rehab after subarachnoid heamorrhage, please please help!

[Guest ianwells]

Hi all, not sure where to start and if its the right approach but here goes anyway.....About 3 to 4 months ago my mum of 67 years suffered a burst aneurism(sah) and after surgeons did all the checks she had it coiled, after the surgery all was 100% ok until 7 days later when a second one of the 3 they had found burst! again into surgery but this time the only way was to clip it and they also choose to clip the third as a precaution i guess. anyway after what has felt like an emotional roller coaster (as many know) she came through it all. For a short time she didnt even recognised her close family and wasnt responding to request of movement, dates, time, where she was etc but as time as passed she appears to have made a very good recovery if not excellent for what she has been through. After a spell at Hope Hospital (approx 4/6 weeks) she was transfered to the Royal Oldham Hospital to the Stroke ward for rehab, rehab hmmm!!!! during her stay we (my sister and I) found it hard to figure out what rehab she was actually getting if any! After around 4 weeks of her stay rehab by way of physio (to what degree we do not know) started and after OT spoke to us everything seemed positive, she was making excellent progress with walking and they would start fitting grab bars and rails at home for her assistance. Thing seems so great that she would be home and well apart from some confusion and memory probs but we all felt and saw this was improving. 3 weeks into the rehab we was called into a meeting by the OT to be told now she was not improving as they first informed us and basically told us there was nothing else they could do!!! We was gobsmacked and looked at each other in disbelief, we was then told that a social worker would see us to get her moved from the hospital. We had no idea what was going on, we met with him and after a long confusing meeting was under the impression that she would be moved into care and would get the physio etc that she needed to aid her recovery, a little more later on why she could not return home to her husband. Everything moved so fast and she was placed only to find that all was not as it seemed. there is two wings in the place she went and the wing she was on does none of the requirements we all think she needs for her recovery, this is our problem! we have tried so hard and discussed with everyone around including doctors, Neuro consultant, staff on wing who all say she is improving and she should be on the intermediate wing so she can benefit from the help she needs to get her mobile only to be stopped in our tracks by an assesment from certain physio's over a weeks period to be told by them that she wont get any better so they wont move her. We need some help on this point and wonder if anyone as encountered a similar situation or anyone knows which direction we can go, we just cant believe that physio's can basically stop her even getting a chance, please help if you can. I will discuss further after any replies, i know some parts may seem vague but i feel this is long enough for now..many many thanks

[Guest ianwells]

Just to had a little more, Mum couldn't return home as whilst we where going through all this our dad was diagnosed with pancreatic cancer and after a major operation is currently recovering at home and is not capable of assisting mum with anything as you all could imagine. the only thing is I guess that it cant get much worse. apologies if I seem a bit depressive but i feel i'm just getting nowhere and feel so helpless. sorry all......Ian

[rince]

There a few ways to get more people to look at the situation in which you find yourself. Try speaking to some one at PALS (ask at the main desk in the hospital) or alternativly try speaking to anyone who seems to have the same point of view but is still a medical proffessional. Get their advice on where to go next off the record.

There are lots of places you can go to get hard evidence of recovery from what your Mum has gone through, SAH is quite specialised, do they have a person who "specialises" in SAH?

Don't give up, your Mum is still in there somewhere and there is hope that she can come back to you.

Scott

[Karen]

Hi Ian,

Sorry to hear about your Mum.

We have a member called Hannah on this site .... she had similar problems with getting help for her Mum. I'm hoping that she'll read your post and be able to give you some advice too. Hannah also had to push and push to get her Mum the appropriate help ..... but she eventually did get it ....

As Scott has already suggested, try PALS ..... it seems to be the case in some areas that you do have to keep pushing and pushing to access the appropriate rehab..... I also wonder whether it's an "age" thing as well and whether there is some sort of criteria within the system.

Good luck with it and sorry to hear that you're having such a struggle .... but keep badgering them and don't give up.

[Guest ianwells]

Hi and thank you very much Scott for your reply. That is the most annoying/frustrating part of all this, there is nobody involved that is a specialist in this particular trauma, we had an in house (care home) doctor that agreed the way forward was physio, the neurosurgeon consultant also wrote it on a letter for us and everybody else who has seen an improvement agrees she at least deserves the opportunity/chance. It is the physio's (what experience they have i do not know) have decided that there is no point. They also mention cognitive problems, they say or have said she lacks or as no "initiation" for example if she needs something she doesnt know she must get up and go and get it or she cant do it without thinking about it. We agree that was the case but now when we see her all we hear is how much she as fell because she gets up to do the normal things, forgets she has trouble walking and down she goes. I will try PALS and see if I get anywhere. Cheers and fingers crossed, Ian

[Guest ianwells]

Hi Karen and once again thanks for the reply.

