Hello Phil and welcome. I'm always very moved by posts from people like you as I'm reminded of my family's shock and fear after my SAH 7 years ago. You'll be feeling every negative emotion including panic and disbelief, not to mention the trauma of separation.
All I can tell you is that if your wife has survived the initial bleed and the various procedures, there's every reason for optimism. Swelling after craniotomy isn't unusual and her brain will now be allowed to rest unrestricted until it's considered safe to replace the bone flap or alternative plate.
There may be further unnerving developments (my family described the experience as surreal, precarious & terrifying). But the brain needs time and rest to find its way back from trauma so please prepare for a long wait whilst progress takes place ; it can't be hurried.
Your wife may be unresponsive and probably won't remember most of this period, but your voice and touch will reassure and comfort her in the meantime. Try to absorb the ups & downs as par for the course (massive challenge I know) as brain injury is rarely straightforward. And don't neglect your own basic needs of eating and resting whenever possible.
Keep us updated Phil...….....all best wishes for your wife's good progress, Cat x
Hi, my partner suffered a large bleed on the brain back in early December, not as severe as your wife, but scary nonetheless. As a result of the initial bleed he then suffered seizures every half an hour for 4 days before the doctors were able to control them.
He doesn't remember anything about the 11 days he spent in hospital, and not a lot about the rest of December. What he does remember is knowing I was by his side in hospital and looking forward to my visits. I'm not saying that you need to be by your wife's bedside all the time, but being there will certainly soothe her and it helped me through some tough times knowing that my partner still knew I was there for him.
I wrote on here in the early days about how tough everything was and how my partner had turned into a stranger, staring at the wall for hours, lethargic and unresponsive. I would like to reassure you that the brain is amazing and while I've learnt that every case is different he has come on leaps and bounds, almost to the point where unless you knew his history you can't tell anything is wrong on a casual meeting.
He has dark days and there are days when I cry my eyes out after he goes to bed, there are also days when we laugh so hard together it hurts and we stumble through life like we've always done.
My top tips are:
Stick with it, it gets better.
There is help out there you can access, but you have to push for it.
Be aware that the majority of people don't understand brain injury and the behaviours that can be associated with people in recovery (don't get me started on his parents and the ridiculous things they've said, especially as they've only seen him 3 times since his first admission).
A little bit of progress...….. good news. I agree about the heroes and was so happy in having the chance to thank my surgeon in person ; he'll always be my hero.
Hi I suffered the same in December 2013 ruptured brain aneurysm causing a subarachnoid hemorrhage when I arrived at the hospital i was too unstable to undergo surgery they used medication to stabilize me and on the monday morning I had surgery to place tiny coils in the aneurysm to stop the bleed and six years later I am still here I wish your wife all the best for a good out come best regards Dave
Hi David sugg ...... my son had a ruptured aneurysm and a grade 5 SAH .....it five weeks now and all he can do is open his eyes for short periods of time..... can I ask you about you recovery story .... x
My son had a grade 5 SAH just coming up to six weeks ago ...... he has been out of ICU three weeks now and has had a tracheotomy,a pic line put in and a peg for feeding . He has been pretty unresponsive since although saying that he does open his eyes and we feel when we FaceTime him he is looking at the screen more often ...we think we’ve seen him move his head slightly a couple of times ...he has no limb movements ....I am just wondering if this is normal...did you go through this ..... it’s awful with covid we have one visit a week for 15 mins each ...it’s not enough and he is usually sleeping when we go in...a very deep sleep that we can’t wake him from ...I am finding the who.e thing soul destroying and have so many unanswered questions ...so any support from anyone on here will be gladly received ...love Jacque x
Hello Phil, I had an SAH4 in 2009, I had Ventriculitis followed by UTI and to top it off Sepsis.
