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annette030 posted:
Did you try the Calmare treatment? Did it help you at all? I hope it did, you surely deserve improvement.

Love you, Annette
ctbeth responded:
Hi Annette, <3


I've had one hour on Monday, Tues, Wed, and today, and will have another tomorrow.

After that, the same five days next week. Depending on my assessment and how my MD prefers, I'll continue long as recommended.

So far, it's been amazing; so much more relief than I dared to expect.

When actually connected to the machine, which is called, "Scrambler", the sensations are kind of weird- neither pleasant nor particularly unpleasant, but different than SCS. I've not ever used a TENS, so I don't know what that is like.

The attachment is cables and the kind of sticky leads like with an EKG. The scrambler is on for one hour each session.

I've had my SCS turned off since Monday, as this will enable me and my MD the lability to know the pain relief without interference.

While the scrambler is on, the pain just gets lost somewhere under the sensations from the machine. Yeah, it's kind of weird, but nice,

After it's removed (I'm removed is more accurate), I've stayed relatively pain free-like from pain number 7-to-8 before to a 2, for approx four hours after.

Somehow, that time period is supposed to get longer and longer until treatment is needed as a one-time "boost".

After Day four, I don't know if I'm doing well, poorly, or average. I'm the first spinal cord injury patient that my MD's practice has treated, so, I guess we'll have to see.

I am planning to complete, at least tomorrow and five days next week.

Thanks for asking. I'm hoping that I'll have good news and that I'd if turns our great, that others will want to try.

And how have you been?


ctbeth replied to ctbeth's response:
Hi Annette, et al,

I had my fifth Calmare scrambler therapy today.

I did really well and got relief for almost six hours after. This is the longest so far.

I'll also do Mon through Fri next week, too. After completing a ten- treatment series, then my MD and I will discuss what to do the next week.

It's a long ride, the hour attacked to the Calmare machine isn't particularly pleasant, and it expensive, but I'm going to continue until I'm told otherwise.

Are you considering Calmare therapy?
annette030 replied to ctbeth's response:
I am doing okay, I have decreased the 10 mg. dose of methadone to 5 10 am & 6 pm, but still take 10 mg. at 2 am. I am still taking 2-3 doses of breakthrough meds in 24 hours, usually two doses.

I will see a pain management doctor on Feb. 18, for a consult. No one but my eye Dr. has read anything about double vision and opiates. A friend of mine with a PhD in pharmacy he's read some anecdotal information,, but can't find any studies on the topic. He felt it was dose related. When I asked my eye doctor for links to info she has read, she said "I don't read." GASP! Not sure I will be back to see her. When I mentioned all of this to my internist, she suggested I see the pain management doc again. She felt he would have answers for me.

After seeing you post about Calmare, I thought I would check with you and see if you had had any luck. Did you also have to stop all opiates prior to trying it? I am waiting with bated breath to hear what happens next week.

Hugs, Annette
annette030 replied to ctbeth's response:
What do you mean by expensive, does insurance/Medicare cover it? Do you pay out of pocket for it?

Hugs, Annette
ctbeth replied to annette030's response:
At this point, my MD told me that the procedure does not yet have an insurance code number, so, at this time, it is not covered by any insurer.

Yes, I am paying for it.
ctbeth replied to annette030's response:
Sorry, I didn't address the other matter regarding MSContin.

I have not, at this stage, changes my scheduled med.

The SCS must be turned off during the treatment and I keep it off for hours afterward to better assess how long the relief continues after treatment.

There is a risk that, even turned off, the energy of the Calmare may effect the SCS battery/ generator. Since my battery gets changed so often, this is a risk I'm willing to live with. So far, the SCS hasn't been bothered at all by the Calmare.

I turn it off before treatment and keep it turned off until the pain comes back. Right now, I get about four to five hours. The hope is that the length of relief post treatment will become significantly longer.
dfromspencer replied to ctbeth's response:
Hi Beth,

I checked on the Calmare as you asked, and then read your posts here. Oh wow! Will this work for nerve damage, as I am not sure to what extent your spinal cord is effected? Do you also have nerve damage?

I have to wonder if my Pain Mgmt. Spst. has heard of this yet? He also mentioned massage therapy, and chiro. to me, so, this may be something I can use, also???

What do you think???

ctbeth replied to dfromspencer's response:
Hi Dennis,

Calmare is specifically for neurogenic pain.

Since all pain, all sensation, is communicated by nerves, technically all pain is neuro pain. The term for pain originating from the nerves is called neurogenic.

If your MD isn't yet doing Calmare, you can still go to the official Calmare page and find an info phone number and speak with someone who may offer you info regarding whether this would be a therapy appropriate for your specific pathology.

Reported to me from my MD, the Calmare unit cost in excess of $100,000 which may defer many practices from making purchase until more studies show that it's a worthy investment.

Where do you live, Dennis? I've thought that you live in Spencer, MASSACHUSETTS, but I may be wrong.

Right now, here in CONNECTICUT, it's snowing like there's no tomorrow and wicked cold.

Stay in touch, ok.

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