[SandyRI]

I have finally arrived home for a 4 day break between the 10 days of infusions and the start of the 2 day a week for a month protocol. Ketamine works extremely well for me so far!!! I am able to tolerate noise again with my ears!! I don't like it, but I can take it, which is a real change from how I was. I can wear a bra strap on my shoulder for the first time since my injury (11/06). My head no longer hurts terribly all the time, although it does ache a bit. I have one area of lingering pain in the back on the right in the occipital area, but that was always my worst spot. The pain in my legs, my hips, my arm, and my neck is gone. My appetite is spotty and I have lost some weight - the first weekend I had a lot of trouble with my stomach which may have been because I tapered too quickly off of Fentanyl.

Since it's only been a few days, it is too soon to tell whether this treatment is going to hold for a long time for me. I still have a month of 2 day per week treatments, and a month of one day per week treatments to go. The hardest part of all is the travel - I live several hundred miles away (in RI) from where I am being treated, so I am staying with my parents while getting the treatments. I need to get from RI to Jersey (fly or drive), then everyday my father drives me an hour and fifteen minutes each way to the doctor's office from their beach house at the Jersey shore. I owe my parents more than I can ever repay them!!

It was much more difficult than I anticipated to be away from my family and friends for the first 2 weeks...I am glad that part is over!

I have tried just about every other treatment for my RSD, and nothing else was nearly as effective as ketamine!! As most of you know, I am still fighting to get WC to approve these treatments. And even though United Healthcare has approved them, I need to pay Dr. Getson and request reimbursement from UHC because his office has assured me that it will not be anyhwere near what they require for payment. In the meantime, my parents have taken care of the payment end for me. The cost per day at his office in Marlton, NJ is between $1250-1500 to get better, in case anyone is wondering....

In the end for me, it came down to research - I had to find out who the docs were that had ketamine, (from Jim Broatch at the RSDSA) - paperwork preparation - I had to put together a package for each of them that I wanted to see, - and $$. Because both WC and my private insurance company came up short I needed to find financing for my ketamine treatments in order to get them.

What makes the least amount of sense to me is that the time and cost of the other treatments I have endured- 7 SGB, 1 LB, and 7 lidocaine infusions combined likely exceeds that of the ketamine. And they were not nearly as effective. Why bother? I've been diagnosed since June of 2008 and we've been kicking around all these different treatments, instead of jumping right into the MOST effective treatment first. Dumb, dumb, dumb....

Love and peace, Sandy

[keep smilin]

Originally Posted by SandyRI

I have finally arrived home for a 4 day break between the 10 days of infusions and the start of the 2 day a week for a month protocol.
Ketamine works extremely well for me so far. I am able to tolerate noise again with my ears!! I don't like it, but I can take it, which is a real change from how I was. I can wear a bra strap on my shoulder for the first time since my injury (11/06). My head no longer hurts terribly all the time, although it does ache a bit. I have one area of lingering pain in the back on the right in the occipital area, but that was always my worst spot. The pain in my legs, my hips, my arm, and my neck is gone. My appetite is spotty and I have lost some weight - the first weekend I had a lot of trouble with my stomach which may have been because I tapered too quickly off of Fentanyl.

Since it's only been a few days, it is too soon to tell whether this treatment is going to hold for a long time for me. I still have a month of 2 day per week treatments, and a month of one day per week treatments to go. The hardest part of all is the travel - I live several hundred miles away (in RI) from where I am being treated, so I am staying with my parents while getting the treatments. I need to get from RI to Jersey (fly or drive), then everyday my father drives me an hour and fifteen minutes each way to the doctor's office from their beach house at the Jersey shore. I owe my parents more than I can ever repay them!!

It was much more difficult than I anticipated to be away from my family and friends for the first 2 weeks...I am glad that part is over!

I have tried just about every other treatment for my RSD, and nothing else was nearly as effective as ketamine!! As most of you know, I am still fighting to get WC to approve these treatments. And even though United Healthcare has approved them, I need to pay Dr. Getson and request reimbursement from UHC because his office has assured me that it will not be anyhwere near what they require for payment. In the meantime, my parents have taken care of the payment end for me. The cost per day at his office in Marlton, NJ is between $1250-1500 to get better, in case anyone is wondering....

In the end for me, it came down to research - I had to find out who the docs were that had ketamine, (from Jim Broatch at the RSDSA) - paperwork preparation - I had to put together a package for each of them that I wanted to see, - and $$. Because both WC and my private insurance company came up short I needed to find financing for my ketamine treatments in order to get them.

Love and peace, Sandy

Sandy..It is so darn wonderful to hear from you.. WELCOME BACK..and thank you for keeping us updated... You are a true inspiration!!! I am so happy you are now past your initial long treamtent with Fantastic results.... I pray that you will now achieve a very long lasting pain relief ... I could not be happier for you..Please take some time now to rest and allow yoursef to enjoy the moments of lesser, a great deal lesser pain...Plz. keep us updated often on your results..I wish you many many years of pain relief stability!!

Bless you my friend!!

Hugz, Kathy

[SandyRI]

Dear Kathy,

Thanks for the warm welcome!! I am praying that your insurance company will give you the go ahead that you deserve - If you can't get the approval for the 5 day inpatient, UHC WILL approve the 10 day outpatient protocol, and Dr. S will ACCEPT it (unlike Getson, who has an office setting). Keep fighting!!

Sandy

Originally Posted by keep smilin

Sandy..It is so darn wonderful to hear from you.. WELCOME BACK..and thank you for keeping us updated... You are a true inspiration!!! I am so happy you are now past your initial long treamtent with Fantastic results.... I pray that you will now achieve a very long lasting pain relief ... I could not be happier for you..Please take some time now to rest and allow yoursef to enjoy the moments of lesser, a great deal lesser pain...Plz. keep us updated often on your results..I wish you many many years of pain relief stability!!

Bless you my friend!!

Hugz, Kathy

[hope4thebest]

Hi Sandy!
I have been thinking about you and was happy and relieved to read a good and positive outcome from your second week of treatments!
After all this travail and experimenting with other meds and modalities, thank God you have some some relief from you terrible pain!
Hopefully the remaining treatments will really knock out any residual pain! It is ridiucous to have to go through so much effort and battle with the insurance to get treatment that actually works!! So illogical!
Enjoy the respite with your friends and family, and special blessings to your parents for being there for you.
Hugs from Hope4thebest xoxoxox

[Lisa in Ohio]

Bless you Sandy for the great, upbeat news. I am so happy for you, and hope that you continue to improve. Please enjoy this time to its fullest and thank you for being such a great inspiration to all of us. Thank God for parents, I would not be able to manage without mine. Best of luck in your battle with WC. Lisa

[gabbycakes]

Originally Posted by Lisa in Ohio

Bless you Sandy for the great, upbeat news. I am so happy for you, and hope that you continue to improve. Please enjoy this time to its fullest and thank you for being such a great inspiration to all of us. Thank God for parents, I would not be able to manage without mine. Best of luck in your battle with WC. Lisa

Hi Sandy,

I am so, so, so happy for you!

Get some rest and I will speak with you soon.

Gabbycakes

[fmichael]

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

[finz]

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'

[SandyRI]

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

Originally Posted by finz

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'

[keep smilin]

Originally Posted by SandyRI

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