I saw some posts from Hannah and would like to talk to her, some things she had said did sound very familiar....

You basically hit the nail on the by saying "the appropriate rehab" I do believe the physio involved does not know enough about this type of trauma and basing their findings over a 1 week period is somewhat hard to swallow.

I so want to grab them and shake them!!!!

We have a meeting on the 3rd of September for them to explain why they feel there is nothing more that can be done for mum.

I need case studies, peoples experiences as some kind of evidence that this kind of trauma has or can have a slow recovery period, if that makes sense. Not just determined over a weeks assessment.

Thanks and much appreciated

Ian

[Guest Hannah]

Hi Ian, I'm so sorry to hear what has been happening to your mum so many things you have mentioned sound familiar.

To summarise our situation my mum had her SAH at the end of September last year and was in the regional neuro centre for 8 weeks. she was then transferred to the district hopital stroke ward. It was here we felt that mum wasn't getting the attention she needed. There seemed to be a general lack of understanding about the fact that although a SAH is a stroke the same treatment that they were giving to the ward full of 80 somethings was not the same as what she should have been receiving. With hindsight the physio was ok - just not enough of it. After she had been there 6 weeks her care of the elderly consultant (mum was 47) told us that as she hadn't made any significant recovery she was unlikely to and started making noises about getting her home. At this point mum was still bed bound.

I found out from a nurse on the ward that there were such units called specialst neurological rehabilitation centres and started researching on the internet. A long story including more complaining, calling the units direct and funding issues meant that mum waas accepted and she spent 5 months there. The unit only held 20 people and there was a strong multidisciplinary team who made sure they worked together.

We're now nearly a year down the road and I can't believe the difference in the last 6 months. She has gone from being unable to sit up to living a virtually normal life and looking forward to going on holiday next month.

I do think that mum's age helped her because she was termed as a 'working age' patient, the unit she went to was for 16-60 yr olds - that being said I did make friends with a patient who was 67 in there.

Making sure that you undestand what they are telling you and go to the meetings prepared (I had pages of A4 with questions on them). Don't be afraid of taking up their time make sure you are clear about the difficulties they perceive your mum having now and what can improve. Ask for a case conference, this should consist of the consultant, phsysio, OT, nursing staff and neuro phsychologist if she has been seeing one.

Where has your mum been moved to after the stroke unit? Is she in a rehab unit? Once you are in a rehab unit, things don't get better any quicker - its just the support is available. They tend to take inpatients for in excess of 3 months. My experience with physio's is that they tend to be cautious souls and it may take them a few weeks to fully understand the stage that the patient is at, could it be this?

I must admit when mum came home for visits we didn't always follow the Physio's to the letter hence there were a couple of occasions where dad and I manhandled her into cars and onto sofa's - there did tend to be a point in what the safety minded physio's told us. From your first posting it seems as though the Neuro consultant still thinks your mum is improving, I'm hoping that he probably knows his stuff and as long as you have a senior medical professional on your side, your mum will still keep receiving treatment.

As already mentioned PALs are a good way of complaining about treatment

After 3-4 months your mum is still very early on in her recovery there is still plenty of time for improvement. Please feel free to PM me if you have any specific questions, more than happy to share.

Take care and wishing your mum well

Hannah

[Guest ianwells]

Hi Hannah, its great to hear from you and give me some hope that I am not just banging my head against a wall, it sure feels like it though....

your questions:- Where has your mum been moved to after the stroke unit? Is she in a rehab unit?

She was moved to a care home from the stroke unit where the people there appear to be the elderly (80 somethings) who have had falls etc. it is far from a rehab unit itself but there is another wing to this place (Boston House) which they refer to it as Intermediate care where the people on it do get some form of rehab, physio, OT therapy etc and is NHS funded. This is the place we are trying to get her on. When she arrived at Boston House the staff there was shocked that she never got placed on the intermediate wing. the staff have helped considerably with just getting her up and walking her about which has helped her, they all have seen an improvement in just her 4 week stay.

