Husband now needs shunt operation for hydrocephalus - Headway

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Husband now needs shunt operation for hydrocephalus

pozza40
pozza40

Following on from aneurysm surgery and resulting stroke, my husband has developed hydrocephalus and is on the list for a shunt operation today. I have been unable to speak to a dr or registrar for over a week and don,t really know what the expected outcome or dangers of this procedure are. If anyone has any experience of hydrocephalus or shunt operations I would be grateful for any insight.

15 Replies

OMG, things were going so well, as if you haven't already been through enough, I'm thinking of you, no advice, I do hope you get some answers soon, keep us posted.

Shunt can make such a positive improvement, you will notice the difference straight away and so will your husband. Think positive,

Hi Pozza,

My wife had a shunt one Christmas a couple of months after a crainiotomy. They are very routine procedures and nothing at all to worry about.

In fact Roald Dahl (the author) actually invented the shunt system used to eliviate hydrocephalus which his young son was diagnosed with, at the time with no cure.

In my experience it would be good to ask the surgeon \ doctor \ hospital about what type they are putting in and its restrictions on life. I had no information due to it being Xmas but did manage eventually to find out the details I needed (some are magnetic so will require resetting remotely if you have an MRI or something similar)

A charity for hydrocephalus is called "Shine" could be worth googling them, they have great information online and also a card you can apply for to carry in case of an emergency to notify any medics to get you to hospital for urgent treatment.

Hope this helps,

Regards

Rich

Im thinking about you and hope the operation was successful. It is a very long procedure but they are magnificantly well designed and only the best surgeons do, as they are specialist in that research and practise.

Im coming to 5mths since our world turn upside down, ive yet to find or explain my thinking or put into words what the hell is or happening. But what i do know our 19th wedding anniversary this year and he is here, your husband is fighting so hard for you and the children. Hes a strong man your husband, you stay strong too.

Hi Pozza, sorry to hear about your husband & what your going through

I had an aneurysm rupture which I had coiled, a 2nd bleed causing a stroke & subdural hematoma which had to be drained, drain left to long, causing meningitis, meningitis caused coma. I don’t have any memory of any of this but came round 3 months later in rehab but up until then my children thought I was a gonna, making no sense when I did try to speak, not recognising my 1 daughter who, like your daughter was 13 @ the time. I was calling her by a different name, which must have been freaky to say the least. Oh yes I also needed a shunt like your husband. They are routine procedures & nothing to worry about as RocinRic previously said.

Once I got my wits about me, I would not shut up talking & found everything funny, took 18 months (approx) to settle down.

Now almost 5 years on my daughter leaving for uni next month, to study medicine. I’ve learnt I can’t say what I want, whenever I want (we’ll not all the time) lol. My shunt ( found that word hysterical in the early days) has not caused any problems but I carry a card just in case , you can get this from the charity ‘Shine’ online

Stay strong

Sam

Had mine 2008. Probably saved me from a wheelchair but I struggle to hold down jobs despite being a postgrad. Subsequent problems have cost me my marriage, but I would still say go ahead with the procedure.

My boyfriend had this operation around 16 years ago outside of the UK. There were risks at that time in that the process had to be re- assessed several times and repeat the procedure several times before the pressure was 'right'

My husband had a shunt fitted last year and the effects were instant. His cognitive skills improved dramatically and he stated to connect with me and the kids on a more emotional level. Unfortunately for us, he developed diverticulitis in the stomach where the shunt drained and this infection then travelled up to the shunt site and his CSF became infected resulting in Sepsis. He subsequently had to have emergency surgery to have it removed. He still suffers with Hydrocephalus, but it has settled down since christmas after another drain.

I hope all goes well. When it was in place, it worked wonders x

(Husband TBI 9th Dec 2018 after a fall, has had 2 other bleeds, meningitis, shunt infection and sepsis after. Discharged from hospital 16th April 2020 to a rehab unit where he will remain for forseeable)

pozza40
pozza40 in reply to ChazD

My husband is now 2 days after having his shunt fitted and he is not responding to me as well as he was before he had the operation. On a Skype call yesterday he had real trouble staying awake and although he was trying to talk, he wasn’t making any sense, am I expecting too much too soon after the op, I am just so worried that all the progress he has made in the last couple of months has been wiped out.

ChazD
ChazD in reply to pozza40

How has he been over the last few days? It could have been the sedation and operation, wiped him out for a bit?

Hope that things are improving x

Hi ...can I ask how your husband is now....my son had a shunt fitted last Monday after a grade fiveSAH in March ...... he went into kings for a lumber puncture after his scan showed enlarged ventricles ......hi had a lumber puncture and then a drain fitted this led to him contracting an infection in his CSF and having to have six week course of antibiotics ...I too was expecting a big improvement but like yourself I feel he has stepped back ....no limb movement and no speech even though what he had was very limited it was something...I’m so worried .... xxx

HiI am really sorry to hear what your family is going through , I understand completely what you are going through.

My husband had to have a couple of adjustments to his shunt before he started to improve,one was another operation because the shunt was in the incorrect position and he had to have two adjustments after,as to the level of drainage.this they done by use of a magnetic device placed on his head but I think there are several different types of shunt that can be used.

All this took several weeks to do before they felt they had the balance right then he slowly started to come back to the level he was at before the shunt operation.

I hope this makes sense, I do remember how distressing it was to see him make some gains all for it to be swiped away and back to the beginning again, but this was just over 4 months ago and he is doing well.He is in Neuro rehab and is talking well and working hard in his physio.

I hope your son shows some improvement soon.

Take care

Happy new year and thank you for taking the time to write back to me.... how did they know the shunt was in the wrong position...I am so worried the hospital have discharged Craig and he is back in rehab ....we have been unable to speak to anyone about Craig although we were promised phone calls that never materialised and now Craig is back in rehab we have no chance ...it’s all very frustrating ....

Happy new year to you too, fingers crossed for a better 2021.My husband had a scan the day after his shunt operation to check everything was in the correct position ,i think this is standard procedure, and that is when they discovered it wasn't positioned correctly. I don't think they would have moved your son back to rehab unless they were happy with the position and settings of the drain.

I can also remember the frustration of not having enough phone calls and updates when my husband initially went into hospital in May we were in the midst of the first lockdown and like now the hospitals were very busy. I never got to see him until the end of July and relied on phone updates they were sporadic and a lot of the time they would just be "no real change yet"

take care, i hope you have some good news soon

If you ask,you should be given a sheet of paper that lists the signs to look for regarding infection etc, when my little boy was born extremely early,with hydrocephalus,he had an infection and a new one was put in,he's now 9,I had a sub-arrachnid hemmorage back in 2018 but when I came round I noticed a vp shunt scar,no problems with it

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