Cranioplasty date has been set, any advice gratefully received

[pozza40]

So my husbands cranioplasty date has come through for the beginning of August. He is 13 months post his aneurysm surgery which resulted in a massive stroke and craniotomy.

He has been home 2 months and is pretty much bedbound. He struggles with sitting balance, in fact I think he would just topple over if there wasn’t a person on either side of him,supporting him. He can only manage an hour a day in his wheelchair and seems to have constant pain in his affected side.

Does anyone have experience of progress after cranioplasty or progress this amount of time post stroke.his physio told me yesterday that she feels walking again is unlikely. I just need to know what to prepare for.

Thanks for taking the time to read, any insights gratefully received

Take care

[123Bereft]

Oh Pozza, my heart goes out to you. My situation not any better either, my partner's cranioplasty is due in 2-3 months. Sending love to you my friend.

[Marnie22]

Hi. I can't give any help or advice myself, but it might be useful to call the Headway helpline on 0808 800 2244. They have such a wealth of knowledge and can also give you support. I hope everything goes well. Best wishes. 🌻

[philbou]

I saw it as making them whole again

It’s a step forward however small

Yes there are worries about surgery

And it all about healing from then on

Give my best wishes and a hug for you

[Charlie90]

Hi pozza40 it sounds like your husbands history & my own are pretty similar I too had surgery for an anuerysm which caused a catastrophic bleed and craniotomy I am 18 months post this now stillawaiting my cranioplasty, I have read many articles about and spoke to many doctors therapist about functional improvement after cranioplasty, so I will remain hopeful about this. I am sending all my positive thoughts and well wishes to you both as recovery is a very difficult process not just for him but for you as well take care

[New_beginning]

Hello Pozza40, I have often thought about you and 123Bereft, and although tough journey were on, I'm glad to see your post.

I have no answers sorry. But 1hr in chair will be your target after surgery and expected recovery. Be kind to yourself; you are strong, determined, committed to your loved ones.

I hope you get replies from experiences, and I truly hope all goes as expected with your husbands surgery. X

[123Bereft]

I was also thinking about the fact that before the cranioplasty is scheduled, I have to 'attend' a best interest meeting, to discuss whether the surgery is in my partners.....you get it. I said that surely it is in his best interests because without it his head will always be vulnerable. Telling me that this meeting has to happen feels like the surgeon is saying that my partner isn't worth his effort, him being in a minimally conscious state. Did you have one of these meetings Pozza?

[pozza40 in reply to 123Bereft]

No,all we have had is a telephone call from the neurosurgeons secretary asking questions about how my husband is doing. At the end of the call she said he sounds ready, I asked when it would likely to be and how long would he be in etc,she said I would be notified.All I have got is a letter with the date and time telling me what ward he needs to report to.

We never seem to get all the information, do we

I don’t know how to get him there,what to send with him,whether he will have a chaperone because I won’t be able to leave the kids at home alone.

I don’t know if there’s any risks with this operation,there was no information leaflet in with the letter, I would have thought it would only be in every patients best interests to have their brain protected.

[123Bereft in reply to pozza40]

Just more worries for you 😕

[S21NTE]

Our situation is somewhat different, however my husband is now 7 weeks post cranioplasty.

I do not understand why this surgery is classed as elective. There’s the obvious benefits from a safety aspect, particularly as my hubby has post traumatic epilepsy, plus the boost in self confidence from looking like himself again. But I can’t begin to tell you how much of a difference it has made to his headaches, balance, and what we call Pingling! This is numbness/ pins and needles down his arms and legs.

The first week after discharge was hard and he was poorly as expected, but since then we haven’t looked back.

My hubby has his surgery 17 months after a severe traumatic brain injury.

Wishing you the best of luck and I hope that you too get positive results. x

[pozza40 in reply to S21NTE]

Thank you for sharing your experience,my husband also suffers with a constant headache and the pins and needles sensation you mention.do you mind me asking how long your husband was in hospital forThanks

[S21NTE in reply to pozza40]

My husband was in for 3 months. He was assaulted. He had 3 bleeds; inc subdural, subarachnoid and Extradural. He wasn’t expected to survive the night but apparently miracles do happen. He’s amazing.

I can’t believe the difference in him since his reconstruction, but I think that the Drs are very cautious to give too much hope on the results. So far, touchwood, this has been a very positive move for him. x

x

[rachy_lith in reply to S21NTE]

thank you for this comment. We are awaiting my husband's CP and was feeling very anxious. I wrote a post about it and your comment here has answered it x

[Headshrink]

It is possible to improve faster than expected post cranioplasty i noticed a sudden change in my cognition 2 weeks after, however, iwas walking by the time i had it. So remain hopeful but dont expect too much. I know its hard but from my experience things can always change, the brain is remarkable

[Sal_T]

Hi Pozza, I'm glad to hear your husband's cranioplasty has been scheduled. My partner is still waiting for his. He is 18 months post traumatic brain injury and the lack of protection for his brain is really holding back his recovery now. He's just got his driving license back - which is great but he's terrified of hurting himself again and ending up back in hospital. I keep trying different ways to get his op moving but nothing seems to work. I think it's disgusting that the surgery is considered elective, and I was also told 'cosmetic'. As a result we're having to fight for him to receive it, its exhausting.

[HungryHufflepuff in reply to Sal_T]

I'm so angry about what's called cosmetic surgery. It should be called reconstructive surgery.

[S21NTE in reply to HungryHufflepuff]

I thought exactly the same. How on earth is this surgery classed as elective when without it the person is so vulnerable.I called our surgeons secretary every single week chasing it. I stressed massively the impact on his mental health, he was really struggling. Coughing and sneezing bought him to his knees. He saw the surgery as his way forward and couldn’t move beyond that.

My husband has post traumatic epilepsy, this again helped my cause.

We still waited 18 months and had two failed attempts along the way, cancelled due to Covid!

The good news is that the surgery did have a positive impact overall. x

[HungryHufflepuff in reply to S21NTE]

Im glad the surgery had a positive outcome for your husband 🕊

[HungryHufflepuff in reply to Sal_T]

I don't mean angry at you. Apologies if that wasn't clear

[Sal_T in reply to HungryHufflepuff]

Hi Hungry Hufflepuff, don't worry, your message was clear! I'm angry about this too, and completely agree - it should be called reconstructive surgery. Thanks it's nice to know I'm not the only one who has been told this. x