My HBOT
 

Well, I guess I am going to have to step in here and add my two cents worth. Some of you may remember me as Zida on the old forum. For those of you who don't remember or are new, I'll try to make this short. I was diagnosed with RSD in 1989 with migration to all 4 extremites. I have had a upper thoraic radio frequency sympathectomy, blocks and all the cocktail of meds. Then, with research and conversation with my dear friend Vicc, I decided, I had nothing to loose.
I was truly ready to throw in the towel!!! My beloved Doctor of 15 years had taken her own life and I had never felt more hopeless. So, I sold my Jaguar and headed for Canada, where I recieved 40 dives @1.5 ata, (Yes,yes, yes with grapeseed extract, suppliments and a nutritional diet). My first series of dives, made an amazing improvement on pain levels, and I was able to walk.
I eventually was able to get off mega pain killers...100mg Fentanyl patch plus
100mg MS Contin 3X daily, plus dilaudid 4mg for break through, on top of nuerotin, effexor, baclofen, clonidine, sleep aids, etc. Those 40 dives impacted my life , I am forever changed. I got results for almost a year, in which time I was able to live life differently than I had previously. To make a long story short, I had 2 more 40 series dives in the US. Also, with about a years worth of pain relief each. There is so much more to this story, but to shorten things, I bought a Hyperbaric Oxygen Chamber and made a chamber room for treatment, with all the safety features possible. I also took up scuba diving and I am now an advanced diver, as well as a rescue diver working on my master divers cert. I realize that everyone seems to respond to treatment differently, I personally find that I need to continue maintenance dives to keep RSD at bay. As, far as the ear infection, I'm not sure that was a result of the dives. In diving, we have open spaces that must be equalized, when under pressure, the sinusis, the eyes and the ears. In a chamber clearing the ears, and a slow desent or assent, should not leave you with any pain. For those of you who have felt worst after a series of dives, I have as well. But weeks after the series, I would find that I reaped benefits far beyond my expectations for months to come. I cannot say enough about HBOT. These are my personal experiences over many years. This works for me and I have a great deal of confidence that the benefits of HBOT are worth exploring.
I'll be happy to answer any questions. Love to all...Diana

Hi Diana,
 

Where did you purchase your chamber. Some on here might want to know.

I knew a lady here in town that purchased one out of Texas at about 7,000. I use to have the address but have lost it.

I'm glad this has helped you.

Ada

Diana,
Thanks for sharing your experience with HBOT! Were your completely pain free after the 40X of 1.5 ATA and that your pain relief lasted for about a year? Would you pleased clarify? Did you experience any significant temp or permanent side effects from the HBOT? Why is your HBOT at 1.5 ATA instead of 2.4 ATA? I had 30X of HOBT and found good pain reduction. I am in the process of discussing the appropriateness of getting more treatment. Any feedback is appreciated!
Numb

dreambeliever128,
Its been a while since I've posted so let me answer you both. First, I bought the chamber from an individual who got it from a hospital. It is a Reneau, there were 20 built, I think I have #18. It was very very expensive. Not reasonable for everyone. I don't know how to post a pic, but you can look it up, if interested. I do know that there are portable ones, but I don't know anything about those except for rescue diving applications.

