Ketamine Infusions/ Insurance Questions on that
 

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! :grouphug:

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

Ketamine costs
 

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 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.:confused:

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

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! :grouphug::hug:

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:hug:

SO many questions, so little energy or "spoons"...
 

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! :hug:

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.:rolleyes:

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

I have been on ketamine every day 3 - 4 times a day for the last 2 years or so. It has made a big difference to my quality of life and I really feel it is a pretty safe drug to use. I have had some issues from it and the withdrawel is truly terrible but it has helped the total continuous pain and has in many ways helped me get my life back. Before I went on to ketamine I was on huge doses of morphine, methadone and many other very strong opioids and could do nothing at all mentally. Although I have worsened alot physically from the RSD since starting ketamine I think that without the ketamine I would have lost my brain as well.

I don't know if that makes me a success or not. But it has helped give me what I think of as a pretty ok quality of life back. I can go out, spend time with friends, attend class, work, travel etc. I am still in a wheelchair and totally unable to move, but I enjoy parts of my life, which is something I didn't and couldn't imagine doing before starting it. I still have bad days and I still find the RSD very difficult, especially as it worsens generally but I think, looking back, that I would be in a far far far worse position if I hadn't had the ketamine.

But thats my 2 cents.

Love

Frogga xxxxxxxxxx

Hey Frogga,

With your wonderful attitude and zest for life (even when it sucks at times) is amazing.
I agree that it sure sounds as though Ketamine has given you an improved quality of life and even though it isn't what you'd choose, you have made the best of an ordinary situation.
After all, how many of us are gutsy enough to fly away overseas?:eek: You are an inspiration to me.
Love Tayla:hug:

Tayla and Frogga, thanks so much for all the help. Thanks everyone! It is great to have folks who can help you out when you need. :grouphug:

Tayla-
Yes, it is a 5 day continuous inpatient infusion. I looked at the differences between the outpatient infusions and inpatient infusions and the latter really seems to be the better one. If I am going to shoot for it, I might as well go inpatient since it is going to cost an arm and a leg (think: $25,000)!

see: http://www.rsdhope.org/Showpage.asp?...2&PGCT_ID=4123

Apparently once in a great while you can get the insurance to pay a little after battling it out- but not up front. I have great insurance- BCBS-, but they aren't likely to pay for anything other than a doctor consultation, psychiatrist visit and blood work, unfortunately.

Alright- best be off, bad day, and I have been searching for so many things to get this to work. Knowledge is power, as they say.

I am looking for STUDIES that show the percentage of how many people get ___% relief from the Ketamine Infusions. I need to find this information ASAP. I am searching for actual studies that prove what percentage rate I have of getting improvement with it. It is vital to know before fundraising starts, and something I have to have to write letters to organizations.

THANKS!

ketamine
 

Hi Vanessa,

I had the continual 5 day infusion from dr Richman in NYC- Hospital for Special Surgery.. It might be worth your while to call there so you wouldnt have to travel so far...
My experience there was really good- Excellent staff- Unfortunately the ketamine did not work for me at all BUT I dont have many of the typical RSD symptoms- the ones the ketamine does seem to help...If you want more info on the hospital let me know- My insurance covered most of the procedure- I think we paid around $2000 all together with no begging at all

Let me know what else I can tell you!

There are no government backed studies or anything that you can point to. The only percentages of this particular subject come from less than a handful of doctors who actually give this to the worst rsd patients out there, of which the one article states has been only 26 people in Germany for the coma treatment.There are no medical studies or articles in medical journals that have any stats because there are none.


Low doses of a common intravenous anesthetic may relieve debilitating pain syndrome
Harbut R MD

23 Sep 2004



Limited, low-dose infusions of a widely used anesthetic drug may relieve the often intolerable and debilitating pain of Complex Regional Pain Syndrome (CRPS), a Penn State Milton S. Hershey Medical Center researcher found.

"This pain disorder is very difficult to treat. Currently-available therapies, at best, oftentimes only make the pain bearable for many CRPS sufferers," said Ronald E. Harbut, M.D., Ph.D., assistant professor of anesthesiology, Penn State Hershey Medical Center. "In our retrospective study, some patients who underwent a low-dose infusion of ketamine experienced complete relief from their pain, suggesting that this therapy may be an option for some patients with intolerable CRPS."

