Ketamine/RSD
 

When I read through the posts I see various mentions of ketamine. Can we get one thread going of everyone who has had ketamine and what their experience was like?

My 19 yr old daughter has had ketamine, both inpatient and out and is painfree right now. She still needs boosters but we are so thankful after 2 years of unrelenting pain that she is getting relief.

Liz

Hi Liz,

That is so wonderful to hear. I have also had amazing results with ketamine. I did a 5 day in patient and have followed it with outpatient boosters since November. It truly saved my life. We do have a lot of threads on ketamine just not one "stickied" one which really is a great idea. Usually when someone comes asking questions, we all just jump in and answer but I do think one main thread would be great and is a question for the admins.

I'm truly so happy for your daughter. There was a girl the same age receiving outpatient infusions during my last treatment and I couldn't get my mind off her. My oldest son is 17 and I can't imagine him having to go through the pain I've lived with for 10 years. It's just extra painful to see in someone so young. May I ask where she is being treated?

Dawn
:hug:

She does her boosters in DC but the inpatient doc has asked me not to post yet while the hospital gets their protocols in order and gets all their ducks in a row. They know they will be bombarded once it gets out.

Absence of sufficient insurance coverage -k treatments
 

I started the 10 day protocol last April 19, and in less than a year I have had 38 infusions (just had 37 & 38 yesterday and today). it took many months of fighting, but I finally got approval from RI WC Court for the treatments. Two months after I started them I returned to work full-time.

It just upsets me to no end that most of my RSD friends cannot avail themselves of this treatment because of the cost and the fact that their insurance companies, or Medicare, doesn't cover it. or if they do cover it, they pay a fraction of what the docs want to be paid for the treatments, and the balance due from the patient is outrageous (for instance, in RI for United Healthcare, it's $1500!). Ketamine has been amazingly effective for me -it gave me back most of my life, yet insurance refuses to pay a reasonable price for it. But insurance did pay $2000 for each of my lidocaine infusions without a hassle. and lidocaine infusions weren't nearly as effective.

So that's my beef. It makes docs look greedy when they want $2000 per infusion. And insurance companies are fighting like crazy not to cover this for us, even though it's been demonstrated to work better than any other treatment, and we are getting our lives back. My doc in RI is not going to lower his price, so he has few patients - only what the RI Workers Comp Court hands him. I know of MANY who suffer, but could NEVER afford to pay $1500-$2000 (depending on insurance) for EACH infusion for the REST of their life!! that's crazy money...

We need things to change, I am tired of watching others suffer...

that's my rant for today!! XOXOX. Sandy

The FDA has approved ketamine for breakthrough pain. It is getting more and more difficult for insurance companies to deny this. If you are turned down I would most definitely follow up with your appealS. yes, appeals, plural. You get more than one. This is one fight worth fighting.

I would also suggest buying Barby Ingle's books which deal with ketamine and all the factors involved with it. She is a wealth of information and I know we would not have come as far without her guidance.

It's difficult but they do. I just paid $2500 out of pocket for my 5 day out patient treatment as the rate has gone up to $500 per day. For my in patient treatment, my insurance (Aetna) fully covered my hospital stay and everything done in there but would not cover the Dr's fee since he was adminstering ketamine tho I need to look into this further and perhaps fight it.

Their policy is that if it's being done continuisly through IV and inpatient, they will cover it but will not cover it out patient or for intermittent use as they still feel it is experimental for RSD.

While they quoted numerous Dr's research showing positive results, their issue supposedly with it is that they do not know the long term effects of regular ketamine use on people with RSD.

My Dr said the other day that worse case, it's another 5-10 yrs before they approve, easy for him to say. I have 3 teenagers to get through college and my health bills are eating through all I have yet it's saving my life.

Because it is a denied service, even if you win, insurance companies will only pay what they want and you owe the difference. it's not like you can go in for the service and only owe a co-pay. At least that's the excuse that's been given at both the ketamine providers I've been to, because I was approved by United healthcare before I won my case in WC Court. United only covers about $450-$500 of each infusion, the docs want $1700-$2000.

it's awesome that the inpatient was covered for your daughter and that Dr. S has kept his pricing so reasonable. you are truly blessed....in New England there is no where like that of which I am aware. my first 22 infusions were done in NJ, because when I started there wasn't even a doc up here accepting new patients because of insurance (The Beth Israel in Boston shut their doors to new patients years ago).

I sincerely hope your daughter continues to do well! XOXO. Sandy

I have been having ketamine infusions for 4 years now I started with the 10 day out patient, the seventh day my pain got worse due to the ketamine dosage to high for my body to handle, so this held us another week back. Then we started again but this time we stayed at the amount I had on the 6th day and didnt increase.
Most of the times for the 10 day out patient with this doctor he will go 10 day out then one day every week for a month, then one day every other week for a month and then once a month. For me though my body couldnt go longer then the week so for 2 years I stayed on once every week then a year once every other week. I am now on once a month along with ketamine nasal spray and ketamine losanges(not sure if thats the right spelling)

The ketamine has helped me alot before I started the ketamine I was in the hospital every 3 weeks and could be in there sometimes for 2 weeks. I also started with needing to use crutches or a wheel chair and I am now walking, I walk slow but its so much better then the crutches I was on(I always had to watch for tripping).
The infusions I get helps settle down my body, then the nasal sprays help with everyday burning pain(it numbs the nerves down), and the ketamine losanges I take just when I need a little more, but it really doesnt help as much as the infusions and nasal sprays do.
When I do go into flares which is about every 6-8 weeks and I end up hospitalized I am put on a constant ketamine drip which really helps to get me out faster. I have also had several surgeries in which they used ketamine before, during, and after it and it help control flares and to keep me from getting worse. I really dont know how I would be living without it and wish I had done it sooner.

Blue Cross tried to deny us our inpatient the second time. It took a two hour phone call and a call from my doc but it too was paid in full. I really think you need to appeal and maybe contact the insurance commission in your state. We also have gone in as an admit direct from the ER. Then they could not refuse service. I know there is a patient in Fla (I think at Joe Dimmagio??) that did the same thing.
We have not been to Dr S. Our inpatient is done in DC and inpatient was done in NYC. The only doctor that I know that does not take insurance is Dr Kirkpatrick in Tampa.
RSDSA.org has a list of ketamine doctors. The list grows every week!

Dear Sandy... You are right on and you can rant anytime in my book...

Hugs, Kathy