14 replies to this topic

[Caz822]

Hi everyone,

I only joined recentley as my dad had a Spinal Infarction (Spinal Stroke) and it has left him paralysed from the waist down. I came across your website when i was trying to discover info about this condition - apparently Spinal Infarction is quite rare, the doctors at the hospital have never seen it.

Anyway your forum has been tremendously helpful to me in keeping up my spirits and my dad's = he is very keen to get some of the cool t-shirts, and i just wanted to say thank you to all of the forum members.

I was wondering if anyone had any experience of neuro rehab rather than spinal unit rehab? My dad is still awaiting transfer - there are no beds

Anyway my dad has been working with a great physio at his current hospital and they have managed to get him into a chair for a short while each day over the last three and then today my dad managed to move his toe during his physio session - only about a centimetre and it was a hell of an effort but my dad is very very happy about it! Anyway just wondered if anyone knew if this was a good sign for his recoverey. We know he'll unlikely walk again but are we right in assuming that some motor control over his feet will help with chair transfers etc...

Thanks again, reading some of your stories has really helped me and telling them to my dad has helped him too.

Caz. xx

[qbounce]

Hi Cazz,
Don't count anything out yet as it's to soon to tell what your father will get back, especially with such a new injury. The spinal cord is still swollen after injury, and will take some time to heal. Moving ANYTHING this early on is a BIG deal in most people's eyes!

Stay positive!

[August]

My son has also had a spinal cord infarction. The consultant at the general hospital said he had never come across a case before. It is especially rare in young people and scarcely documented, which is no comfort to my son. Perhaps he should do the lottery. It has been a huge shock.
Your dad is lucky to be getting movement back already. We know of a teenager who recovered completely from his apparent infarction ( I say 'apparent' because the doctors diagnosed it by process of elimination).
Has your father's consultant referred him to all the spinal centres in the south? Make sure he does. When I was looking into bed availability, someone at Stanmore recommended that we apply to every spinal unit in the country because of the two-to-three month waiting list nationwide. It was considered better to be rehabbing further from home than languishing in a general hospital with the risks of developing complications such as pressure sores.
Stoke Mandeville, Salisbury and Stanmore recommend that referrals are made within 24 hours of first admission. Unfortunately, the general hospitals are unaware of this. Heaven knows why the NHS cannot manage this simple info transfer, but that's the nature of the beast in the era of the telecommunications revolution.
My son waited and waited for a bed, then, like buses, three came up at the same time!
Rehab in a spinal unit is infinitely superior to that on a neurology ward: there are more physios available, better equipment and all the staff have the requisite specialist skills; the treatment is integrated and properly managed.
Good luck
August

[wheeliebear75]

I know it sucks to keep hearing "wait and we'll see" and "only time will tell" but we just can't give very many solid answers. Yes if your dad has some use no matter how minimal it will make some things a bit easier. It sounds like your dad has a good support system already. I hope he continues to make improvements. Take care, keep us posted, and send him our way.

[Caz822]

Thanks for your encouragment.

The consultant has recommended that he go to a neuro-rehab unit and we are still waiting to see what they say about addmission.

I did call stanmore and ask them whether we should try to get referred to there or stoke mandeville but they said that a neuro unit would be better equipped for his injury. The NHS are not exactly well hooked up in the communications department.

They have given my dad a anti bed sore bed now that sort of vibrates and the consultant has told the nurses they must be very vigilant and help prevent the sores.

I'll let you all know how he gets on,

Thanks again.

[Caz822]

Hi everyone,

Just wanted to let you all know that my Dad has got a place at the Neuro rehabilitation unit and has been transfered there today.

We are all very relieved that his recovery and rehab can truely begin, it is very nice there he has his own room at the moment and he can see out which is nice because there were no windows at the last place.

Everyone seems really friendly and he is settling in well so far.

Thanks again for all the support you have given us,

Caz.

[qbounce]

Caz,
Thanks for the update. Please keep posting . . . it's always nice to see threads that start out with worry and wonder, continue in a possitive, and at least some degree of resolve.

[Caz822]

Hi everyone,

Just thought i would give everyone an update on my Dad,

Well they transfered my Dad to the Neuro rehab centre and it turns out that they were not equipped to deal with him as they have been mainly run down into an overflow ward for geriatrics with dementia.

After repeated fights and begging we managed to convince the consultant to refer my dad to stoke Mandeville - stoke then conntacted us due to the general vagueness and shortness of his referal. They said that he would have to go for assessment as an outpatient!! My mum - undestandably - got very upset and faxed all info we had plus our GP wrote a letter of support and the next day Stoke agreed to take him - Thank God.

