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

I too dont think its right what the insurances and medicare does to patients by refusing to pay which actually in the long run especially if it makes them pain free its actually cheaper. I have a friend where her insurance would rather pay for 2 new stimulaters that cost over 35,000 each one so a total 70,000 each 2 years plus the cost for the hospital stay which is 24,000 a time, then pay for 1500 dollars a month. I know without the ketamine I would be going through more meds faster and in hospitals more the cost would be endless. Before the ketamine my insurance was having to probably pay around 35,000-40,000 a month due to hospital stays, intensive care units, ambulances, and meds. Now its under 4,000

I dont know why some insurances and medicare gives some patients harder times then others either, like several women getting the infusions faught for 8-10 years before getting accepted. While like me they accpeted me in 2 days. My doctor only charged me 1,000 a treatment but my insurance asked for an idamised(not sure on spelling?) bill where it shows exactly what every bit cost from the meds, nurse, all the way to the flushes for the iv's which they found out came to a total of 2,500, but my doctor said he still will only charge 1,000 but because that paper said it cost more they went and payed the full amount without even batting an eye. So if my insurance could do that for me without a care and dont for others. I dont think its right and really hurts me to see others in so much pain and basically causing them to get worse.If only there was a way to share the insurances( Iam kidding of course). I did see on Aetna ketamine infusions were written into their protocal but not sure how they are.

My carrier is Blue cross blue shield of Alaska.
Others who's insurances have accepted the treatments who are they with?

Mine is with BC and I do understand why it costs so much. Ketamine is a cheap drug but when getting infusions you need constant supervision and that costs money. In addition, you are taking up a bed for quite sometime and businesswise, that costs money. But ketamine is still much cheaper than the SCS and all that is involved with that. Much cheaper.

With FDA approval it is getting harder and harder for insurance to deny this for a pain condition.

I would really advise Barby Ingle's books, especially the latest ReMission Possible, as it gives you a lot of knowledge about ketamine which you can use when discussing with both doctors and insurance companies.

Liz

Katamine infussions
 

Hello from fla. In this state, I could not find a pain specialist who took medicaid. They only take medicare for the most part. I was lucky he agreed to treat me even though he does not accept medicaid. He gave me the two katamine infussions for free. If you cannot afford the infussions, ask your doctor for help. I found a doctor here that put me first over the acencies and the need of money. They are indeed that $1,000 and not everybody can afford that. Some drs. that specialize in pain set asside some portion of their practice to help those that need. You have to ask, there is compassion out there. ginnie Katimine did work for me, but the underlying problem persisted. I had the surgery C3-7 last fall. good luck to all. ginnie

You are truly blessed, don't ever take such kindness for granted -there are NO doctors here that put patients before $....my doctors in RI have made $26,400 off of the 16 infusions they have performed to date, but will terminate me in a NY minute when my WC authorization expires...it totally sucks. as for helping others, forget it. Not happening, except for their first 2infusions when they were just starting out (for which they will expect accolades forever...). It's all about $$. my back-up is my original K doctor in NJ, DR. Getson, who has treated me when I've had no authorization from the courts. He's 300+ miles away.

Even developing a trusting relationship with doctors is difficult when you know that you are just a dollar sign to them, nothing more.

thanks for the post, Sandy

More and more doctors are using ketamine every month. My daughter got it from a doctor who is NOT on any list. She went in through the ER a few times and was admitted. When the resident called me about it (she is away at college), I told him the only thing I thought might help were ketamine infusions. They were aware of ketamine and took the time to investigate and ultimately ended up giving it to her twice. Sometimes you just have to keep working it. And remember, she was an ER admit. Insurance had to take care of whatever the doctor ordered. Don't know all insurance coverages but this was BC.

Thanks so much! The information you have provided in this thread has truly been so encouraging, I have many RSD friends here in RI who have not been able to afford to pay our ONLY provider for hundreds of miles the $1,500-$2,000 required for each infusion (really - who CAN afford that??) Most of my friends are insured, but the insurance companies claim they won't cover ketamine infusions for RSD. I am covered by WC, but my authorizations periodically expire and then my doc cuts me off from any services until the court approves a new contract. I am only 4 weeks away from termination now. But I also have United Healthcare through my job and wouldn't have to worry if I could just use that.

Take care. BTW, where do you live? And where does your daughter go to school?

XOXOX Sandy

thanking where due
 

[Dear Sandy, I am extremely grateful to this pain specilist. I fully realize that he is one of the rare breed, who put patients above the all mighty dollar. [I] have hugged him several times, mush to his embarasment. He also knew that my neck situation was terrible, from the x-ray during the placing of the katamine infussion. They can see where they are placing the infusion. He was the dr. who insisted I get further evaluation because it was so bad. So this dr. saved me twice, once from the pain, and then to make me better with surgery. He has trusted me, and not once will I ever abuse the meds he gives because I believe he understands the pain. My life is better because of two great drs. I hope everybody on this site can find the doctors who have both real people skills, and the ability to help with pain. I thank God daily, as I have read many posts where the doctors are in it for the bucks. If anyone is in fla. boy do I have a dr. to send you to! ginnie

Sandy,
We are in Va and use Dr Chin at GW in DC for infusions for outpatient. The doctor in NY has asked me not to release any info on their program until they are ready to do it 'officially'. They are picking a few select patients to try to work out the kinks.

Get the list from Jim Broatch at www.rsdsa.org and join all the RSD groups on FB. Ketamine Klub, RSDSA and Barby Ingle are three that I can name right off the bat.

And I would order Barby Ingle's books as well. ReMission Possible talks specifically about insurance, the FDA and ketamine. It is available on Amazon or Power of Pain Foundation. (I don't get a commission even though this sounds like an infomercial!!!)

I get outpatient 4 hour infusions, at a rate now of anywhere between 1500mg-2000mg, I've been getting them for almost 3 years now. I'm at a point where they last about 4-6 months of no pain at all. After the infusion I take booster pills for 2 weeks twice a day. I see Dr. Leverone in los angeles, and he's even been so kind as to find a hospital up here in Santa Cruz county that will allow him to do them up here so I don't have to travel to LA.