luke Posted November 14, 2017 Share Posted November 14, 2017 It's been a while since I have been around on the forum. I hope everyone here is doing well!? I have a few q's about a shunt operation. At the beginning of this year my Mother had a clip fitted to protect her from having a third SAH. The surgeon said recovery would be longer, unfortunately she hasn't got better at all since the operation. Sadly she was actually much better before hand which has cast doubt on our decision to go for the more invasive surgery. I have long suspected she has hydrocephalus as a lot of her symptoms pointed to it. After the 6 month check up scans showed this was correct & she does in fact have hydrocephalus , which may require a shunt after our approval. We have a meeting next week to decide what to do. I know a few of you have had Shunts fitted & was wondering about your experiences with them. Did you find your symptoms lessen after the fitting? Are you glad you had the operation done? My Mother after going through a lot over the years is potentially going to have one fitted. As a family we are pretty certain that it is the right choice to have one fitted, however I thought I should ask you guys as well if you think it made your life better before agreeing of my Mother to go through with another brain operation. Thank you all for your help Link to comment Share on other sites More sharing options...
subzero Posted November 14, 2017 Share Posted November 14, 2017 Hello Luke ... sorry to learn that your mother continues to have issues following her SAH. While the number of members who have required shunts are few, in anticipation of their comments I refer you to comments already on record within the Forums of BTG. Please key `shunt` in the search box on the home page and you will find information currently on file. I hope these give some help and support and hope that your meeting next week gives you the final information you need to decide on the way forward. Take care Subs Link to comment Share on other sites More sharing options...
luke Posted November 14, 2017 Author Share Posted November 14, 2017 Thanks subzero, ill have a browse Link to comment Share on other sites More sharing options...
Winb143 Posted November 15, 2017 Share Posted November 15, 2017 Hi Luke, I have a shunt and am only speaking from what I was told happened to me as I remember nothing before my shunt !! When I was in cuckoo land before shunt I remembered absolutely nothing, my family say I spoke to them but remember zilch. Which in a way was good for me as no fear!! My husband and Daughter were worried as I was sleeping a lot etc etc and while in hospital thought I was in a café saying to Daughter "My treat" I came home (So I am told) and remember going to Hospital and said to a nurse put my cross on when I come back. Now whether or not I said this ???? I came around and sang to said nurse. I was in there from Thursday until Saturday when they said I could go home. I remember my Dogs going potty and my Daughter and hubby telling me what had happened in 2009 SAH. A year later I had shunt in and it took me approx. a week or 2 to realise how ill I had been. I have a lump behind my ear and a drain into tummy to drain my head off. (Scuse my words) When I first had it done I was "I don't like this big thing behind my ear" but I was able to tell my family how much I loved them. Not many people get a 2nd chance. So I am glad to be a survivor. Short term memory is awful but ask me what happened years ago and I'll tell you !! Good luck in your decision making, as my hubby was going to cancel mine, he rang male nurse who worked with Neuro Surgeon and said he didn't want me to go through more ops. Take care and have a word with Surgeon tell him your worries. xx Wish your Mum all the best Luke xx Link to comment Share on other sites More sharing options...
luke Posted November 16, 2017 Author Share Posted November 16, 2017 On 15/11/2017 at 11:01, Winb143 said: Hi Luke, I have a shunt and am only speaking from what I was told happened to me as I remember nothing before my shunt !! When I was in cuckoo land before shunt I remembered absolutely nothing, my family say I spoke to them but remember zilch. Which in a way was good for me as no fear!! My husband and Daughter were worried as I was sleeping a lot etc etc and while in hospital thought I was in a café saying to Daughter "My treat" I came home (So I am told) and remember going to Hospital and said to a nurse put my cross on when I come back. Now whether or not I said this ???? I came around and sang to said nurse. I was in there from Thursday until Saturday when they said I could go home. I remember my Dogs going potty and my Daughter and hubby telling me what had happened in 2009 SAH. A year later I had shunt in and it took me approx. a week or 2 to realise how ill I had been. I have a lump behind my ear and a drain into tummy to drain my head off. (Scuse my words) When I first had it done I was "I don't like this big thing behind my ear" but I was able to tell my family how much I loved them. Not many people get a 2nd chance. So I am glad to be a survivor. Short term memory is awful but ask me what happened years ago and I'll tell you !! Good luck in your decision making, as my hubby was going to cancel mine, he rang male nurse who worked with Neuro Surgeon and said he didn't want me to go through more ops. Take care and have a word with Surgeon tell him your worries. xx Wish your Mum all the best Luke xx Thank you Win for the response. I have to admit I got a little emotional reading that. Your condition before the shunt sounds a lot like my Mum now. I really hope she has some memory improvement as presently she doesnt remember anything longer than 2 minutes. You are a real trooper & your high spirit is a wonderful thing. x Link to comment Share on other sites More sharing options...
