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RSD/CRPS

Brain & Nervous System | Last Active: Apr 26, 2023 | Replies (118)

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@rwinney

Yes, Florida was very nice to spend 3 weeks at!

Next year, when your daughter is 18, you'll have a better handle on pain control and whether or not things like meds, injections or implants continue to be beneficial.

I hope she finds ways to manage her pain enough to keep up with school again this year. It all must be quite stressfull. You mentioned ketamine infusions are helping to provide some relief. How long has she been receiving them? Has she experienced side effects?

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Replies to "Yes, Florida was very nice to spend 3 weeks at! Next year, when your daughter is..."

Sorry am slow responding-- so she was diagnosed in March 2021, and after failed meds and ganglion stellate block, we started ketamine in April 2021-- 3 weeks twice a week to begin, and now a booster treatment about every 10 weeks.. it's a rough few days after the treatments (completely exhausted and can't do anything)- but then the pain starts to lower slowly and can get as low as 2 or 3- which is great... Before starting these treatments, she was at an 8 most days-- As far as side effects- the actual ketamine is out of her system, from what I understand, within 12 hours-- but yes she is lethargic for a few days- but that's it.
Thanks for your comments regarding school-- even though she's a senior, we are considering helping her study for a GED so that then she can just do community college on her own terms-- as a full high school load has been so very stressful and increased depression/anxiety and she was barely able to pass last year. Concentrating and focusing for that many hours under pressure is just making things worse.. On a brighter note, I think her high school is going to allow her to continue in marching band-- the band director actually made her a special harness to allow her to continue playing the mellophone (her diagnoses are all in the left shoulder/arm/neck)-- so so thankful-- it's basically the last 'sport' she can participate in... thank you again for all of the great info!