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Posted 07 August 2005 - 10:09 PM
Hi
My sister was in a crash 2 and a half months ago and is still in ICU in South Africa (where she lives). We're looking to move her back to the UK for rehabilitation when she's okay to fly (with an SOS plane). UK is easier for friends and family than S.A.- London region if poss.
I'm looking for first hand experience of rehab centres here and any other advise anyone in this situation can offer.
I'm finding plenty of info on spinal injuries, and then some on brain (but not with a question page like this) - but am really looking for people who have spinal AND brain injury.
Her details are; incomplete C2, plus TBI (point bleeding in frontal lobes). She was succesfully brought up to consciousness 4 weeks ago, after a long period of high intercranial pressure with draining of the fluid until a VP shunt was inserted which has permantley reduced brain pressures. They nearly switched her machines off at one point.
Now, she can breathe on her own, and is moving her arms (restricted at present), crying, frowning and has smiled (not as often!). She has pushed her legs out in a stretch (although I'm not sure if this movement comes from the trunk or the actual legs). Also has good anal tone. Apparently she is very lucky.
I visited Royal Bucks which is Private and Nikki there was very helpful. I also visited Stoke Mandeville and was not impressed by the feel of the place, and the fact the consultant (with an outstanding recommendation) only reviews patients once a month. I was not impressed by the cleanliness, the superbug rate, or the helpfulness of te staff when trying to organise a visit. I do know it has good consultants and very good surgeons - but my sister has had all her ops now and will be off ventilator and without trachiotomy by the time she arrives in a UK rehab.
Can anyone give feedback on their experience of particular rehabs? Iam visitng the National in Queens Qs, London next and also Stanmore. I heard Salisbury is excellent, but is spinal only.
I found so much info out at first but now I feel I've hit a wall. As my family are all in various countries abroad I am trying to do most of the research and would appreciate any advice. She is entitled to NHS, and we are sorting out her compensation at present.
This is a really good page, I've read all the sections and even ideas on communicating while on ventilator help big time. At the moment its one blink for Yes.
thanks
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Any Incomplete C2 Plus Tbi?
a long one I'm afraid form family member
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#2
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Posted 08 August 2005 - 02:47 PM
Hi Susie,
I can only talk about my own experiences (full story on my web at: http://www.gazrobs.freeuk.com ) & all I can say that in my 'holiday' in Stoke Mandeville my last 3-4 months were effectively rehab & as I was a paying/private patient I could have gone to the Royal Bucks & I wish I had. I would have had a nice private room but all clean & nice facilities with good equipment etc unlike StokeM which had none of those. Mostly the staff were great but in true NHS style they were struggling with underfunding & poor resources & I was lucky if I got 45-55 mins of physio a day & the chair they gave me & equipment etc were not great.
It's an unhappy time anyhow but little things like having a nice private/clean room & good equipment make a big difference so I know hindsight is a wonderful thing but that's my 2C.
FYI, I tried to get into Salsibury SIU as I live nearer there than StokeM but it was full but I've since 'transferred' consultants but not stayed but it looks pretty good & I've heard good things
anyhow feel free to contact me from my web page if you'd like more of my 2C 
Gary
http://www.gazrobs.freeuk.com
garyroberts.uk@btinternet.com
I can only talk about my own experiences (full story on my web at: http://www.gazrobs.freeuk.com ) & all I can say that in my 'holiday' in Stoke Mandeville my last 3-4 months were effectively rehab & as I was a paying/private patient I could have gone to the Royal Bucks & I wish I had. I would have had a nice private room but all clean & nice facilities with good equipment etc unlike StokeM which had none of those. Mostly the staff were great but in true NHS style they were struggling with underfunding & poor resources & I was lucky if I got 45-55 mins of physio a day & the chair they gave me & equipment etc were not great.
It's an unhappy time anyhow but little things like having a nice private/clean room & good equipment make a big difference so I know hindsight is a wonderful thing but that's my 2C.
