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Hi everyone! From SeanOg,


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I am so glad to have found this site or to be honest my wife did! I have been in touch with "HEADWAY" and they have been great but this site seems so interactive and understanding.

 

It has been more than a year since my SAH and all the complications that I endured ie Hydrocephalus,drastic decreasing of sodium and Vasospams. I really do not remember the event happening but thank god my wife was here with me when it happened, or I would not be here talking about it.

 

I have a shunt fitted and would love to hear from others with one implanted, as I have had problems since I have recovered. This site proves the old adage "It takes one to know to know one". Many thanks! 

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Welcome to BTG and very glad you found us.

 

I don't have a shunt but there are a couple on here who do, so when they see your post they'll be sure to reply.

 

Can you tell us a bit more about yourself - especially the circumstances surrounding your SAH?

 

Take care and feel free to ask any questions you like - we cannot offer medical advice, but we have a wealth of knowledge and experience.

 

 

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Hello and also a warm welcome to BTG.

 

The after effects of SAH are varied and often complex depending on the nature and position of the bleed.

 

When discharged survivors are often left with so many questions unanswered.  This is in the main because every case is quite unique and only as time passes do you and your family become aware of how debilitating or otherwise your brain trauma has been.

 

As Sami mentioned, there are members who are recovering with shunts, and shunts have been the subject of much discussion on this site.

 

The following link will provide much information for you meantime.

 

https://web.behindthegray.net/search/?&q=Shunt&search_and_or=or

 

We look forward to hearing more from you when you can.

 

Meantime I wish you well as you deal with your recovery.

 

We are here to help and support you.

 

Subs

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Thank you for the link you sent me Subs, it was very informative.

 

My SAH occurred in April of last year, it was totally out of the blue and it happened whilst I was sitting at home beside my wife. I do not remember it but my wife said I was going mad with pains in my head and neck and my temperature was getting higher, so she rang an ambulance and I was taken to University College Hospital and they transferred me to the National Hospital for Neurology and Neurosurgery at Queens Square.

 

They fitted coils and a few days later I developed mild Vasospasms and my sodium levels plummeted, within a very short time I was diagnosed with Hydrocephalus – everything that could go wrong was hitting me! I had an emergency procedure to have a shunt implanted, the pain in my head and especially my neck was still bad and I was suffering double vision but I was getting slowly better and after 4 weeks I was discharged. 

 

I am lucky that I am still monitored by the National hospital especially as I have 2 small untreated aneurysms which are too small to coil. I still have impaired vision but not seeing double, my balance is not great and I have bouts of dizziness and my jaw hurts and clicks when I am eating. Everyone involved were fantastic and I just need to get over my fear of MRI scanners, but apart from all of that I am doing well🙂

 

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Hi Sean, fellow National patient here and I also have a VP Shunt fitted. Here to tell the tale thanks to the amazing staff there and the work they did and have done since.

 

I remain a outpatient at the National and attend Shunt clinic annually now but I had MRIs annually until last year as also have smaller anneurism and a neck on my coiling they kept watch on. 

 

They are a great team, and I recommend the Neuropyscology follow up if they offer it as really helped me in the first couple of years post mine.

 

MRI scanners at NHNN are very loud ... I take my own ear plugs to wear under their headsets and I also make up silly songs to go with the strange banging and clanging ....oh and suck a polo before I go in , that calms Me and was a great tip I got from a lovely woman I met here who reassured me - Win. I think I must have had over 10 scans in my first year which is crazy really as initially i  didn’t have a Shunt fitted just an EVD  but after my first discharge after 7 weeks in I ended up back at queens sq and requiring more surgery for  Shunt placement and then it took a fair while to get setting right for me. 

 

I’ve tracked on here my recovery with hydrocephalus so I’ll try and find that and link for you. Feel free to ask me any questions, 

 

Go steady and slowly. No race or rush needed. Try to sleep a little upright and make sure you eat frequently 

 

Ps have you seen the cat statue in queens sq gardens, I visit every time without fail. First thing I remember from when I finally wheeled outside for fresh air ...

 

Edited to add link

 

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Hi Sean, 

 

Like yourself and Daffodil I am a fellow NHNN patient. Had my bleed five years ago and had my shunt fitted about two weeks after. I had an EVD before this and was not able to come off it. From my follow up appointments I know I am still hydrocephalic (to be fair I can hear the shunt draining anyway). Thus far the setting I have has worked. 

 

Since discharge I have had an MRI every six months which have literally just dropped to yearly MRIs for both my brain and also spine (I developed a rare side effect of arachnoiditis and arachnoid cysts on my spine, which need monitoring). 

 

Getting used to everything post haemorrhage takes time. Even five years down the line I am still adjusting to life post haemorrhage. 

 

Daffodil's posts about her hydrocephalus are useful (I read them after my haemorrhage). 

 

Take care 

Gemma 

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Hi there

 

Warm welcome to the site, glad that you found us.

 

I too have a shunt and also a tube in my brain isn't Science just wonderful..

 

Take care

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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!

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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?

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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 😊

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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.

 

 

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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. That’s been my experiences and how it was explained to me. 

 

With my decisions for changes in setting we based it very much on what I thought would improve my quality of symptoms 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 but do 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. 

 

 

 

 

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Hi there I haven't got a shunt after they took my temporary one out but anyway I have brain zaps lightheadedness and headaches even after 18 years it's worse when I haven't drunk any water so make sure you have plenty of also gets worse when I do to much or am really tired xxx

 

Hope things improve for you soon xxx 

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