The study, titled "Subanesthetic Ketamine Infusion Therapy: A Retrospective Analysis of a Novel Therapeutic Approach to Complex Regional Pain Syndrome," was published in the September 2004 issue of Pain Medicine, the official journal of the American Academy of Pain Medicine.

CRPS (type I), also known as Reflex Sympathetic Dystrophy Syndrome (RSD), affects between 1.5 million and 7 million people in the United States and is oftentimes marked by a severe, burning pain that can be very resistant to conventional therapies. The pain frequently begins after a fall or sprain, a fracture, infections, surgery, or trauma. Often present in the limbs with possible later spreading to other parts of the body, patients also may experience skin color changes, sweating abnormalities, tissue swelling, and an extreme sensitivity to light touch or vibrations. The McGill Pain Index rates CRPS as 42 on the scale of 50, with 50 being most severe.

Although much is unknown about CRPS, the pain experienced by patients appears to be caused by over-stimulation of a nerve receptor complex involved in the process of feeling pain. Therefore, efforts have been made to treat CRPS by blocking these receptors. Whereas most pain medications do not effectively block these receptor complexes (often referred to as NMDA-receptors), ketamine does.

The study was initiated by Graeme E. Correll, B.E., M.B.B.S., and involved reviewing the medical records of 33 patients with CRPS treated by Correll. The patients, some of whom had failed to obtain pain relief from conventional therapies, were treated with low-dose inpatient intravenous infusions of ketamine between 1996 and 2002 in Mackay, Queensland, Australia. Ketamine infusions were started at very low rates and were slowly increased in small increments as tolerated by selected patients. The therapy was then continued as long as the patient tolerated the drug and continued to benefit from it. Treatment cycles generally continued until the patient experienced complete pain relief; until initially-obtained relief would not improve any further; or for no more than 48 hours if there was no improvement in pain severity.

Pain was completely relieved for 25 (76 percent) patients, partially relieved for six (18 percent) patients, and not relieved for two (6 percent) patients. Although the relief obtained did not last indefinitely, 54 percent remained completely pain-free for three months or more and 31 percent for six months or more. For 12 patients who received a second treatment, 58 percent experienced relief for one year or more with 33 percent remaining pain-free for more than three years.

The most frequent side effect reported was a feeling of inebriation. Hallucinations occurred in six patients with less frequent side effects including complaints of light-headedness, dizziness and nausea. Liver enzymes were altered in four patients but resolved after therapy.

The exact mechanism of sustained pain relief is unknown, but is currently under study at Penn State Hershey Medical Center. Harbut likened the ketamine treatment to the healing of a broken bone. "If someone breaks a bone and you simply put the two pieces back together, they won't immediately heal. However, if you add a splint and hold the bones steady for a period of time, and then later take away the splint the bone is healed. I believe that the ketamine treatment does something similar that lends support and allows the nerve cells to heal themselves, so that when you take away the ketamine, the pain is reduced or gone."

Harbut began studying CRPS with Correll during a work assignment Harbut volunteered to take in far northern Queensland, Australia, in the late 1990s. Correll was developing a therapy for CRPS but wanted a collaborator to formally research the effectiveness of the therapy. Harbut brought Correll's method back to the U.S. where he developed an FDA-approved study protocol (used at the Mayo Clinic Scottsdale) using this method to attempt to treat post herpetic neuralgia, another pain disorder with symptoms somewhat similar to CRPS. At the same time, Harbut met a patient who had suffered with intolerable CRPS for nine years who wanted to try this new therapy. That patient became the first successful treatment of intractable CRPS in the U.S. (A Case Report of this treatment appeared in the June 2002 issue of Pain Medicine.)

"Ultimately, we want to find a way to improve the quality of life for those who suffer with intolerable CRPS, some of whom at times contemplate suicide because of their endless pain," Harbut said. "Although optimistic about these early findings, certainly more study is needed to further establish the safety and efficacy of this novel approach." (A large clinical study is currently planned and under development at Penn State Hershey Medical Center.)

In addition to Harbut and Correll, the team involved in this study included: Jahangir Maleki, M.D., Ph.D., and Edward J. Gracely, Ph.D., Drexel University College of Medicine; and Jesse J. Muir, M.D., Mayo Clinic Scottsdale.