Daffodil Posted November 16, 2017 Share Posted November 16, 2017 Hi Luke, sorry to hear about mum but glad in a way they are looking to help her recovery and the shunt operation whilst a really big deal for everyone to consider can also bring some real change too as Win attests to above. I had hydrocephalus with my bleed, had an EVD placed for many weeks and then removed before discharge and then less than three months later I was back in hospital where it showed my hydrocephalus has not resolved as they thought and my ventricles were too damaged to do the job properly. End result, shunt operation after a fair few Lumber punctures didn't kick start anything. When you have hydrocephalus like this it seems that we may have some absorption of the cerebral spinal fluid but the ventricles just can't keep up and after time the build up just shuts everything off. It is like a shutting down of all the senses. I can still remember that feeling, like my lights were being switched off one by one and so when Win talks about lights beings switched on after her shunt operation I always smile as I know exactly what she means and feels like. If you go high ( or low) pressure everything starts feeling wrong, nothing works properly and so then you have the effects of the bleed and have to cope with the pressure effects combined with it so it's like a double whammy of cognitive symptoms So a shunt operation is a scary prospect but but I can honestly tell you that it is also life giving as it gave me back a state of balance and equilibrium my brain desperately needed to be able to get on with recovering from the bleed. Five plus years on and I do still get some challenges with my shunt but for the most I am steady and that's all I aim for. My toilet overflow device, or James as I call it keeps me up and about and for that I am thankful and I hope it can do the same for mum. Mum may feel very poorly post op, it does takes a lot out of you like any big procedure does and then it will take her time to get used to having the shunt as well. She may feel very nauseous and light and sound sensitive at first and so trying to help with that is good and body temperature can rocket up and down at will at least it did for me , so have blankets to hand, bed socks, eye masks. She will need to rest and sleep and sleeping propped up was very helpful especially in the first few months and even now I never get up from sitting or lying fast, that's not a good look! She will also has to have her hair shaved again which is annoying and so maybe try to find her some soft hats that she can wear post op as it heals as it feels quite sensitive. she will also have a incision on her abdomen from where they place the tube. I recommend reading some of the literature on the SHINE charity site and applying for a SHUNT medical card which she can carry, it's quite a good place for information . Good luck whatever your decide. Tell mum we are thinking of her. daffodil Link to comment Share on other sites More sharing options...
Winb143 Posted November 17, 2017 Share Posted November 17, 2017 Also Luke I couldn't sit up and kept falling sideways sounds silly but it does all get better in my case. I used to fall sideways on my Daughter and am no lightweight ha ha now I can hold myself up (small thing to some). Was told I'd never walk again but first 4 steps to give hubby Christmas then 30 then 100 yards and tomorrow the Olympics lol. Whatever you decide may it benefit Mum and you xxxx Good Luck Luke and Mum and keep her happy it is a must !!! Also pillows to prop her up are a must and I have so many sunglasses light ones black ones for different shades of sun. xx Link to comment Share on other sites More sharing options...
Louise Posted November 19, 2017 Share Posted November 19, 2017 Hi there I have a shunt too I got it when they operated on me, and I believe that without it I wouldn't do any of the things that I can do... Link to comment Share on other sites More sharing options...
Super Mario Posted November 19, 2017 Share Posted November 19, 2017 I have a shunt too, had it for over 13 years now. It was fitted whilst I was still in hospital as my cerebral spinal fluid drainage didn't correct itself. In fact it was done as an emergency as I dropped into a coma apparently, not as though I remember anything about it, just what I have been told. Link to comment Share on other sites More sharing options...
luke Posted January 3, 2018 Author Share Posted January 3, 2018 She's had her shunt put in. It has been three weeks now with zero improvement. It's so sad seeing her like this. She looks like she is losing the will to live. She barely tries to talk anymore or do anything. I'm not sure what to do anymore... Link to comment Share on other sites More sharing options...
Daffodil Posted January 7, 2018 Share Posted January 7, 2018 I am so Sorry to hear that Luke . Is there’s any change for mum at all, it can be very small changes at first. She will be feeling dreadful post op again , remember she has to process that on top of her previous scarring so it will be slow so lots of encouragement always helps but just keep talking to her. Is she able to respond when you do? Ask her what she would like or how she feels. I’m sure other members will have some suggestions. Link to comment Share on other sites More sharing options...
Winb143 Posted January 7, 2018 Share Posted January 7, 2018 Hi Luke, Sorry Mum isn't well and I did go to reply then lost post xx Hope Mum picks up soon, and as Daffs says talk/sing to her or even though you feel you are sometimes speaking to yourself keep talking xx I do hope Mum picks up soon and I wish you both all the best...have the Docs/Surgeons said why she isn't responding ? Wishing you all the best for you both xx Never give up xxxx Link to comment Share on other sites More sharing options...
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