leg pain stops

[Gleason Gary]

I had a resection C-5 thru T-4 in June 2005. Since then my legs from waist down have been in a grade 6-7 pain. Feels like Charlie horse and boiled all at once. Have tried many meds over the years and was running out of options. I went to Mayo under referral and was placed in trial program. It utilizes a machine called the "Scrambler". Totally non invasive. Electrodes surround the incision site and for one hour a day for 2 weeks they applied low current. Every day my pain decreased until after 2 weeks for the first time in 9 1/2 years my legs have no pain. Machine was designed by Italian doc. Mayo does not know how it works, but I was patient 162 to try it and they claim a 80% success rate. Trial is ongoing until they reach 200 patients. I had a 3 day booster last week as I was getting some tingling back in the right leg. After 3 days it was gone again. They say it will be permanent with possible occasional boosters. All pain meds gone except morphine, and I am working my way off of that.

[peaceandlove]

Dear Gary,

You give me hope and many thanks for your statment.Scramble may be the saver for us one day. How much it cost you this treatment? Where did you make it? State /hospital/ any website.
Did they state when this machine will be available?
Did this electrode help in low back pain that if you have it? And if low back pain can be considered a neuropathuc pain.

Will be appreciated the answers and any online referrence for the scramble.

Gd day

[peaceandlove]

Gary since yr not a member in this forum; can you please provide us any email to contact you.

Thanks

[peaceandlove]

After reading online.this therapy is by calmare and it look like saver for the victims of spinal cord tumor suffering from pain. Scrambler therapy should be in all hospitals to treat people suffering. If any body here have try it please share yr experiace

[billanschell]

In counterbalance to Gary's experience, I offer mine. I weaned myself off of Lyrica a week in advance of the first treatment (as required), which was tremendously hard on my body (see my post "Weaning off Lyrica"). I had treatment #1 yesterday, and received no benefit from it whatsoever, so my treatment is over (if a patient doesn't experience relief the first day, the treatment will not work despite repeat visits). Bad luck, or so it seems. But after the first clinic nurse told me my neuropathic symptoms (extreme knee stiffness/heaviness plus an ankle that feels it's being squeezed in a vice) were a good match for the treatment, the nurse who operated the machine told me it only works on "burning pain" and nearly canceled the visit on the spot. Meaning I went through (and am still in the throes of) the entire Lyrica withdrawal for nothing.

The incompetence of the clinicians was pretty astounding. They lost the records my doctor had transferred there, and took no notes of my advance meeting or phone calls, so they had no information on me when I arrived yesterday. Different nurses told me different stories, two fairly urgent phone calls weren't returned, promises weren't kept, and the nurse operating the machine yesterday had never heard the terms "intramedullary" or "ependymoma." The machine is definitely working for some patients, but I have the sense they're booking it pretty carelessly and the nurses are undertrained. The doctor who appears in the clinic's videos never had anything to do with my case whatsoever, though I saw him sitting in his office at one point.

I don't recommend this unless you can find a trained team that has experience with cases very similar to ours. And although I'm no conspiracy theorist, I have to wonder if Gary is a real person -- the fact he didn't join the board and never replied to any follow-ups leaves me open to the idea that he's in the Calmare Scrambler marketing wing. Sorry to be a bubble-burster, but this was a very bad experience for me, and I want others to be forewarned.

[dmdgood]

Thanks for sharing Bill. It's disappointing that it didn't work, and good to know the types of pain it works for versus not. And this is yet another story of disorganized health services, bringing it home again about how knowledgeable we need to be and advocate for ourselves, as not even the professionals it seems are competent to "have our back".

[funnywalk]

Don't we all want this kind of miracle? Yet, as Billan says, we don't know for sure if this was posted by a genuine patient or a salesman. I'd still like to try it. I've just taken part in a trial of Sativex for cancer pain relief [neuropathy, of course], and it has lessened the pain by one point out of ten. But when we're in pain, all we want is a range of options we can try. So I'm continuing to take it until something else comes along.

[peaceandlove]

When I first read Garry mail about Scrambler or what called Calmare, I tried to search about it, and the local Doctor operating calmare told me : "I have treated worst than your case and succeeded ". " I get Hope " but still I couldn't believe since my pain is very true to the point I believe that nobody can delete it except a miracle.
I search and I talk to the best calmare practitioners which they have center in the USA, Doctor D'Amato who himself refer me some Italian physician who invent the machine Dr. Marineno (or something like that I forget his name), and he gave me a full website info about the machine..
Until now I haven't try it. I am working to get it in inside the country where I work, " Doha Qatar ", I requested a Quotation from the Calmare
Supplier of the machine and my doctor is trying to get it in. I will post on this website once I have a trial. Our cases are different since we have pain all around the areas below the spinal cord tumor. The Question is if it works, Where do we have to apply it, all over the body, hips legs thigh, knee .....Many sessions that if it works.
I believe that my pain is strong and true to the point that nobody can beat him. Yes it is true, nobody can understand what I am talking about except you dear patients.
We are attached to hope, even I ask myself the question that if Calmare is true or no, and I push myself to believe in it and give myself a trial, what to loose. I have spent a lot of Cash for doctors and surgeons.... I felt to that the name " Gleason Gary " is fake and he was advertising for the machine since I google his name and try to find something related but nothing.... I don't want to Judge the machine from a salesman.. He is trading in People health and suffers....
I have a point too, if this machine is working in an explained scientifically way, then why it does only works on 80%.. Why the other 20% still they cannot benefit from it...This question give a lot of doubt for me.. Who decided the 80% is true, does they have any certificates from any statistic organization stating so... Another question is That John Hopkins is using this machine, it mean there is good hints... A lot of confusion with and against Calmare..I hope any person who have pain before the year 2010 and recorded on websites and will try it and get benefit, for sure I will be happy.....

Finaly I deserve to give myself a chance for a trial.. Nothing to loose But the guy " Gleason Gary " is the only man who is having spinal cord Tumor online and get benefit from this machine... Let the time and reported cases in the near future decided the value of the machine, please patients lets make this page a record for scrambler therapy (calmare) so we can advise next generation and guide them to the true...
The trials posted here will be Judging this Machine..... I hope it will Judge Positive to get Benefit, But nothing else the true will decide and Judge...

Peace and love..

[billanschell]

Like Peaceandlove, I saw the 80% success figure. But there's a documented clinical trial that took place (at the Mayo Clinic, I think) that put the success rate at under 40%. Still worth a try, I figured. It will be helpful to hear if Peaceandlove has a better result than mine.

[peaceandlove]

I forget to Highlight a very important point regarding Gleason Gary. He posted that "" Electrodes surround the incision site and for one hour a day for 2 weeks "" This statement is totally wrong, I checked with famous practitioner of Calmare Dr. Cooney in New Jersey and he say to mee that electrodes will be placed on extremity area of pain and not around the incision. So I believe that this statement expose the possibility of Gleason Gary being a salesman....

Peace and Love..