Anyway the ambulance dutifully arrived three hours late to transfer him and then promptly broke down on the M25. My mum arrived at the hospital and rang my dad who had to tell her that he was waiting for the AA!!!!!!!! I don't know if i'm the only one that is in a state of disbelief about this. So my dad who has taken approx 5-6 weeks to get on his way to the appropraite place is at this very moment laid on a stretcher in a passenger ambulance whilst they await the breakdown people! I honestly think I have run out of words.... my mum has said that the staff at Stoke Mandeville cannot believe it, I give up...

Thank god he is on his way somewhere that actually cares about giving people like my Dad his life back.

Thanks for listening to my rant, i'll let you know if they ever get him there...

Caz.

[cate]

Please keep us informed, and you rant away, the only way things will be altered is people rant and rave enough. I can believe it, sounds like a carry on film, but no joke to you. When my daugher was eventualydiagnosed , Stanmore were so good with regard to a spinal injuries, and they had her in hospital within a few days, but the accident had happened years before, and her spinal cord is completely flatten in neck no hope of regenarating, but she is on crutches, and she got on really well there, but it is amazing how things happen. when the consultant decided she could come home, for me to look after her, neck had rods in she was on crutches, he said take her home, now. amazing I was also on crutches as I had just had hip replacements. Oh well you will be able to manage. What !! fortunately friends had taken me as it was a 70 mile journey home slowly as you can imagine difficult for her to sit in a car, and try not feel the bumps etc. however she did make a good recovery on that. but they did not do so good with knees, operated 3 times, on that, she eventualy changed hospital and consultant, and that is now as good as it will get.
What I wondered, do these doctors live in a bubble and have no concept how an injured person will be able to manage. They all need to have a good back up system in the family, who will help and fight for rights.
There you are another rant, Our NHS used to be good, but I think is top heavy with admin, and outside contract cleaning. o could go on, but my humour is disappearing.
Cate

[Dave Bishopstone]

cate, on Sep 11 2008, 12:00 AM, said:

Please keep us informed, and you rant away, the only way things will be altered is people rant and rave enough. I can believe it, sounds like a carry on film, but no joke to you. When my daugher was eventualydiagnosed , Stanmore were so good with regard to a spinal injuries, and they had her in hospital within a few days, but the accident had happened years before, and her spinal cord is completely flatten in neck no hope of regenarating, but she is on crutches, and she got on really well there, but it is amazing how things happen. when the consultant decided she could come home, for me to look after her, neck had rods in she was on crutches, he said take her home, now. amazing I was also on crutches as I had just had hip replacements. Oh well you will be able to manage. What !! fortunately friends had taken me as it was a 70 mile journey home slowly as you can imagine difficult for her to sit in a car, and try not feel the bumps etc. however she did make a good recovery on that. but they did not do so good with knees, operated 3 times, on that, she eventualy changed hospital and consultant, and that is now as good as it will get.
What I wondered, do these doctors live in a bubble and have no concept how an injured person will be able to manage. They all need to have a good back up system in the family, who will help and fight for rights.
There you are another rant, Our NHS used to be good, but I think is top heavy with admin, and outside contract cleaning. o could go on, but my humour is disappearing.
Cate

Hi Cate,

You say "our NHS used to be good". Well I think it still is, my son had his accident on holiday in the USA, whilst the treatment was good - so long as the insurers paid - I have to say we were very glad to be back in the UK and the treatment he had in the Salisbury Spinal Centre was excellent - OK the NHS isn't perfect, but reading accounts of treatment folk receive elsewhere in the world, including the USA - it's pretty damn good.

[Travelling Blackbird]

Caz822, on Sep 9 2008, 08:24 PM, said:

Thanks for listening to my rant, i'll let you know if they ever get him there...

Caz.

Hey, no need to apologize. If you can't rant here, where can you rant?

All the best for your Dad. May he finally get the care he deserves.

[Caz822]

Hi Everyone,

Just got back from visiting my Dad at Stoke Mandeville. I am soooo happy that he is there! They are really helping him to feel more like himself.

He got given his timetable today and he is really pleased to see all the cool stuff he will be doing to help train his balance and upper body strength.

He has seen a consultant and they have agreed that it is a Spinal Infarction and that he his injury level T10. They have said that he is not going to get any more than the toe wiggling that he already has but that means that he will be home quicker. As much as I would have loved for them to say "Yes he'll walk again" I knew that was unlikely, and I just really want him home as soon as possible so that he can be with my mum and all the rest of us.

He is also whipping about in his temporary wheel chair, he is so happy to be able to move himself rather than just being plonked from chair to bed and bed to chair.