FYI, I tried to get into Salsibury SIU as I live nearer there than StokeM but it was full but I've since 'transferred' consultants but not stayed but it looks pretty good & I've heard good things
anyhow feel free to contact me from my web page if you'd like more of my 2C Gary
http://www.gazrobs.freeuk.com
garyroberts.uk@btinternet.com
#3 *Susie*
Posted 08 August 2005 - 08:56 PM
Hi Gary
Thanks very much for getting back to me and sharing your experiences. Up til now, it's all been ICU and getting my sister through the operations and infections etc. Now we've reached that point where its the rehab and long term implications to discover and it's an unknown world at present with a steep learning curb. It's therefore great to hear first hand from someone, as opposed to health care professionals views only.
There's one or two things I wanted to ask you further - I apologise if it ever sounds like I'm asking too much - just tell me to back off;
- Salisbury as far as I understand is NHS - any idea why it's run better than Stoke? (Salisbury would not take my sister as won't take brain injury) but I wondered why so much difference.
Anyone else reading - we're looking at Queens Sq/ the National and also Stanmore, both London. anyone who's been in rehab here I'd love to hear from you.
Also, my sister sounds similar to you as in her left side is stronger. I wanted to clarify - we have been told she has muscle responses in her legs, but has not moved them outside of a cough/ or a stretch in he sleep - is this similar to your situation?
I found the description of sensation very helpful -as I think we presume if she can move then she can feel that section okay - but now I realise it can feel different. Does tetra mean loss of use of limbs? Please can you clarify this for me?
Also did you suffer any brain injury, or anyone else out there with TBI? I thought spinal damage and brain damage were likely to go hand in hand.
Do you remember having nighmares or hallucinations during your ICU period? What is the best thing to be told at this stage; at the moment - we tell her she's okay but it's going to be a long slog, explain what all the equipment is for and we talk about general chit chat to break it up.
any other info would be useful
thanks again and thanks for the site, Susie
Thanks very much for getting back to me and sharing your experiences. Up til now, it's all been ICU and getting my sister through the operations and infections etc. Now we've reached that point where its the rehab and long term implications to discover and it's an unknown world at present with a steep learning curb. It's therefore great to hear first hand from someone, as opposed to health care professionals views only.
There's one or two things I wanted to ask you further - I apologise if it ever sounds like I'm asking too much - just tell me to back off;
- Salisbury as far as I understand is NHS - any idea why it's run better than Stoke? (Salisbury would not take my sister as won't take brain injury) but I wondered why so much difference.
Anyone else reading - we're looking at Queens Sq/ the National and also Stanmore, both London. anyone who's been in rehab here I'd love to hear from you.
Also, my sister sounds similar to you as in her left side is stronger. I wanted to clarify - we have been told she has muscle responses in her legs, but has not moved them outside of a cough/ or a stretch in he sleep - is this similar to your situation?
I found the description of sensation very helpful -as I think we presume if she can move then she can feel that section okay - but now I realise it can feel different. Does tetra mean loss of use of limbs? Please can you clarify this for me?
Also did you suffer any brain injury, or anyone else out there with TBI? I thought spinal damage and brain damage were likely to go hand in hand.
Do you remember having nighmares or hallucinations during your ICU period? What is the best thing to be told at this stage; at the moment - we tell her she's okay but it's going to be a long slog, explain what all the equipment is for and we talk about general chit chat to break it up.
any other info would be useful
thanks again and thanks for the site, Susie
#4
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Posted 08 August 2005 - 10:53 PM
Quote
Do you remember having nighmares or hallucinations during your ICU period?
Susie...
Sometimes the heavy sedation that have you on in ICU can cause you to think some very weird things. At one point, I had to ask my sister if I was dead. I really didn't believe that I was, but I was having such extreme and constant deja vu episodes, that I wondered if I were in some kind of 'holding area' post-mortem.
Quote
we have been told she has muscle responses in her legs, but has not moved them outside of a cough/ or a stretch in he sleep
I have involuntary movement in my leg and foot which otherwise has no voluntary movement or sensation. For instance, if my foot touches cold water, it will extend up, toes splayed....I couldn't do that if I tried! I will also get stretches like you've described. I thought these movements were a good sign at first, but they told me that involuntary movement doesn't 'count'. I'm not sure that I'm believing that entirely, though.
