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Toritoo
Regular Member


Date Joined Apr 2008
Total Posts : 184
   Posted 4/16/2008 10:16 AM (GMT -7)   
Hi All,
I have a pain pump that I had put in just about a year ago and when I had the test trial for it I couldn't have been more amazed. They used morphine for the trial and I can tell you that when I left after the procedure I had no, zero, zilch, nada pain. It had been so long since I had been pain free that I actually cried, tears of joy. It only lasted about 4 hours but it was enough to tell me that I wanted the pump for sure. I was on way too much pain meds and the whole point of the pump was for me to be able to tritate down on the orals and patches while going up on the on the pump. Everything was going great til I began getting headaches and throwing up all the time. It was the morphine, it had always had this effect on me put since the trial went ok I thought that things had changed. They hadn't.
The pm dr. changed the meds in the pump to dilaudid and the headaches and throwing up stopped but the pain came back.
Trying to get to the point here honest. I had to have another surgery (back) and of course all my orals and patches went right back up. Once again I am tritating down off those meds and going up on the pump but I've never had that wonderfull painless 4 hours or 4 minutes for that sake since.
Gramps, I know you had a bad experience with your pump, would you mind elaborating on this and if there is anyone else out there that has had a good experience with the pain pump please write and let me know.
Even with the pain pump I take 8 percocet a day, down from 10 and the fentnyl patches I use now are 50mcg. every 48 hours down from 200mcg every 48 hours.
I'm still in so much pain and I'm wondering how long it takes to get the effects I'm hoping for
if I will get them at all.
Any feedback would be appreciated. Thanks in advance. I'm out. Toritoo
 

Toritoo
Regular Member


Date Joined Apr 2008
Total Posts : 184
   Posted 4/17/2008 8:36 PM (GMT -7)   
sad  Well I guess know one has anything to say about this pain pump thing and that kind of scares me. Mine has been in for a year and like I said in my earlier post I'm in the process of tritrating down off my orals and patches and I'm a little scared about it. I mean I really had hope when I had this pump installed that I would be drug free, well oral and patch wise, and on my way back to some semblance of a normal life. Don't get me wrong I'm not looking for a miracle or anything but was sure hoping I'd be a little bit less in pain and able to get out of bed and get back into a semi normal life again. Anybody out there with words of reassurance or even things I might need to look out for. Is a year a long time to spend getting off meds? Am I being too optimistic? I guess I will just have to wait and see. Still here if anyone has anything to say but I am out for now.                                                                                       Torito0
 
It's been a lot of years that I've taken pain meds close to 20 to be honest and it scares me that I won't have any for emergency use if needed. While on the other hand I hope that something like Aleve or whatever will be good enough to handle my break through pain. I'm just saying.

Post Edited (Toritoo) : 4/17/2008 9:42:41 PM (GMT-6)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/17/2008 9:33 PM (GMT -7)   
Toritoo,
I really don't know much about the pump, but I certainly hear your anxiety. I hope someone with more knowledge responds, but I'd suggest searching other threads to see if there's already been a lot said. There's a ton of information on older threads.

Hugs,
PaLady

Toritoo
Regular Member


Date Joined Apr 2008
Total Posts : 184
   Posted 4/18/2008 10:10 AM (GMT -7)   
Thank you everyone for your help and Gramps I sure hope your ok now since getting out of the hospital. No need to worry about my expectations being too high, I realize and don't expect the pump to take away all my pain but I sure would like to get off the oral meds and patches and have a more tolerable pain level that allows me to do more than just lie around in bed all the time due to pain, Get well soon Gramps and take care. I'm sorry you had so many problems with your pump, I haven't had any of those problems and my pump has dilaudid in it and it seems to help. Although I'm still nervous about going off all my other pain meds I do look forward to the day that I can just take a tylenol or advil for pain. I'm sure my body would appreciate it as well. Thanks again and I'm out for now, Toritoo

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 5/11/2008 9:10 PM (GMT -7)   
Toritoo,
 
I just found your post and wish I had found it alot sooner. I too have a pain pump from Medtronic. Oh, I feel for you, you are on an awful lot of orals meds and having the pump at the same time.and you say its been a year. My own thoughts are simply this, your dr does not have you on the right mixture of pain in your pump. You are absolutely right, the pump is suppose to get you off all the extra medication. This came from my drs mouth not mine.
 