I do want to enter the meeting with A4's full of questions but was/am struggling to find the right ones. I do think they need to inform us why there is no neuro psychologist or consultant ever been in any of the meetings and what involvement if any these types of people have played.

I am trying to contact the consultant at Hope hospital but they are always on ****** holiday, I will look into the specialist neuro rehab centres you mention and also bring these up in the meeting other than that can you give me any more ammo you think would help..

Many many thanks and speak soon

Ian

[AndyH]

Hi Ian,

Not sure if this is helpful but you could always ask places like Headway for advice. They have answered a lot of questions for me in the past.

Good luck.

Andy

[Karen]

Hi Ian,

Re: Case Studies

A lot of us on this website were initially told by the medics, that we would achieve most of our recovery in the first six months and after that, not a lot more ..... I'm just over 2 years post SAH and I'm still experiencing recovery ..... it's been slow but consistent. From what I've read about other people's post SAH experiences, they've also had continuous improvement over many years .....one person that I read about, was still achieving more recovery at 5 years on.

To be honest with you, I don't think that enough research has actually been carried out on the long term affects/recovery post SAH.....so the only conclusion that I can reach from this, is that the "professionals" just don't know enough about brain recovery.....apart from what they've read in text books. I have also read that it takes a while for the brain to re-wire itself and find alternative pathways to the ones that have been damaged.

As I said in my earlier post, I have a sneaky feeling that age is a major factor in the decision making. You could also try posting your plight on the Different Strokes website .... there's a lovely guy on there, called Peter Allen, who's the Boardmaster and he seems to have a wealth of information.

Wouldn't it be great, if the Professionals took some time out to read websites like these? I know what a struggle Hannah had, in trying to access information and in getting the correct rehab for her Mum. It's just so sad that you have to fight tooth and nail to get it ..... but she's a shining example of what you can achieve and Marian (her Mum) is now making a very good recovery.

[Guest ianwells]

Hi Karen

Thanks for all your help and that includes all who have posted back, I do really appreciate it. xxx

Well its been a very busy 24 hrs trawling the net for any info I can use for the meeting we have on the 3rd, i have gained lots of knowledge and downloaded many forms of literature to question the methods or approach they are currently using or not as the case seems.

They are not going to know what's hit them.....lol

The thing that sticks out in all this is the word Neuro, i do believe in all this, is that the people currently dealing with mum are lacking in this field. A lot of the physio stuff relates to a couple of types of approach 1) Bobath approach and 2) The MRP Motor Relearning Programme.

Maybe I'm missing a trick but to my knowledge neither have even been considered let alone tried with her. It does always mention on the web the physio as the neuro physio which makes me think her current physio is not skilled or has enough knowledge to back their judgements on.

I kind of hope not so my findings become of greater benefit.

I wish I could get all on this site that as had similar experiences to the meeting just to see their faces at the living proof you should not just give up no matter what.

Anyway I will keep you all informed as it may help others in the future.

I cant wait for this meeting..............

Ian.

[Karen]

Wishing you the very best of luck Ian ...... knowledge is power and who knows, you may end up knowing more than the professionals..... Hannah always offers up good advice ...... be persistent and if you have to be a pain, then so be it. Hopefully, the outcome will be well worth it.

[Guest kaj]

I am sorry to hear about your situation. My family has had some tragedy. My brother died suddenly on Sept. 30. It has been almost a year. My mom suffered a massive bleed from a basilar artery aneurysm on June 23 of this year. I also had a baby boy April 20th. I am happy to report that he is healthy and an angel after all of my depression and anxiety. I know how you feel. It is terrible to be put in this situation. My father cannot take care of my mom himself either. He had lung cancer a few years ago. His tumor was the size of his heart. He came out with shining colors but is slower than he used to be. Don't give up on your mom. When you go to visit her, move her arms and legs for her. Touch her and stroke her hand so her brain is sending that signal. Let her here your voice her favorite music. I was told to only have one sound at a time. Too many sounds at once confuse the brain more. See if she responds to pain, a pinch. If she does then ask her to squeeze your hand, wiggle her toes, open or blink her eyes, stick out her tongue. If she starts to do any of these things then it is a sign of hope. My mom started out this way. She is in rehab but extremely confused and cannot go to the bathroom on her own because her brain doesn't acknowlege it. We have a long way to go. It has only been two months for me and feels like a lifetime. Hang in there and keep on trying with her.

