HyperBaric Oxygen Therapy good for CCSVI Patients?

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HyperBaric Oxygen Therapy good for CCSVI Patients?

Postby adamt » Wed Feb 16, 2011 12:37 pm

hi,
I was liberated balloon angio in December, IJVs and azygos stenosed,

i was wondering if Hyperbaric Oxygen Therapy would be beneficial or harmful for a CCSVI patient,

when i have ;less oxygen my legs always become weaker, e.g. in nightclubs when smoking was allowed, standing under air conditioning unit would quickly give me strength in my legs, also when talking constantly for longer than a few minutes with few breathers weakens my legs
so clearly lack of oxygen affects my mobility

so would hyperbaric oxygen therapy benefit me?
or are there risks?

has others with CCSVI used HBOT with success?
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Postby Katie41 » Wed Feb 16, 2011 5:43 pm

Hi, I did hyperbaric therapy for two months, 8 months prior to having the CCSVI procedure. It helped some symptoms abate for up to 4 months, and others for a few minutes. The many symptoms that improved, convinced me that CCSVI was for real when I first heard about it. I knew about how much I would improve, at least, short term.

When I did the therapy, my physical therapist who does deep tissue work, said that my lungs needed help to fully function because of the pressure they had been under during the therapy. Because of that, I have been reluctant to do any more after having angioplasty for CCSVI because I was afraid the pressure on my veins might cause them to restenose.
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Postby adamt » Thu Feb 17, 2011 11:11 am

hi Katie,
In the two months yoyu had HBOT how regularly would you have the treatment for and fore how long each time?

i have the same worries of restenosis, but apparently a doctor who performs liberation treatments recommends HBOT to patients after the procedure

does anyone else have experience with HBOT?
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Postby EJC » Thu Feb 17, 2011 12:52 pm

Emma had the procedure in December and we're about to investigate HBOC treatement this coming week.

I don't see re stenosis as a concern.

It's had been suggested that an initial "hit" of 15-20 treatments in a 6 week period really kick start the treatement, followed by a weekly or fortnightly top up.
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Postby Katie41 » Thu Feb 17, 2011 5:37 pm

I did 5 treatments a week for two months. It really helped short-term; but, my son-in-law's step-mother did it over 15 years ago and went into remission. She has never had any symptoms since. Don't know why that worked that way for her.
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Postby CaptBoo » Thu Feb 17, 2011 9:24 pm

I did 20 sessions in a month before angioplasty. It seemed to help with energy for me but not with balance or leg spasticity. Angio has so far solved energy and balance. The leg remains an issue, dead neurons, my guess. I would love to try HBOT again, long term to see if the increased O2 would quicken neuro-healing but at $250 per session, not covered by insurance, that's not going ot happen short of winning the lottery.
<div>There be no dragons   ...Reese Palley</div>
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Postby EJC » Fri Feb 18, 2011 5:38 am

Wow, $250 a pop is silly money.

We were looking at £10 ($16) per session here in the UK - these guys http://www.mssussex.com/

The money isn't the issue for us at all, it's physically getting there and finding the time to do it during working hours (it's a 100 mile return trip for us).
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Postby dc10 » Tue Feb 22, 2011 10:19 am

EJC go to this site - http://www.msrc.co.uk/index.cfm/fuseact ... pageid/258


it lists the MS centres in the UK that offer Hyperbaric oxygen therapy,

did anyone see their mobility improve after hyperbaric oxygen therapy?

any thoughts on whether HBOT can affect dilated IJVs or azygos vein?
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Postby EJC » Tue Feb 22, 2011 11:58 am

Thanks dc, the nearest centre to us is Coulsdon but they don't offer HBOT.

However, Sussex does, an 80 mile round trip.

We made it there for our first visit today, got Emma in the chamber (a bit of a faff) and got the mask on her - needs more practice.

We're going back Thursday which should be a little easier now we know what to expect.

I'll update as we proceed.
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Postby EJC » Thu Feb 24, 2011 1:52 pm

Thursday session completed today.

Altogether better, mask fit better, 55 minutes of 100% oxygen at a depth of 16ft.

I learned today that this is Baric Oxygen Treatment - not HyperBaric...apparently the hyper bit is more depth (pressure) and is a little too deep for the purposes of MS sufferers.

Emma is tired after the treatement, which actually seems normal,, but the next day she is absolutely buzzing with energy and keeps going to a time that is previously unheard of.

I've volunteered to learn how to operate the chamber so I can do one or two evening slots to open up the treatment for those that want it later in the day.

We need to get as close to 20 treatments in 6 weeks as we can. That really is going to be a tall order but we'll try as much as we can.
Last edited by EJC on Thu Feb 24, 2011 4:02 pm, edited 2 times in total.
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Postby Cece » Thu Feb 24, 2011 3:52 pm

EJC, thanks for the updates, I would be interested in giving this a try myself but don't think we have access to it here as easily as you do there.
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Postby EJC » Thu Feb 24, 2011 4:01 pm

I get the feeling our slightly less litigous society here in the UK is more open minded about things like this.

The thing is, there's no money in operating one of these chambers (at least not in the UK) so it's always down to volunteers to put somethign together.

Do a bit of research Cece, it seems such an obvious (connected) progression after CCSVI treatement to help things along.

It's all about oxygenated blood!
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Postby EJC » Sun Mar 06, 2011 1:30 pm

Emma has now undergone four oxygen treatements with the following effects:-

She is absolutely knocked out of energy on the day of the treatement but the next day is noticeably more energetic.

Right now we're gettign a "dive" on Tuesday and Thursday each week, withe Friday being Emma's best day.

We're now trying to get Saturday inculded with help from Emma's dad.

It's an 80 mile round trip to our nearest chamber and I'm stuggling losing the time off work.

The magic number seems to be 18-20 dives in the first 6 weeks then tops ups.
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Postby Daisy3 » Mon Mar 07, 2011 2:55 am

EJC,

I can't remember where you live but i do remember it being near London. There is an MS centre in harrow that has the oxygen therapy. Is that not closer to you?
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Postby EJC » Mon Mar 07, 2011 10:18 am

We live near Godstone (J6 M25) and my business is near Gatwick Airport.

So I get Emma's father to run her down to my warehouse, then I run her down to Brighton.

We're probably closer to Swanley, but the trip to Brighton is quick and easy from work.
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