numb, The first 40 dives at 1.5, were in a multiplace chamber, with a hood and 7 other people. I think that 40 dives at 1.5 ata would make any one feel great. But, I had to wean off my drugs. Then I returned to them after the pain returned at just about 8 or 9 months, though no where near the same pain levels. My second series of dives was at 2.4 ata in 100% oxygen chamber, in fact the same model chamber that I purchased. AT, 2.4 ata, I experienced side effects that lasted for about 6 weeks. The results were again great, but I had to begin weaning off the morphine again. With my third series of 40 dives at 2.4 ata, I experienced even more side effects and cut short a few dives and went home. I had made up my mind this trip to buy a chamber. I am completely drug free since October 21, 2007. It was difficult after 18 years to get off them. I now am able to manage my pain with a series occasionally and a few maintenance dives. It is so difficult to go into detail here. As far as I know, I have no adverse permenate side effects. Durring and after the dives I had, frequent urination, some burning pain after the dives and sore ear drums from clearing my ears. The same soreness I experience from underwater diving. If you, or anyone would like to chat send an email with your number and I'll share my experiences or answer more questions. I just know that it works for me. I'd be willing to talk to anyone that is interested. I know that HBOT is expensive, and not everyone can get this treatment, sad to say. Everyone has to weigh there options and do what they think is best from them. I have had RSD since 1989, 15 years, before I began HBOT, so I think my results are amazing. I have heard of people that were pain free after 1 series of dives, but you never really hear if they had to go back. They just kind of disappear. I can only tell you what happened to me. HBOT has been worth it. You should have a physical, chest xray, and a prescription before you get HBOT treatment. Smokers should not dive. Please feel free to ask any other questions. I wish you all the best should you decide to try HBOT again. Diana

HI
 

Hi Diana- Its me Debbie- Dont know if u remember me- I went thru the HBO2 also and talked to you and Vicc. I would love to talk to you again! I am thinking of giving it another try,,,Can you email me at Spudsailor@aol.com with your phone #

Thanks

Debbie from NY

Hi Debbie from NY City. Yes, I do remember you, I have thought about you often. I also think I still have your number programed in my phone. I am behind on all my calls, and I would love to know how you are doing. I'll drop a line and leave my phone number. Hope to hear from you soon. Di:)

Hi Diana,
 

It sounds like you are doing great. I am glad to hear this.

I am off my meds now. I am still doing my Prevacid for my stomach but that's it. I didn't do the Hbot though.

I thought people might be interested in knowing about the portable HBOT units.

I had a friend here who purchased one out of Texas about 8 years ago. She offered to let me use it but I didn't go that route.

She had purchased it for her daughter that had a stroke. She couldn't get her to sit still in it though.

There are cheaper units out there for people that can't afford the expensive ones.

I am glad to hear that it did you a lot of good. It gives others hope.

Ada

Diana,
I am so glad to hear that you are off the pain med. Are you pain free or you have minimal pain that just requires a few session of HBOT to keep the pain down. Did you require a prescription to purchase the chamber? How much did you pay for the chamber?
Take care!
Numb

Ada,
I am so glad that you are off the meds, I know they have their place in treatment, but side effects can be brutal. I do hope you are fairing well.

I just want to clear up something with everyone. I am in NO way advocating that everyone should have HBO Chamber in their home. In fact, I think that there are many risks involved. Accidents can be deadly. HBO treatment, I feel should be rendered by a doctor or a certified tech. My son is an EMT and a rescue diver like myself. Although, it is often said that side effects are rare, I think much research still needs to be conducted, for the new applications that HBOT is being used for.

To place a chamber in the home requires much careful planning and knowledge. Precautions for fire, loss of power, grounding rods, special flooring, no carpet, (OXYGEN=FIRE POTENTIAL). no oil products in the room, and the lists goes on. I understand that desperate times require desperate actions, but for sure the potential for a disaster is real.

Anyone considering buying a chamber, should educate themselves to the fullest and get a certified tech to run the chamber. Also, if there is only the patient and the chamber attendant, you should call somone close that knows how to run the chamber as well, and give them your down time and a call when you are finished so they know you are safe. If they don't receive a call they can alert 911 and get to your aid if there is a problem. You also should inform the nearest fire department about the use of oxygen.
I know this sounds overboard, but in fact, I have left out all the medical scenerios that are possible ie: a colapsed lung, seizure, blood sugar problems, and the list goes on.

I wish for all, the best pain free days possible. I just wanted to clarify some of what is involved in owning a HBO chamber. There is so little space to give fully, and clearly an explanation of all considerations.

