure symptoms thankfully . To check setting Its very simple , a sit downpainless procedure. )
Pre any MRI they will confirm what Shunt you and as a result there should be no issue to the setting but the scan team should confirm that before you go in. Do speak to the Shunt specialist too if you have concerns
To check on actual Shunt function they’ll often do a ‘Shunt series’ which is a X-ray of the tubing in the abdomen and neck to check any blockage etc and then will often elect for a CT scan as they just look at ventricle size changes. When they do a MRI it is going to get that closer look at the blood vessels plus check ventricle size so that’s more about the SAH bleed , how the coiling is holding and other aneurisms, overall brain health.
With my decisions for changes in setting we based it very much on what I thought and frankly my getting worse not better. Also because I had had three months of living without a Shunt I knew exactly what high pressure hydrocephalus felt like for me and equally low pressure symptoms as well as I went on to have many lumber punctures which drained off CSF before Shunt placement but which sent me low pressure. So I could tell that my setting of ‘5’ kept me way to low pressure for me. I would fall over , I felt nauseous all the time, I had pain in my eyes, neck and had fingertip pressure pain all over my head but always felt better lying down. So we gradually increased the setting over a period of months. It wasn’t an easy period , I went back in overnight a few times because they were concerned I could have CSF leak etc but over time we found ‘my’ setting and I had to then adjust to living with a Shunt whilst recovering from bleed.
With a Shunt Our brain juice control system is not the smooth automatic system it was anymore but a little clunky and awkward , I hear it whirring n . draining, as it does it’s overflow work but I know when I have had a big valve release and I have an ultra sensitive reaction to barometric pressure , (that’s a symptom and something we all have shared and find we have in common on here.)
SAH recovery with hydrocephalus and dealing with effects of a bleed is essentially two conditions , both causing brain injuries colliding and it can be a little bewildering at times butdo keep a diary and track how it sits with you. You will know your body and what feels right.
i know the MRI scans are tricky but yes agree maybe ask if they can work with you to help you feel more comfortable with the procedure .
take care and glad it’s helping to talk.
I was told at my first clinic appointment after my SAH, that if I ever needed a MRI scan I needed to inform them of my shunt. Our local hospital can't reset shunts so for any MRI I have to go to a hospital that has a neuro dept and the facilities to check and reset my type of shunt.
Initially, approx. 14 years ago, the procedure was to have a skull xray before the scan and then one afterwards to see if the setting had changed. The radiographer was very good and showed me the before and after films and yes it had moved. I then had to have it reset to the original setting which, at that time, meant getting my notes to check what the setting was initially.
At a subsequent MRI there was no xray, just a nurse with a piece of equipment that read my shunt setting prior to the scan. She came back after the scan , checked it with her "toy" and it had moved again so she just reset to the original. Those checks and reset were actually done in the waiting room , so quick it was.
Going off the shunt subject, I have permanent dizziness. Rightly or wrongly as I am not medically trained, I believe that my permanent dizziness was caused by the hydrocephalus and not the SAH. I didn't get rehab or I may have managed to conquer it at that time. Apparently physiotherapy can help. I now have coping strategies that I have learnt myself by trial and error that help.
If Sean isn't having physio it may be a good idea to request it as the earlier it is put in place the more chance of success.
Hi All - I am Sean's wife Julie (think I spoke to one or two of you on my post re PIP).
Firstly I wanted to say thank you - Sean is over the moon to be able to chat with people who have had similar experiences and I have noticed a change in Sean in that he looks forward to coming on here and learning and reading and corresponding.
Super Mario - I wanted to ask you a specific question if I may regarding the fact the MRI changed your shunt setting as we have been getting a lot of conflicting information (Sean knows I am writing this as he is watching me 🧐).
When the MRI was first mentioned (we knew they wanted to do one 6 months post SAH) they knew Sean was claustrophobic so suggested the upright then dismissed it as shunt was not suitable. Anyway as Sean said 2 attempts on MRI's and now they are saying the upright is suitable.
Anyway - apologies I can rumble on - my question is before your first MRI were you told that your shunt could be altered by the magnetic field or was it a complete surprise to you that it happened? Because of Sean's dizziness they need the MRI to check everything before they decide if the shunt setting is correct or whether the dizziness is something that will be there permanently. As well as checking the coils and the 2 untreated aneurysms he has.
Again many thanks and will try not to hijack Sean's post again but interested in your reply Super Mario 😊
Sean, I am another member of the shunt club, mine is also altered magnetically. I can't even remember having it fitted so I don't know if I had it reset in the early days.
I have had later MRI's which have altered my shunt setting due to the magnetic field. It was just set again to the original setting. That is a very easy procedure which only takes a couple of minutes.
As Daffodil says, it can take quite a while to get the correct setting for you, bit like trial and error.
Have you ever thought of asking for a sedative prior to a MRI in the hope that it may help you to tolerate one?
Hi Daff and all! I have been for an MRI on several occasions, even the mobile one parked outside the NHNN entrace, each time I panicked and only managed to last about 5 minutes in them, so no clear result. They are organizing an 'upright' scanner for me, but it's a Harley St job and there is a waiting list, but I've been told I'll be a priority, so I'm hopeful.
My shunt can be magnetically altered to different settings, mine is on 5 and I have had follow ups with the Hydrocephalus specialist nurse who was great! I still get pain down the back of the shunt side of my neck, also down my ribs to the abdomen, this the drainage tube. I had never even heard of Shunts before my SAH and thought all brain Haemhorrages were fatal, what little do we know! Thanks everyone!