Sorry to start a new thread here, but I felt I should as far as Ketamine questions go and not fundraising...


COSTS on TREATMENTS
~Do you know the approximate costs of the Ketamine treatment?

~Was any of it covered by your insurance?

~Does anyone know of any insurance company that can be persuaded to pay for any of it?



Then, on to Ketamine TREATMENTS:

~Has anyone had this EXACT treatment from the same Dr. Harbut?

~If you have had an infusion, then how long did the relief of that work, and at what percentage rate did it relieve your pain?

~Did you go in total remission with it?



If anyone can point me to more research/ stories on the Ketamine Infusions, I would be so grateful! Thanks a bunch!

ALSO, any Ketamine experiences at all would be great. Thanks!

HI Vanessa, my insurance did help. As the treatment is not available here, they applied out of network rates to my infusions. Not to the coma - it went towards my deductible only and that is still in debate since it was out of the country. We have been through every penny we have , had or would have. Our retirement funds you name it its gone. And Ive been one of the lucky ones with insurance. I have had it all - two 5 day icu ket infusions. , 2.5 years of two day infusions, roughly 2000 per visit, not including air and hotel, the coma in germany 60,000, we borrowed. now mine was more expensive than most as I became very ill and was in icu for 30 days. cost of coma treatment is 25,000, around there. The 60,000 includes hotels etc for my husband , airfare etc. My insurance has been very helpful applying out of network rates to hospitallization for ketamine infusions everywhere but Germany.Im one of the lucky ones when it comes to insurance. Was it worth it all. Absolutely- when I went for the coma I was literally just on the edge of going mad from the level 9-10 pain 24/7. I am not exaggerating. My pain level is down about 50%. I will probably go for booster infusions the rest of my life but im here, Im coping, my life will never be as it was. I wish ketamine worked for everyone . Im lucky it has helped me . Let me know if I answered your questions I kind of got on a roll sorry about that. sincerely cz

Hi CZ I just want to ask you a quick question. (I just read with so much interest of your story about the ketamine infusion, I was on the edge of my seat!) Wow!!! thanks for sharing! I would like to know what made you so ill that you were in ICU for 30 whole days?? wow!! Now, that had to be expensive... especially in the ICU unit! thanks. As for you, Ness, I hope and pray that all works out well for you! Love to you both!! ~Love, Desi

Hi Vanessa,

I am sorry I can only talk about the use of Ketamine in Australia but I can say that Dr Harbut studied with Graeme Correll many years ago in Queensland Australia, so I wonder if that means he would be using the technique used here.

Would love to share Ketamine experiences---what would you like to know specifically?
Love Tayla

I was curious as to how long the treatment helped you, how much relief you got and did anyone happen to have 100% relief with it?

Thanks so much!

Hi again Vanessa,

It has varied with me from infusion to infusion. Sometimes I think that it has depended on how poor a condition I was in before I went to have it.
There have been times when I have felt fantastic for a couple of months after with seriously reduced pain levels, there have been times when there was only relief for the time the infusion was running.
I can't explain how nice it is to have some continuous sleep and to feel almost relaxed for once.
I know that there are several people here in Australia who have gone back to a fairly normal existance following the infusions with a cessation of all RSD symptoms,I know others who have had several months and others who say it did NOTHING
I definitely think the fact that it really is a relatively safe drug when used under supervision and that side effects are entirely manageable makes it well worth taking the chance on it if it is available to you.
Love Tayla

I have so many questions, right now I just found out from an RSD buddy from another group that she is getting Ketamine infusions from Dr. Getson. SO, apparently he still IS doing that in some way! I will be talking with her later on, but as for now...

I am trying to figure this out: there are Ketamine infusions by Dr. G. and Dr. S. where they follow up with boosters. Dr. Harbut, on the other hand does 1 continual 5 day Ketamine infusion. Which is better and has more success?

Thanks!

Hi Vanessa,

I can't comment on the outpatient then booster Ketamaine as we don't do that here but I have heard on this site from someone (sorry have forgotten who) who did get relief from outpatient and booster.

My opinion on this is that the inpatient treatment allows a slow and steady titration of the dose until you reach a level that best suits you.
Once this level is reached then it can stay there maintaining that level of relief for the entire time of the infusion ?5 days there in USA.

A side benefit from the inpatient treatment is that you can actually make the most of feeling 'ketamined" and get some good quality sleep and relaxation---something you'd be unable to do if you have to get up, go home, cook tea and get the kids ready for bed.

Of course, this is JUST my take on it as someone who has only had the inpatient type.
Love Tayla

Hello everyone,
My spouse has suffered with RSD in the knee resulting from an operation that was not even in the knee. Conventional nerve blocks were not providing relief. We were introduced to Dr. Richman in New York and recently completed a week long inpatient Ketamine treatment. This is the first relief that has worked in 8 months. But it is not over, there are booster treatments to follow.

My problem is that our major insurance carrier with a high option plan is only paying the first two hospital days and has started denying the rest as experimental. Bad enough I may have to pay out of pocket for several days of hospital but also I am worried they will deny the boosters which means, all of this was for nothing?

The insurance companies say there are not enough studies and it is all experimental. They endeavor to ignore the facts that have been published for the last 10 years because on technicalities, they want bigger studies. The only way I can see to change this in the near term is with nationwide evidence that on a case by case basis, treatments ARE being paid for. If we can get organized with that evidence, we should be able to improve the chances of coverage being approved.

Some of you have had luck with your insurance. I would like to suggest that we pool information in some way that can be shared. This must be done in a way that maintains our confidentiality of course! I will be happy to host phone conferences, face to face meetings, whatever will work. What I am hoping we can do is to start lists of this kind of information:
1. A really complete list of studies and results for all treatments. There are many incomplete lists out there because each site is run by different volunteers with limited time and resources, and most of the lists are not updated.
2. CRPS and RSD treatments that are easily paid for by insurance
3. CRPS and RSD treatments that are difficult to be paid for by insurance
3a. A list of Doctors who have been successful in getting insurance companies to pay for treatments in list number two.
3b. Reasons given by insurance companies for denying payment for treatments in list number two.
3c. Examples of successful appeals for treatments in list number two that resulted in the insurance paying up. In particular, examples of the language of the appeals and the evidence given in the appeals (such as publications and studies) that made the appeals successful.
4. A list of case study stories for reference as to what works and does not work when dealing with insurance companies - completely confidential.
5. A list of people who would be willing to act as contacts to talk to persons with similar predicaments with their insurance companies. This could also be done in a way to protect confidentiality - at a minimum by private messages in a forum like this.

Anyone interested in working with me on this? Please post to the forum and and send me a message!

This is the first and only discussion I have found on the internet regarding insurance, payment and coverage questions! And yet to me it is one of the most important discussions that needs to happen. I am not proposing to replace other CRPS or RSD sites. I would be happy to work with any existing site and webmaster to make this happen. On the other hand, I have time, and a lot of webspace, and I will make this a personal priority.