It took me years, of research, diving instruction (with a partner) and planning to get to the point where I would put a chamber in my house, (within its own room), never mind ever being comfortable with it. I also have two fire fighter friends close, that we trained for an emergency. Overboard, you might say so, but definately precautious.

Well, I could go on forever, so I better stop. All the best to all of you.
Diana

Numb,
To answer your question about my pain levels, I am able to keep them at a minimum with a series of dives and a few maintenance dives. A duwer( do-er) of oxygen cost about $150.00 and burps off into the atmosphere at about 1%per day. So when you have Oxygen, you use it. The amount I paid, I will tell you privately, as I said before, more than most would want to afford. Drop me an email. I believe it is on my profile. I'll tell you this, more than a brand new Cadillac. ;)
All the best..Diana

Hi Diana
 

It's been a long time since we talked. I am thrilled to know that you are doing well.

I'm doing ok. The back surgery I had in 2005 complicated my RSD situation.

Go for it girl!! Pam

cool
 

Hi Im Melody,

I was so happy to read this. My son has RSD (he just turned 21) and it breaks my heart. I have been trying to get him to consider HBOT. I am going to have him read this note from you. I will probably have some questions later on.

Thank you for writting this.

Melody:)

Pam,
Glad to hear from you. We will talk soon. I'm down with the flu.:( So I have to be brief. Look forward to catching up.
I hope you are well.
Diana


Melody,
So sorry to hear about your son. I have heard the pain of other mothers whose children have RSD and it is always heart breaking. As I said in the note to Pam I'm in bed with the flu, but I certainly would be glad to hear from you or answer any questions. Look forward to hearing from you.
Diana

Thank you so much for Sharing I have just one question
 

Diana I can not thank you enough for sharing all of this - so so thrilled for you that you are near to pain free- it is just so thrilling it is possible.
Diana- I have had a very diffucult time getting a script for this here in florida. the ones attached to hospitals cant take you as RSD is not approved on their list. The ones that are not attached to hospitals do not take insurance.
But I would pay anything I could if I thought it was safe. I guess I have two questions, are the independent ones safe? And may I ask why you had to begin in Canada? I didnt know if you lived there or had to travel there for treatment? Thank you again so very much ! Sincerely, CZ
Ps I have had the coma treatment, which was very sucessful however did not last.my full body rsd returned.

CZ,
I did my first HBOT in Canada, for several reasons. One, It was less expensive than the US. You stay in a facility, with access to a kitchen, fix your own meals, and pretty much take care of yourself. You can take a care giver with you. This was cheaper than treatment in the US, plus, hotels and food. Second, the owner has a daughter who had RSD, and if I remember correctly Cerbal Palsy, he is also a scuba diver and pilot, so I felt comfortable that he knew what he was doing. Thirdly, it did not require a prescription, but I paid out of pocket. I can not say enough about this place. They are amazing, they treat children from all over the world, with Cerbal Palsy, stroke victims, MS patients and you get a first hand view of what HBOT treatment can do for people. I also got to watch how physically challenged children and their families live each day counting every little improvement they see as a most amazing blessing. I think there are probably a lot of fine HBOT centers in the US, and I believe they have doctors on sight to write the prescriptions for treatment, after an examination. Will insurance pay for it with RSD as a diagnosis, probably not.
Just to purchase oxygen I have a prescription for
" Physically fit Hyperbaric Oxygen Therapy " (experimental) That is how the prescription reads. It has taken years for me to get to this point. I had been diagnosed with 4 extremity RSD since 1989. I feel that if I had been given HBOT sooner I may have had faster, better results. I guess I'll never really know. I'm just happy to be where I am at this point. I hope I have answered some of your questions. Please feel free to ask again, if I missed anything or something new comes up, I do wish you the best. Diana

Jeanne,
I am always pleased to hear than someone has good results with HBOT. I also think you are right, it is an important message to get out. My dear friend Vic Collins has been sending this message out for years. He was really instrumental in my efforts to get treatment. Everyone should read his posts.
I hope you and your daughter are doing well. Thank you for sharing. Diana