My girlfriend has been suffering from RSD for 7 years. She received wrong medication that caused her disease to be increased by many considerable years. She also has a vocal chord disease that causes her vocal chords to slam shut. I have literally watched as she has passed out after gasping for air and have had to breathe back into her lungs. I have spent many hours trying to get her to breathe again. She has worked in law enforcement and has a huge heart for people. She spends her days looking for ways to help people. She has helped so many with RSD just by her positive outlook in life. I love this woman with all my heart and I intend to marry her. She and I want to spend the rest of our life helping people. She has had many painful surgeries including ones where they have drilled into her head while she is fully conscious and has been given no anesthesia. She is currently blind (as of 7/11/09) and has no diagnosis as of why. I have looked everywhere for a cure and I have heard several testimonials about HBOT and how it has successfully cured some. I don't know how much it costs, but I am desperate to find something. I love this woman and I have promised I won't leave her. So I want to find out how I can help her. Please, Please, Please write me and tell me if this would be beneficial for us to look into. She was diagnosed when she was 12 from a knee injury and is currently 19 years old. It has spread to her whole body and she has been on so many drugs as well as surgeries. She is so joyful despite her circumstances. I just have no idea what else is out there to help her.
HBOT has helped many people by reducing the pain of rsd, but it isn't a cure. There is no cure for rsd. You can achieve remission but the longer you have rsd the harder it is to do that because the pain switches from being sympathetically maintained to sympathetically independent. This kind of pain doesn't respond well to many treatments, such as nerve blocks.
The cost of HBOT varies from place to place and probably even state to state. I think I remember the general cost is $1,000 to $1,500 or maybe more per "dive" or session in the chamber. Generally a person undergoes 40 dives. Some health problems will keep a person from getting this treatment. Insurance will not pay for an "unapproved" use which includes rsd. There are only a few conditions that a doc can write a scrip for hbot for.
Hope this info helps. If you have any more questions, don't hesitate to ask!
Thank you so much for your reply. I have also been hearing some things about Lidocaine injections and I know that there have been experiments with snail venom as well, but I am not aware of the outcome, if they have been successful or not. Please let me know what you think.Thank you again for your response.
As with all things rsd, what works for one may not work for another. The lidocaine infusions have helped some rsd'ers. I'm sure it depends on how advanced rsd is, but it never hurts to ask. I'm not sure of the cost but it would be up there because the infusions are done in the hospital. Insurance may or may not pay for it.
The snail venom thing I have no clue. I haven't come across anyone who has experience with it. I know it is available in the US, it's called Prialt. It is only given by an abdominal pump.
Hi and welcome. Your gilfriend is truly lucky to have someone like you in her life. I am 27 and can relate to you two as someone trying to put my young life back together for the future. I have seen Dr. Schwartzman in Philadelphia and am going to receive Ketamine low dose infusions. It is not a cure. Everyone will respond differently, but my best shot. I started with it in my leg 1+1/2 yrs ago and it is now in both legs,arms, shoulders, neck, back, heart + stomach. I think that is classified as getting close to full body. Other treatments that have personally helped me Photon Therapy (Laser), Epsom Salt Baths, Homeopathy, Tai Chi, Cranial Sacral Therapy + Massage, TENS.....
Please feel free to message me with any other questions.
My advice, stay away from needles. Acupuncture made my disease spread.
Thank you everyone for your input. I am appreciative of your consideration and your willingness to try and help us. Right now she is still visiting doctors to try and find out why she went blind. so any treatments for RSD are on hold. It has been so frustrating because it appears that nothing is wrong with her eyes. It's not the RSD or so they say, but if any one can think of reasons why someone could go blind all of a sudden please let me know. She can still see little bits of light, but her pupils are still completely non-responsive. They thought it may have been from nerve damage to her optical nervewhile they were drilling in her head during a surgery, but they still have not been able to diagnose her. She is due for an mri on Wednesday. Again thank you so much for all your help.
We looked into HBOT for my husband. In our area (Philadelphia, Pennsylvania) the cost was $150 per treatment and they said RSD requires 40 treatments for a grand total of $6000. Needless to say we are not doing it because of the cost. Insurance does not pay for it because it is not an FDA approved treatment for RSD. Good luck and I hope you find out why your girlfriend is blind.
JD - you can negotiate HBOT as a self pay for a lower rate -the $150 rate is what they charge insurance but they will typically charge less - actually my insurance company (which was work comp) paid $80 per dive - and they were paying Dr. Allen Spiegel who is supposed to be one of the pioneers for HBOT with RSD he is in Florida - I wouldn't recommend attempting to go all the way there to get your treatments as I believe if you go to a reputable facility you will get results anywhere you go -but I will say that oxygen at depth will definitely help nerve tissues regenerate - that stated - it didn't send my RSD into remission -but it did help some with my pain - and it did also help with some other medical problems that I was having at that time - depending on your girlfriends insurance situation - and particularly given that the brain really needs oxygen you might want to ask her physicians if a 10 or 20 dive protocol might be something that could help even with her eyesight - just a thought but please don't grab onto it as I do not have any medical evidence to back it up other than the medical knowledge that as I said the brain and thus the nervous system is an oxygen hungry system and needs oxygen to heal. Best of luck to both of you.
