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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Old 04-18-2011, 10:37 PM #1
rachel's daugther rachel's daugther is offline
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Join Date: Jun 2010
Location: Chicago
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rachel's daugther rachel's daugther is offline
Junior Member
 
Join Date: Jun 2010
Location: Chicago
Posts: 54
10 yr Member
Default Surprising news about my 17 year old with RSD

In just not sure what to think these days, husband isn’t much support, so I’m looking to everyone on this site for some insight of what to do….

In Mid March we had just finished my 17 year old daughter’s first 3 day ketamine infusion with little results. She found relief for 12 hours each day in her left arm and left hip, but no relief in her left leg. She handled the infusions quite well. She was asleep for most of the time, woke up a little confused and out of it, but recovered quickly. The biggest side effect was exhaustion.

Two weeks later we left for vacation, warm weather in Florida did her good. She was walking about 2 miles a day, enjoying the weather and being more mobile. We weren’t sure if this was from the weather or the ketamine, either way we were happy she was much more functional.

Before we left on vacation she had a MRI, she was in a lot of pain right after her ketamine treatments and our regular doc was not in so we saw someone else, he changed her meds but was surprised she never did an MRI on her spine so he ordered one. We really didn’t think anything of it; she has so many tests that come up normal that we just thought this would be the same.

When we got back almost 4 weeks after ketamine and 3 weeks MRI we finally saw our regular Doctor to discuss Ketamine and MRI. I wanted to try Ketamine again and do the 5 day in hospital treatment following Dr. S in Philly protocol. He said does not do the 5 day in hospital treatment but was not against me doing it. If anyone has done this treatment can you please let me know where you went? We talked in detail about the commitment of weaning off meds (Dr. S protocol) and if insurance would cover it. Did insurance cover any one who had the treatment?

I almost forgot to ask about the MRI, but did. To both my Doctor and my surprise the finding was not good. My 17 year old has a disc herniation causing spinal stenosis at the L4-L5 level. Plus disc protrusion at the L5-S1 level without spinal or neural stenoisis. Is this normal? We both just can’t believe her being so young this would happen. Anyway, he has scheduled an epidural infusion (steroids) for end of April. He does not believe it will make a difference, but he wants to be sure.

Has anyone had this happen to them and what was the outcome? She has complained of lower back pain but she said it wasn’t even close to the RSD pain so never paid much attention to it. She complained once about RSD pain in her lower back and the doc gave her muscle relaxers believing it was hyper nerves and not RSD. That did seem to help her.

I am nervous about doing the infusions because of spread, but also hopeful that this may help her with her pain. She keeps saying if she could just get back to a 6 she would have a life. With storms and up and down weather she is progressing to pre vacation levels.

Any insight would be greatly appreciated.
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