Pain pump, I have one, how about one for you?

It's actually been 3 years and I'm doing great. When I'm seated I usually have no pain at all. I walk with a cane or a walker and the further I go, the more pain I have but it still nothing to compare with what I used to seal with. I can use a recumbent cross trainer for as long as I want. I shop with the aid of a grocery cart. Occasionally I experience some back pain if I do too much but I am also limited by having only one functioning lung. At night the combination of compression, toes to crotch, on my left leg causes some neuropathy but I can control that with amitriptyline, 25 mgs.

The pump has been a miracle for me but you need a good doctor to monitor it and refill it every 10 to 12 weeks. It's a simple 10 minutes visit, one needle stick and a few minutes for the doctor to download then info from the bolus, (remote control). Sometimes the med wear out and loose effectiveness after the 8th or 9th week but it's not a big deal.

I highly recommend the pump. I would caution you to get a good surgeon who isn't going to pass you off to a tech for the refills. I would also recommend getting GeneSight testing or something equivalent to determine which drug you should use. Following that you should have a test where they do a spinal tap to inject a small dose to your spine to make sure it's the right drug. GeneSight testing can tell you which drugs you can metabolize as well as if you metabolize them more slowly or quickly than the average person. Genesight testing can be learned about at their website. Other companies are getting into the business as well as Mayo Clinic. GeneSight testing will also predict which psychotropic meds and antidepressants you'll do best with. Any Doctor can register with GeneSight for free over the phone, 15 minutes. You submit a swab and then get a report back which you discuss with your doctor. Keep a copy and have it put in your medical records. Doctors with a large god complex don't like this sort of thing. They think they know best but they are really going on what worked or didn't work for other patients. If they had given me morphine instead of dilaudid the whole thing would have failed. Morphine gives me almost no relief at all. The speed at which you digest the drugs is also very important as metabolizing very slowly can lead to overdose and going very quickly can lead to underdose.

The pump is most appropriate as palliative care and by that I don't mean you are terminal. It does mean that your not going to get better. You are going to be in pain as long as you live. I had to visit with a Psychiatrist and a Palliative care specialist but I'm not sure if that was for the pump or just for becoming a patient at the U of MN pain clinic. I couldn't have the pump until I was free of infections for one year and I had a bunch of them brought on by cancer which was how I lost the lung. Not from the cancer but from the chemo. You do have to undergo surgery every 5 to 6 years and at least the first time they have to thread a catheter up your spinal column.

Before I had the. pump I was given very large doses of oral opiates. Surprisingly, there comes a time when no dose is large enough to control really serious pain. I was taking 230 mgs of oxycontin, 32 mgs. of dilaudid and 20 mgs. of valium and was still in bad shape. It didn't get me high as it took years to get to those doses but it did effect how sharp I was and the constipation was awful. At 4 mgs. of dilaudid per day directly into my spine, I get the affect of somewhere between 400 and 1200 mgs. of dilaudid, which would surely kill me if I ate it. Different docs vary in how effective they think it is. Mine says 300 times more effective and I believe him. He is a brilliant researcher in deep brain stimulation.

Don't hesitate to ask if you have any questions. I do think everyone should get Genesight testing as you never know when you might need those sort of drugs and I'm sure you've heard the horror stories around find the right drugs.

Good luck

I looked on the GeneSight webpage and I did not see any pain medications listed as drugs that they test genes against. Just psychiatric medications.

It's in my report. Maybe thry've changed since the opioid crazieness. I'd still make sure to be tested before surgery. The spinal tap.

After 13 years of searching I sought to combine fentanyl to the methadone I was on. Zero pain for 14 years. This whole thing has turned into a joke. I may just go home to be with my Lord. I have to Dysphagia, and all I have to do is stop my respiratory treatments. I'm way beyond tired of this all. Thanks for sharing, and I wish you all the best.

@rsj
This is absolutely heartbreaking my dear friend. It just is so mind boggling that the government has so fouled up the ability of people like you to get what they know they need just to continue to have a somewhat tolerable life. I do not begin to judge you for any actions you take. I just find it so sad that it has come to this for you when there is no need for it. I see the reason for your tragedy as well as others as being due to the shear ignorance of people. This whole drug war thing has got to be dismantled and refigured out. Too many good people like you are having their lives ruined over it. Best, Hank

very well stated, thank you, I am new to this pain problem and already suffering because of the screwed up government control....I would hope that there would be some movement by us (those who are suffering every day) to get this process corrected...thank you again......

It is because of the stigma caused by the war on drugs that few of us speak out when the government crafts these rules that threaten our very lives, as we can see from the comments on this forum. Only on forums like this do we feel we can voice our thoughts without fear of reprisals. It is vital that all of us who suffer, protest and make our opinions known to our government representatives. There is new legislation being discussed now(I saw this on another site), that will require Medicare patients go through more stringent 'prior authorization' steps in order to get things like a scs, and other therapies. It's truly frightening to me, who has battled chronic pain for nine years.

the government is creating the very thing that fuels the problem they were trying to fix "the street market"

I'm sorry but no one gets a pass on speaking out. There is no excuse for not speaking out publicly against that which you think is wrong. There was a War on Drugs not on free speech and if you don't have the courage to speak up you're going to get what you don't want.

If you believe that your doctor is practicing medicine based on some metrics that the government has developed rather than based on your physical condition you you have grounds for a lawsuit.

I pointed this out to my provider and their efforts to change my treatment stopped cold.