To Tom in Pain

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Date Joined Feb 2003
Total Posts : 16607
   Posted 8/13/2008 5:22 PM (GMT -6)   
Hi Tom,
Its Susie here. I noticed in one of the posts you said you have had your physch eval for the pain pump. When is your dr planning on doing the trial? I do hope its soon. Tom, I must say I have high hopes for you with the pump. From what you have described with your pain you sure seem to fit the bill. I know there has been alot of negative talk on the forum but there is also success stories as well and I am a success story. I do hate to see people slam something they have no idea about, its much better to always get info from a person that has actual hands on knowledge. I know where I was at before the pump and I know where I am at now. In many ways the pump has given me life back. I do still have some pain, but it is a tolerable type of pain that I can certainly deal with after what I have been thru and what it was like before.
I have looked back at my EOB from BCBS and it looks like the pain clinic bills around $1,500 for a refill. Of course, they are in network with my insurance company and they have a set amount that they pay the provider. The pain clinic does not bill me for any difference owed. I know Medicare pays for pumps and refills too. They too have an amount they will pay and then the patient pays 20% of what Medicare allows for the total charges. Its not as expensive as what one might think. I firmly believe drs offices and the hospitals jack up their costs, so they can show the write off as a loss at the end of the year. It legally gives them a way for a write off for tax purposes.
I think I told you before I have a mixture of four different medications in my pump. Dilaudid is my pain med in my pump. In the beginning its all trial & error until they get the proper doseage titrated up and the correct pain medication that works best for you. I have a truly wacky system that does not tolerate medications well at all, and its not limited to pain meds either. I was tried on oral Morphine and it did not help me and the side effects were awful. For some reason my pain dr forgot all of this and put a morphine drug in the pump to start with, which was taken out 2 weeks later. Now, when I have been hospitalized and given morphine in an IV it works very well for pain, but I do hallucinate somewhat,lol. My daughter came in the my hospital room one evening to find me laying the bed drawing circles in air. She wanted to know what I was doing and I told her I was drawing happy faces. Then I proceeded to tell her to look out my window at the big party in the parking lot and to look at the helicopters flying around,lol. Yes, it works on me alright in a funny way. All I knew at that time I was not in pain.
My pump was implanted June of 05. Since then, Medtronic has come out with better pumps and ones that have options to them. Now, a patient can actually give themselves like a pain shot, which are called a bolus. There is also one a dr can program and say everyday at 8:00pm you are in excruciating pain on a daily basis, the pump can be programmed to give a bolus every day at 8:00pm to that person for however many days. Its truly amazing what they can do. I can be given a bolus manully by my dr and he can set it to be released at whatever time. He always programs it to be released in one hour and that gives me time to drive home before it hits and let me tell you, the bolus works. You don't feel anything but relief,lol. No high or low, nothing like that. It is not like getting a pain shot that can make you feel groggy or anything like that. Who knows what they will have available whenever I have to have my pump replaced. My nurse was telling me about one of their patients, this man had a pump that lasted 11 yrs and finally the battery wore out. His lasted way beyond what they give for an average. I think I told you before my pump is from the lot that has been recalled for potential gear problems, but knock on wood I have had no problem with mine and have no intention of replacing it. Its one of those things that has to be reported when one fails, but it does not mean all of them will fail. 
Sorry for the long post my friend, but I had you on my mind and wanted to post something to you. I do hope it all works out well for you. Cyber hugs coming your way. Susie 

Post Edited (straydog) : 8/14/2008 12:11:07 PM (GMT-6)

Pamela Neckpain
Veteran Member

Date Joined May 2008
Total Posts : 1821
   Posted 8/13/2008 7:48 PM (GMT -6)   
I just got back from my Pain doctor. He's been advocating a pain pump for me for
about one year. I am afraid. I am afraid that the procedure will be so painful
that I can't deal with it. My pain is such that I can just barely cope as is. Everyone
here understands this, I believe. I go about with a #8 pain almost all the time.

Hmmmmm? A pain pump? Interresting. Now I've found out that I have a kidney
problem. I think that a pain pump can't be implanted when the kidneys don't work
right. Don't know for sure. My doctor never has time to talk. (He'll talk when and if I get
the pain pump)

Thank you for the information.

Regular Member

Date Joined Aug 2007
Total Posts : 69
   Posted 8/13/2008 11:12 PM (GMT -6)   
Hey Just out of curiosity Susie, what medications are approved for use in the pain pump?