Article found here : http://www.rsdcanada.org/parc/englis...udies2003.html


http://home.comcast.net/~fightrsdwithlisa/articles.html

Quote from the above article: The earlier the condition is treated, the more effective it seems to be - but there is no cure and no one treatment works universally, experts say. The ketamine coma is only for the most serious cases. A number of U.S. doctors use ketamine in small doses to treat pain while patients are awake, but Schwartzman and two German colleagues, Ralph-Thomas Kiefer and Peter Rohr, are the first to infuse it in comatose patients for up to seven days. So far, the trio has treated 26 American patients in Germany. All patients received significant temporary pain relief, and nine remain completely pain-free from nine months to three years after the infusion.

Ketamine is FDA-approved in the United States for two-day use when the patient is awake, but Schwartzman holds out little hope that the coma procedure will ever be allowed here. At Hahnemann University Hospital in Philadelphia, Schwartzman studies ketamine use for less severe patients and as boosters for those who have returned from Germany.

He just finished a study of 50 patients who were awake during five days of ketamine use - also not enough, he said - and plans to go back to the FDA in a couple of months for approval to try 10-day outpatient infusions. It may seem strange for a mind-altering substance to be used medically, but the history of ketamine is like many other drugs - if it works for one thing, scientists say, let's see if it works for another.


http://www.rsdhope.org/Showpage.asp?...2&PGCT_ID=3905

and continues to part 2 as well.

http://www.rsds.org/3/treatment/ketamine.html

Sorry you aren't feeling well Vanessa,

I will try and get my hands on some studies done here as to the efficacy of ketamine infusions.
I am sure that my team would somewhere have that data so I will ring their rooms.
There maybe some difference in outcomes between countries though Vanessa as I am wondering if because here it is covered by medicare and failure of the treatment, whilst being upsetting, does not also hit the hip pocket causing all the extra issues that this brings to the table.
Will see what I can find and please let me know as I would very much like to be a part of any fundraising to help you attain your infusion.
Best wishes
Tayla:hug:

I agree the information posted is wonderful
 

Nothing else has been published. Only 40+ people have had the coma, I belivie. What Galeana posted was everything that I have ever read on ketamine. Nice research Galeana.! One other key word to type in the search is Shannon Stocker. She has kept a great log following her ketamine coma and has had great success.:)

Nessa
I am only posting for you honey then I am out a here :eek:

Please do a search of my threads on this topic and then email me OK ??
We need to discuss this thoroughly :):):)


Love
GnP:hug::hug:;)

more help...
 

Thanks everyone!

Debbie- PMed you! ;)

Galena- I had found that one, and I was stuck there, wondering WHERE I could find more. SO, there aren't any?! Eh, that is the reason then. Thanks!

Tayla- thanks! I appreciate that! :) So sweet of you- I am working on creating a web page- one web page for my little clay business and then I will have a separate fund raiser site online too.

CZ- thanks, I am looking up Shannon now. ;)

GnP- You only got the oral/ one infusion then? I will email you as soon as I can. :)

Now what we are looking for, is even articles written by the doctors or someone else that says how much success Dr. Schwartzman is getting, how much success Dr. Harbut is getting, Dr. Getson and so on...on both inpatient infusions and outpatient infusions. Sorry about all the questions, but it is hard to know with this. If it costs thousands of dollars for 3 months relief than it doesn't sound so good, so we are quite unsure. What is the average rate of success for a patient with RSD, getting inpatient/ outpatient Ketamine?:confused::confused:How much am I paying for how much relief and for how long?

Sorry for the grammar and all, I am having a bad day and I slept 2 hours last night. Each night is getting harder for me, I am not sleeping through this. The pain is making me sob to sleep all night long. Rough going, please be praying for me/ sleep- we don't seem well acquainted anymore! :(:eek:

The problem is everyone is different
 

Vanessa, the problem is the amount of rellief everyone gets is different. Just as the doses are. Obvioulsy those trying this have tried everything else. the general rule of thumb from what ive read is that you can expect a 50% redution in pain. It is not a cure. That,the reduction, is a huge amount when your pain is in the 8-9-10 zone as you unfortunetly know. For that reason alone it is worth funding, explaining the devasting effect of long term use and dosage or some of the medications we need to survive. Now I do have a good friend that it did not help at all. So everyone is different. but generally those it does help the pain continues after 3 months but at a lower level.
for some that lower level is enough to resume their old life for others is means the ability to lower meds - which is so important. When applying dont forget that if successful booster infusions are normally required even after a 5 day infusion. or I should say especially after a five day infusion. To keep the "connedtion asleep". Hope this helps. cz

Let's share info to increase odds of insurance approved payments!
 

