Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 12-05-2007, 02:36 PM #1
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Thanks for all of the positive responses - I will let you all know how we get on tomorrow
The reason HBOT seems so cheap over here is that the chambers are run by a non profit making MS charity who receive grants and donations to fund the majority of their upkeep so can pass on such incredible cost reduction to their clients who basically pay only for the oxygen tanks used.
As such they do not have on-site nurses or seperate adult and child facilities, hence needing to have a responsible adult to accompany her into the chamber.
My mum had progressive MS (she died six years ago from complications) but in the early stanges HBOT helped with several of the complications of the illness and also gave the the oppurtunity to talk about her fears and anxieties with people who fully understood her condition
I am hoping the same will be true for Alison and that being with people who don't stare at her foot or look at the way in which she strugges to try and walk with pity will be, in itself, a positive experience
To me any reduction in pain, swelling etc would be a bonus - the main aim is for Alison to recover the belief that having a neurological illness doesn't have to be the end of the world and that there are ways in which she can regain control of her life
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Old 12-05-2007, 08:48 PM #2
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Originally Posted by ali12 View Post
Thanks for all of the positive responses - I will let you all know how we get on tomorrow
The reason HBOT seems so cheap over here is that the chambers are run by a non profit making MS charity who receive grants and donations to fund the majority of their upkeep so can pass on such incredible cost reduction to their clients who basically pay only for the oxygen tanks used.
As such they do not have on-site nurses or seperate adult and child facilities, hence needing to have a responsible adult to accompany her into the chamber.
My mum had progressive MS (she died six years ago from complications) but in the early stanges HBOT helped with several of the complications of the illness and also gave the the oppurtunity to talk about her fears and anxieties with people who fully understood her condition
I am hoping the same will be true for Alison and that being with people who don't stare at her foot or look at the way in which she strugges to try and walk with pity will be, in itself, a positive experience
To me any reduction in pain, swelling etc would be a bonus - the main aim is for Alison to recover the belief that having a neurological illness doesn't have to be the end of the world and that there are ways in which she can regain control of her life


Hi Andrea,

Who actually runs the sessions then? Does the MS charity pay for the staff that are a legal requirement here and I would have hoped everywhere else.

I am extremely concerned about HBOT not being taken as a procedure that is certainly known to carry some medical risks.
I have had many dives and whilst most run smoothly, there are risks of oxygen toxicity, pulmonary emboli etc and even though these are infrequent complications there must be someone on hand to recognise and treat them if they occur. I have had complications myself and have observed others have problems which could have led to dire consequences if not for the staff.
There always must be a doctor available on hand here in Australia, a highly qualified technician to manange the diving process and hyperbaric trained nursing staff in the chamber.

best wishes
Tayla
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Old 12-05-2007, 09:50 PM #3
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I did the HBOT- I was in a cylinder that only fits one- It wasnt that bad- I could watch TV and talk to the outside world= Unfortunately it didnt help me but I know of 2 people who have had good success with it. I think its important to take a lot of antioxidants while doing the dives (U can PM Vicc about it-he knows alot) Also practicing clearing your ears like when u go up in a plane. I had to take a break due to ear problems...Keep us posted!

Deb
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Old 12-06-2007, 12:55 AM #4
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I did the HBOT- I was in a cylinder that only fits one- It wasnt that bad- I could watch TV and talk to the outside world= Unfortunately it didnt help me but I know of 2 people who have had good success with it. I think its important to take a lot of antioxidants while doing the dives (U can PM Vicc about it-he knows alot) Also practicing clearing your ears like when u go up in a plane. I had to take a break due to ear problems...Keep us posted!

Deb



Deb,
The centre I went to has a mono chamber but I never went into it as it made me claustraphobic. The TV made it appealing but it was not to be. It was usually occupied by an elite sports person for whom their team was paying a fortune to fix a hamstring tear or the like
The mono chamber has the technician sitting directly outside and are much quicker to depressurise and open than for the large chamber if there is a problem with the patient.
Cheers
Tayla
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Old 12-06-2007, 02:28 AM #5
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Hi Tayla
Just to clarify - the Centre Managers and staff are all fully trained in the use of HBOT and are, more often than not, retired nursing staff, medical professionals or the like
There are very strict guidelines and anyone undergoing treatment is asked to seek advice from their GP before they start
Hope this reassures you but I'll try and post more about it later, once I have spoken to them at length
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Old 12-06-2007, 08:01 AM #6
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Hi Tayla
Just to clarify - the Centre Managers and staff are all fully trained in the use of HBOT and are, more often than not, retired nursing staff, medical professionals or the like
There are very strict guidelines and anyone undergoing treatment is asked to seek advice from their GP before they start
Hope this reassures you but I'll try and post more about it later, once I have spoken to them at length


Thanks for that Andrea,
When you said there were no onsite nurses I was wondering who was looking after the patient care during the dives.
It has been said on this site by another member that in America HBOT can be run by someone who "flips burgers" so I was wondering just how much regulation there is of HBOT in the UK
I wonder if you think I am making a mountain out of a molehill here but as a patient of months of HBOT there was much that I saw and experienced that made me realise the importance of having well trained HBOT staff available at all times.
We often see on TV the sight of a rather healthy looking person climbing into a mono chamber with a grin on their face as they watch TV as they try to hurry up the healing of a muscle strain so they may have an early return to their elite sport when the reality is that in most HBOT chambers around the world they are filled with sometimes critically ill patients who need the same type of intensive or critical care as they would in a normal ward.
I realise that this is probably not the case at this unit you are hoping to go to and I just hope that it will be just what Ali needs
Love Tayla
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