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Old 12-11-2015, 05:30 PM
newyorkmets newyorkmets is offline
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Join Date: Sep 2015
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8 yr Member
newyorkmets newyorkmets is offline
Junior Member
 
Join Date: Sep 2015
Posts: 35
8 yr Member
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Quote:
Originally Posted by nornirn View Post
Hi,

These boards, and all of your experiences, anecdotes, and stories having been tremendously moving and inspiring. There are no words to describe the strength of this community -- but I am in awe.

My wife was recently diagnosed with CRPS as a result of a fall she endured in April 2015. There has been some difference of opinion about whether it is Type I or Type II, but it has presented with severe sciatic pain for the past 7 months and her allodynia started around August/September, after which she was diagnosed with CRPS. Since then, she has had 4 lumbar sympathetic blocks which have not relieved her pain. The doctor has discontinued them. She has been on LDN since the end of October, also with no relief.

We live in New York City, and have access to good doctors and facilities. We have recently been referred to a doctor for inpatient ketamine treatment. At the same time, we sought the advice of another prominent CRPS treating physician who performs outpatient ketamine infusions.

The cost difference is astronomical ($600 for 10 days of outpatient treatments versus about $60,000 for inpatient treatments), and I am not yet sure what our insurance (BCBS PPO out of Massachusetts) will or won't cover. I assume, based on everything I've read, that it will at least be a fight -- but for some reason I am told it will be easier to have the inpatient procedure covered than the outpatient procedure. Go figure.

Here is my question: Assuming that money is no object, is there a substantial or even a marginal difference in the effectiveness of the inpatient versus outpatient protocols? The information out there seems to say that inpatient is better, but I've only come across this on a few CRPS/RSD websites and have seen it repeated around the forums. The doctor who performs the inpatient treatment says it is better. The doctor who performs the outpatient treatments says there is no difference. They are both leading doctors in the field and pioneers of the ketamine protocol... And I am not sure who to believe (except that one of the doctors was much more compassionate than the other and we are inclined to trust his opinion that there is no difference).

In any event, your input will be invaluable as we make our decision. Thanks so much for reading and considering this. My thoughts, prayers, and good vibes are with you all.
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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BioBased (12-11-2015), PurpleFoot721 (12-14-2015), RSD ME (12-15-2015)