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.

I don't know anything about normal, but I have deterioration in that area and I find a lidoderm patch helpful. But the big thing is footwear. Proper alignment of my hips and arch support made such a difference in my back pain. Now that I don't wear shoes, when my RSD is not so high I notice how bad my back hurts.

It is discouraging to go up and down on the pain levels. Never know what to expect is part of the stress.

I am relentlessly searching on my own for things to make my way better pain wise, I know the value in love of the time you spend searching for answers for your daughter.

praying for wisdom,
pat e

Four years ago an MRI of my spine came up abnormal and I was told my pain was from stenosis (this was before I was diagnosed with CRPS). The recommended treatment was steroid epidurals and I tried two but did not have any relief from the injection. However, I tried the out patient ketamine and found each treatment gave me 3-4 days of solid relief so maybe the epidural treatment will work for your daughter especially with a buldging disc.
Sarah

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

Are you able to access facebook? There are some ketamine success stories on the ketamine klub page. You can also search RSD and ketamine and come up with some more hits, you may find several more individuals like Gabby to get some feedback from.

I did the 10 day outpatient protocol - I started exactly one year ago yesterday. And since then I have had 38 low dose ketamine infusions. It changed my life, 2 months after I started the treatments I was able to return to work full time. I am nowhere near perfect. But so much better than I was before ketamine. Ketamine has truly given me me my life back.

I started with Dr. Getson in Marlton, NJ, who followed Dr. S's 10 day protocol. I am now with a local doctor, Dr. Chopra, in RI. My treatments are scheduled every 4 weeks for 2 days in a row, 200 mgs each, the infusions run for 4 hours.

Find the most experienced, compassionate doctor and staff that you can for your daughter. The best reports that I have in the last several years for the inpatient treatments have been about the HSS in NYC and Dr. Richman.

Good luck and keep us posted. XOXOX Sandy