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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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#1 | |||
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Member
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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 Last edited by DianaA; 03-18-2008 at 12:38 PM. Reason: Tried to attach picture of chamber... |
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"Thanks for this!" says: | Sandel (03-18-2008) |
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#2 | |||
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Magnate
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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 |
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#3 | ||
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Member
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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 |
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#4 | |||
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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 |
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#5 | ||
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Member
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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 |
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#6 | |||
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Member
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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
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#7 | ||
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Junior Member
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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 ![]() |
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#8 | |||
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Member
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Pam,
Glad to hear from you. We will talk soon. I'm down with the flu. ![]() 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 |
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