Forum Moderator

Date Joined Feb 2003
Total Posts : 16607
   Posted 8/14/2008 1:41 PM (GMT -6)   
Hi Pam,
Ouch, you operate daily on a pain scale of 8???? That being said, it does not sound like your meds are effective. Yes, there is the usual pain from the surgical procedure as in any surgery. I take it, you have never had surgery before? Its nothing debilitating, just usual post-op pain that is temporary and will go away and can be relieved with proper meds. I also knew what this pump was going to mean to me in the future, so post op pain never entered my mind, I was looking at down the road long term.
Prior to the pain pump my pain was so out of control and in so many places no pill would ever bring it down to a decent level. This is why I was a good candidate for the pump and one of the best decisions I have ever made. Trust me, I have made a boat load of bad ones, lol. It certainly gives me back some quality of life and in my book thats the name of the game. Not everyone is a candidate for the pump.
As for the kidney situation, I don't know your problem and I think it would depend on the type of problem it is and how a pain pump would intere with the kidney problem, a kidney specialist would be the one to make the call on that one. I have a kidney dr on board and he is not a bit concerned about my pump as it in no way interferes with the kidneys.
I am sorry to hear your pain dr does not have time to talk to you. Thats a been a bad problem for a long time. I look at it this way, if a dr does not have time to talk to me, I don't have time to have him as my dr. I have in many ways taken a very hard stance when it comes to drs, but that stance has helped me get good drs, and I can say now, I am happy with all of mine and I have numerous specialists (7) involved.
Painkiller I cannot answer your question about different medications used in pumps. It depends on the manufacturer of the pump involved. I do know that not all pains meds can be used in a pump. Maybe if you were more specific in a medication I could maybe answer your question.
Hope everyone is having a LPD and waiting on some cooler weather. These 100 degree days are wearing thin on me as it limits my time outside. lol. Hugs to all, Susie

Pamela Neckpain
Veteran Member

Date Joined May 2008
Total Posts : 1821
   Posted 8/14/2008 7:56 PM (GMT -6)   
Yes. My daily pain rate is 7 or 8. I sleep a lot. The only place I go is right here, the store, and
the t.v. Sometimes I can do family dinners if the Adrenalin kicks in.
My arthritis got real complicated by an odd injury. In a bad place. Surgery was not for me. Like you, I have
a boat load of specialists. At one time I had TWO neurologists.
When the pain first came I was so naive. I didn't have a GP and I was in the middle
of a move. I couldn't believe it.
Opiod meds do not work well for me -- but I'll say well enough.
As far as my kidneys, I had a cystoscopy a couple of days ago and I'm scheduled for
a Sonogram. I've known something was wrong for a long time. Kidney problems
sneak up on you.
Well, Susie, I look forward to your posts. They are moving me a little closer to
a pain pump.
To tell you the truth, the pain has put me in such a spot that I can't remember
socializing and being in nature. I live in a shell. So different from before. (6 years)
My pain doctor, I believe, is giving me the most pain medicine possible. Another
doctor put me on Methadone for pain. Once you're on Methadone, it VERY difficult
to get off. And the complication is that other pain meds are blocked by Methadone.
Pamela Pain

Osteoarthritis all levels of spine right down to Coccyx
Myofascial Pain
Bulging Discs
Spinal Stenosis
Chronic Constipation (Take meds that solve that problem. : ) )
Carpel Tunel Syndrome
Prolapsed Bowel and Bladder (Doesn't cause much problem)
Attention Deficit Disorder
Depression and Anxiety

Forum Moderator

Date Joined Feb 2003
Total Posts : 16607
   Posted 8/14/2008 11:47 PM (GMT -6)   
I know where you are coming from when you say you stay home and live in a shell. Been there and done that. Even now, probably depression related, sometimes I do have to push myself  to leave the house other than going to a drs office. Much of this stems from the crohns disease, as it creates major bathroom issues that can make it impossible to leave the house. That in itself caused panic attacks from hell. Thank goodness I am passed all that now. I do know I feel much better mentally to get away from home & get some different scenery. I couldn't for a long time go anywhere due to pain and you know you can get so use to that scenario, that after the pump surgery, it took me a bit to make the change. Its kind of like when you work, you do housework at nite or at least I did, same with laundry. After finally having to stop work I still do my laundry at night. I am a true creature of habit,lol.
Oh yes, the Methadone, yes, you are so right about it. A very good drug for some with chronic pain, but a very difficult drug to get off of. Definetly a long term use drug and not a short term one. It was a miracle drug for a neighbor of mine, when nothing else worked. It was one of the many drugs I was tried on and had terrible side effects from it.
By far these days my best tonic is a three year old named Cole. He is my grandbaby, and when we have him, I totally forget everything. He is the love of my life and my reason to get out of bed every day and keep going, no matter what. I never knew being a grandparent would be anything like this thats for sure. We do have him alot and we feel very fortunate to be able to spend the time with him that we do. Oh yes, by nightfall my body sometimes is screaming at me, but thats ok, tomorrow will be another day and who knows it may be with Cole again. Cole is very receptive to me when he is here. When I fell a few months ago, I was having a really time of things. A few times he heard me moan and he would look at me with those innocent eyes and would say" it will be ok Gran". I would always tell him he was right it would be ok. Pretty incredible for a three year old.
I sure hope they can get to the bottom of your kidney situation. My kidneys went haywire when I was hospitized for severe cellulitis. They dried me out too much from diuretcis and got the kidneys to acting up. Prior to that admission, 2 months earlier I passed a kidney stone in the middle of the night. Talk about pain, wow that one was a killer. I was on Fentanyl patches for a while and when they increased me to the 100's that messed with the kidneys so I had to get off of them.
By the way have you talked to Tom lately? I am afraid we have hijacked the original post to him, lol. But, I don't think Tom will hold it against us. lol.
I need to get off here, my time sitting at the puter is limited because of swollen legs & feet. Hugs to all, Susie

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