Hi Mike,
Blue Cross did originally pay for my ketamine treatments then decided they were experimental/investigative. The most Dr. S's office could do for me was to send me his lastest research findings in hope that would help. It didn't seem to have any bearing on BC decision. I just received the answer to my appeal over the weekend and they denied it again.
Hopeful

I'm so sorry for your battle with insurance and second denial. I understand about being too tired to battle. I'm 61 and thinking of applying for disability. My Dr. said he would support me with the application.
I'm glad you are seeing a psychologist. How was the visit? Professional help for myself helped and continues to help. I went thru 2 plus years with a wonderful counselor when my parents died in the 70's & 80's. And 5 years ago, when I was diagnosed full body I found a wonderful psychiatrist, nuerologist, and pharmacologist. He has helped me so much and is also my pain management Dr.
In my case, I did have swelling as my first symptom after benign breast tumor and armpit tumor. When they withdrew fluid 3 times, it was green. Of course they didn't mention that meant infection -no antibioics and sent me off to rehab dr. for frozen shoulder and she oversaw my physical therapy. Surgeon couldn't get rid of me fast enough. Then after remission of a year, spread to other shoulder. Besides full body, I have internally too.
Thank you for your kind words, I have tears rolling down my face. Your kindness touched my heart. I feel your pain. I try to be supportive to everyone struggling as we all do. I'm thankful to have a supportive family. It did take time for that to happen.
If your psychologist isn't right for you, don't hesitate to change. I changed with my first experience. One visit and I knew he wasn't right for me. The second one was a jewel. and my first psychiatrist is a gem . I've been seeing him for 5 years.
Take care and hope you are feeling better soon. Your friend, loretta soft hugs

Hi dessteele,
I just wanted to tell you how your response and encouragement to hopeful touched my heart. How comforting you were to her. I loved the thoughts you shared with her and in turn encouragaed all who read it.
How long have you had RSD? Flares are tough to deal with that is for sure. Hopefully the nerve block is continueing to help you. I have never had a nerve block. It was 4 years before diagnosis-now full body, internal and 14 years. Now I am aware I got it following benign breast tumor. Swollen arm, withdrawal of green fluid and frozen shoulder. Dr. got rid of me-no antibiocs - sent to Rehab Dr. to oversee physical therapy. It took 100 treatments plus I did massage therapy on my own before the p.t. They wanted to operate and break my shoulder, but I said NO and continued the massage therapy and p.t.
I called Blue Cross and told them I was sent to orthopedic surgeon who wanted to operate and would still need p.t. after surgery. Would they like me to do that or pay for massage therapy????? They came back on the phone and said, yes, they would be HAPPY to pay for massage therapy and continue with physical therapy. Not knowing I had RSD, I'm so glad I didn't have the surgery. I've continued with massage therapy.
When I got RSD, my daughter was 16. Our family were very active, water skiing and snow skiing, traveling, tennis 5-6 days a week. aerobics. I had a couple of remissions, then injured in my hand while water skiing-was misdiagnosed with rheumatoid arthritis. My RA tests were negative, so I went back to Oregon to sports injury group. The hand specialist said RSD within 1 minute. sent to hospital for nuclear med tests that were positive, started physical therapy next day and Doc ordered a tens unit. Came back to Arizona and found neurologist and orthopedic hand Dr. One of the bests things the ortho did was desensitization. My hand is permanently paratially paralyzed, but at least got some use back and can cut my food, etc. moved other other hand, then full body. It was so hard on my daughter, she wanted me back, but not possible.She is 30 now and married to a wonderful person. She finished college two months before the wedding. She is a court reporter and has done RSD deposition. He is a commercial pilot. My husband has come a long way in understanding. I'm so very grateful-have caring friends that come from Oregon every year and new friends here and wonderful friends on this site.
My Dr. just finised a trial study on 200 people, and I'm on a new drug and sleeping 10 hours a night. Because of restorative sleep, I now have cut my pain and anxiety meds in half. I'm starting to be more active, driving again. Hope to travel a little. Feel like getting some of my life back.
Our monthly RSD support group meeting Saturday had a RN nurse speak on superfoods and high antioxidant foods. It was very good. I also attended the yearly RSDSA meeting here in Scottsdale.
For me, music, meditation, prayer, scented candles, reading, journaling, stretching are all helpful distraction. I also love to read. Epsom salt bathes, essential oils are all calming. massage therapy. swimming has kept me mobile.
There is a website rsdrx.com from Dr. Hooshmand who is now retired, but still has the website up. Under puzzles List, he has 146 questions from patients and his answers. Very good.
Please let me know how you are doing. I find this forum full of loving, kind, compassionate friends. Plus, we need each other. How old is your daughter. My daughter is grieving too. They moved in with us a few months ago and it's been wonderful. They sold there home, to put Lucas thru flight school and then he became a flight instructor then hired by the airlines and moved to Chicago for a year. They moved back and he commutes to Chicago. and our daughter still works for the same court reporting firm. They have a miniature min pin and we have a cat. The cat doesn't like the dog, and the dog wants to play with the cat. We have two floors, so they each get a floor. My cat sleeps with me, and I find so much comfort from both pets.
I like your phrases of this disease being so personal, and trying to center ourselves. Thank you for your insight.
Take care, and hope you are doing better. Your friend, loretta soft hugs