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.

For chronic pain, in general, proving that the treatment improves function in objective ways is generally what is required. Showing the treatment reduces pain medication can help but often only if the treatment is cheaper than the medications.

I have heard of Lidocaine infusions being paid for when Ketamine infusions were not but I don't know the details other than it was at a teaching hospital so it might be a clinical trial.

There are current clinical trials with ketamine infusions. Search ClinicalTrials.gov. Make sure to search under all different names for the condition and the treatment (separately) as the search engine is not that good, you might have to try to few things to find it.

For evidence based guidelines search guidelines.gov. I didn't find any that listed ketamine or lidocain infusions but I didn't look very hard.

Part of the problem is that the guidelines generally are several years behind the current research, just because of the processes involved in creating them.

good luck

Your post is a great idea...

I'm in on creating a central repository of information on insurance companies and, alas, why they almost all decline to pay for ketamine.

I start next week with a four-hour infusion. It works out to about $2000 for each treatment.

If there is anyone who has insurance that has covered their treatment, or a portion of their treatment, I would love to know, especially with respect to which specific studies were cited to validate ketamine as a treatment option. It would certainly help in any appeal I might make.

Thanks in advance...

(What follows is the medical policy for Blue Cross California, my insurance company. It's such ********.)
______________________________________

Intravenous Ketamine and Intravenous Lidocaine for Chronic Pain Management
Policy #: DRUG.00037 Current Effective Date: 07/02/2007
Status: New Last Review Date: 05/17/2007

--------------------------------------------------------------------------
Description/Scope

Recent interests in the field of pain management have included the administration of intravenous ketamine as a treatment for chronic pain. Ketamine is a rapid-acting general anesthetic which is frequently used prior to, during and after surgical procedures. Intravenous (systemic) lidocaine has been approved by the U.S. Food and Drug Administration (FDA) as an anti-arrhythmic medication. The intravenous administration of ketamine or lidocaine for the treatment of chronic pain is an off-label use of these medications.

Policy Statement

Investigational and Not Medically Necessary:

Intravenous administration of ketamine is considered investigational and not medically necessary for the management of chronic pain.

Intravenous administration of lidocaine is considered investigational and not medically necessary for the management of chronic pain.
_________________________________________

Hi All,
I find this post very informational. I have not had Katemine infusion but i had just one hour of lidocaine infusion. I had 15 minutes of pain free only. My insurance, Cigna, had paid for it. I don't know whether it will pay for it if it is more than one hour at a time.
If your insurance pay for katemine infusion whether it is outpatient or inpatient, please post your insurance here so that we know how to proceed just in case we need to explore this option.
In terms of the coma katemine infusion, do we need a referral from Dr. S? Is he the only one who can refer coma Katemine infusion in Germanly?
Take care!
Numb

Coma in Germany
 

Just a guick update- I was number 34 in Germany. I dont know if there have been any after me.CZ

Ketamine Procedures and Insurance Companies
 

Hi,

I have also have had the Low Dose Ketamine with Boosters and was very lucky each time with the insurance companies. As you know how it works at HSS I don't have to tell you that. But what makes the difference is that I have a PPO Plan not a HMO. By husband's company pays 100% towards the HMO Portion and it's costing us $7000 or more a year to upgrade it to a PPO and ofcourse it just can't be me it has to be our whole family. We have thought about going out and buying my own policy and changing the family back to HMO but that's even more $$$ for the PPO Premium. And believe it or not my boosters where in-network.

Ketamine and I are not friends but I truly believe my RSD would be worse and my quality of life would be gone if I did not do those treatments. What I mean by not friends its a little rough of a procedure, but works.

I hoped this helped. If you have any other questions or want to talk about the insurance issues please feel free to private message me. I have had many procedures and surgeries with very speciality doctors so it is alittle tricky.

Ann