Anyways it was a long drive to see him so I better go sleep soon,

Take care everyone and thanks for the messages.

Caz.x

Dave Bishopstone, on Sep 11 2008, 08:54 PM, said:

cate, on Sep 11 2008, 12:00 AM, said:

Please keep us informed, and you rant away, the only way things will be altered is people rant and rave enough. I can believe it, sounds like a carry on film, but no joke to you. When my daugher was eventualydiagnosed , Stanmore were so good with regard to a spinal injuries, and they had her in hospital within a few days, but the accident had happened years before, and her spinal cord is completely flatten in neck no hope of regenarating, but she is on crutches, and she got on really well there, but it is amazing how things happen. when the consultant decided she could come home, for me to look after her, neck had rods in she was on crutches, he said take her home, now. amazing I was also on crutches as I had just had hip replacements. Oh well you will be able to manage. What !! fortunately friends had taken me as it was a 70 mile journey home slowly as you can imagine difficult for her to sit in a car, and try not feel the bumps etc. however she did make a good recovery on that. but they did not do so good with knees, operated 3 times, on that, she eventualy changed hospital and consultant, and that is now as good as it will get.
What I wondered, do these doctors live in a bubble and have no concept how an injured person will be able to manage. They all need to have a good back up system in the family, who will help and fight for rights.
There you are another rant, Our NHS used to be good, but I think is top heavy with admin, and outside contract cleaning. o could go on, but my humour is disappearing.
Cate

Hi Cate,

You say "our NHS used to be good". Well I think it still is, my son had his accident on holiday in the USA, whilst the treatment was good - so long as the insurers paid - I have to say we were very glad to be back in the UK and the treatment he had in the Salisbury Spinal Centre was excellent - OK the NHS isn't perfect, but reading accounts of treatment folk receive elsewhere in the world, including the USA - it's pretty damn good.

Oh and by the way in answer to the fact that the NHS is Pretty damn good, my dad had is first shower in 5 weeks when he arrived at Stoke, up until then he had been given a bowl of water and told to do as much as he could reach! I truely believe that the main problem is a lack of staff and the fact that the cuts are running caring people in the ground, but quite frankly there is no excuse for some of the treatment that my dad has had to suffer since this all started. The NHS is a lottery - some, like many of the specialist centres such as spinal units, can be great, but some is down right abysmal!

[August]

Oh and by the way in answer to the fact that the NHS is Pretty damn good, my dad had is first shower in 5 weeks when he arrived at Stoke, up until then he had been given a bowl of water and told to do as much as he could reach! I truely believe that the main problem is a lack of staff and the fact that the cuts are running caring people in the ground, but quite frankly there is no excuse for some of the treatment that my dad has had to suffer since this all started. The NHS is a lottery - some, like many of the specialist centres such as spinal units, can be great, but some is down right abysmal!
[/quote]


I'm glad your dad is settling in well at Stoke. I agree with your comments re NHS. I'm very pleased with the spinal unit my son is in but the treatment he had in the general hospital prior to transfer was, in the words of both one of the doctors and one of the physios, 'sub-optimal'. Every day we were anxious before visiting in case the inadequate care had further compromised his health. Inadequate resources, lack of specialist nursing knowledge and lamentable management structures all contribute to making a general hospital a scary place for those with SCI. I read an article by a retired spinal unit physio in which he declared that general hospitals were a death trap.

August

[ParaforGod]

Hi Cate and welcome to the forum I wish your Dad all the best.

[cate]

Yes I agree our NHS is good a lot of the time, and also if we are able to deal with it of have members of family who can sort things, but a lot of people do not, and Iagree usually the nursing staff are very busy and have been cut back etc so much. Hence my remarks about the admin being top heavy and money being spent incorrectly and wasteful, with there outside contractdrds etc. Now we have new one where the car parks are funded by outside services, ,so where is that money going. not back to the hospital, maybe a percentage How much?? Note I live in Cambridgeshsire, and our hospital Addenbrookes came out as being the dearest car parking in the UK. That is my rant. once you get settle in a good part of the system then that is great. My other rant is if they listen to patients who know there own bodies, may be certain things would move along better, Because my daughter was young, they did not listen to her expressing about numbness tingling and once side of body moving slower, when they did send her to Stanmore and they did the scans they had her in for the op with indays, but her accident had been about 9 years previously, and it was not until all the symptons got a lot worse, and that she kept falling down, O perhaps investigatiom should be done, They started by thinking it was MS but once they had the scans c5c6 removed rods inserted etc, but I am, happy she can walk on crutches, and the care from them of was great.
Yes have also heard of some scary stories from elsewhere. So I am pleased that we dp have NHS, when goes right it is good.
Cate