Hope after a TBI: This is my first post following my... - Headway


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Hope after a TBI

claretand profile image

This is my first post following my TBI. My husband joined the forum shortly after I suffered my TBI so I am using his log in to post my story and to thank the many that post their stories on this site. It gave my husband immense encouragement, I have just read many of the posts and survivors stories that have been posted over the last year or so and it gives me a huge sense of optimism for the future, I have only today found the courage to log in to the site and read many people's stories. My accident was on December 1st last year, a fall down the stairs resulted in a double fracture on my skull, an acute Subdural Heamatoma, and a double multifocal SAH. I underwent a 8 hour emergency decompressive craniotomy. Recovery in Critical Care was slightly dampered as I contracted a severe lung infection and sepsis within days of the surgery. After 5 weeks in an induced coma, a further 5 months in rehab and a cranioplasty I was fortunate enough to return home to continue my recovery. I have been fortunate in that my memory has returned, there are naturally some side effects, the excessive fatigue, anxiety and a couple of other minor things but all in all and thanks mainly to the surgeons, the nursing staff and my amazing husband my recovery has gone well. Still early days and still a long journey to walk. This is my story, for those of you that share your experiences and give advice to those that seek it, you do an amazing job, for those of you in the early days of recovery there is hope after a TBI. The effects of our injury may be blind to the naked eye but the experiences and advice that we can share can give us all strength. I am a survivor and for that I am thankful.

22 Replies

clare love hug x your special i am so honoured to reply to you and love im so amazed

at your strength and heart character your blessed love and all are family here on our

special site will like me now be so touched in our hearts will be thanking god you got though that i wasnt going anywhere today love im bad at the moment but im getting a shower

going to get on my mobility schooter go down to church and light a candle to thank jesus god in a little prayer for you clare for getting you through what you have been through

and i really will you are an inspiration and in your post love you have giving a lot of family here hope x hug for your husband eddie

Welcome Morag. You've been through a tough time haven't you. But it seems you're a determined lady and it's good you've decided to come to Headway for extra support and to inspire others with your story.

We're all a bit battered & bruised from our varying brain 'events', but this is a great place to come for reassurance of life after brain injury. I look in every day (since a SAH 7+years ago) as it's the one place I can really be me and I like to keep in touch with other members.

I'm sure you'll be a valuable contributor with all you've achieved since your accident and your fighting spirit. Good to meet you m'dear, and hope you're doing ok.....

Cat x

claretand profile image
claretand in reply to cat3

Thanks for your comments, I have read a number of your replies to members, you clearly have a wealth of knowledge and understanding of the difficulties that many survivors experience. I am fortunate in that I have and am still making a good recovery. Like you, I am happy give advise to anyone in this community that may find it useful or comforting.

Charente profile image
Charente in reply to claretand

Yes cat3 is a kind and knowledgeable soul. She makes the world a better place 😘

cat3 profile image
cat3 in reply to Charente

🥴 x

Welcome to the group. It is invaluable source of support.

Can I ask if you are receiving any neuro rehab in the community?

claretand profile image
claretand in reply to

Hi, I had neuro rehab when I was in the rehabilitation unit. Following discharge I have had a couple of appointments with my neurosurgeon and the therapists at my local nhs authority and both have told me that I need no further neuro rehab.

That is excellent news - I hope that you can re-access their services if required 💜

claretand profile image
claretand in reply to

Thankyou, the therapists at CERU were excellent. I was refered to the physio and psychological therapists once I was discharged, I have met them both once and both have agreed that no further therapy is required. It is now just a case of time and the natural healing process.

in reply to claretand

That is really to hear💜

Hi Claretand,

Glad you are improving with each day and Family do help so much, I was in Kings Hospital for an age and remember nothing. I awoke when shunt was fitted as hydrocephalus had set in. I never knew what was happening which is a good thing. So have to ask family what happened. I also caught Sepsis, Ventriculitis. Must have been hard on family xx I still feel the guilt I put them through well sometimes !! Depends if I have an off day. They were told I'd never get better and put me in a home by OT's as I played them up so I am told ??? ...Anyway you are back with family. When it stops raining here I have to walk around the Garden to strengthen back up . Short term memory is bad but improving Good luck to you and hubby and always remember we are Survivors xxxx Not the only ones xxxxxx

Hello, it sounds like you had a rough time too. I remember very little from the early days. I know it was a strain on my husband, he came to the hospital and rehab every day for a solid 6 months, it was a 3 hour round journey for him and he never missed a day. He was told the day after the accident that it was a significant brain injury and that it was likely that I would suffer some long term disabilities. I feel I am getting better week by week, my fatigue seems to be less each day and the dizziness is far less prominent than it was. I wish you well and hope you recovery journey goes well.

Like your husband, I have taken comfort from this forum. I'm glad you have come on too, he won't! Sounds appalling, what happened to you, and I'm so glad you are making a good recovery. It's my sincere hope that you will continue to do so. All the best to you, and all the other contributors of this site. xx

Thankyou so much, it took me a while to muster the courage but I'm glad I came on to the site.

Welcome to the group. This is a great place to share ideas and speak to people with similar experiences.

Thanks for posting... It helps me too reading all the recovery stories. My son is 10 weeks into recovery from TBI and requires a cranioplasty too. He has amazed me with his recovery his memory is returning and Speach improving each day. It gives me hope to read your story thanks so much and best of luck x

claretand profile image
claretand in reply to leila65

Thankyou, I'm just glad my story can give comfort. I know it's a difficult and upsetting time for the close family. My husband kept a very detailed diary of my recovery process and researched many aspects of the rehabilitation process. It sounds as though your son is making good progress. I wish him all the best. As my husband told me daily, as each day passes, we are one day further away from the accident and one day closer to recovery.

Hiya. Welcome - you're now a Survivor, like the rest of us :-). I hope that you continue to improve. The odds are that you will. Try not to feel down if recovery seems slow.

Keep us informed?

Phil (TBI 20+ years ago) x

claretand profile image
claretand in reply to SillyPhil

I will and thanks, it is almost a year since my tbi. I feel my old self returning as the weeks pass.

Welcome claretand,

A story well told and understood. The most important, single piece of advice I can offer is: avoid confrontation and stress at any cost, let your family know!!

Do the things you like and enjoy, make the effort to exercise when you feel able, relax, sleep and try contacting your Brain and mentally instruct it to heal itself! There will be good days and not so good days, there is no rush, I am about five years into my Ataxia and hope to make eighty years of age. Some days I feel so good until I overdo it and think how much progress I have made whilst resting in my recliner afterwards. I have no medical training just my experience and a very supportive family.

Wishing you continued recovery and best wishes. :-)) Stedman 211019

Thankyou, my husband ensures that I am in a stress free and relaxed environment. He has told me to take things at my own pace and let nature do its work. With each week that passes I know I feel stronger and more capable. I'm hoping to live to 110! I appreciate your advise and best wishes to you.

Hello Clara.

Yours sounds similar to mine - I fell off my bike in 2005. I was off work for 18 months, but I *did* go back. I am not back to normal, and I never will be, but the improvement is still happening (although very slowly - maybe it is just me being hopeful!).

Well done for coping so well - and to your husband, as well. Yes, I was in a coma, but things must have been terrible for him, dealing with a baby, and a toddler, and a wife in that state - he must have been so unhappy, and so scared!

So, welcome to this site.


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