TBI/ shunt symptoms after the event

[MrsW69]

My daughter had a TBI at the start of December. She had an immediate craniectomy and was in a coma for three weeks. She became unwell and had a shunt fitted later in January for post accident hydrocephalus. She was clear and concise with her speech from when the trache was removed and maintained this through the whole of January. February saw a physical decline in rehab, with an onset of new symptoms - visibly sunken head, unable to move upper arm, slurred, slower speech, drooling, change in emotion state; eventually unable to eat or drink; laboured speech and difficult to understand and writhing around in the bed. She was Admitted back to the neuro centre for a week where her shunt was adjusted and her appetite returned, although everything else remained the same she was declared medically fit and sent back to rehab six days ago. Three days ago she changed again, writhing around the bed for most of the day, not drinking followed by no longer eating, further decline in communication, emotional deterioration. She is back on a drip for fluids but remains the same. My question is does anyone have experience of these new symptoms arriving later with TBI or shunt issues? Writhing constantly as if in pain; Slow, laboured speech until almost incoherent; loss of appetite; unable to move upper limb. I can’t get a straight answer from doctors who have done a CT scan and say all looks ok so are fine leaving her to suffer in this state. I have no idea if this late onset of new symptoms is normal for TBI? If anyone can offer any information based on their own experiences it will help me to know whether to keep pushing for answers or whether this is something normal n the circumstances that I need to learn to accept. Thanks x

[Painting-girl]

So sorry, Mrs W, this sounds very sad. Hopefully someone with more knowledge will reply to you. Have you spoken to the Headway Helpline yet? The number is 0808 800 2244 ( office hours)

[cat3]

Mrs W, most of us are aware of the 'One step forwards-two steps back' rule whilst coming back from brain injury, but your daughter's inconsistencies do seem extreme. If it were me in your situation I'd certainly keep pushing for explanations of your daughter's discomfort. Alternatively, maybe get PALS involved to query possible neglect .

PALS proved invaluable in getting my daughter in law's poor treatment radically and swiftly improved. I hope you'll get answers soon, and that measures are taken to improve your girl's wellbeing. So sorry you have these additional worries m'dear...

All best wishes to you both, Cat x

[Letsrock]

Hello MrsW, sorry to hear of your daughter injury, very sad.

I hope you get some answers. In the meantime, have hope and as it will be a very difficult path. Try reading this site it may help you understand and give you some hope of helping your daughter.

flintrehab.com/how-does-the...

I use this for exercises and although they seem simple it does seem to be bringing back my limb movements.

It has information about speech down the bottom. Speech therapist would also help for you to get her talking.

Repetition seems to be how the brain repairs itself, Please keep trying as the first 6 weeks are important.

Hang in there, our thoughts are with you.

[lcd8]

Hi MrsW. I'm so sorry to hear about your daughter. What a really horrible situation. Wishing her a very speedy recovery and best wishes. I too have a Shunt and have needed 3 or 4 revisions when it became blocked. What I will say is that everyone's experience (and effects) from shunts are different. That makes it even harder as not everyone goes through the same thing. It even varies with each shunt revision. I have experienced things in the past that were 'different' after each of my operations. Unfortunately I don't have any great advice for you. But don't give up. Keep pushing for answers and maybe get in touch with specialist charities such as the Hydrocephalus Association or Shine to see if they can offer further advice. Good luck. Lulu x

[Letsrock]

Hello, remember to also play some of her favourite music to give some pleasure and is a good way to remember lovely thoughts she has had. Xx

[Shreds]

Hi,

My first shunt failed after a couple of weeks and my speech therapist could not make sense of what I was saying, nor could anyone else, even though I thought I was talking normally. My wife called Headway helpline who said get him to A&E, dont even wait for an ambulance.

Local A&E did not have neuro speciality so I was blue lighted to top Neuro hospital and they operated at 01:00am as time was of the essence.

That saved my life, but the infection was such that they had to resolve that before they could insert new shunt. Two months later, part of which was in a medically induced coma, I recall more of things happening in the Critical ICU, although part of the time, I still couldnt talk properly or do simple things like use a phone.

After my second operation and reinsertion of a replacement VP shunt, I was shocked as to the date on my phone - I had lost two months - but all I wanted to do then was get back to normal.

I had a discussion very early one morning with my neuro who was on call in the facility and he was amazed at the swift recovery.

Since then I have achieved that but there are stressful days even now, something I was told to avoid.

But be assured a recovery can be possible, but do get them to check all possibilities. They are good and very knowledgeable people.

How they understand the intricacies of our brains I have no idea, but thank goodness they do.

(the soothing music idea above is good, do try it)

Sending hope and ❤️

(watching from the outside can be very traumatic).