Quote
Does tetra mean loss of use of limbs? Please can you clarify this for me?
It means loss of function from the neck down. Click on the link titled "Quadrapalegia and Parapalegia" at the top of this page (right under the main title banner)...it defines each condition in more detail.
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Female. Incomplete para following a cord stroke in '03. Spina-bifida, severe scoliosis. 18 surgeries total...five spine-related: Three fusions w/hardware, two tethered cord releases.
Female. Incomplete para following a cord stroke in '03. Spina-bifida, severe scoliosis. 18 surgeries total...five spine-related: Three fusions w/hardware, two tethered cord releases.
#5
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Posted 11 August 2005 - 02:09 PM
Hi Susie,
Just to pick up on your questions. I don't know why Salisbury is better/nicer (they are both NHS) I think it's just because it's newer whereas StokeM is getting old relatively though compared to other hospitals it's not. There is a lot of expertise etc at StokeM but poor funding etc as aforementioned is a problem but Salisbury has a 'proper' SIU so all that goes with it too. If I had a choice I'd go to the Royal Bucks but it is private so costs plenty failing that my 2nd choice would be Salisbury but then it's only 75 mins from my house.
An example of Stoke is while I was there the pool which is really beneficial in rehab had been shut for over a year & no sign of opening up too due to costs required to fix it. My O/T didn't really know much and she was fresh out of the hotel/domestic side of things with basic training though there were good O/T's there just not mine.
I've heard Stanmore is very good too but haven't seen it. As for some of the signs you mention it's impossible to say as we're all different. Spasms are common but controllable movement is another thing. I'm very lucky as per my web so I can move ok & walk etc but my left side is my best. I wasn't brain injured in any way but I don't see that as an issue unless serious to her rehab in one of the places we've discussed.
Feel free to email me if you want to chat further (mail/web in previous) & I wish your sister good luck. BTW, you can't ask too much as we've all been there so anything personal isn't a problem as we've all discussed bowels/bladder/sexual function it's just normal to be honest about such things & open IMHO
Just to pick up on your questions. I don't know why Salisbury is better/nicer (they are both NHS) I think it's just because it's newer whereas StokeM is getting old relatively though compared to other hospitals it's not. There is a lot of expertise etc at StokeM but poor funding etc as aforementioned is a problem but Salisbury has a 'proper' SIU so all that goes with it too. If I had a choice I'd go to the Royal Bucks but it is private so costs plenty failing that my 2nd choice would be Salisbury but then it's only 75 mins from my house.
An example of Stoke is while I was there the pool which is really beneficial in rehab had been shut for over a year & no sign of opening up too due to costs required to fix it. My O/T didn't really know much and she was fresh out of the hotel/domestic side of things with basic training though there were good O/T's there just not mine.
I've heard Stanmore is very good too but haven't seen it. As for some of the signs you mention it's impossible to say as we're all different. Spasms are common but controllable movement is another thing. I'm very lucky as per my web so I can move ok & walk etc but my left side is my best. I wasn't brain injured in any way but I don't see that as an issue unless serious to her rehab in one of the places we've discussed.
Feel free to email me if you want to chat further (mail/web in previous) & I wish your sister good luck. BTW, you can't ask too much as we've all been there so anything personal isn't a problem as we've all discussed bowels/bladder/sexual function it's just normal to be honest about such things & open IMHO
#6
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Posted 11 August 2005 - 02:38 PM
Hi Susie,
I am an ex patient of Sheffield Spinal unit, and can vouch for them personally. They have a purpose built spinal unit with a head trauma unit attached.
They do all rehab, physio, hydrotherapy etc.
I know it's no where near London, but it may be worth considering.
You may also want to contact Headway, they are a UK charity which "promote understanding of all aspects of brain injury; and to provide information, support and services to people with a brain injury, their family and carers."
I know headway have a big banner at the unit, so they may be able to give you further information.
