Hi Sandy,
You are right I was very lucky to have gotten in for ketamine treatments as early as I did. I think the first 2 weeks worth worked much better than the boosters. I do think that if I had the ability to have them more often or go in hospital and have the 5 day treatment I would be much better. I did just hear that new research is coming out that will leave the insurance companies hard pressed to not pay. Dr. Schwartzman is getting ready to publish a research study and I was told me it proves they work. I hope the insurance company decides they will cover inpatient.
Thanks for the infor. I am trying to gather as much information as I can for my next appt.
Hopeful
Quote:
Originally Posted by SandyRI
Hi Hopeful,
I have had 7 stellate ganglion nerve blocks (SGB) for my upper right extremity, one lumbar block for my right leg and 3 lidocaine infusions. Its hard to believe when I write that that I've been sick that long! I was diagnosed June 2008 and had my first nerve block on Christmas Eve 2008. I go to Dr. Joseph Reyes at Caritas St. Elizabeth's (affiliated with Tufts) in Boston for all my care, he is awesome. I wish he had ketamine, it will be really hard for me to have another team of doctors take care of me, because his are just so great. The "tone" is set at the top and when the the guy in charge is sincere, caring, thorough, top-notch, etc that is how his team learns to operate.
Anyway - the SGBs worked really well at first, but didn't last long. Overall, the series of blocks allowed me to continue working for about six months. After the first 2 blocks I could actually lie down and sleep on the back of my head, which is the source of my worst RSD pain. That was just great! Because they also work on central nervous system they can help to reduce your other symptoms as well over time. I remember driving to work one morning and almost feeling like the old me.
It's really important, IMHO, to have the blocks done by a REALLY good practioner who knows what they are doing and hits the "spot." Nerve blocks are risky, especially the SGB which is done in the cervical spine and go into the front of your neck. I wouldn't let anyone in RI touch me for one of those.
I started lidocaine infusions in mid July of 2009. I just had my third a week and a half ago. The first 2 worked really well on my right leg pain, which is where my RSD spread last spring. I also had a lumbar block on Sept 1st that helped, but I think the lidocaine worked really well, too. The infusions make you tired so that you sleep better. I thought the first 2 impacted me much more than the 3rd one did. I wish the infusions had worked on my head pain, but they didn't, at least not that I could tell. They are very relaxing and lidocaine isn't risky (like ketamine), except that during the 2nd infusion I did have a reaction when the drip rate was turned up too high. I was fine once they turned it back down.
If I didn't answer all your questions please let me know. I am really surprised that you would have ketamine infusions done PRIOR to trying these other modalities first. Wow. You're lucky because ketamine has a much higher success rate.
I saw Dr. Ronny Hertz at St. Luke's on Friday and will be starting ketamine there in a few months. In his opinion the FDA will soon approve ketamine for RSD and it will become much more available. When that happens your insurance company should back off.
Take care, XOXOX Sandy
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