Hyperbaric Oxygen Treatment for CRPS type II

ALASKA MIKE · 10-12-2013, 05:51 PM

I wish that was true because there are plenty of HBOT systems you can buy between $15,000 and $30,000 but the majority of people that I know did not go into remission with those 1.3-1.6 ATA systems rather it had to be over 2.0 and in order to get that deep you have to get a 3.0 ATA system that costs over $100,000 used or goto to your local hospital or private HBOT facility that use 6.0 ATA.

Sometimes I just want to give up on getting a 3.0 and try out a 1.3 ATA purely for recovery and see if I do a hundred dives at home if it would help with anything.

Quote:

Originally Posted by allentgamer

There used to be a member here that has passed on now, but he did in depth research on HBOT, and he recommended that the dives should go no deeper then 1.5 atmospheres. He said that deeper then that wouldnt be good for CRPS II. He also was spurring me to try this, but I could never get approval. He always told me that 80 dives at 1.5 would be the perfect way to battle the RSD, and said if I went deeper it actually would do more harm then good. He does have old posts in here, his name was Vicc.

Quite the ornery old guy, but I believe he did do his research, and have always wanted to give it a go.

allentgamer · 10-14-2013, 03:15 AM

I wish I knew more about it. There is another friend that bought a chamber and does the dives. I think there is a pic here of it. She would know a lot more then I about this. I do know it works for lots of folks.

This is the one she has.

http://neurotalk.psychcentral.com/al...pictureid=3445

She say is works great, and cant live without it.

Djhasty · 10-14-2013, 09:27 PM

Bram,
Thanks Bram for your kind words of encouragement. I've been both up and down at the same time. I see some improvement with the treatments but I long for home and Darrell and Frank. I did reach a 4. It remains my lowest number yet. I'm still trying to get back at least to a 5 if not a 4 on the pain scale. Something happened last weekend to cause a flare ... most likely stress related. Note too that the flare has not been as severe or as long as previous flares.

My sores are healing, though I do have new sores that still pop up. They are smaller and heal quicker. The redness of my feet and left leg are more often pink rather than red. My overall pain numbers are down even after some activity. Granted that activity is minimal. As you noted, I am trying to stand taller instead of hunched over. I am starting my 6th week. And yes, it does seem like 6 weeks. I've not had to go it alone. Darrell made sure to set up caretakers to watch over me on the weeks that he could not be here. I do feel strong enough now that I might be able to go it alone if had to be.

By this diary, I hope you find some insights into the HBOT process and possible benefits, as you mentioned that you were considering the treatments for yourself. I know that you are suffering a flare of your own right now. I hope you find relief soon. I encourage you to take comfort in your wonderful poetry, if even just for distraction. For me distraction is key when trying to manage through the pain of CRPS/RSD. I've enjoyed your poetry corner. Thank you. I lack the skill.

BTW: I love animation. Ice Age, Toy Story, Shrek, Monsters Incorporated, etc. are examples of excellent graphic animation on the big screen. In another life I would be an animator working for Pixar or Disney or DreamWorks or ... Well, I can dream can't I?

Djhasty · 10-14-2013, 09:48 PM

Thank you Tessa for your cheers and encouragement. I'm feeling good about the treatments overall. I think I have a way to go caused by my flare. The flare too just happened at a time that we all could see what happened as far as the HBOT dives are concerned. I do still have a number of dives ahead, including follow up dives.

Thank you, SloRain, I'm sorry to hear of the death in your family. It is difficult when one of our loved ones is called home. Please take comfort in knowing our loved ones live forever in our hearts. My thoughts are with you. As far as your daughter, I am sorry to hear she came out of remission but happy to know that she found it again through Calmare. I am certain these alternative treatments will meet the challenge against this monster. I venture to say that one or more will become mainstream and approved by the FDA so that insurance companies will pay for treatments for those suffering. Hopefully soon.

Thank you, RSDRenee, thank you for your support and encouragement too. Yours and the others' bring me much comfort.

Djhasty · 10-14-2013, 10:15 PM

AllenTGamer,
I looked up Vicc via our search tool. Thank you for the tip. He has posted some very interesting information about HBOT. Often his arguments for HBOT are technically over my head but I do understand the positive points to a degree. I've been going down typically to 2 atm. This is my limit because of my Baclofen pump. Medtronic's does not recommend any deeper. My technician has played with the depth to get the best results for me but never more than the 2 atm. Each CRPS/RSD patient is different and thus theHBOT dives need to be adjusted thusly. I'll be up to 60 dives. I could argue for the 80 as well. Since I had the flare, another 20 for me would be welcome. BUT, I am wanting to get home too. I miss the place, my friends, and my dog. I will be returning to California for follow up treatments every so often. The timing is yet to be worked out. Of course it depends too on money. We'll need to save up since we used a large amount to pay for these initial dives, housing, meals, car rental, etc.

The pic of the HBOT tank you posted is quite similar to the tank I've been using. The tanks here are bigger around. They are supposed to hold two people in each. Otherwise, yep. A tube with a big metal door, port holes, and a bunch of highly technical gears, dials, buttons, and nobs. It would be nice to have a tank of my own but I certainly don't have that kind of cash to layout on one. Besides, the tanks here come complete with a highly trained individual who knows what all those dials and nobs mean and do.

Thanks Allen for your responses. I hope you are getting some insight into the HBOT process. Inside, while diving, it is peaceful and it would be a great place to meditate too.

Djhasty · 10-14-2013, 10:34 PM

AlaskaMike,
Yeah, $15k to $30k to $100k is way too much for me to afford. If I did have the money, I'm not sure where I'd put it. We live in a small condo. We'd have to rent a place to put it causing even more expense ... not to mention all the set-up including oxygen. I'm limited to 2 atm because of my Medtronic's pump. I've been going in every 2 weeks to have it filled while undergoing treatment. Medtronic recommends it be full to protect the pump. It has been a bit of an inconvenience, but I have to protect it. I can't get treated in the hospital because HBOT for CRPS is off-label. The FDA has not approved it ... Yet. This is the biggest rub. Once it does, then perhaps others in the CRPS community will be able to afford the treatments and get them in a local hospital.

Believe me, I'm really not complaining about sunny Southern California. It is that, exactly. The weather is beautiful. It has been beautiful during my 5 week stay so far. Okay, there was one 1/2 day of rain.

Thank you for your response AlaskaMike!

CRPStweet · 11-09-2013, 06:08 AM

Quote:

Originally Posted by allentgamer

There used to be a member here that has passed on now, but he did in depth research on HBOT, and he recommended that the dives should go no deeper then 1.5 atmospheres. He said that deeper then that wouldnt be good for CRPS II. He also was spurring me to try this, but I could never get approval. He always told me that 80 dives at 1.5 would be the perfect way to battle the RSD, and said if I went deeper it actually would do more harm then good. He does have old posts in here, his name was Vicc.

Quite the ornery old guy, but I believe he did do his research, and have always wanted to give it a go.

Thanks for this info Allentgamer!!

Sirena · 01-01-2014, 10:29 AM

Hi there,

I'm wondering how you are doing now after the HBOT series.
Thanks!
Lori

Brambledog · 01-01-2014, 10:41 AM

I was wondering that just the other day Sirena

DJhasty - I hope things are going well for you after the HBOT and that the gains you made have stayed for you...maybe even improved? I'm hoping so.

Bram.

SloRian · 01-03-2014, 04:28 PM

Yes, please give us an update (hopefully a really good one!)

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