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

Sandy...

My friend, you are in my prayers..I know this has been a long time coming..it seems we are being backed straight into a corner..one hand life with the trail of Ketamine or the other hand a sad future with rsd... Try not to look back and think of what it took to get there..just relish in the fact that you have made head way and put your faith into the fact that it has to work!! You are strong and a fighter..I know you will do well as you style is to keep pushing forward never to sway..I will keep you in my prayers..you are an inspiration to us all...

Love ya! Kathy

Sandy
What wonderfull news that you bring to the board,,I am so happy for you,,May the Lord be glorified by our praises,,,,I hope that when you get healed and are doing cartwheels that you dont forget us,,What wonderfull news,,,Thank you Lord

Dear Bobber,

Low dose ketamine infusions are a treatment - not a cure - I hope to be among the 70-80% that get relief from their pain with them. To my knowledge, the only people that have been "cured" of RSD with ketamine have been with the ketamine coma, and there have only been a few at that.

Thanks so much for your kind words.

I have been sick for 3 and a half years, diagnosed since June 2008. By the time I finish the initial low dose ketamine protocol with Getson's office it will be 2 years from the date of my diagnosis. I've exhausted just about every other treatment for RSD out there except for the SCS (for which I'm not deemed eligible) and the pain pump (which I will definitely consider at a later date if ketamine doesn't work).

XOXOX Sandy

Sandy
I had a good feeling go thru me when I read your post,,I pray that your relief is great,,,And Im so sadened to hear of your pain,,But I agree with KS,,I have a gut feeling that this is your time. And the SCS eligibilty denial ,may be a blessing in disguise,[alot of cases it promotes spread],and if I had a choice,it would be a pain pump.But my first choice would be the ketamine,,I do pray that you can get your pain level under control so you can enjoy working out and lead a better painless life,,,My prayers are going up for a successfull treatment for you,,,This is estatic news

Sandy!!
I was wondering when you would post more info on your ketamine pursuit!
The plan is reaching fruition, with even a specific date!!!
I am beyond happy for you , as you have worked so hard, and have been so diligent in advocating for yourself in the midst of your pain (and all the while, being there for all of us!)
Everything will fall into place ! Keep you face to the sun and let the brightness of the initial good news prepare you for the next step in reducing your pain and getting on with your life!!!

Hugs from Hope4thebest

Awesome, Awesome, Awesome NEWS!!!!!

Sandy

I received a letter from United Healthcare that states that they have approved the physician services for my requested treatments -- when I called and asked about the infusion services they stated that they were also included in the approval!!

I have asked that a revised approval letter be sent to my doctor and to me that specifically states that ALL the services that were requested in the pre-authorization are covered. the adjuster promised that it would be in the mail today.

Because the ketamine infusions are not available "in network," I have already requested and been approved for the consideration of the infusions as in network. So I am only liable for my deductible, not 80%, which is what is charged when you go out of network on my plan.

I just hope and pray that the insurance company plays fair when it is time to reimburse us. My parents are going to pay in advance for me, saving me and my husband from having to liquidate a chunk of our retirement account or run up a home equity loan on our house when we still have 2 kids to educate.

The approval letter states that my appeal was reviewed by a physician that was not involved in the original determination. I have to admit that, IMHO, I think that my appeal letter could have been stronger. Getson's office suggested that, while ketamine may be deemed experimental, I state that ketamine is an ACCEPTED treatment for RSD/CRPS (Diag codes 337.21 and 337.22). In addition, I referred to the recent successful double blind studies by Dr. S and The Netherlands. I also mentioned that United Healthcare has a history of providing coverage for other Rhode Islanders with RSD that are receiving ketamine infusions (after all - if they can pay for THEM, why were they turning ME down???).

Thanks to all of you that gave me advice on my UHC thread - it was really helpful!! And to Kathy and anyone else that is fighting for approval - KEEP FIGHTING! Try the "ACCEPTED" terminology that Getson gave me above, and try to find out if there are any other recipients of the coverage already in your group. Perhaps that will help you.

XOXOX Sandy

Hello Sandy...

Great news!!!!!!!!!!! Are you excited?? Well as excited as you can be for being jammed with Ketamine but still!! Thank you for all of the useful information and I promise you, my friend..I will use exactly that to plea my case on the 29th..I do however think I see the difference in our pleas...I am being asked to have the 5 day sleep-moderate dose rather you are having the 10 day -low dose out patient treatment... Silly me... that just occured to me... I asked about having the 10 day infusions and they felt I would not benefit from it... least not as well as, I need to have the moderate juice..I will keep trying tho so we could be roomies.. I'll share my ipod with you while we get the juice..we can't eat in there but they didn't say we couldn't laugh...I am thrilled for you..very thrilled..I can't wait to see how this treatment fares for you!!I will pray that you have fantastic results.... just fantastic!!
Thanks again for thinkng of me!!!

Hugz, Kathy

Ughh - I forgot - of course there is a big price difference since the ICU is used for the "5 day," which can really end up being longer than that since I think they begin counting the 5 days when you've actually titrated up to the highest dose of ketamine that they intend to use. I will be thinking of you on the 29th...

Take care, XOXOX Sandy