Post Edited By Moderator (Lynnwood) : 3/25/2009 1:55:20 PM (GMT-6)
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Post Edited (PAlady) : 3/25/2009 2:10:22 PM (GMT-6)
Thank you for sharing your experiences with the pump, as well as your concern for my situation and I am not at all offended by your comments. It has bothered me for quite some time that he does not seem to be willing to use the pump to its fullest capacity and that I get such conflicting opinions on whether the dosage I get is nearing the acceptable max.
Just for clarification, my concentration is 20mg of dilaudid per ML and my pump holds 40 ML's. I get it at a rate of 16 mg per day from 12 a.m. - 2 p.m., and then I do have a programmed "bolis" which they call a "step" that increases the dose to 18 mg per day from 2 p.m. to 12 a.m., (so I get somewhere between 16 - 18 mg total per day). The "step" does help some, it takes about 45 min. - 1 hour for the bolis to make its way through the catheter and into my spinal canal, so it I feel it from approx. 2:45 p.m. - 12:45 a.m. and I do not have to even look at the clock. I can tell you with almost pinpoint accuracy when 12:45 a.m. comes along.
They can program up to 4 "steps" a day and then if you have the PTM, you can give yourself up to 4 "bolis's" a day. Some people do have both, but I really wanted the PTM device so that I could give myself a bolis if and when I felt I needed it, like on day's when I have doctor's appt's., or have a family outing, etc. With the "step", we set it up for the time of day I felt it would be most beneficial, it kicks in about the time my kids get home from school and covers me through the evening when I am trying to be available to them to help with homework, cook dinner, etc. Ultimately, I would like to keep the one step that I have and then have the PTM as needed, but as I told you, my doctor has been unwilling to consider it. But, he went from not even being willing to discuss it to asking me to have my nurses put some info together and said he would talk to some colleagues as well and we would revisit the subject at a future appt.
I was told that the reason the PTM was not available was because they were revising it, but if it is as you said (and I'm sure it is), that there is such a demand for it, that may be in my favor as well because his two reasons against it were that he felt it was very dangerous, and that even though is was an available feature, he had never known any doctor's/colleagues that had ever approved one for use for any of their patients.
I did briefly try going to another PM doctor who came up my way from New York City 1 day a week who had been recommended by my nurses because they said he was "more aggressive" with increases and they spoke to his nurse ahead of time and she indicated that he would be willing, after getting to know me, to try the PTM, but after going to him a few times, I brought it up as a possibility for the future and got a similar reaction - he said he just was not comfortable with the idea of them.
I am going to talk to my neurosurgeon as well as the Medtronics rep. when I have my surgery next week (I think I mentioned that my SCS needs a new battery), to get their opinions too.
I am so glad to hear that you are doing so well since switching to this new doc. It at least gives me some hope that given the right doc and the proper dosages of pump meds, my pain could be brought under control. I wish I lived in Texas!
Oh, I am so glad one of the moderators was able to fix my post to you. I have no idea what happened. Your post was doing that so thats why I started a new thread. While typing your post it all looked normal, don't know what happened.
All I can say is I really feel for you, because I was where you are at ever since my pump got put in back in 05. I tried so hard to block the pain from my mind and that did not always work. I sat and talked to myself and try to rationalize that I should not be hurting, after all I have pump. I went as far as starting to think it was in my head. I was as uneducated as my PM dr.
Talk to the Medtronic rep because all the info I am getting is they cannot meet the demand and thats why they are short on supply. This came from Medtronic. Your dr is not doing you any justice at all, he is not properly treating you and thats what the medical profession is suppose to do.
My current dr says she has people on 60mg a day and thats nothing. A couple of her patients have 7 different meds in their pump to control the pain at a decent level. Your nurse is not lying to you, your dr is. My neighbor is an RN and has been a very long time. He told me that my pump doseage was very, very low. He said think about this, people can go to an ER in severe pain and get a shot of 5mg of Dilaudid right then, your doseage is being spread out over a 24 hr time frame. When he said that to me, I felt like someone poured ice water on me, because I knew what he said was true.
Right now the pain mgt drs here in Ft Worth send all of their pump patients to my dr simply because of her experience with pumps. Those guys patients kept complaining of pain and they could not figure out why. Its because their doseages were all wrong and the drs knew they were out of their league trying to handle the patients. They were not educated enough to handle a pump patient. The worst part is their ignorance of medications.
If your dr would increase your concentration level of Dilaudid, 9 times out of 10 your pump doseage could be decreased because of the stronger concentration level. Where some are having a conflict on the PTM is it does the same as bolus if your pump can be programmed for them. The comment has been whats the purpose they both do the same. Then there is the running the risk of not having the pump calculated correct and needing refills sooner than expected. Then you have the drs that have their head stuck up their you know what, and they are saying the doseage needs to be kept to a minimum to avoid tolerance issues. Well, its been proven these tolance issues they speak of take a very, very, very long while to ever get there. I also read that a medication would pretty much stop being effective long before you ever got to the tolerance stage.
All I can say is this, when we patients are told about these pumps for the most part, our drs tell us how much better it is going to be for our pain control. They say it handles the pain so much better than oral meds ever will. That part is all true, but the dr does not bother to tell us, oh by the way my knowledge is limited in pumps and medications so you may not get all that relief after all. It burns me so bad to know how I suffered needlessly. It burns me even more to hear all the stories that are just like what I went thru. I am really thinking of trying to figure out a way to put an end to these drs that are doing this very thing to their patients. Don't think for a moment I wouldn't go public, I sure would. There needs to be special requirements put in place for drs that take on SCS & pump patients. They should be required to take a certain amt of pharmacist schooling. I think it should be a specialization for drs so they have to take continuing education courses to keep up their specialization. Hey, specialists that are board certified has to do this.
Don't give up hope, there has to be a dr out there that can and will help you. I just really feel bad for you because its all so unnecessary to be in the shape you are. Don't forget to talk to the rep and your neurosurgeon too. By the way, you didn't say whether or not your dr gives you meds for BT pain. Do you get them? Thats one thing both PM drs did agree on, is pump patients must have meds for BT pain. Keep us posted on how you are doing.Susie