Quote:
Originally Posted by hopeful
Hello,
I did have the 2 week 5 day ketamine treatments with Dr. Schwartzman at Drexel. I have had 3 sets of boosters and am scheduled for another in Nov. I was so scared of having them and they were not as bad as I thought. They give you meds to help with the hallucinations and want you to take Ativan before bed and in the morning while you are having the treatments. I did have some mild hallucinations. Nothing really bad.
I can say that I got some relief. I don't know how to describe what was happening to my arms. I said it felt like is was itchy. I use to scratch until I was brusied. I would wear lidocaine patches to bed. That has stopped. The first 2 week treatments gave me quite a bit of relief but it has not put me into remission. My arms symptoms have not returned though so that is quite a relief. Dr. S. thinks I would be a better canidate for the 5 day in hospital high dose treatment.
I do have a PPO (Blue Cross) and they are now refusing to pay. They would only pay for the outpatient but now say that the treatments are experimental/investigative and want the money back they paid for the first so many treatments.
I paid out of pocket for the last boosters. I have a hearing for my 2nd appeal on 10/8. I am hoping I win the appeal. I wish I could get them to pay for the inpatient treatments. I think at this point I would try anything to get rid of this pain.
The staff in the infusion room at Hahnemann were great. They really give you the best of care. I wish I could say I came away pain free but that is not true. However, I have met many patients at the infusion room that have had remarkable results.
Good Luck and hope they work if you decide to have them.
I have a question for everyone. Have any of you had a nerve block or Lidocaine treatments. Are the Lidocaine treatments infusions? I have an appt with Dr. S. in Oct to discuss a nerve block I would like to know if there are any other treatments I should be prepared to ask him questions about. I need something to stop the burning any suggestions?
Thanks!
Hopeful
|
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