Ada.. Hi I am so glad your surgery went well last week and lets hope they can get things back to better than your normal soon. I am not very familiar with a pc or pump, but I know someone who moved to costa rica to get the drugs he needs at the higher doses he needs as he was not getting it in the states through a picca? same thing I think as a pc?

Hi Vic.. so nice to see you posting.. I hope that you are feeling well these days my friend, ok now I feel realy dense is there a device in yr chair that helps you? a pc? is that not like an external pump?

I will research it later but I saw your posts and had to ask cause I am curious about this heavy superchair and I miss you both when your not posting

Sandra

Hi Sandra,

My chair is just a plain recliner chair. It affords me the greatest comfort possible. and avoiding pain is usually my primary goal. The problems that force me to live in this recliner have nothing to do with my RSD: MRIs; EMGs and a C-T scan show this pain is the result of spine and back injuries from the assault that also led to my RSD. The chair isn't that heavy, but it's too much for my wife or me to try to move.

I could have had a morphine pump put in years ago, but wouldn't consider any surgery at all: I'd already had two botched lumbar laminectomies even before these most recent injuries, and wouldn't even let my neurosurgeon touch my back. And I trust hime; he was a professor of neurosurgery and is now chief of neurosurgery at a good hospital.
Neurosurgeons do surgeries. They operate and then they return the patient to the pcp; they never keep patients very long. He should have dropped me when I refused surgery, but he kept me as a patient so he could testify at my w.c hearing. He knew his testimony would make the difference between winning and losing. Docs like that are hard to find.

I've been his patient for more than 10 years now. He's stuck with me because my w.c. settlement agreement specifies that they must pay for anything he prescribes, it doesn't say they have to pay for anything any other doc prescribes. He's the main reason I'm still alive and he knows it. so he's stuck with me. I'm a Chinese obligation.

Anyway, I finally realized that oxycodone is making me miserable, so I asked him to trial the morphine pump, he wrote the scrip, and now I'm just waiting for wc to run out of excuses for stalling. They know they will eventually have to pay for it. but wc companies always stall as long as they can.

I'm really hopeful the pump will change my life. My doc says it works better for spine injuries than for RSD, and I've read several posts that talk about real relief from RSD. That gives me extra hope.

I haven't been posting, but I've been working: I'm writing a series of posts that explain my hypothesis that RSD is an ischemia-reperfusion injury. I want to finish all of them before I post anything because I've run out of steam in the past and ended up not finishing the job.

This will be my last major effort to write about RSD, and I plan to let Allen finally create a website where I can call my posts "articles" and make them available to a wider RSD audience. I have written half the posts already, and I'm confident that I can finish them this time.

Anyway, that's what I'm doing right now, and it's taking up almost all of my energy. Writing replies uses energy, but sometimes I need to talk to someone, and aside from family, the only people I talk to are here at NT, so I'll keep posting once-in-a-while.

When I wrote pc, I meant my computer; sorry for the confusion...Vic

Thank you for your kind words. I am glad that I have made such good friends on the forum over the years like you.

What I am talking about when I talk about a VNS is an implant for depression. I had it put in in April and we have to keep turning it up and down.

If you are asking about a pain pump then I just wanted to say that if I were going to have anything put in for my RSD it would be the pump. I realize there are a lot of success stories for the SCS but I have never wanted it due to what I have seen from it around here and on the forum.

The nurses at the hospital where I had my surgery were talking to me about going for the pump for my RSD. They were so up on RSD, it really surprised me and made me happy. From what I see nowadays, I think RSD is becoming more known and studied and more Drs. are taking it serious.

I was told at the U. of Co. that I didn't qualify for a pump due to me having Central Sensitation Syndrome but other Drs. have told me that that is just not the case.

At this point, I am doing good. I am pretty much in remission thanks to blocks, therapy, triggerpoint injections and meds but as I said, I think the pump is a good option for the RSD.

Vicc, I so hope you get it and that it does what you are wanting it to do for you. You deserve the best and to get better as do you Sandel.

I don't know about the doses with the pump but if you do decide to go after it make sure that you have a Dr. that will ride out the whole trip with you when you get it. I have heard of people getting it put in and then the Drs. just quit taking care of them. RSD is time consuming and some Drs. don't want to give that time it requires.

Don't ever give up at getting better Sandel. The stronger your will, the better you will get.

Ada

Vic,
Many thanks for telling us about the pump, I hope all goes Ok for you (I'm sure that it will), If I was you I would have got the pump when you were first offered it - you might have being better by now, but I know how hard it is to have surgery when you have RSD, due to the risk of the RSD spreading - but please don't worry I'm sure it will be Ok.
I hope all goes Ok with the research too
Take care and keep us posted
Alison

Hi Ada,

First, the doc’s office called today and I’m scheduled to begin the trial on the 9th; the nurse couldn’t tell me whether it would be outpatient or I will be admitted, which w.c. won’t like at all. My doc said he wants me in the hospital during the trial because my weight is so low, but he may not get his way. I’ll find out before I go in.

I absolutely don’t need to worry about my doc dumping me; he’s a neurosurgeon and they don’t keep patients for long; especially when the pt refuses surgery, but he’s been my doc for 11 years. I went to see him after a wc whore (a neurosurgeon) wrote a report saying I was not only faking my current injuries but had faked disability following the two botched spine surgeries in 1979; my doc knew I needed a n.s. of his stature to refute the lies, so he kept me as a patient.

I kinda stuck it to him later on, making it part of the wc settlement agreement that they must pay for anything he prescribes and if they refuse to pay, they have to pay for my atty even if we lose. I became a Chinese obligation, but my doc says he doesn’t mind.

Any n.s. who sticks with a pt when all he is doing is medication management is not going to bail out after his patient starts getting better.

Ali,

you’re right that I should have gotten the pump years ago, but my doc told me then that even though he was sure the risk was minimal, the scar tissue and damage the first surgeon did had changed things in exactly the same spot where the catheter would be placed, and that increases the chance that something can go wrong. Things went wrong in both of my back surgeries, so even minimal risk seems huge to me.

I’d probably continue with oxycodone, but I’ve reached the point where I need to take one every two hours, and that causes severe sleep deprivation. I can’t remember the last time I slept more than 3-1/2 hours, and that doesn’t give me enough REM sleep; even if I sleep 12 hours a day. If I take Xanax to sleep longer I wake up with a terrible drug hangover and severe pain that takes hours to resolve.

I reached the point where I have to do something, and the pump seems to be the answer, despite the risk. So, I’m hopeful, but frightened…Vic