Thursday, April 09, 2009 simpliewen asks

Q: I just had the medtronic pump installed! 3/18/09 NEED HELP !!!!!

I have been looking for a place to find out information about the medtronice infusion11 #8637-20 I just had one installed three weeks ago. I am a disabled nurse and did a lot of research. I read and meet personally many people who where glad they went through with the surgery.Infact I never met anyone who were sorry. They say they just had to be patient. One women took one year to get the meds right. What I notice is many negative questions about recalls and only questions dated as early as 3-08. I have been in pain so many years and was on MS Contin 30 mg 12 hr morphine plus many other drugs, I was ready to do anything to get my life back. The outside trial was 3 days in a row. The second and third days where fantastic. However, I have many questions now. I have fluid collecting around the pump and have not gotten much relief yet. I have also tried to get information from Medtronic , who supposedly has a 24 hr line and have not been able to get much of anything. Even my pain doctor seems to be unavailable and his nursed don't seem to know what is going on. I need to worry about sleep apnea and what other meds I can take. The surgeon who instilled the pump just informed me the pump only works for the waist down. My pain doctor said it should help with all over pain. Once again conflicting info. Also, I did not know about the real dangers of the infammatory mass.

As I said, I would love to hear from some recent people and also some positive feedback.

Wendi Allen

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Answers (4)

Karen Lee Richards, Health Guide

4/ 9/09 3:35am

The very best place to get answers to questions about pain pumps is on our forum. There is an excellent ongoing thread entitled “Willing to share experience with intrathecal morphine pump implant” that was started and is maintained by Bob Englebardt. It's a pretty long thread, but rest assured your post will be read and answered – usually within 24 hrs. If you don’t find an answer to your question already there, just click on the last page and post your question. Here's the link:
http://forums.healthcentral.com/discussion/chronic-pain/forums/a/tpc/f/7251032/m/8491036

(Note: If you've never been to the forum before, you'll have to register separately from your registration here on ChronicPainConnection. You can, however, use the same e-mail address and password if you like to make it easier to remember.)

simpliewen

3/12/10 4:17pm

As I look back I see I wrote a year ago and am still struggling with this pump and PAIN. It was installed a year ago and I was questioning it then. We have tried morphine with clonadine, dilaudid with marcaine and not fentynal. I have not been able to sleep in my bed since the pump was put in. If I sleep on my side a nerve pinches in my hip and leg. They just changed the dilaudid to fentynal last Friday and I went through withdrawl all weekend. It was awful. I am not thrilled with my doctor effects since the pump was put in. After he read it he tossed it at me and said, "You have irritated me." There is nothing I can do about it because there is not other doctor.

After a year my brother pointed out to me that I appear to be more depressed and emotionally shutdown. I think all the hopes with this pump and not knowing about this ahead of time has caused it. I do not know how much farther they will go. How many more meds are there? I used to laugh and enjoy people, now I have become a recluse. I sleep in a recliner-if I can sleep at all.

I just turned 60, my kids are grown and I can't do the things with my husband that we planned to do. I DON'T WANT TO DO ANYTHING. Oh Yeh!!! I am on 2 different antidepressents.

I raised 3 sons-two of the youngest were bi-polar and suicidal. My oldest is a Lt Col and pilot in the Army. He is 40 and has become one of my biggest champions. The middle son decided I was a "Drama Queen " and has not spoken to me in 5 years. He has my only grandchild and lives 15 minutes away.I still haven't gotten over it.

I thought this pump was going to change my life and all it has done is make it more complicated. What kind of future do I have?

I wrote about chronic pain and families and got many wonderful replies. I was to thank everyone for their help. I see now that many people out there are worse off than I am,however somehow it doesn't help. Can anyone help me with this pump thing? Any suggestions? Can it still work for me or should I give up?

To all those who wrote to me and reads this-much appreciation and thanks. It is hard for me to reply offten when I don't feel well.

PS I read something recently-written so well-exactly how it feels to live with chronic pain even when it is medium pain that is constant. If anyone knows what I am talking about, can they send it to me or tell me where to find it. I want to give it to my family and friends.

aliveatlast

3/13/10 2:30am

I have the pump. I do not have your normal medication in the pump. What I have has turned out work. It has cut my pain down by about 70 per cent.

34with6surgeries

12/12/10 8:14pm

Wow! I am in the worst pain I have ever been in even with 6 surgeries since 2005. I thought the pain prior to those were pain..I was soooo wrong! This is, I swear, the type of pain where I just want to cut off my body from the belly button area down. My option is a fusion, and I consult with my surgeon on the 5th of January. I had a neurostimulator for 4 months in '09 and believe it completely screwed my nerves up, and so does my pain specialist. It was from Medtronics, so I am a little aphrehensive to have any of their products implanted in my body ever again. Is your pain pump from Medtronics? Will you share what meds you have in your pump? If you don't want to post you can email me. I understand if you don't want to say anything...but we don't know each other at all. Just need to weigh out my options, and my pain specialist says I am on the strongest pain pill on the market and strongest does and legal amout to prescribe to take. I am at the end of the road here. Thanks for any info you can provide. If you want to email, let me know and I will give you my address.

