Has Anyone been weened off pain pump and had it taken out?? I want mine out NOW!!!

Greetings everyone~
I am new to the forum and this is my first post...a post I pray generates some response. I had my pain pump put in over 2 years ago. What a horrible decision that was. I was told it would cut my pain way back and I may need a low dose pain med 4 just a short time.... then I would need "Nothing" but the pain pump!!! Two years later I am worse with the pain and my neck and spine have declined big time.

I had a fatty tumor taken out of my upper right gluts and the surgeon could clearly see there was another one under the pump which is placed on my upper left gluts. I originally had the pump placed in the abdomen and had it moved within the first month cos it was cutting into my ribs and looked like I had a something growing out of me. Anyway, I have been experiencing more and more pain and trouble with the pump in the last nine mos, I am barely able to walk (I was walking fine when the pump was first put in). The muscles in my back are like a piece of concrete. I cannot even describe the pain I live with having a pain pump in.

They use dilaudid in my pump and I take three 30 mg. Oxycontin IM per day. I started to see a massage therapist hoping that would help an she is so frustrated that she has not been able to give me any relief. I receive Bowen treatments, which is new to the United States. I urge people to go to youtube to learn about Bowen. I have even hired a personal trainer to help me. Nothing has worked. Like I mentioned my pain is worse and overall this pump has caused me to decline big time. Does anyone know of any PM doctors in Michigan who know the care of the pump, how to ween me off etc... I live 100 miles north of Detroit.

The PM dr who originally did my trials and talked me into the pump, knew how to ween me off and basically was the expert is no longer there. He moved out of state. The colleague who was nice enough to take over doing my fills knows nothing about weening me. He and a few other docs at Michigan Neurology were trained to do fills only. At my last fill on Aug. 30th when I expressed my urgent desire to be weened off and get this piece of titanium out of me he told me he was not going to continue to manage my pump, or my orals and wants me to find a PM doc who knows the Medtronic intrathecal pain pump like a pro.

I honestly think he just panicked when I told him I wanted it out. He has seen the huge decline in me. He does not agree with having pain pumps put in and would have never suggested this to me. So his involvement is no longer something he wants to deal with.I don't know why this office has not replaced the doc who knew all the ins and outs with the pump. I am in a real bad situation here. I need a referral and fast. The pump is not due to run out until November 30Th. PLEASE if anyone can be of any help I would be grateful.

Kindly~
Angeleyez St. Clair Michigan



(I took the liberty of splitting up your post into smaller paragraphs, as it makes it much easier for our members who suffer with poor eyesight and tracking problems to read. Please consider splitting up future post into paragraphs of 4 to 6 lines if possible. We all would greatly appreciate this courtesy.) Thank you so much! SE

Post Edited By Moderator (Screaming Eagle) : 9/2/2012 10:24:53 AM (GMT-6)

Welcome to the boards...We are sorry to have someone join our "family" because of chronic pain...but as mentioned...it is a wonderful place to get support and empathy.

I also do not know much about the pain pumps except for reading about them from some of our members who have them.

One of the moderators...Straydog, has one herself and she ran into a problem the first time around as well. She has always said that the pain pump is only as good as the Dr. who is managing it.

I would recommend though, that you do try to find another PM Dr. asap. As your Dr. know is saying...find one who is completely knowledgeable on the Medtronics pump and will help you figure out what to do.

Do you think you would want to keep the pump if you find a great Dr. who manages your pain better? Or are the side effects just too awful that you want it taken out no matter what and moved back to oral/patch opiates?

I'm a bit confused on who needs to provide the referral for you? It sounds like the Neuro you see now is encouraging you to find a PM...are they not willing to help you do this and provide the referral?

How about contacting your insurance company and asking for PMs within the area....I would think at this point that even driving to Detroit or another major city would be worth it if that's the only way to get one who can help you.

I'm sorry you are going through so much...I hope that you can find someone soon!...

Being that it's a holdiay weekend...it may be a bit more slow on the boards....so please don't see this as disinterest...

Keep us posted on how things are going...

Hello Angeleyez,

Welcome to the CP forum of HW. Sorry to hear of all of your issue with your pain pump.

Have you tried to contact Medtronic for help? They should be able to tell you all of the PM drs they work with in your area. At least narrow your list down so you arent calling places who arent familiar with it. Maybe you can find someone that can help you to make it work properly for you and avoid removal. When working I hear they can be great.

I wish you luck!

Hugs,
Shell

Edit: Sorry, SE, just read your response,lol! Just been one of those days I guess.

Hi Angel, I would contact Medtronics ASAP as suggested by the others. I really hate hearing what you have gone through and are currently going through. I can only tell you by experience a pump is only as good as the dr taking care of it. If the dr does not know the medications, actual doses to be used in them, and the correct medication combos, then the pump is useless as you have found out. Your dr will either make your pump a success or a failure. Rarely will a patient not need meds for BT pain, even with a pump you still have BT pain. Something else I have noticed is drs that only use one medication for pain control, just does not work well at all in combating the pain. I have 4 different meds in my pump and after getting a new dr it made all the difference in the world with my pain.

The dr treating you now is responsible for your care until you can get another dr,. Call the medical board in your state about this.

Good luck.

Emfree, based on my experiences with all three of those meds by oral/patch, I would whole-heartedly recommend Dilaudid (hydromorphone) particularly since the pump obviates the one downside of hydromorphone, which is its short half-life. I've tried pretty much every pain med on the market with only a couple of exceptions (Buprenorphine/Subutex/Suboxone, Demerol and Nucynta) and I consistently find hydromorphone to be superior in my opinion; least side effects, best pain relief. Levorphanol was one that I liked a lot for other reasons, but I had even more problems with constant dreaming/nightmares and related poor sleep quality than I did with morphine, which was already bad enough.....with hydromorphone, no nightmares, no nausea, no sedation and excellent relief.

Just my two cents....FWIW. I hope you get good results from the change in your pump configuration!

your new doctor is a punk if a. only give you 30mg oxycodone IMM 1 apprx. every 8 hours and b. when you start to comment on things getting beyond pain you can manage with bad muscle spasms and his response is i agree; i'm not managing your pump! wow. i am just considering the pump because i have had long periods with high level pain and muscle spasms and for the first time in my life,(10 years with chronic pain), the relaxants are not helping like Soma, Ativan, Valium, Klonopin, Zanaflex, Flexeril and my breakthrough pills Dilaudid and Oxycodone IMM are not taking anymore than 20% of pain off my 24/7 cycle of spinal and nerve pain. i also take Morphine Sulfate ER 200mg 2 times per day and still pain that is big at times. i have been under the impression people with the pump still need short-acting breakthrough/activity related meds, some people hundreds per month. also can they not use a muscle relaxant like Baclofen or Clonidine in your pump. a local like novocaine called Ropivacaine that is long acting plus some i think some NSAIDs and other potentators like Clonidine which is a cousin to Zanaflex (tizanidine), Decadron, and Baclofen is a real good med for chronic pain. anyway i wish you the best with you decision.