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Post on behalf of Palhuc

 

What I really would like to know if any any can tell me is what are the signs of returning leg function. My husband had a stage 4 bleed that he was pretty much given up on. They wanted me to let him go whatever that meant but I refused. Today 6 months later he has a bad bed sore due to hospital neglect but is is extremely aware talking and is coming back now very quickly all in the course of about 2 months.

 

He will have a swallow test tomorrow and is considered medically sound as he has no other medical problems.  in addition he has had no speech problems , his senses all in tact and very witty and with it. he is writing  reading  and speaking very well but he is not walking. Or eating, though he can wiggle toes on command and today after a week can now rotate foot. Does anyone know is this a sign of returning leg function. It has been a long road and far from over but he has developed a sense of calmness, and tells me he is prepared to work hard to come home.any comments about legs. thanks

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Hi, I can't comment too much on the leg function as every case is unique.

 

I was able to regain my walking relatively soon after my grade 4 . That said It was slow progress, and I started with a stick and had to use a mobility scooter for a while but I didn't spend as much time in hospital as your husband in comparison. Even after a much shorter stay though I had no physical energy or reserves, I had lost a huge amount of body weight and muscle mass and it was a struggle to coordinate and I fell often. Everything was baby steps so don't give up. 

 

Has he had physio? Sounds to me like a prime candidate for rehab and physio exercises. If the hospital aren't supportive then get in ouch with Headway and enlist their help to advocate for you.

 

good luck. Glad that you are working towards this together, it's a long haul but progress is there to be made. 

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Had a horrible day hubby is healing from a stage 4 bed wound caused from hospital neglect, they gave up on him and gave him comfort care non aggressive wound care.now because of this his rehab will suffer because the wound requires bed care.

 

My husband is very cognitive and talking up a storm very witty but he is not eating and not walking.

 

However in three days he has gone from wiggling toes on command to rotating ankle. Right leg is just jumping much like left did a week ago.is this a sign he may walk will that happen despite the lack of mobility.Im told by case worker who spends 5 minutes talking to him he will likely end up in nursing home.

 

My hubby is doing everything and anything to regain what he has lost. Today throwing tension ball to play catch. I,m told I can visit him in nursing home . But also told they don,t know what future hold or if he will walk.?....how do they know he won,t?

my hopes for him is to come home,but if no rehab what chance does he have.they are however waiting for a subacute bed with a wound vac and bed .they will do some rehab there and he can stay as long as he needs to heal. I have been given so many scenarios from this hospital and opinions from staff don,t know what to believe any more.

 

But this is my hubbys life what to do?what am I missing why the refusal to do physio and though no swallow test been done they said he coughed. When he was given apple sauce.the actual swallow X-ray not done yet.. .Coming back from aneurysm  is up and down but the stuff I have been through with my hubby would jar anyone's preserves..

 

 

 

??

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I am told people who have stage 4bleeds can lose rehab progress if not aggressive about it.does anyone who has come back from this type of aneurysm feel this way.

 

It took my hubby 4 months before talking after coming out of minimally conscious state.however when he did he has great speech, reading cognitive,etc very attentive, responsive  he writes good math and long term memory.poor short term.however when they came back it happened within 2weeks.people were blown away how much and fast progress was.

 

But his body coming slower but returning slower.however very obvious signs.

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hi palhuc

 

You haven't said which part of the country you are in. The hospital can start vacuum therapy where he is so ask why hasn't it been started, my lin had grade five pressure sore and the care home she is in tried for eighteen months to try and heal the area . I asked for a surgeon to review her he came in and examined lin and stated he wanted vac therapy, within three weeks  the sore had totally healed  but the area will always be a vulnerable area. I know it cost £1200 per week but it worked .

I would also ask the hospital to refer him to a rehab hospital, I know of two and I know the one lin went to did a marvellous job. Its when she came back is where some problems started.

 

I would ask why no intensive phyiso is being carried out

 

I could give you more help if I could but keep pushing for a rehab centre and the vac therapy. I will send you the two rehab centre that I know of by private message  good luck and regards to hubby

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Hello Paul 99

I was not aware that this site is in the UK. Sounds like you have a superior medical system. My hubby has been getting wound vac for nearly 6 weeks and I was told it slowed down about 2 weeks ago, however I am told it is working again, it they are telling me the truth.my hubby' wound is a stage 4.however you bring up a good point why would they not be giving him intensive therapy what might I be missing,. I am told he is getting range of motion but that does not seem like enough.though his mind has responded very well his body is slow to come back.