It took one year before I could honestly say the pump was the right thing to do. I was 1st given Morphine in the pump my dear dr forgot I don't tolerate morphine. I was ready to kill him for that one. He changed my meds to Dilaudid, Sufenta, Clonodine and another drug that I constantly forget the name of. I will find the name & post it tomorrow. I have Dilaudid 2mg for BT pain. The reason it took a year to get me sort of on an even keel is I have many other health problems, breathing is one, I am on oxygen now. I was only getting 10% increases instead of 20% because of my health issues. Finally my dr got brave after hearing me gripe and started giving me 20% inceases plus a bolus. I was terribly upset at one appt and outright told him I felt I had made a mistake in getting the pump because I really couldn't tell it helped the pain. That statement got his attention. I was doing very well and was not taking pain meds, I found my muscles relaxers were much more effective in helping with the pain. Then this spring came with beautiful days and my activity level changed alot so did the pain level. I was working a little in the yard, and it was like everything got aggravated. So another increase better be the plan tomorrow when they change the meds in my pump. I took a terrible fall last Sunday and I am worried I have done some damage because the past week has been me in bed in severe pain. My pain pills & muscle relaxers are not getting there. I don't lay in bed, never been good at that. My dr tels me I am still on a very lose dose in my pump and I have plenty of room for increases. By the way, some time ago he had my concentration level changed in my Dilaudid to 15% and that helped alot.
 
I think you need to sit down and have a heart to heart with pump dr. Best of luck. Don't give up on the pump yet, I just hope your dr knows his stuff about it. My dr says there are lots & lots of different meds that can be put in these pumps. Hugs, Susie


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 5/12/2008 10:19 AM (GMT -7)   
Hi Toritoo & Gramps,
 
First of all Gramps you are right the medication that I can never remember,lol, thank you. I think you may be onto something with Toritoo's pump, something may be not right with the catheter. Toritoo what does your dr say about the amt of orals you are having to take with your pump? Toritoo, I am afraid I would have to demand that they check my catheter out out as well as my pump. When you go for refills does your nurse tell you that the amt of medication he/she withdraws from the pump is the correct amt., mine always does. This is all documented in my chart. She says if there is too little medication or too much medication that is her alert something is wrong with the pump.
 
Gramps my trial was like Toritoo's and let me tell you it was heaven not being in that horrific pain for a short period of time. Yes, I did ask if the pump would make me feel the very same way and my dr told me no. He said the only way he could do that is to turn me into a zombie, so he was honest with me. He did tell me it would help get me up and being mobile again and having some sort of a life w/o being in severe pain. So far, after getting the correct increases it did that for me. Prior to my pump I spent more time in bed than out, with my wacky system I was unable to tolerate most oral meds and if we found one I could tolerate it was very short lived. Mentally I was becoming a wreck, my family was so scared for me because I had always been very active. I had been thru two knee surgeries 3 wks apart, then 10 days post op tore all the tendons & ligaments in that knee. My ortho said 1 yr to heal with bracing, he was right. I did have the Supartzz injections in my knees after surgery and it took along time for me to tell if they helped and in the end they did. I can put my weight now on both knees and bend them somewhat. Knee replacements are next, arthritis has not been kind to my knees after 5 surgeries.
 
Well, I am off to see the wizard, will let you know how things go, Susie


Toritoo
Regular Member


Date Joined Apr 2008
Total Posts : 184
   Posted 5/12/2008 1:35 PM (GMT -7)   
     Thank you thank you thank you all!
 
I think this was one of my first posts and a big part of why I joined this forum/site. I needed someone to talk to that had anything to offer about pain pumps and what was "normal" with them. However I found so much more and it kind of slipped my mind for awhile so needless to say I'm so pleased that you all replied and offered me your expierences and it has been very welcomed.
 
After reading through I wasn't feeling well and had to take a break although I did want to say thanks to everyone. I have a lot to mull over and a lot I'd like to say but just not right now, as I'm sure each of you can understand that I'm just not feeling well, nervous and just icky and of course the pain you get my drift. Will talk to you later but for now I'm just up to reading all the forums and catching up. Talk to you soon.  
 
Toritoo
 
by the way I'm a woman Gramps just wanted to let you know.
 