Hi Loretts,
Thanks for being so kind. The therapist appt went well. It was really just preliminary info but she seems like she will be good. She said she can help me with some coping skills. She actually said her husband had a spinal cord injury and she has had 4 RSD patients in the past, so she has some background working with chronic pain[You are so lucky to have one Dr. that has all those specialties.
hopeful
QUOTE=loretta;579991]I'm so sorry for your battle with insurance and second denial. I understand about being too tired to battle. I'm 61 and thinking of applying for disability. My Dr. said he would support me with the application.
I'm glad you are seeing a psychologist. How was the visit? Professional help for myself helped and continues to help. I went thru 2 plus years with a wonderful counselor when my parents died in the 70's & 80's. And 5 years ago, when I was diagnosed full body I found a wonderful psychiatrist, nuerologist, and pharmacologist. He has helped me so much and is also my pain management Dr.
In my case, I did have swelling as my first symptom after benign breast tumor and armpit tumor. When they withdrew fluid 3 times, it was green. Of course they didn't mention that meant infection -no antibioics and sent me off to rehab dr. for frozen shoulder and she oversaw my physical therapy. Surgeon couldn't get rid of me fast enough. Then after remission of a year, spread to other shoulder. Besides full body, I have internally too.
Thank you for your kind words, I have tears rolling down my face. Your kindness touched my heart. I feel your pain. I try to be supportive to everyone struggling as we all do. I'm thankful to have a supportive family. It did take time for that to happen.
If your psychologist isn't right for you, don't hesitate to change. I changed with my first experience. One visit and I knew he wasn't right for me. The second one was a jewel. and my first psychiatrist is a gem . I've been seeing him for 5 years.
Take care and hope you are feeling better soon. Your friend, loretta soft hugs[/QUOTE]

Dear hopeful,

I am so sorry to hear of your news. May I suggest that you reach out to Jim Broatch, the Executive Director of the RSDSA? He's an MSW by training and seems to know his way around close quarters. His email address is "Jim Broatch" <jwbroatch@rsds.org>.

Tell him an "inactive" attorney from LA in your CRPS Neurotalk forum suggested that you contact him. I'm not sure what he would suggest, but my first thoughts - besides doing everything possible to preserve your legal rights, such as they are, are along the lines of a PR initiative, with lots of outreach to media. As in, what issues could be more pertinent to the spirit of the moment? What you really need is to be connected to an interest group that's already in the thick of the fight, and viola, you're the new poster person!

Mike

Hi MIke,
Thanks for the info. I think I might e-mail him and tell him the situation. I don't know if I am equipped to be a poster child though.
Thanks again,
hopeful
I'll let you know if I talk to him.

Honestly, this is what the insurance company is waiting for to ware us down and toss in the towel as far as coverage.. they will win again at the risk of our wallets.. but sadly this is our health and future we are talking about.. I am sure those who make these decisions on whether to pay or not still go home to a "pain free evening" while we wrench in pain....24/7 for the rest of our lives.. I, too am drug free treatment as my system is sensitive to everything offered so far... and still work full time... it is a haul everyday...and I hate hearing that we hit walls on our possibilites of medical intervention... so not right..it just isn't!!!

Thanks,
I think I might be reqrouping again and going for the third appeal. My family really wants me to. You are right the people who sit on these panels probably do go home to pain free lifes. If they only knew. I understand what you mean by everyday is a haul. I hope we all find relief some day.
Thanks for the words of encouragement.
hopeful

I am so sorry to hear about your issues with BC and CRPS. I can't even get into see Dr S until 2011.

Hi,
I know how hard it is to get in to see Dr. S. put keep the appointment. I did get some relief from the ketamine treatment. He seems to think I would do better with in patient. (Blue Cross will never go for that)
But, I have met some people who have had remarkable results with the outpatient. He is a very caring man, just very busy. I really do believe he has dedicated his career trying to find a cure or at least pain relief for those of us who have RSD.
Good Luck and hang in there.
hopeful