 

I am told however 6 months is not a long time. If I look back to where he started he has made phenomenal progress.just in last 6 weeks.He has overcome so much from the beginning and has done very well even had a pneumonia from aspiration, he was not well cared for despite my daily efforts to question his medical. The surgeon gave up on him after 1 month who does that, he was in a minimal conscious state for about 2 months but 6 weeks ago it like a light turned on and he has been advancing every day.

 

Will have swallow test this week was told though might be too soon as he was coughing after eating a bit of apple sauce. It does appear they are working with him just don, t know how much. I spend at least 2 to 3 hours at hospital at least 4 times a week. Have been going for 6 months. i am kind of exasperated with his care. We are from western Canada. I thank you for your input. What could I be missing it seems like his advances are not being reflected by his care.

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Hi Palhuc

 

Thank you for replying, yes six months is still very early in his recovery  but the option of improving is still there and will be for a long time yet that part never stops.

 

Yes I do understand about the D, Lins Dr was the same, it makes me angry when I see or hear about it from others. The Surgeon has done his job but he should have handed hubby over to a Neurologist for on going rehab the Neurologist is the Specialist.

 

I think from what you are saying, the vac therapy was working then stopped, could be because they couldn't get a total seal around the wound hence the failure to continue healing and the restart commencing again.

 

I think that you should insist that hubby be referred to a rehab centre which I know they have in Canada.

 

Yes, Karen set up BTG here in the UK as a result in her incident and it has been a God send to me and to all who have joined and viewed the site. BTG has many people from all over the world coming on getting answers and support which has not been forthcoming from the hospitals from which people get reassurances and the knowledge that they are not alone. There are people going or have gone through exactly the same scenario as yourself.  Please keep us updated, good luck.     

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Paul 

Yesterday the hospital case worker told me prospects for someone like my hubby who had stage 4 bleed were not good for recovery of walking. He has been making incredible recovery, he is extremely cognitive, his speech requires no help  He reads writes and has no loss of words etc  and is now being assessed for eating. Using both hands though one a little better than other .I am told not incontinent and medically his vitals are excellent. He has no medical issues other than body stiff from being in bed for 6 months.

 

He is pretty much determined to be his own rehab while waiting for wound vac. His feet, one moves alot when asked to wiggle toes and he is in less than  1 week already rotating ankle. The right leg like the first 2 weeks ago is jumping as well, toes slighty moving but showing increased movement every day. Is this not signs his mobility is returning ? Why do they insist he is not eligible for rehab, he is nowhere at the minimally conscience state he was at any more, in fact far far from it but their assessment has not changed since feb 13.

 

In fact it seems the more he improves the less they are wanting to do anything. However in fairness to doctor he did say to wait and see how far he will come. Perhaps where hubby is at, his caseworker is just not up to speed, because even doctor does not know yet what his improvements will be. I 've been  fighting the medical system ever since his aneurysnm rupture.

 

On a lighter side I asked hospital to not trim  my husbands beard as this is our bonding time i trim face for him. Last week they convinced my husband to shave everything off and left his face totally marked up from shaving cuts, not to mention he has had beard for forty years. Just no respect for patient or family, but it was my husbands choice  so I did not make a deal of it, they were determined to shave. Was told no medical issues regarding beard. This is going to go on so I guess better get used to it, but I do not understand what the issue with rehab is all about.

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Hi Palhuc,

 

Welcome to BTG.  They say God moves in mysterious ways!  Well, so do our brains!  They are very complex, hence the many differing stories surrounding recovery.  I would suggest to you that you keep pushing for physiotherapy and, in the meantime, keep encouraging your husband to move what he can, encouraging him to test his own boundaries but only when he feels up to it. Don't overdo it, make sure he gets plenty of rest too.  Help him, don't push him, and don't do anything risky.

 

Keep a diary so you can chart his progress.  Not only will that diary be reassuring to you, but it will be tangible evidence to show the doctors and nursing staff that there is progress to be made with your husband's wellbeing.  Remember, though, that something that seems tiring to you, is ten times more so to a person with a brain injury, so cut him a bit of slack.

