Hi everyone sorry I have not written in so long
As some of u know I was becoming more and more depresses . Three years after the coma treatment in Germany failed, not to mention I almost died,
I tried every clinical trial there was my last med routine was
3 OPANA a day 40mg
5 OxyCodone
Baclofen
Etcetera some 12 additional scripts.
I almost gave up last December almost a year ago to today I just did not want to be on this planet anymore
Because of losing my house and spouse (kinda of rhymes!like a country western)
I decided to take a good look at the pump, Medtronic infusion pump not Stimulator
Against all my doctors wishes including a big no from Philadelphia I went ahead and on January 5 had the surgery
It's a long story between then and now however I have gone from 7 days a week at level 8- level 10 pain for at least 15 hours per day ; all the way down to a pain level of "0" for almost all day.
If I overdo and flare it never goes all the way up, usually not higher than a 5.
If I rest it comes down easily,
For those suffering at the level I was with full body at those levels of both pain and those amounts of narcotics I want u to know u do have an option.
I'll share more soon. God Bless cz

Congratulations CZ!! This is what my wife who has RSD may resort to. She has went through hell with doctors and meds and believe it or not has stopped all her meds on her own. She is still in a lot of pain but she claims the meds did nothing anyway not to mention the drug seeking treatment she got from most doctors.

She has mentioned some time ago that the pump would be attractive when she is older. I've read that many doctors do not want to fill these pumps. That support for them wane after some time has gone by. Can you tell us why the doctors were against the pump?

Again, congratulations on being pain free on the most part. I can not imagine going through an enormous amount of pain for a decade with little relief only to find yourself pain free often. I bet you slept a week!!

jim

I wonder about the cost of the pump - since I am on Medicare now since I am on SSDI - and also the cost of the meds.

I don't want to try a SCS - to many horror stories, and a TENS drives me into a dark place by increasing pain.

Oral opiates don't even take the edge off the RSD for me. They help the fibro a bit but not the RSD.

I figured the pump might be the only option left to me, but don't think I can afford it.

Hi CZ,

That's FANTASTIC !

I'm so happy for you. As much as we would all like a long term cure, or long term break on the pain, I've found even a brief period of low/no pain is critical. It's so easy to become overwhelmed by the depression that most of us with chronic pain of any type have to deal with. A low/no pain period gives us hope. Hope for a better future than the mire we were in before seeing that reason to hope for more.

Just one of the problems we all have to deal with is that all of the options that might allieviate our pain do not seem attainable. I feel blessed right now with a neuro who is knowledgable enough and brave enough to order sufficient narcotics to manage my current pain. An unsubstantiated sanction by my insurance company on another matter for this doc means that my meds aren't covered and I have to pay privately. I can't find a doc who is in my insurance plan to order the meds.

Many options that have been effective for some.....like adequate pain meds, ketamine treatments, or an implantable pain pump can be very difficult or impossible for some patients to acquire. Docs who aren't knowledgable, insurance plans who decline authorization, WC refusing recommended treatments, no insurance.....all can impact our access to treatments that could help.

I'm so happy for you that you prevailed over the docs who didn't agree and have found some relief. I hope that brings you peace in life.....and hope for a better future.

Daylily.....excuse my memory which is far from what is was and should be. Do you also have TOS ? I thought you were a TOS/RSD/fibro 'match' with me.

My TEN's would help me a lot with my TOS/RSD spot, but the RSD sweating makes it impossible to keep the leads on most days.

Myofascial release several years ago really opened up my ROM and I am able to keep that with gentle stretching. That has improved my L arm symptoms, so I am not a candidate for surgery for TOS. The original TOS pain (just to the left of T1) is my RSD spot too.

Oral opiates are my savior on the TOS/RSD. They do nothing for my fibro. Oral anti-inflammatories, menthol gels/rubs, Neurontin, and Cymbalta help with both, for me.

I'm anti SCS too after all I've read about it.

What is your medicare add on insurance ? I'd check with asking them if it's covered. I assumed that a implanted pain pump would definitely be covered by most insurance. It's not a newer/experimental treatment like ketamine. I imagined the biggest problem would be finding a doctor who would recommend it.