Kim

[Guest ianwells]

An update from a meeting on the 3rd Sept.....

So depressed!!!!!!!!!!!!!!!!!!!!!!!!!!

We(my sister and I) met with the social worker, physio's, OT's, rapid

response team and members of staff from the care home where she

currently resides.

We were told by the OT that a specific assessment had been made to

test cognitive function and memory recall.

Her score showed significant cognitive impairment (5 out of 12). It also showed severe impairment on immediate and delayed recall. Their words!

The physio's told us that they did not feel there was enough carry

over between treatments and can therefore not benefit her at this

time. There will be no further input from either the physio's or OT's

as they claim that from a therapy side, she is not achieving anything. Their opinion!!!

The only good thing, which I will add is that I got her GP to refer mum to the Floyd Unit (A Specialist Neuro Centre) something that none of the above have even considered and had no intention of doing so.

I had so much literature from Chartered Society of Physiotherapy and advice from the Medical Director of Rehabilitation (Krystyna Walton) I thought they would at least listen, but no!!!!!

Krystyna told me to ask for an opinion from a Specialist in Neuro Medicine but they say they know enough about to make the final decision, albeit none of them was a SPECIALIST.............

In essence we now have to wait around 11 weeks for the specialist to see her and if they feel she would benefit from specialist neuro rehab (god help mum they do) we are told she probably will have to wait a further 6 months for admission, all because the none specialist at the Royal Oldham Hospital decided in their opinion she wont improve at all and discharged her from hospital...

This is wrong, it has to be!! surely people shouldn't be just dumped on the heap only 4 months post stroke.....I'm so annoyed with all this........

Ian

[Guest kaj]

wow!!! My mom had her rupture June 23rd. It has been awful. My dad and I were upset because in the US it was labor day and she didn't have any rehab for three days. We are afraid that they will say she hasn't improved enough when they haven't even worked with her enough. I know how you feel and I realize your situation is far worse than mine. You must want to just scream out at people. The only thing I can tell you is when you see her, keep working with her yourself. Forget what they say for now and work with her. I am so sorry you are going through this. Where was your mom's rupture in the brain? Does the position of the aneurysm have to do with her current condition? I do mean current condition not the end condition because she will improve. It is way to early for them to give up!!!!!!

My prayers are with you,

Kim

[Joan]

Ian -- It is hard to understand how supposed professionals can act or even think like this. It is equally hard if you are the concerned party, and just want some answers. There have been so many cases, as I am sure you are aware, where people with similar levels of impairment have responded positively to OT and other therapy.

If there was anything we could do to help you, we all would, because too many of us know what it is like to be at the receiving end of unhelpful specialists. In several major European countries, like Germany, France or the Netherlands to name but 3, she would be treated properly and speedily. The NHS is great at saving lives, but less good and preserving the quality of life for the people they treat.

Joan

[Guest ianwells]

Hi everyone.....

We went to see the consultant today at Hope hospital.......

We had every intention to put our case across to the consultant today but after several general question to mum and ourselves we where told that in her opinion mum should have made a better improvement than she has and from her last CT scan it showed evidence of hydrocephalus........

This may seem a strange response from me but I felt somewhat relieved...

I have read peoples experiences on here that the shunt they can fit "can and has" relieved the symptoms my mum is suffering (mobility, memory, continence), this is also backed up by the consultants kind words today.........

Mum went directly for a pre-op assessment and that so far everything is looking ok, she should have the shunt fitted in approx 4 to 6 weeks time.........

I know it may be a little presumptuous but i am now holding onto the general consensus that this operation will hopefully aid/help her recovery......

Any thoughts or experiences anyone have had would be appreciated????

thanks to all for you help and kind words, if it wasn't for this site I dont think we could have helped my mum even half as much...

Love to all

Ian xxxxxx

[Karen]

Hi Ian,

From what I've read of other people's experiences, that the shunt can make quite a difference ...... hydrocephalus can cause quite a few problems and make you feel pretty unwell, which I would imagine, would hinder recovery to a fair degree.... I'm sure that a few of the guys that have had a shunt fitted, will chip in with their comments.

It sounds as though you're making some progress .... so glad that you've found the support helpful .... just keep, "keeping on" ..... sometimes in life, you have to be a pain in the backside ..... but you only get one Mum and she's worth it ....