 

Whatever you do, don't give up hope.  Amazing things can and do happen, but look on every bit of progress as a bonus, not an expectation - and don't expect too much too soon.  There are no guarantees but it is important that you don't give up on your hubby and also that he can see that you are not giving up. 

 

Paul 99 (above) is a fine example of that.

 

The problem with SAH is that there is so little research and aftercare and it is why this site fills a gap for many people - patients and carers.  Perhaps it would be helpful for medical staff to look at it occasionally too.  Why don't you suggest it to some of the staff there and let them have a look.

 

I wish you the best of luck getting the help you need at your end and hope your husband continues to improve in leaps and bounds (not literally, I don't want you bouncing him round the room!)

 

Best wishes,

 

Macca

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hi palhuc

 

I understand what you are saying but put a formal request in to the hospital and ask for a neurologist to come in from a rehab centre to review hubby and see what he says because he will be the expert   if they refuse then take it to the hospital manager or director because what they are doing is immoral  as macca says there is so little known about the brain and that's the problem.  I presume you and hubby  are insured im sorry if im wrong but the earlier rehab get him the better as for forcing him to shave his beard that is unforgivable ask him when you are alone if it was his own choice to take it off or if he was coerced to take it off

 

know there are many on here who have suffered grade four and five make an impressionable recovery's she is talking rubbish

 

my story is under the carers section my darling lin  which shows how I have had to deal with what happened  good luck hugs and cuddles  make sure you take time for yourself xx    

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Paul thank you for your positivity my husband has made another big stride today he took the swallow test and passed then ate soup , pudding milk and cream soup with mashed potatoes.

 

This all happened within 15 minutes from his test he has proven since  surgeon and brother giving up on him one month after bleeding 4 aneurysm that he is in control of recovery..

 

My hubby is not getting body back fast but is very cognitive and has pretty much regained  a lot but his legs and lost some function of hand. We have given him several items to work him in hospital and has mastered most everything extremely witty and shows new found empathy, but how to get legs back after a bad bed wound hospital neglected.

 

I am told even after all progress he could end up in nursing home.but why when he just needs rehab.to get body limber and strengthen core are they not transitioning him. What am I missing how to fight this if I can,t understand.

 

Everyone says we have to wait but caseworker says if not given therapy  right away he will never walk. But he has bad wound? Does anyone get how back and forth this battle is. I have already had the fight of my life to get him moved in hospital away from surgeon and on to stroke floor,they already admit he is already an amazing recovery.what am I missing?.????

 

Yes Paul in Canada we have great insurance and we are covered for all his needs so that clearly is not problem.

Pal

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hi palhuc

 

really pleased about hubby and achieving the swallow reflex. now he could start to eat proper meals, albeit slowly, you don't want to slide back which shows in his witty replies to you. great stuff.

 

I would now request a meeting with the case worker and ask why the surgeon is still involved and why he has not referred him. insist that hubby is reviewed by a neurologist from a rehab centre  as a priority.

 

the pressure area is of some concern but there are some exercises which can be done and if the vac therapy is working then it hopefully shouldn't be long before his restrictions will be lifted.  im sorry if I am out of line giving you such advice in the respect of btg rules but you need to seek help from someone.

 

are you allowed to approach the rehab centre directly? if so do so ask for help.

 

are they saying you cant look after hubby if he came home?  is the house suitable for wheelchair? has anyone tried a wheelchair at home? there is so much to take into account are you strong enough to care for hubby if he came home?

 

I wanted lin home but due to the stress and aggravation I've had with hospitals my health suffered big time with heart attacks and the ensuing health issues. I know lin is safe and I see her everyday all day and we can still do what we want,  so there is hope no matter how long it takes.

 

take care xx  

 

 

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Palhuc, this is just a thought, could your insurance company have a say in where your hubby needs to go, ie rehab.

At the end of the day it is they who are picking up the bills so surely it would be to their advantage to see him treated as soon as possible for the best outcome.

 

Sorry if this is not appropriate but I know nothing of health insurance over there.

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Paulhuc,

 

I had a grade 4 and was out of it,   and I had Ventriculitis in the early days, UTI and then Sepsis. and a bad bed sore on my heel.  My Surgeon saw it and said to Nurses "I do not want that to get any worse"  Now I have a dent in heel !!

