Dear Sandy -

I'm thrilled that you have hade this level of relief. You speak of all of the travel this involves. From the experience of others, I've heard that the key factor in determining how well this "sets" is aviding as much stress as possible. I wonder, where travel is required, can you minimize stress by going at off-peak hours, taking a mid-day trains the day before the appoinments, etc?

As far as why they don't do this earlier, it's because the basic mindset among terating physicians, as incorporated into any number of "treatment guidelines," is to statrt with the most conservative treatments first, whivh is of course crazy: try applying that to heart attacks, strokes, cancer, etc. In constrast, from what I've heard, in Germany today, as soon as their is reasonable suspicion that someone has CRPS, they are immediately given a continous regional infusion of a cocktail contains ketamine for several days, when It is the most likely to do the most good. Why the disparity here? Probably because the insurance companies call the tune, and with no NIH funding for large scale trials, is hard to generate the "evidence" to tell them differently.

Which is so sad. ;(

May the next few weeks be easy for you.

Mike

Gotta love the US.....Why start the treatment with the most potential soonest when it might do the most good ?

I try not to dwell on it, but every now and then after an awful pain flare when I am confined to bed, I wonder my "What ifs"

What if the physiatrist employee health first sent me to took my complaints of burning pain seriously ?

What if they attempted to control my pain BEFORE sending me to PT to do strengthening exercises ?

What if they listened to my shrink who said he felt the depression was because of the pain, not the cause of the pain ?

At the end of the day, my 'what ifs' are ruminating and not helpful, so I try to avoid them.

IF the ketamine works and enough of us try it and have good results AND we argue for change with our healthcare system, MAYBE we can affect change for the next 'generation' of RSD'ers.........THAT would be a helpful 'what if'

I SOOO hear you..how many years of my life and my family's have been wasted? I have 2 teenagers. What if they had had a "real" mom these last few years? Neither one had a good year academically in school last year or the year before that. Would it be different if I hadn't been sick? How much of a difference could I have made in their lives if I was on the ball?

I hope to be getting my life back with these treatments. Right now I am totally wiped out, and trying to get caught up with domestic chores before heading back to NJ for my first round of 2-day boosters. I'll be flying back and forth weekly for the next month from Boston to Atlantic City. My parents take care of me while I am in NJ getting the infusions.

We desperately need more ketamine treatment centers and the insurance industry to come on board. My parents helped me out by agreeing to pay cash for my treatments, since Dr. Getson's office policy is not to accept any insurance. (I try not to make myself crazy with thoughts that he is just after the cash..") After the run around I have received from United Healthcare, I can almost understand why. I have spent HOURS on the phone, attempting to straighten out my claim, so that when the bills are submitted my parents are properly reimbursed. I arranged for my treatments to be considered "In Network," since there is no ketamine infusion therapy for RSD offered in the RI area. That way I am only liable for my deductible. But when I called to check my claim yesterday, I needed to speak to about 6 different people in various depts just to get that part lined up with the medical claim itself. And the infsuions had been authorized as just a single event, taking place in the month of March!! It took over 2 hours to clean up my claim. This is on top of the hours I spent appealing their denial before leaving for my treatments!!

This claim is actually a WC claim, but WC has denied everything and it is still in the courts. Approval, which is expected, could take another few months or longer.

I ditto you on all of the what if's - the buring pain (with the ortho). Why did I agree to a 2nd surgery? My surgeon was the best of the best, I thought he knew what he was doing!! That was almost 3 years ago, a year after the first surgery. The horrific PT, and the ICE....ughhhh. I had never heard of RSD until he mentioned it in June of 2008. By then it was too late.

I just want my nightmare to end....and sincerely hope the ketamine continues to work...(I am NOT 100%...but I am better than before, and intend to continue to try to improve).

Thanks Finz...and I wish you the best. Where are you from? You can obtain a list of the ketamine providers from Jim Broatch at the RSDSA. That is how I started my search.

XOXOX Sandy

Sandy, my friend... To all of this I say UGH!!!!!!!!!!!!!!!!!!!!!!!! I won't give up my fight with my insurance carrier, as I promised you but OMG... This is like moving a mountain or 10!...... If I never see my way thru this red denial tape..my dear, Sandy I am so happy you went forward and who knows..one day we will lift you up in front to the ins. world and say ..see this is what we need..Help to be healthy.. make it possible and conventent... In the mean time..OMG!

Love, Kathy

I sincerely wish you the best of luck in your battles... Ketamine is an "Accepted" treatment for RSD, and has a long history of being approved by many insurance carriers (particularly Empire Blue and United Healthcare). In the long run I think it is cheaper than all the meds and other treatments that the insurance companies routinely approve, certainly much cheaper to society as a whole if many of us could continue to work...

XOXOX Sandy

I'm from Mass, Sandy

I haven't started my possible eventual plea for ketamine.

I had been having a series of SGB's at my local pain clinic which have helped with the numbess, weakness, and aching in my left arm as well as the touch sensitivity. They did not touch the burning golf ball that I feel just to the left of T1-T2. The pain clinic just told me they don't think there is much else they can do, he thinks I need to figure out if this is part of my TOS and I need surgery for that OR that I have nerve root involvement even though that doesn't show on the MRI............so, we need to figure all of that out first. If only my neurologist worked more than 1 to 2 days a week and would return my calls, he's pseudo retired ! His wife/nurse says they are booking into August, but hasn't booked me because she wants me to talk to him about scheduling my eMG...she keeps saying he'll call me back, but it doesn't happen !

Can someone clarify whether or not insurance would pay for ketamine infusion? I know a local doc who can do the outpatient ketamine infusion but he told me insurance does not cover. I have tried different nerve blocks over the years and i think my RSD had spread all over me. While my pain is still manageable at this time, i would like to explore the ketamine infusion option.