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 and welcome,

I am so sorry your wife and you are going through this. Ketamine is a good option and one of the few that show good efficacy in studies. There are indeed different protocols and the one I am getting is an atypical outpatient plan. I started out with infusions every two weeks for 8 sessions, now at one a month for 3, then I will go just quarterly. It has made a big difference for me even without the more expected ten day outpatient plan.

One thing you might consider is how much ketamine is being given overall. I always feel the lowest dose that brings relief is a good place to start for any med. ketamine is a heavy medication and though quite safe does have side effects and can make the liver a bit unhappy.

My PM has made the analogy that the pain is like a ball of yarn and we are pulling out the thread a little each time. This is in keeping with how my infusions have gone. No one infusion has been earth shattering but the effects cumulatively are noticeable over time. One really important factor has been making sure all pain contributors that could be ameliorated were addressed. I had substantial scar tissue compounding my pain so I have had steroid injections for that. My latest improvement has been a result of dovetailing infusions and injections.

If your wife has anything treatable go after it. Nerve impingment from her fall may be found by a competent chiropractor or physiatrist. There may be something to be done that might help the ketamine work better by relieving some of her pain on a mechanical level.

I wish I had sage advise on whether to go in or outpatient, but I can only say to make the choice that she feels comfortable with. I hope that your wife finds relief soon.

Sending thoughts of healing and comfort,

Thank you, Littlepaw. That is very comforting and helpful. I have been reading your posts for quite some time and I am glad you are finally finding some relief through the ketamine treatments along with the others.

We have been seeing a physiatrist since her fall and subsequent hospitalization in April, and strangely, there are no physical abnormalities detectable on her imaging studies. EMGs also come back fine, although there is still noticeable difference between her CRPS-affected leg and her other leg. One strange thing is that she was diagnosed with small fiber neuropathy by way of a skin punch biopsy in August. At that time, she did not have any allodynia -- but since then, it has come on with a vengeance. We (and the doctors) don't seem to be able to parse out whether it truly is small fiber neuropathy or if it is a result of CRPS. In any event, the allodynia has been excruciating for her. Topical ketamine has helped some.

The doctor who performs the outpatient treatments actually suspects that she does not have CRPS at all, but think that she may have a tethered spinal cord (as a result of Ehlers-Danlos Syndrome) that was severely pulled during the fall, producing this pain. And he thinks that the EMGs set off the allodynia/small fiber neuropathy. We've been referred to a neurosurgeon for a consult, but he says that we need to treat the pain as CRPS pain in the meanwhile in case it is CRPS. The doctor who is advocating for the inpatient treatment disagrees, and thinks that it is definitely CRPS. In any case, I am just hoping we can find her some relief.

Thank you again for your thoughtful advice. Sending thoughts of healing and comfort back your way!

Regarding LDN: There are many variables to achieving success with LDN, first is time-it can take 6 months to a year to feel/see the effects. Second is dosage. Third is potency-some compounding pharmacies have dispensed LDN with little to no potency with the sad result that patients believe LDN did not work for them. Many veteran LDN users have found when they switched pharmacies LDN suddenly stopped working.

Based on what I have read I think the most effective LDN protocol is making LDN yourself from 50mil pills-some doctors will prescribe it this way if asked. It is easy to do and allows you considerable latitude with dosing. You can more easily start low and gradually increase the amount. If need be with this method you can also try a divided dose protocol. IMO LDN is easy to make and to take, but it requires some trial and tinkering.

I hope you have good luck with the ketamine.

Thanks so much, BioBased. Luckily, her LDN is compounded by Irmat in Manhattan, which I believe is the original LDN compounder and does it "right" based on everything I've read. Waiting with bated breath for her to notice the effects, but we know it will take some time. I will definitely do some further follow up. Thank you!

I am glad there has been a physiatrist on board. They definitely have an approach aimed at improving function and finding mechanical problems. It's good to see there was imaging and EMG also. But I am so sorry to read they think the allodynia came from that. Ugh.

I think the plan to treat as CRPS while searching for any other issues is a sound one. It is worth the effort to check everything out. Who wants to go through life with pain that might have been improved with a little more searching? And addressing the pain in the meantime keeps those pathways from developing as strongly.

The spinal cord tethering is an interesting idea and doesn't sound like a totally crazy one. Nerve root, the cord, etc are all prone to injury. If there is any non-invasive treatment that might be an option if there is cord swelling or adhesion I'd certainly look into it. Injections? active release therapy? oral steroids? yoga, nerve glides?

I am including a summary of work from Dr. Louise Oaklander on small fiber neuropathy findings in CRPS 1 patients. There is a very technical article on this but this is a quick report. Your wife's doc might be interested.
http://www.rsdhope.org/study-confirm...ps-type-i.html

Thanks for the well wishes. Please let us know what is decided and how it goes. There is always reason for hope. It sounds like your wife is getting great care and as we know, that really can make a difference.

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!

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.

hi nornirn. i am so sorr your wife has rsd. i have not tried ketamine so i can't offer any advice on it. i do hope though that whatever you and your wife decide to do will help manage her rsd pain better. sending healing thoughts both your way.

Thanks to all for your advice. She ultimately decided on the outpatient infusions because we felt more comfortable with the doctor. She just finished day 2 of the 10-day protocol. For the record, our insurance company (BCBS PPO) denied coverage of the inpatient treatment, which would have cost $50-60k out-of-pocket.