Summertime,

I don't have RSD, I am the husband of a wife who does/did have it.

I didn't start to have a clue until I saw her rocking back and forth and the sheer agony was undeniable. The more I learned, the more horrified I was at how bad RSD really is. I'm a fairly articulate guy and took on the role of 'advocate' for my wife. In doing so, I would try to explain to friends, and family what was happening. There was sympathy, but no true understanding. Even for myself, as much as I feel I've tuned in, I can't even begin to imagine what this pain must feel like for so many of you. I wish more than anything in my heart that I could make it go away.

I can tell you we did a couple of things.

First, we went the traditional route and traditional pain mgmt. doctors. She was on what was considered 'high dose' opiates. It wasn't even touching the pain for her, plus, he was a truly evil guy, basically told her it was her fault the meds weren't working.

Second, we found a Doctor near L.A. who is a pioneer in what I would consider extreme high dose opiates. He spent 5 days with my wife for a total of 40 hours (he charged us $100.00 for this by the way) and tried her on every pain med imaginable. She wound up being on extremely high doses of opiates (10-20x higher than what is considered high dose) and it made a significant difference. It brought her pain level from 9-10 (Oh my god, I don't know if I can go on like this) to a 5-7 with an occasional 8. It made a huge difference, but it wasn't enough. In addition, one of the medications, demerol, made the biggest difference for her, but it is rarely prescribed and it's very dangerous to use but for her, it made life manageable. Again, everyone responds differently.

After about a year of this, while she wasn't in the I want to die every second of her life stage, she was still effectively house bound daily and her quality of life was not good.

We made the decision to proceed with the Ketamine Coma Study in Mexico. It's killed us financially, but wow, I have my wife back. I would say she is 95-98% pain free and off all her pain meds. That's another benefit of the coma, it detoxes you off those meds while in the coma.

In truth, she will need boosters (infusions) on an outpatient basis every 2 weeks for (they say 3 months) 3-6 months or possibly longer.

Regardless, her Pain Mgmt. Doctor and heck, even our pharmacy, are in absolute amazement. In all of their years of doing this, they've never seen anything like it.

You might want to copy this down. It appears that many health insurance companies are now approving ketamine infusions using the following information.
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Note:
Many insurance companies in the USA request that the billing codes (CPT) reflect a “therapeutic” procedure rather than an “anesthetic” procedure performed by an anesthesiologist for the 4-hour ketamine infusion.

The CPT codes for 4-hour ketamine infusion by an anesthesiologist:

The 2008 Coders' Desk Reference published by the AMA lists the following CPT codes for "Therapeutic Intravenous Infusions"

90765 - first hour

90766- each additional hour.
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I hope this is helpful for some of you and again, all my love and my thoughts and prayers are with you.

Hi Summer,

I totally understand your frustrations, fears and confusion as I know everyone else here does too. It really is the nature of this disease. If I hear, "but you look so normal" one more time I could scream. Who decided what normal looks like for pain anyway?

A couple of weeks ago my PT told me a story about someone who was diagnosed with terminal cancer, he was told he only had a few months left to live. This person went on to give "the last lecture" to his students. Apparently it was a very well written and delivered lecture, although I have not read it yet. Anyway the media got a hold of this story and interviewed this young man and his wife, together they have 2 young children. The interviewer ask his wife "how do you deal with this, knowing that your husband is going to die and leave you alone to raise your children?"
Her reply has now become my new mantra!

She explained that when ever she thinks about anything that is negative and stressful all she can say to herself is "Not helpful" and that seems to help her get through the moment.

Now when ever I think about anything negative or stressful I simply say to myself "Not Helpful" its amazing it actually works, I'm finding this little mantra is really quite helpful.

MsL