 

The OT's said "put her in home"  Family disagreed, phew lol xx Once I got home my family said all I did was sleep and I was found to have Hydrocephalus.  So the Therapy I was getting did not register in my brain, as it was full of fluid !! I had a shunt fitted and remember coming around and my dogs jumping on me xx  The OT's  I remembered in my watery brain were nasty horrible people and I swore at them when they made me do baby things as my brain was not with it.  I cried, I played them up but I felt I had to be strong against them in my floaty brain.  Bet I was a pain lol.

 

I awoke after having a shunt fitted and heard about this site via my Daughter Bessie.  (her real name is Sarah) . 

 

Sounds like hubby is  doing okay but get him aftercare as he needs it as so did I.  I wish you both Good Luck. Oh also while in hospital the carers shaved my eyebrows off, and my top lip which I used to bleach, what is it with them and hair  lol xxx  Keep strong and with your help he will get well soon xx  Music and laughter is my answer to everything.

 

Now sing him his fave song  xx get him singing  and smiling  again xxx and he can tap his feet to the music x

Love

Win  Had my fav meal in liquid form or so I am told xxxx 

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I just wanted to add that of course the grade of the bleed is a consideration in the recovery but it doesn't give a totally predictable outcome. Win and many many others on this site have shown that. 

 

I too had a grade 4 and hydrocephalus and now have a shunt but I am now back doing some work, I live independently with my family, am mobile  and drive short distances but it's been a long Haul. 

 

There are such a lot of variables which affect  recovery; where the bleed originated, how quickly you were treated, age at time of bleed, complications, previous state of health,; there is no classic trajectory so no one should write off the opportunity for his progress by stating it's unlikely. HArd, yes, difficult , yes, long, definately but not impossible. 

 

YOU know your husband best, YOU know what he is capable of and would want so use that as your guide, he is showing great progress withe th swallow so make friends with your insurance company, find an advocate at the treating hospital and start to work out a plan together. What would ' good' look like? is it coming home?  is it rehab? make a  plan of action and then get everyone working to that goal and don't accept doubters And naysayers. YOU know your husband. Don't make it easy for them to sideline him.

 

The recovery is the longest and hardest part of this andmost hospitals don't see that, they just see a 'fix' of the bleed. Get him into a rehab unit that specialises in stroke/ neurological events and see what they say and can do. 

 

If your husband is cognitively responding well with you then it shows his brain is doing what it can to heal and remember  it will transfer its energy where it's needed to do that, which means that his muscle tone and physical ability to do things will be reduced as the brain steals the nutrients to heal itself and he won't have been having much food anyway and it takes a huge amount of energy. 

 

Good food will help thats that's for sure but keep hope .

Daffodil. 

 

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Posting for you a link to the brain injury care services and  associations in each province In Canada which the charity Brain Injury Canada have on their site. They may be able to help you find an advocate to help support you much like we have the Charity Headway in the U.K., https://braininjurycanada.ca/acquired-brain-injury/provincial-associations-and-care-services/

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Just out of curiosity what takes the longest to recover from after aneurysm is it walking talking

eating Etc or does that entirely depend on the person/bleed/other.

 

Just would like to know from other 

folks who have been in this situation what there opinion might be.my husband  has overcome a lot of problems but have  now come to toughest and that is walking and healing a bed wound.,

 

This might sound like a silly question but I really would like to know what to most aneurysm survivors is the most challenging part of a persons recuperation. "Memory "would like to know what kind ofexpectations to have.

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hi palhuc

 

that's not a silly question, its one many carers ask.  the answer is nobody knows how someone recovers and how far they go. everyone is different. its like the question -how long is the piece of string? everyone is unique and only they can answer that question sorry

 

take one day at a time and be prepared for the odd step backwards now and then   hugs and cuddles    

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Paulhuc Hi xx

 

You know your hubby and gradually you will see bits of him coming back, see we are not Doctors and we can only give you info on what happened to us.

 

As I said I had a 4 bleed and once I woke up I was so glad to be alive and I love life.  I am so happy to have had a 2nd chance as a lot do not get it. 

 

So Cheer your hubby up and take it 1 step at a time so let us know how he gets on with swallow tests, 

 

My Daughter saw a yoghurt pot at the side of my hospital bed and she said just knowing I'd had a yoghurt made her so pleased.

 

Wishing you both well xx 

 

Win  xxx

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HI winb143

 

Thanks for support on Friday hubby passed swallow test and within 15 minutes he had a tray with soup turkey sandwich pudding and cookies. 