  :-) Hugs to you all.

fieldgoal
New Member


Date Joined Apr 2008
Total Posts : 13
   Posted 5/13/2008 2:21 AM (GMT -7)   

 Dear Toritoo and gramps and others,

I'm kevin and I have had the medtronics pump, ( new one 40ml) and I have had poor results after going from morphine do dilaudid,with clondine and buprivicane. I'm on 70mg/ml with a dosage of 27mg per day on the dilaudid .  the other two are minamal.

My first concearn is that i've read that pumps with a concentration of 10mg/ml of dilaudid. it's 20mg/ml if you are on morphine. My ortho warned me two years ago that the tip of the cathader can develop granuals and mold to the spine, resulting in a pump remoal and spinal surgury. Though my pm dr. who is the best in florida imho says there is no risk and dismissed those reports as inconclusive. To be safe every year since I have had the pump, I have had an MRI done and they were all ok. Except for the fout hearneated discs they found. Anyone who has heard about this and if you have any advice. I'll thank you know for your responces.

II also want to titrate down on my oral meds, fentora 800mcg, 1 per 90min. Part of the reason I have this ridiclious tolerence at 31 years old was the 15 knee surguries on my rt knee and 2 on my left. I was a football player at a top division 1 school. I was a two time high school All-American who was expected to start my first game. I played on a torn knee my freshman year and then had surgury. I was only able to play three years. I abused my body and I paid for it , no regrets. The last 2 surguries I had was a radical knee fusion, that got itnfected with MRSA. So I had to the pump installed to save the fusion. The infection caused the hardware to bend the wrong way, so I had to bear weight and push my femur into my knee cap ,and then into the tip/fib. It took me 18 months of 5 day a week rehap to push the bones together. They then took out the hardware, but the infection heald inside the screw wholes in my femur. The anti-biotics didn't take so the infection eats away at my femur and has spred down into both my tip/fib. I also have RSD stage 3 in my right leg. Since both the infection and the RSD in degenerative, I am having a hard time lowering my meds. Like most of you its hard to balance the amount of pain you will deal with v. meds and their side effects. I am most scared of being in intolerable pain for the next 50 years. The only new meds I have been recomened was prialt, ketamine, and sufental in my pump. Orally their is nothing stronger btp medicine that i have found other than fentora. I have been on everything else from oxycodone- dilaudid.

Sorry for the long post, all advice is greatfully apprecieted.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 5/13/2008 2:31 AM (GMT -7)   
Ok, I went to the wizard and he did x-rays that we saw on the screen and it was so cool. For the 1st time I saw my pump and the way the catheter was threaded from start to finish. It was amazing to say the least. It amazed me how small the catheter actually is, I sure had something else in this crazy mind.lol This is the 2nd time my pain dr has refiled my pump, he did it the last time to and he cheats. He uses this xray machine to find the place to insert the needle, but he also deadens the place too. I had 2 cc's left in my pump which is what I should have had.
 
Now the killer, I had to lay on this flat small table that he does his procedures on. The little xray tech girl tried to help me get upright and that set off an explosion of pain like I have never felt in my life. I honestly started screaming and crying, well my dr ad another tech helped her get me upright and off the table very quickly. Oh, I got sick at my stomach and threw up right there. I started shaking from head to toe because of the pain. My dr gave me an immediate bolus and 20% increase. Instead of taking my Zannaflex ever 4-6 hrs, I can have 1 every 2 hours. He also called in another script of something to help with the spasms but by the time I got home I was in no shape to pick it up. He said I am suffering with severe muscle spasms. I have an order to get flexion & extension x-rays on my back, I will do this at the hospital when I have my Remicade infusion on Wed.. All I know is this, I never want to go thru the kind of pain I did trying to get off that table. I am not a screamer or cryer but let me tell you this afternoon I became one and it was so embarrassing to lose control like that. 
 
Toritoo I am so glad you were able to read my post. I am so sorry you are feeling so bad, but I totally understand. It still amazes me what we CP peeps will go thru in an effort to reduce our pain to a level where we can function and have some sort of a life again. We are very strong people but sometimes the pain can chip away little pieces of us. My goal is to not let much of this be chipped away.Will get off here now and hope to hear from you soon Toritoo. Hugs, Susie

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