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Originally Posted by Littlepaw
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!