34with6surgeries

12/12/10 8:16pm

I was replying to aliveatlast. Sorry...I am new at this...bare with me please. Thanks. :)

Hunter

8/ 3/12 2:32pm

Karen: Bob seems to think that everyone has abandoned his forum, but in fact, I can't get into it. The login feature doesn't allow you to get in there. Nobody has posted since 5/12/12 and he has stated that everyone has abandoned him??? I wish this would get fixed as I have many questions for him regarding issues with my pump.

osmike

4/ 9/09 10:51am

hey there fellow pumpster,

i have had my pump for i want to say seven years or so, actually, i'm on my second, and its sooooo much better than the first. i get refills about every three months (instead of every month). i had a spinal cord stimulator installed prior to the pump and on my sixth or seventh. i was taking 360 mg of OXY a day plus break thru's. the oxy's were wearing off after about seven-eight hours and i'd be miserable until i took my next dose....it sucked!!!! life was not good!!!! i was bed-ridden, couldn't keep food down, lost over seventy pounds... i was dying!! i was fortunate enough to have a wonderful neighbor that sent his dying wife's hospice nurse over to check on me and here i have this little elderly woman standing at the foot of my bed and she says to me"son, your too young to die, you need to get some pot"!!! i almost fell out of bed laughing so hard. i'm a 46 year old guy that has had a pretty decent life, but it had been YEARS (back to college days) since i had done that. IT WORKS pretty well for nerve pain, to the point that i have some "QUALITY OF LIFE" back. i'm up, out of bed, i put the weight back on, my family can actually tolerate me, LOL

back to the pump, it took a couple of appointments, 4 or 5 i think.

a few years into this, i made the WRONG decision to go to a "pain specialist" that tried a "cocktail" of meds in the pump to try to get some more "QUALITY".

boy was that a big mistake, but that is another story for another time. your a retired nurse, so you probably know better than most, our illness is something we'll have to deal with EVERY single day we are left here on this earth , make the best of it. baby steps before you walk and walk before you try to run and run before you try to jump, you get the idea. (the last two were for effect, i know they are out of the question, LOL) depression seems to be something that comes along with the chronic pain, so you have to deal with that too, for me it comes and goes. i try not to stay in the "cave" too long. it doesn't help anything, so just try to get up and walk. walking is good!!!! if i can answer any other ?'s, don't hesitate to ask.

dstdev

8/ 4/09 6:08pm

Osmike,

We have had a similar response to the pump. My quality of life is better, but my question is whether this is good enough or if we should expect more. Being able to stand and walk and enjoy family friends is one thing, but I am trying to decide if I should return to school/work or if that is unrealistic. What is your take? Does returing to work seem out of reach?

Nan from the Dunes

8/ 3/09 2:51am

I have had my pump for over 2 years, my tubing is as high as they could get it in the spinal cord. My major problems are in the cervical spine. I would be deathly afraid of living without the pump. As my degeneration worsens the break thru pain has increased and my funtioning limits have lowered. Pump is up to 15. Will need to have bolsters programmed in during next pump fill on 8.10.09. It is a shame your pain doc isn't informative and caring. Mine wants to know everything and fixes everything(that he can, unfortunately he is not God...although some days I think so) Insist on seing your doc when YOU feel you need to. If you can't find a doc that will see you. Ask around your professional coworkers, who is good along with who treats you good. that is the important thing. I also have a stimulator that the leads are up to c-3 and that helps also Do not stop searching in your area for someone who has a more patient friendly practice.

hawk

5/24/11 4:32pm

I have the pain pump and a spinal cord stimulator along with a fussion at l-4 l-5 l-5 s-1. The pump will take time to start working for you. Please give it time but also make sure that if the pain is bad that you are able to get it adjusted to help, they always start out low mine was at .015 when it was installed but the next day was changed by 35% and again a week later by 20% now I have 2 drugs in the pump dillitan and a novacain type drug to try and help. I dont know why you Dr is not replying to you or trying to help you, I do know that medtronics work directly with pain managment Dr's I know that they will send information about the pump to you but cant really help much more than that. The Dr is the one to make all changes to the pump and also remember that it can take time for the changes to take place mine is 115 hrs. for the changes to take place.

hope this helps you.

Q: I just had the medtronic pump installed! 3/18/09 NEED HELP !!!!!

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