Ali's mum here
Just off the phone with the Manager of a localish HBOT Centre who have experience in treating RSD patients and have seen some quite favourable results - they will be putting us in touch with RSD patients on their books
They are fully licensed to take children as long as I sit in the chamber with Alison and would like to meet us to discuss the treatment further
As the drugs and PT do not seem to be helping Ali at the moment I thought we might give this a try, even though I have heard mixed reports about its sucess
The Centre already have a treatment schedule set up for RSD with depths, durations etc which we will see on thursday and at a cost of £10 per session plus travel it has to be worth a try
They also have their own on-site neuro-physio who would be happy to take a look at Ali's balance problems and see if she can help her to get back on her feet
Has anyone here tried HBOT and what should we expect - I know it is not a cure, but I am hopeful that it will help reduce the swelling, pain etc to a more manageable level
Many Thanks
Andrea

I have been wanting to try HBOT for at least 3 yrs now but the cost here is much higher than where you are. It's a minimum of $110.00 per session and the doc that runs the place said that I would have to go for a minimum of 40 sessions but feels that it may take 80 or more sessions. They would do 2 sessions each day. Plus I would have to travel about 6 hours to get there and hotel costs would make my total bill near $10,000.00 more or less.

I don't know how far you would have to travel but I say give it a try for £10 per session.

I too have heard mixed outcomes with HBOT and RSD. But with it being non-invasive, non-chemical... if I could afford it I would definitely give it a try.


Best of luck to you Ali and Andrea!!
My fingers are crossed and you are in my prayers!!!

Abbie

on PN has had 30 treatments in Mexico. You could PM her and ask.

I personally think it is worth the try. Just my opinion. If I had RSD I would try it.

here is the thread:
http://neurotalk.psychcentral.com/sh...178#post163178
I have some links on there too.

Good luck. I hope it works for you.

Ohh but that is so wonderful Andrea

It must be a huge relief to you knowing someone with a fresh outlook is going to examine and treat Ali, and a fresh impartial outlook to examine her balance problems is huge as well.
I have heard good things about HBOT I had looked into it first to treat my own son who has CP years ago.. and lately for myself since RSD, I think you may find this site below a good one of clinical trial results of RSD and HBO treatments:

http://miraclemountain.homestead.com/HBOTandRSD.html

I would be very interested to see their treatment schedule that they have set up for RSD with depths, durations etc.. as a matter of fact I remember other members asking for just those details depths etc in another posting that may or may not be linked to the bottom of this page..

I am not sure if you are aware of this Andrea but at the bottom of each thread there is a listing of other threads that relate to the subject matter.. HBOT in this case, and in this way you can research other posts within all of Neurotalk's forums that are relavent to what you are reading at the time .
I didn't notice at first myself so I thought I'd bring it up in case you hadnt either lol.

Again I am so happy for you guys to be getting this opportunity now, give Ali a big hug for me that way you both get one
Sandra

That is fantastic to come across this group who seem to be quite proactive in their treatment of their RSD/CRPS.
It seems amazingly cheap
Here it is much more expensive but it is covered by medicare if you qualify under some specific criteria.
I am interested to know they want you to be in the chamber with her? There should be a member of staff in the chamber to look after her if it is not a mono chamber.
Parents do not accompany children into HBOT here, but then children do not share the chamber with adults usually so they have a paed nurse to care for them.
It is worth having a go Andrea. It did help my oedema quite a lot.
Good luck
Tayla

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

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

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