Originally Posted by SandyRI

Hi guys - It seems like it has been forever that I have been waiting - I got my call today from Dr. Getson's office that I have (finally!) made it onto their schedule to start 10 day low dose ketamine infusions on Monday, April 16th.

Their protocol requires that I commit to a schedule that starts at 10 days, (5 days, off for a weekend, 5 days), then 2 days a week for a month, then 1 day a week for a month, then approximately once a month for at least a year and boosters as needed for the rest of my life.

I can only hope and pray that this works. I've tried almost everything else without success, and because I have waited so long to get these infusions, I have no time to implement a "Plan B."

I MUST return to my job this June or I will lose it, and my benefits. I will barely be done the once a week infusions when I start back.

Because I haven't used my right arm or shoulder in months, it has really atrophied. Talk about close timing!! I am going to have to start a major work out plan, if the ketamine works, just to be able to look normal in my work suits, because my body is "crooked." I am also really weak. My last PT appt was in Sept or Oct. of last year. I never use my arms for anything strenuous because it gives me a headache.

For anyone who is contemplating making an appt with Getson for infusions, my timeline worked out as follows: I mailed my paperwork to Getson in early October. My appt with him was on December 3rd, 2 months later. And my infusions were scheduled roughly 4 and a half months after that. So the whole process took a little over 6 months (a bit longer than I anticipated). And that's just to BEGIN the infusions, which take another 10 weeks (if they are successful).

I am still waiting for approval from the RI WC Courts for the infusions. I received some paperwork from United Healthcare, which I thought indicated approval for the infusions, but it really may be limited to a portion of the bill. Getson's office staff has indicated that they will make a phone call for me "this time only" to check on what United is willing to pay for.....very frustrating.

Being sick with RSD is hard - and getting treatment is even harder. Especially when WC and United Health are involved. And ketamine docs - there are so few of them, getting in to see one is so incredbly difficult and takes SOOOOO long.

I just hope it works...it will make my efforts (and those of my family) worthwhile.

XOXOX Sandy