One step forward three steps back: We are 4 months... - Headway


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One step forward three steps back


We are 4 months in to this nightmare where my husband has suffered a stroke following surgery for a giant aneurysm. He has had half of his skull removed to eleviate pressure and had started to make some progress with rehab,regaining some purposeful movement in his right side.

3 weeks ago he developed hydrocephalus and has had a shunt fitted , ever since he is hardly awake, is not making any sense when he tries to talk and it feels like he is right back to where he was when he was just coming out of the coma. The drs are non commital telling me only time will tell what will happen, that is so hard to live with day in, day out.

I got to visit him yesterday for an hour, it is breaking my heart, one side of his head is completely sunken now and the other side has a large stapled incision from the shunt operation. He was very difficult to wake and when he opened his eyes, I am not sure he registered that I was there.

Then last night, I rang the hospital to see how he was,to be told he has developed a chest infection and any further procedures ( his cranioplasty) will now be delayed until this is dealt with.

I am sorry for such a long post, I don’t really have anyone to confide in, family do ring to check how he is doing but with the children in the house, I am painfully aware of how they gather every time the phone rings,they miss their dad so desperately, that I don’t go into detail and I am trying to keep this ball of desperation inside, but it’s getting harder.

11 Replies

No words, you know I'm only 2 months in but I'm here for you and think of you often. Take care.

Hi. Unfortunately it is a waiting game to see how things pan out. He has in quick succession had three big assaults to his brain.

They will want to clear his chest before further surgery, he has enough to deal with at the moment. To put him under with a chest infection would be dangerous, so they are trying to get it right.

Wishing you all the best.

It's hard for you Pozza seeing your man at this stage between the craniotomy & cranioplasty. But a chest infection (often the consequence of lying flat for prolonged period) will take precedence in getting everything back on track.

I hope once the infection has been controlled with antibiotics and the pressure fine tuned, the cranioplasty will bring about the re-start of your husband's recovery . Try to keep in mind how many folk are here on Headway sharing their own stories of these procedures.

It's so tough keeping strong for younger family members ; I feel for you all. But don't suffer alone. Although we can't help in practical terms, you're among friends here who, I hope, might help you feel less alone.

Thinking of you and wishing you all better days ahead, sooner rather then later. Cat x

I just want to hug you. I have a lump in my throat reading this. I dont have anything to say with what pairofboots, 123bereft and cat3 has added. Just thinking of you.

I have a lump in my throat reading your post. It is a waiting game I am afraid.. Try to keep hope. I am only alive today because what can be referred to as a miracle. Just keep believing

Hi, I have been thinking of you after seeing your post recently. My partner has been in intensive care for 5 weeks and today had his shunt fitted. I am worried. I hope your husband is making progress. But from what I’ve seen on this forum so far, it is a long process with ups and downs. There will be setbacks, but keep hoping for an overall increasing trend. I hope you’re managing to look after yourself. Sending you and your husband my love.

Still thinking of you.

Thank you all,for the kind messages of support, I really do appreciate them. Things seem to be making some progress, my husbands speech is becoming clearer, still slow but understandable most of the time.

He is clear of the chest infection and the next step is having a peg feed done, his cranioplasty has been put back for now.

He is restarting some physio but he finds it very tiring. He cannot sit up,has no movement on his left side and doesn’t seem to look to his left side either.

I am getting to see him a few times a week now, which is good and last week on our 25th wedding anniversary he gave me a tentative peck on the cheek .

Let’s keep going everyone, it can only get better,right.

Saltness in reply to pozza40

Sorry should have this before I posted but great news keep the chin up.

So glad to read this post, made me smile x

Cannot add much more either but certainly feel your pain. You will be told this many many times but please try and share with your family and friends and try hard not to burn yourself out. Instead of one in a crisis there will be two. Thinking about you and be assured the professional people will always be giving 110 percent and more.

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