 

He also was able to drink something which I will bet it was heaven, he was so happy to have a meal he finished all of it.

 

I am told he ate very cautiously and he ate all of it. They took bag off the peg I was told they will reconnect with bolus feed , but instead today I understand they will just connect at night.he is doing great like someone who never was away from food.

 

I took him chocolate milk today one of his favs he really enjoyed it. So I guess he basically has now reached another milestone.

 

It will probably awhile though not sure how long the peg will stay in. I quess that's will depend on how the weight gain goes I really don,t know about any of this feeding aspect.

 

Winb 143 Do you know about removal of pegs. I am hoping eating food will help him with the healing process..

 

His legs are next and that will be biggest challenge and to get bed wound and body strong. Today he did something he grabbed a glass of milk from me and spilled on himself he was really  irritated at me.how do I know when to help and when to leave.

 

Another thing I noticed was he has a weak side of body on right and has a bit of a clawed hand, it is finally opening because he is working it and today he lifted hand almost to his nose first time. Well thanks for listening.

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Hi sounds like your husband is coming on in leaps and bounds you must be so proud and happy for him. 

 

The next step must surely be rehab hospital. Have you pushed for this yet? 

 

I presume the the peg feed is to ensure he keeps gaining weight and if he carries on eating solo will be removed. 

 

Keep pushing for answers to your questions and keep coming back and sharing the replies with us ?  

 

Good luck

xx

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I know this is difficult question but what are the chances of walking after surviving a stage 4 subarracnoid bleed. Has any members of this forum done so I would like to know if you don,t mind. My husband though moving left foot is not moving his right yet.but very slight movement.on right.his right hand bit clawed but coming around he is working himself and shows me he can just about touch his nose with hand.. His left he is getting quite fluid with movement..everyday the movement in hand is getting more and more deliberate. He also is forcing use himself of his weaker hand by passing items back and forth.we gave him a Rubik's cube which he holds with poor hand and turns with good one.

 His upper body is definitely coming back. It is now 6 months in hospital had such poor start but now doing something everyday. He is so determined that he is even eating at 110 percent just started 3 days ago and already peg is not been used for 3 days now. Does anyone know what I can do to help him with his upper body strength. I am hoping he is getting help with that.i think hospital is so impressed with his progress they are doing things for him I am even not aware of.

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I finding my hubby is not talking to me I thought he was receding a bit on his speech but noticed he is talking a lot to nurses and smiling to them very engaged. Maybe he is picking up a lot on emotions I am a bit down and he might notice that.My son says he is very engaged with him .son gave him a keepsake that he has said bonded them  hubby very proud of. I notice he has stopped talkin to me before.Iam feeling so overwhelmed that maybe he is picking up on this.my life has been on hold now nearly 6 months and becoming very down.i go to hospital every other day and I am quite exhausted, I feel I need to cut back a bit.. Does anyone have any thoughts on visiting .when recovering can visiting too often be exhausting for someone recovering.

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Hi Palhuc,

 

I kept pulling the tube from my nose out and had to keep going down to X Ray to have it put back, so they left it out.

I am told this by my Daughter as I remembered nil,  until I had shunt put in to get rid of my Hydrocephalus.

 

I am afraid as I remember zilch for approx. 1 year I cannot say what had happened to me.  Good in a way !!

 

It was all like a dream and I saw my Parents who are dead !! lol mind plays tricks on you.

 

Look after yourself Palhuc , see I got your name right lol xxxx 

 

Now have a good rest as without you hubby would be lost.

 

 

 

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hi palhuc

 

The peg can stay in for quite a while but as hubby puts weight on once he proves he is stable they will remove it when the time is right.

 

Please don't take hubby not talking to you too much to heart  I think its because you are tired and exhausted I've been there and got the tee shirt 

 

I've been visiting every day for nearly 9 years come the 26 august this year or is it ten but since lin has been in the home I have taken time out once in a while which is really important for you own sake.

 

 Take time out drop to two days  to give your body and mind to really come to terms of what you have gone through  with hubby  and try to regain your strength

 

 

 Do you have friends or family you could visit say over a long weekend away from you home environment it may sound harsh,  but I did it for the first time after 9 months although, I slept while  my friends held my phone just in case and when I went back to the home... boy did I feel a lot better!

 

Yes I did check every day by phone but I did feel a great deal better on my return  

 

I would expect that phyiso could come in with there input to help hubby with his hands,  take care

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