Quote:
Originally Posted by rachel's daugther
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.
|
Hi Rachel's Daughter,
I have had 3 - 5 day inpatient ketamine infusions. I did mine each time with Daniel I. Richman, MD at the Hospital For Special Surgery and yes my insurance did cover most of the procedure each time including the boosters which I did with Dr. Schrwartzman in Philly. My RSD is upper extremey with some spread to my lower back and possible cervial area. The back area could be spread or from my original injury there's really no way to confirm where it came from. All I know is that I never had a back problem prior to my accident. I have had 3 spinal epidurals over the last 3 years with good results. The last one was the best and it has lasted a year and still going.
The ketamine infusions worked for me but I also have PN in the same area. I'm 1000 times better in the RSD area since the ketamine infusion but still deal with the PN. I did go back to work PT after the ketamine, was able to get back to a social life, and generally it just calmed down the whole RSD picture. I used to get migraines, no more I could go on and on but I'm sure you have read it all. The procedure was not easy. I didn't have problems with hallucinations I called it heavy dreaming but it was positive not crazy like some of the stories. But it does happen. My biggest problem was the nausea it was just non stop and I did even eat a morsel of food the whole 5 days. The facility was great the doctor better. I honestly would not do that procedure anywhere else or with anyone else.
Hope I answered your questions.
Keep us posted.
Gabbycakes