[rince]

From the personal experience of having a shunt fitted I can say it will make a difference. I can remember nothing but bits and pieces of the time before I had mine, but from recovery from the surgery I was almost the person I am now. Thats not to say everyone will be shopping in town less than 72 hours from the surgery because I don't want to raise false hopes but I KNOW I was.

Thats all we can speak of for sure, personal experience. I know I have mentioned "hard evidence" before and my memory has let me down but in my case recovery began over six months post SAH and hours post shunt.

Scott

[Guest ianwells]

Hello All.....

Its been a while and I now have time to let everyone know what as been happening with mum....

After all our problems we finally met with a neuro consultant and discussed the possibility of a shunt, they agreed after signs of hydrocephalous was evident on a scan. her problems where memory(recall and confusion), mobility(balance and walking) and incontinence(wee wee's) lol...

My mum finally had the shunt fitted on Tuesday the 23th of October 07, what a transformation!!!! By Thursday 2 days after, she was standing un-aided and by weekend she was walking with a frame, something we had not seen for 7 months. We had explained to the staff on the ward all the problems we had encountered after her discharge from SAH surgery previous and that under no circumstances she be discharged to her towns hospital. We stressed that we had spoken to the area specialist neuro rehab centre who informed us that arrangements had been made for her to go on Hope hospitals rehab ward then to be transferred to Floyd unit (area rehab).......

Thursday the 1st November we receive a phone call from mum that Hope are discharging her to the Royal Oldham!!! Panic sets in by all, after numerous phone calls to try and stop them efforts seemed futile. I pleaded with the Floyd unit after they promised to be involved because of system failures previously. They came back with the assurance of a bed on Monday and would contact Hope and ask if she could stay there until being transferred to them Monday.

I sighed of relief and informed the family, I sat back with a cup of coffee and thought "finally she will get the right help", My phone rang! it was the Floyd unit!!! They informed me she had already left Hope in an ambulance!

I was deflated! But not for long.......

The Floyd unit had rallied around and actually decided that enough was enough and basically gave chase of the ambulance to intercept it and redirect her to them on that day. No amount of praise can be enough for the people at the FLOYD UNIT involved on that day and therafter.

Mum came home for the first time last weekend in 7 months and to see her walking and actually having a conversation of old was a weepy site to say the least, the shunt really did bring my mum back, amazing!

She is again home this weekend, friday till monday and her recovery is coming on leaps and bounds although she remembers nothing of the past 7 months, albeit she probably is best not to...

Just a short thank you for now as I am going to post a new thread to the site for the site and all who gave there kind words and support..

Thanks and much love

Ian xxxxxxx ...

ps.. I will be popping back regularly to support anyone who needs it.

pps.. We(the family) are currently going through the motions to highlight the unnecessary and unacceptable errors/problems the family and mum went through during the past 7 months. Everyone deserves the right of at least a chance and we shouldn't have to fight and shout for it. Any developments will be posted on this site and many others.

[Karen]

Hi Ian,

That's wonderful news and I'm so pleased for all of you ... it just shows that you have to dig your heels in and keep going, even when the odds feel as though they're stacked against you .... as they say, where there's life, there's hope.... love to you and your Mum xxxx

[Joan]

Ian, I second completely what Karen has said, it is great news and must be an enormous relief. Joanxx

[Louise]

Hi there

Its great to hear how well your Mum is doing, I too went to a rehab hospital & got home for the weekends which did me the power of good just being amongst my own things helped the memory no end, getting the right treatment is so helpful, & yes you do have to dig your heels in for the right thing, I think I/we were lucky reading somepeople's posts.

It boils my blood when I read about families that say the hospital's say its 3 months & their's no response I would say that this is 'rubbish' sometimes people just take longer to respond I did but I dont think theirs a time limit you can put on it. I know lots of people now that were in the hospital the same time as me we each had different mountains that we had to climb but we'd all suffered a SAH, & the brain takes so long to heal itself...

wishing your Mum continued improvements hope your doing ok with it take care

Louise.x

[Skippy]

Hey Ian

That's fanatastic news. So very happy that things are finally looking up for your mum.

Give her a huge well done hug from me.

Sami xxx

[Guest kaj]

Great news. You have to feel like a new person with that kind of progress. I am very happy for you, your mum and family. It must be better than any other feeling.

Good luck and take care,

Kim