I am glad I remember none of this. But I had people who loved me and helped me through it. My sisters used to sing to me, my Daughter asked her Dad " will Mum get better Dad" and my hubby said yes but when? I was off with the fairies seeing my Mum who had passed and also Dad. Mum would never talk to me. She would tell people off if they did. Your wifes brain feels like it has been in a war. Sing to her, talk and even though it seems like it isn't getting through, never give up. She just needs to heal and it is a long process, make sure they empty her catheter if she has one in as I swear that is what caused me so much pain and Sepsis. Talk about the old times as she wont remember recent things, well I never. Some on "Behind the grey" have had craniotomy. Lucky I just had coiling. I wish your wife all the best and keep yourself well as she will need you when She wakes up. Wishing you both that she gets better and better every day. I cried when I read your mail, we become watery heads after B.I.= Brain injury but I know I am better as hubby argues with me now. Good Luck xxxx Long Journey so hang on in there xxx
6 years ago my partner had emergency brain surgery to remove a rapidly growing tumor. The week following surgery was very similar to what you’re dealing with right now. Trach, induced coma, etc. it’s a very frieghtening time. Not knowing what is next. Just breath, cry, lean on friends, reach out to as many people as you can, whatever comforts and strengthens you.
Every case is unique but my partner is doing pretty well, 6 years later. The first 2 years after there were a lot obstacles. She had to learn to walk again. And she had to have speech therapy after the trach was removed. You’ve got to stay positive as best you can, attitude is EVERYTHING here. She’s pretty close to who she was physically now. But her cognitive functioning is compromised and that has taken a toll on our relationship after 6years. All-in-all, she’s very lucky to be healthy. I’ll pray for you and your wife. I’m always here if you need to talk.
You find you do eventually accept what is going on. At first your mind is in a kind of denial and you think your loved one is going to wake up and be out that door in a few days. It is so very very hard.
Keep visiting and keep talking. Might help for you to keep a little progress diary. When you read back later on you can cheer yourself up by looking at the milestones.
Yes we do plea bargain with God. We get so desperate.
Really hope with all my heart that things go well for you both.
So important to take time for yourself else you will become over tired and not cope. Just a long bath or a favorite meal or catch a film. Most importantly.... Sleep.
In time the fear subsides, then it's a long climb to a new kind of normality...…….which is a safer but very different place.
Most of us have looked back in awe at what we (and our loved ones) have survived and progressed from. I hope it won't be too long before you're both looking back amazed at how far you've come. x
My Daughter felt she couldn't talk to her Dad as he was worried for me, so they both hid their fears from each other. (So my Daughter tells me). It is natural to be scared when someone you love is ill. Remember her Brain has been through a war and her sleeping might be the brains way of resting and healing itself, I read this in "A message from your Brain" My Daughter used to ask my Sisters "include Mum in conversation" but I was out of it so they sung to me. Good luck on wife's recovery and we do get good days and bad ones and it is hard on our Loved ones. My husband said you took 2 steps forward then 1 back in recovery. So just be there for her and she is a fighter so get her to hear you as one day she will XX Good luck the pair of you xx Also remember to make sure her catheter is emptied regular if she has one. That was painful for me, So I tell everyone this bit of advice. Sorry if I repeat it. Now rest relax as tomorrows another day and hope it is all good news for you both
So glad she is out of intensive care. I always found that space ship environment quite unnerving.
Nothing wrong with being emotional and it's good not to hold it in. I couldn't
hold a conversation with anyone for a while without breaking down. People understand. Lean on them when you can. I found an incredible amount of kindness even from business people I had to deal with. It will pass and you gradually start holding it together.
Staying positive is the best thing to do in situations like this. Please visit my YouTube videos I have done to help others through these times. They are positive and give hope I have attached link here : youtu.be/qM7qgw79k_o
You are having to cope with an unbelievably difficult situation and the pressure on you is enormous.
These are very dark days for you but the really difficult thing is no one knows what the outcome is going to be.
If you read all the posts on this forum you will read about many people who have come through this. Yes, for some the outlook is not so good but you are in such early days. We always think the worse.
If you need to talk have you considered ringing the Headway help line? I found them to be very supportive and they helped carry me through.
Headway may be able to talk through a few of the issues you mentioned earlier.
She appears to be responding to you so keep talking to her. A bit of music, reading to her. Pick something she may have enjoyed in the past. We don't know how aware people are but she will find your familiar voice soothing.
When my husband come out of it for a fortnight he called me Wendy and thought I was a girlfriend long before my time. I was thrilled. Not.
Then he thought he was in a hotel. Then at work. Then on holiday and finally come back to me. It all took time.
Morning. Thought I would jump on this as I can relate as both our partners have suffered a severe tbi.
