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Originally Posted by newyorkmets
Hi nornirn,
I am sorry to hear about your wife - and am glad you are by her side. I live in New York City too and have been struggling with CRPS for a couple years now. If you don't mind sharing, what hospitals have you tried and where are you currently at now? I've only had lumbar sympathetic blocks and am curious to know if the option of a spinal cord stimulator has ever come up like it has with me. Unfortunately, my pain management doctor doesn't have a history of prescribing low dose naltrexone so I'm currently on no real pain medication after coming off Lyrica. I really wish I could get ketamine infusions but have not had that option as of yet. Which facilities are you looking to get this ketamine done? I'm relatively young and still in my teen years so my treatment has been a little different but has there been any one doctor who you would reccomend or more importantly, someone who would give me the two options of LDN and infusions? I'm happy with the current care I have and wouldn't mind exchanging places if you're willing. You definitely have some tough decisions coming up and I'll be praying for your clarity. Thank you!
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Hi newyorkmets,
Thanks for the kind words. I am so sorry to hear that you're going through all of this, too. My wife is 30, so I'm sure you're experiencing some similar feelings experiencing this at your age. I'd really like to see a CRPS support group start in the city... I, for one, really want to do my part to step up the awareness and advocacy campaign to get more needed research done on treatments. I also want to take insurance companies to task over not reimbursing for some of these so-called "investigational" procedures (i.e., the ones that seem to work).
We have mainly used NY Presbyterian/Weill Cornell for my wife's treatment. That's where our physiatrist (a truly amazing doctor) is based. Our main pain management doctor (who did the lumbar sympathetic blocks and prescribed the LDN) is also there, as is our neurologist (who specializes in polyneuropathies). The idea of a spinal cord stimulator has been mentioned more or less as a last resort. Based on our reading and understanding of the risk/reward involved, we prefer to avoid it... Of course, things don't always go as planned, but I am hoping that she won't eventually need one.
Curious, why did you go off of the Lyrica? That seems to be the only drug that is really doing anything in terms of the pain for my wife. She doesn't like the side effects but has already tried gabapentin and Topamax and thinks they're worse. She definitely notices a difference when she misses a dose of Lyrica, so she is staying on it (with the LDN) for now.
We are still trying to evaluate whether to get the ketamine infusions as an inpatient in New York (at HSS on the Upper East Side) or as an outpatient, most likely in Rhode Island. The 5-day inpatient infusion is prohibitively expensive if insurance doesn't cover it (I am told about $60k), whereas the outpatient infusions are $600/day for 10 days. In both cases, outpatient boosters will be necessary. I am bracing to fight with the insurance company to get it covered.
I'm happy to exchange names of doctors/facilities/overall thoughts if you want to PM me. I'm sorry you've been dealing with this for a few years now. This has only been 7 months for us and it's been exhausting for both of us in different ways -- and she only received the official diagnosis around September. I'm sure you've ready everything published on the internet about CRPS at this point, but I am very optimistic that you will go into remission given that you are still in your teens. Here's hoping and praying... Happy to be of any assistance I can in helping you navigate where to go next (my one skill in all of this has been research and persistence...). All my best.