Here is their website: http://www.headway.org.uk
Regards
Simon.
I am an ex patient of Sheffield Spinal unit, and can vouch for them personally. They have a purpose built spinal unit with a head trauma unit attached.
They do all rehab, physio, hydrotherapy etc.
I know it's no where near London, but it may be worth considering.
You may also want to contact Headway, they are a UK charity which "promote understanding of all aspects of brain injury; and to provide information, support and services to people with a brain injury, their family and carers."
I know headway have a big banner at the unit, so they may be able to give you further information.
Here is their website: http://www.headway.org.uk
Regards
Simon.
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#7 *Susie*
Posted 11 August 2005 - 05:52 PM
Hi
Thanks again for sharing your experiences.
I have been to Headway web site and they are really useful for descriptions of injury - but as far as rehab centres are concerned I think personal stories offer the best insight.
Sheffield sounds an option, and again if it's NHS then its reassuring that there are good places out there which aren't private. I think its more important to go for the best place rather than location as I would feel any compromise might hinder potential recovery.
Anyone else with any other stories on rehab centres - keep them coming.
Lastly - did you all have a "choice" of where to go (apart from Gary - as I know you were private) or did you go to wherever the hospital referred you?
Susie
Thanks again for sharing your experiences.
I have been to Headway web site and they are really useful for descriptions of injury - but as far as rehab centres are concerned I think personal stories offer the best insight.
Sheffield sounds an option, and again if it's NHS then its reassuring that there are good places out there which aren't private. I think its more important to go for the best place rather than location as I would feel any compromise might hinder potential recovery.
Anyone else with any other stories on rehab centres - keep them coming.
Lastly - did you all have a "choice" of where to go (apart from Gary - as I know you were private) or did you go to wherever the hospital referred you?
Susie
#8 *norman c2 incomplete*
Posted 23 August 2005 - 10:21 PM
noted your concern re stoke mandeville
heres my experience- in april on ski holiday i had c2 (two breaks)incomplete, after 7 days i was flown back to uk unconcious and on ventilator,as soon as i was fit to move i was transferred to stoke mandeville.
the first 6 weeks are a bit of a blur,i know i was constantly attended to, and encouraged and supported by staff to get me fit for rehab.
physio excersizes started whilst i was still trapped in my bed, then once into rehab i realised how dedicated, professional and encouraging all the physio staff were, very benificial to me was being with,watching and talking to fellow patients, i had a definate feeling of comradeship.
please look to the end result, once into rehab its the skills. equipment,and support that is most important.
i cant compare stoke mandeville with other spinal injury hospitals, i am very pleased that i was able to go there, i think i had the very best possible attention.
i went in with no movement on my left side, thats arm, hand, leg and foot.
i walked out 10 weeks later on sticks, and now (another 5 weeks) i am home and getting about on my own.
i know i am very lucky with the speed and extent of my recovery to date, i do put a great deal of of my luck down to the treatment at sm. especially physio .
good luck,
heres my experience- in april on ski holiday i had c2 (two breaks)incomplete, after 7 days i was flown back to uk unconcious and on ventilator,as soon as i was fit to move i was transferred to stoke mandeville.
the first 6 weeks are a bit of a blur,i know i was constantly attended to, and encouraged and supported by staff to get me fit for rehab.
physio excersizes started whilst i was still trapped in my bed, then once into rehab i realised how dedicated, professional and encouraging all the physio staff were, very benificial to me was being with,watching and talking to fellow patients, i had a definate feeling of comradeship.
please look to the end result, once into rehab its the skills. equipment,and support that is most important.
i cant compare stoke mandeville with other spinal injury hospitals, i am very pleased that i was able to go there, i think i had the very best possible attention.
i went in with no movement on my left side, thats arm, hand, leg and foot.
i walked out 10 weeks later on sticks, and now (another 5 weeks) i am home and getting about on my own.
i know i am very lucky with the speed and extent of my recovery to date, i do put a great deal of of my luck down to the treatment at sm. especially physio .
good luck,
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