I'm giving serious consideration to doing the HBOT -- Ya know, it's a real shame that insurance doesn't pay for it, especially since all the drugs we need to take, the morphine pump, the SCS's and all the needs of it -- all those things cost a heck of alot more than paying for some HBOT therapy. HBOT isn't invasive, and it doesn't zap your memory like so many of the medications do. It's pretty frustrating to me. We all have something without a cure and yet this HBOT isn't paid for by insurance. That's really neat that your w/c paid for it. Can you tell me where your pain was (1-10) before you did the HBOT? And then can you also tell me where your pain was after the HBOT? And, where is your pain now? And, how long ago was your HBOT therapy? I hope these questions are ok. There's a HBOT here in San Diego, but I'd like to see if there's more than one place to look into. It's also my opinion that RSD isn't well known enough so I wish that all of us could somehow get together and really educate everyone around us about RSD so that we get the same attention that the cancer 3 day walk gets, and the MS walk, Alzheimers walk, etc etc. At my school site, there's actually 2 of us with it. Myself and a PE coach who fractured her ankle about 6 months ago. Now we're both seeing the same doctor and we've both gained a bunch of weight. I was diagnosed Sep 2nd of 07.
I'm hoping to hear from you, thanks very much.
This might be a silly question, but would it help at all to get extra oxygen from an oxygen mask or the little oxygen apparatus that goes into the nostrils?
The extra oxygyn absorbed that way is bound to help increase the oxygen in our system!
It's absoluteley amzinag that Worker Comp paid for part of the dives...how on earth did you doc get approval..Do you have an attorney that helped??
That's pretty darn wonderful!!
How was our first week at school? How is your pain level...I see by your posts you are inquiring about some different options (pump, HBOT) How is you cocktail of meds working out?
Have you or your doc talked about zonagram...my p.m. doc suggested that along with my neurontin as I am so concerned about weight gain..i can't believe how much I've gained and I just keep gaining more and more...that can't be healthy!! I just don't know what to do about it...my foot doc suggested topamax, but from what I remember you tried it and didn't like it...
I get so down not only from the pain, and increased immobility, but the weight gain, too.....
The Mindbully Based Stress Reduction classes (8 weeks) are reallllly helpful!)
I hope to hear how your doin' soon!
It was early in my diagnosis that I started my dives my pain was then what I thought was a 5-7 but would now call a 3 - but the longer you live with this the more pain you get used to living with - or that's how it has gotten with me as my pain has gotten worse. The pain did improve with the dives - mostly what they did for me was my insomnia went away and I could sleep - as we all know when we sleep is when we heal - I also didn't have anywhere near as much swelling in my foot and leg and my temperature was much closer to normal rather than my foot being so cold all of the time. I know that it helped me. I guess I was very blessed that work comp paid for it but they had done it for another person at the hospital with RSD so to have refused me would have been grounds for a nasty lawsuit so I think that's why it was approved. I'm asking to start again and they haven't said yes yet - and the other person has been doing it straight for 2 years so now we are going to see what the "real situation" is going to be like - but they (work comp) have been being very unfriendly with me recently - so that good relationship that I used to have has finally gone away - not with the adjuster that I was working with but with the bean counters up the chain as they realized how much my treatments are going to cost over my lifetime as I am not improving. As for where my pain is now - on my best days I'm at a 7 and that's with some major medications and the use of a wheelchair when I'm out in public. At home I still try to use my leg as much as I can because as we all know if I stop using it I'll never get use of it back. I'm terrified of where my life is going now and it is difficult to stay positive. I'm dealing with horrible depression and of course since work comp is playing nasty they aren't paying for me to see a therapist - money is very tight but we're coming up with it or I don't know what would happen. This disease is horrible - I have wonderful friends and family but feel so worthless that it is so hard to find reasons to feel positive or happy about anything. I know that the "old" me is dead but it is becoming more and more difficult to define who the new me is going to be due to the lack of support and the way that the work comp system is continuing to promise help and then literally the next day take it away - it is tearing down any sense of hope that I had. I'm so sorry to dump this on you - it's not what you were asking. I will say that oxygen is a healer - a mask only will get your saturation up to what a healthy person would have at room air anyway. The reason that the HBOT works is that it supersaturates you and forces the oxygen into your tissues so that it gets down to those nerves where your vascular system is not working well (thus the swelling, coldness, sweating...) you know the symptoms - the nerves are making the system not be able to heal itself - oxygen helps the healing process. I know it is expensive - I also know that my work comp paid about 1/2 of what most people pay - so you can negotiate a rate for yourself if you promise to go for a set number of sessions - like 40. I hope that this information helps - and if I didn't answer all of your questions feel free to ask more - I'll answer them to the best of my ability. Big wishes for a pain free day and I hope that the start of school isn't too rough on you - I know it is hard but I know that you have a lot of good motivation and help in your family to keep doing it - they love you and they need you - and you have your kids at school too... those smiling faces have to help some too - focus on the good thoughts when you can and hopefully it can help some of the pain go away. Best wishes to you in whatever decision you make.
It sounds like your ging through a very hard time and now is the time where some emotional help would be sosupportive for you. I think it is criminal for W.C. to withhold a psych therapist when you are having such a hard time dealing with you pain and the stress of it all.
I have reaad a couple of books that have been very helpful and maybe you can order them and try and get some support from reading the books. i have found reading appropriate books for our situation to be so helpful.
One of them is called "Managing pain before it Manages" you by Magaret Caudill. This is a workbook that gives help and strategies with chronic pain...it was really helpful...
Another book is called T"he Pain Survival Guide/ How to Reclaim your Life" by Dennis C Turk.
I know it may sound inadequate to het help from books, but Truly they were very very helpful..I ordered them both on-line ...and they were delivered to my home.
There may be some agencies that can provide some help with couseling since worker's comp seems to be falling short on this need.
I am thinking of you and hoping you are able to find some strength to stay positive.
I thank you - truly - for the kind thoughts and the help - I'll take whatever I can from whatever source I can find it at this point - I need to find ways to stay positive and ways to help myself since the "professionals" won't - I look forward to getting your books and appreciate knowing which ones to get - sometimes trying to find the right self help books is the hardest thing to do.
Take care and best wishes to you for pain free days.