I'm sorry if I came off wrong. I think visioniosiv captured my feelings better than maybe I did at the time. Very much like my parade was being crapped on. At any rate, I am going to carry on with my parade.

I am quite fortunate that I do have insurance that is semi-willing to work with me. I'm hoping my doctor is equally willing. Honestly, I don't know how he feels about any of these treatments yet. He recommended physical therapy, which I did and it helped a bit with a little mobility and I have a home program to continue but my insurance only pays for so much. He also recommended a SGB which only made things worse by causing a flare and offering no relief. Other than that, he's offered tramadol which I have happily accepted and other drugs, none of which have helped, all of which have had side effects that have been so bad I've quickly stopped taking them.

So I'm done waiting. I'm not going to wait for a doctor who isn't aggressive enough and after suffering from serotonin syndrome from the last drug we tried I'm done with all drugs other than straight up as needed painkillers. I'll try anything from scientifically proven decades ago to the downright wacky as long as it poses no danger to me. I just want to avoid going under the knife as long as possible. I've got nothing but time on my hands to look into treatments I can request referrals for. The doc who did the block was actually very eager to be more aggressive than my doc and if my doc is hesitant at all it'll be the last time I see him and I'll make the one who did my neck-stabbing the one in charge. I need someone who is willing to be aggressive with me and listen to me and let me be a partner in my care. Not just tell me what to do and what ridiculously dangerous drugs to take.

So anyway, I'm still excited that I'll be able to move forward with one form of treatment or another without any cutting. And again, I'm sorry for offending.

Hi Adalaide,

Go you! I'm so happy and excited for you! I really hope that this will eliminate or greatly reduce your pain. I too have been tossing this idea around and from what I can see my insurance pays for it [ketamine] as well.

I have been trying to find a doctor in the Denver area that does Ketamine treatments and I've had a difficult time finding one. Salt Lake is not that far. If all else fails, perhaps someday I might could use that info... would you mind sharing the name of your doctor? If you'd rather, you could send me a prvt message.

I sure hope that you will keep us posted on your progress if you decide to proceed with this treatment modality. Best of luck hon!

This is just absolute truth folks. Well said. Thank you for this T!

The doctor I am asking my doctor for a referral to is Dr. Pulley at the Omega Interventional Pain Clinic. They only take patients by referral, with clinic notes blah blah blah. But I will get a referral.

I agree with Vision. I hope you both stay on. I have learned alot from both of you too. I have learned alot from all of you. Thanks for all the interesting info! And Adelaide, I hope that whatever you decide to do, that you feel better soon. Take care.

Adalaide-

I totally understand your frustration with the insurance company. My lawyer and I fought WC for 8 months for Calamare therapy. It was crazy to me that they would pay the full price for a SCS but not $1500 for Calamare. I eventually was able to talk to the CEO of my WC company. In the end the finally did pay for the treatment (along with the cost of a hotel so I didn't have to drive back and forth each day 1.5 hours), but the battle was long and tiring.

I have a new PM now and he hadn't even heard about Calamare before. When I told him about it and gave him info to read his reply was "it doesn't look like it can harm you, this disease is tough to treat so anything is worth a shot." That was my feeling about it too. A SCS has lots of things that can go wrong, why not try something less invasive without all that risk first? If it doesn't work I'm no worse off than before the treatment. That's the thing about Calamare- it may not work but it won't make your symptoms worse.

I'm not sure if you know this or not, but once you do ketamine you can't do Calamare anymore. My provider gave me the lengthy explanation of why it won't work, but the bottom line is he said if I tried the ketamine first then the Calamare wasn't an option anymore.

One other treatment that I had luck with was a lidocaine infusion. It's an older treatment for neuropathic pain (but not specifically CRPS- very little research). My PM thought it was worth a try- small temporary side effects, way less risky than SCS. It along with Calamare has made my days more manageable.

Good luck to you. I do understand your frustration. Insurance companies really sap our strength.

isn't that true!!!!!!

Adelaide - I wanted to add my bit of experience for you to evaluate. My daughter had gone thru something like 5 lumbar blocks and 6 Bier blocks to treat her RSD, then she was being scheduled for a spinal cord stimulator when my sister came across a brief mention of Calmare on a discussion board, and we decided to try it before trying out the SCS because of how it's non-invasive, and if it didn't work, we could do the SCS anyway. We did some research and liked the guy in NJ best because he seemed to have the most experience with RSD, and thank God, it worked for her. I just posted an update in the Calmare thread, and there are posts on that thread sharing our personal experience with it, and with a TENS machine, and how they were different to us (we've used both).

Anyway, all that to say that I wanted to encourage you to not stop with the first - or even the second insurance denial. As you said, it makes no sense for them to not try $1500 instead of treatments that cost many, many thousands more. I wrote a four-page letter to my insurance company showing how it was so silly for them to not pay for the Calmare treatment when our other option was a SCS that would probably cost, what, $60,000 for the unit and the surgery, plus a probable lifetime of some pain meds. By the second or third appeal (I think I addressed the last one to the president of the insurance company), they approved it and paid for it. Of course the difficulty is that you feel so bad that you don't want to take the time and energy to write a letter, but maybe you can get someone to do it for you. You can't appeal to the heart of an insurance company executive, but you can appeal to their wallets! When I pointed out the vast savings that were a good possibility, they finally caved and paid us (and it was even after the fact because we went ahead and did it anyway!)

I also like that most if not all Calmare providers will do the first treatment free if it doesn't work, and you'll know if it will work or not by the first treatment. Also, my experience was a little different than gigicnm's experience - our doc said that you can get Calmare after ketamine treatments, but it doesn't work as well.

Anyway, just some info for you to read and digest, and I hope that you find a treatment/treatments that work well for you! That's great that they were willing to pay for ketamine. Mine wasn't, although they would have paid for a SCS. Gentle hugs, prayers and best wishes

Thanks! That's really helpful and enlightening. I have planned on doing the first "free" appointment to see if it helps at all and using that information along with an appeal to their wallets to try again. Life has just been crazy lately. Our comic con was at the beginning of this month and I drove myself into the ground attending all three days. (totally worth it!) Then I managed to get sick and spend more than a week in bed with the flu. I'm just starting to feel better so hopefully I can get an appointment before the end of the month. I also got a referral to Dr. Pulley up in the city for the ketamine. At the very least I can talk to him.

Comic Con! How fun! and I would agree - totally worth it! Sometimes we just need those fun things, regardless of the consequences, don't we?!

Best wishes for good results! and keep us informed, please


edit - I just thought to mention that you might want to see how many patients the doc near you has treated. We've been treated at 3 Calmare places now, and not all doctors are the same. The guy in NJ was the most experienced by FAR; of two doctors in Arizona, one was good and one was not. Check out the Calmare thread if you want more details of our experience.

I have read about your experience. The local doc is really my only option. I don't have the money for a hotel (and it isn't something I can push my insurance to pay for) to stay somewhere farther away for treatment, and traveling back and forth daily just is not an option. Plus staying somewhere for me is stressful and can be extra costly because of my celiac, which just makes it even worse. From what I understand, it is one of this doc's primary treatments he provides but I will talk to him about it since you mentioned it. But it's him or no one.