On the 9th December 2018 my husband was playing with our youngest child (4) and tripped at the top of our stairs, falling backwards top to bottom talk g the whole impact on his head. He was unconscious instantly and had trouble breathing. He was airlifted to a neurological centre about 30miles from our home for emergency surgery. He had fractured his skull in 12 places and had a palm sized subdural Hematoma on his right. They performed the crainotomy and replaced the bone. 24 hrs later they proved the bone as the pressure was too high.
We were transferred to our local hospitals ICU 13 days after where he stayed for the next 16 days (29 days in critical care in total) He was taken off sedation around day 21 and we were lucky that his co dulrant gave him a chance to breath on his own before doing a tracheostomy. He was moving and talking (very garbled but answered questions etc) On day 46 I had a phone call from the ward to say he was being blue lit back to the Neuro centre for emergency surgery as they had found a huge build up of fluid and a smaller bleed on his left side after I had spoke about his sleepiness.
He responded really well and was only on ICU for 2 days and then a Neuro Ward. He started to drink and eat and sit in a wheelchair! On day 57 they decided to put the bone back in place as they were happy with his progress. 4 days after the surgery he started to become unwell and on day 66 they removed the bone they had replaced due to a massive infection. To say things have took a downward spin is no exaggeration. After that surgery he was so poorly. He stopped breathing, his ventricles keep producing too much brain fluid so has to have lumbar punctures, developed epilepsy, stopped moving, stopped talking, stopped eating - was basically in a minimal conscious state.
Today is day 125. He started to swallow fluids this week and instead of just staring into nothing (so un nerving) he has begun to focus and you can see in his eyes he is there.
This journey is so long. We are both only at the very start. I am mentally exhausted. I have to put on face to our family's and 3 young children and work and it's bloody tough! I have made peace with the fact my husband will not be who he was, but I now concentrate on the now and next, not the was.
He may never be who he was but he is still here, so this will just be our new chapter.
I don't think it will ever get easier but you do start to find a bit of stability - especially when your not in that critical care environment where you can take 5 minutes to process a bit more.
Ask questions. The lack of communication is shocking and I have to badger for information all the time.
Keep in touch. We both have a long road to travel with our partners - I pray for both of us we get to our destination without too many detours along the way x
My husband has quite alot of swelling around the ears. Check inside as he had a build up and it was CTF leaking out! I have often felt very much on my own and when I ask questions they bat around to the point where I have to say I'm not bloody stupid, just tell me what's going on.
I have found that they often don't really know as things can change daily or even hourly, especially at this earlier stage. The photos will be good if you are getting a private referral.
I often worry I should have been more forceful and regret not being able to afford to get private healthcare.
Make sure you are looking after yourself before you burn out. We are no good to our loved ones if we cannot be there to support them due to ill health and mental exhaustion.
I found the information was hard to get but in the end I got a face to face in a private room where all of my questions were answered. It shouldn't be this way.
Once we got to rehab it started again.
I blew my top when I was told a dol order had been placed on my husband without my being told. They have monthly meetings and it was two weeks after the event.
However they did eventually all make him well enough to come home so I can't say they were hopeless just need some communication skills.
Hi, my wife suffered a acute subdural haematoma, a multifocal subarachnoid haemorrhage plus a double skull fracture. She too required a craniotomy, suffered a serious lung infection 4 days post surgery and then sepsis 6 days post surgery. She spent a little over a month in an induced coma and then 5 months in rehab. She had no use of her right arm or leg, poor speech and poor memory on admission into rehab. I too saw a mountain to climb. I'm pleased to say she was discharged home last Friday and continues to recover. She regained movement and full use of her limbs about 8 weeks into rehab, so 15 weeks post injury. Her speech and memory improved significantly around 12 weeks into rehab and continued to do so until discharge. She is by no means fully recovered but each day is a step forward. It will take time, your wife has made huge progress, time will do the rest. Each day you are one step further away from the injury and one step closer to recovery. I wish you both all the best
I have only just read this whole thread start go finish and it was line reading a book or watching a series. All I can say is, from reading it, I can see the HUGE improvement she has made. 58 weeks down the line and you continue to be her rock despite the constant worry, endless help, anxiety about your future. She is blessed to have you by her side. You will get through this. I’m 2 years post SAH and the only reason I have the strength is my husband who is constantly by my side. If he gives up, I give up my fight. I was touched by your strength in reading this. God bless you.
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