[MudRat]

Hey Folks, I'm kinda in a spot with my pain doc and was wondering should I take my own advice of "be your own advocate". Now as most of you know i have had the Medtronics Pain Pump for about a year now. Ive had the best results one could ever ask for when it comes to nerve pain and CRPS. I feel like I'm 20 again. Now the problem I have, is every now and then I experience a little bit of breakthrough pain. Now it's nothing compared to life without the pump but it's still a little painfull. When I discussed this whith my pump dr, his answer was " Let's just turn the dose up". Now I have a Personal Therapy Manager that's never been in sinc with implant because the dr feels that it really shouldn't be in sync. So when I asked him to please sync the PTM instead of just an across the line increase, he rufused. Now we went round and round ( I'm taking my advice here )!! My position on this is that the PTM will allow me a bolus dose. Now a bolus is a fancy word for PRN in my opinion it just deleviers an extra dose of meds when needed but within the parameters he sets (dosage and time). It also allows me to easly interact with the implant by letting me know when my last refill was and the date of my upcoming refill. Not to mention it has a bunch of other features... His position is he dosnt want me adjusting the dose for a few reasons. One" it always changes the fixed date as to when the next refill will occur and I dont want to be out of town when that happens". The next thing was that " I don't think it's needed, my job is to keep you out of pain and Ive done that. None of my other patients have it and they are out of pain also. If you want to find another dr that will sync it then thats fine but let me do my job". "WOW" I said. Followed by the thought he's right I'm so happy with his results, but should I really let go and let him work his magic or should I call medtronics and find another Dr that will, hence the question "When do you let go".

[Mark56]

This is time for you to follow your gut. Me, I am a person who is faith driven, so prayer is an influence for me. I lift it up in prayer, then go with the gut feel I have after having done so. I generally have feelings, indications, fingerprints if you will indicating to me my direction in life. Thus my fairly brief answer!

May you find your right answer as well,
As for me it was oust the programmer to do it myself,
That has truly proven to be a God fingerprint, because I never have since required all of the tweaks, revisions, and such so many others wrestle,
I am blessed with pain management which has worked fantastically,
You, gotta follow the path in which you are led,
Mark56

[yellow]

The PTM won't allow you to change the dosage yourself, though, like he said, right? The actual dosage would stay the same and it would give you the ability to administer bolus doses? Because if that is the case, I really don't see why he wouldn't be ok with that

I've never had a pain pump, but I did have an epidural infusion pump for 6 weeks at home so I am familiar with what your talking about. I was able to give myself a bolus dose when I needed it, which was very helpful sometimes. I think it was 1 mg every 30 minutes and then later was changed to 2 mg every 45 minutes. I certainly didn't use it constantly. In fact, my doctor would even advocate for me to press the bolus button right before and then again during physical therapy so that I could have that extra amount to get through it easier.

It sounds like other features of the PTM, like knowing the dates of your refills, would be very beneficial to you as well and completely harmless. Maybe you should try to get a second opinion from another doctor, at least, if yours is dead set on not letting you have this. It also comes down to, I think, how much of an attachment you have to your doctor and if you are willing to leave him and see someone else if it comes down to that.

Good luck!

[Dr. Smith]

Originally Posted by MudRat

should I really let go and let him work his magic or should I call medtronics and find another Dr that will, hence the question "When do you let go".

I don't think anyone can make this decision for you or even get a good idea what the situation really is because we're not in your shoes or head.

When I'm faced with big decisions that could have far-reaching implications, I often go back to basics - Decision Making Theory. It won't give you any answers, but it may help you get there logically, and find/figure out an answer you can live/sleep with. If the theory part gets too heavy, there are some simpler methods in the Everyday Techniques section.

Just another POV...

HTH,

Doc

[Rrae]

You've raised a good question here.

Forgive my naive-ness , as I know very little to nothing about the pump. Thanks to you, tho, I'm able to pick up on a few things.
The one thing being said from your Dr's POV, makes sense regarding the amount of meds in your tank. He has it pinpointed down to where you'll both know when your reservoire will be requiring a refill, and also a pinpointed date (thereabouts). Obviously, the additional bolus doses would drain your tank sooner, possibly during a time when he might not be available as he mentioned. Am I on the right track? So, from his perspective, this would be inconvenient, and possibly put you in a dangerous spot as well (withdrawals)

Course here you are with breakthru pain that needs addressed.
I know the obvious reason to have the pump is so oral meds aren't necessary.....but would it make sense to have something to take orally to stay above the BT pain?

ok ok, when you've picked yourself up off the floor from laughing at my ingenious question, feel free to let me have it with both barrels

Heck, these Dr's are few and far between where I live (in the heartland of tornado alley). I'd certainly hesitate to drop this doc unless it gets REALLY bad.......just my take on it.

Rae

[Hugs4U]

Dear Mudrat,
Continue to be your own advocate!!! YOU are the one who has to live with the pain, the implanted device, and the drugs in your system. If your doctor "never syncs," and gets defensive when you ask about it, maybe he doesn't actually know how to. Before making a final decision on changing doctors, you could call Medtronic Patient Services at (800) 510-6735, and get their input on the matter. They also have manuals available to download at their web site. Continue your own fact finding and internet research. Don't settle for a cursory response from a doctor who makes you feel like you are annoying them with your questions. You've entrusted the doctors and device makers to put "equipment" and powerful drugs in your body. You deserve answers that spell out your options and allow you to make informed decisions for yourself. I'm rooting for you!

[pooh_ac]

I know very little about pain pumps but I know about the "pain pumps" that we use in the hospital. We can set those with a dose that stays constant during the entire time and set bolus amounts and lockout times so the patient cannot overdo it. We then figure what the constant is and it can be tweeked by looking at how many as needed dosages and how many times the patient attempted to bolus themselves. Works great after surgery and with patients who have poor pain management.
so what I am saying I would think there was a way to deliver a bolus dose. However I see the docs point about running out too soon or when he is not availble. When by SCS has quit in the past the pain comes back with a vengance! That would be terrible and if it was any more then a couple of days that would SUCK

Z

[Puppyraiser8]

I know very little about pain pumps. BUT, I personally would feel more comfortable with a doctor I can work with. It bothers me that he pretty much is telling you he knows better than you when it comes to how you feel. I am sure he knows his stuff....it just seems off putting. I agree that a call to Medtronics for their opinion would be a good starting point. I also agree that YOU know best about what you feel should happen. I hope you get a solution quickly!

[besidemyself]

I understand your plight, but before you make a drastic move like switching doctors, you need to understand it's not that easy to find someone to work with you. Pain doctors have such strict rules and regulations to follow and most of them don't like "doctor shoppers"... So, be very careful. You don't want yourself left in the cold with a device that can't be serviced..... I'm caught in the middle of that right now and it isn't fun.

Originally Posted by MudRat

Hey Folks, I'm kinda in a spot with my pain doc and was wondering should I take my own advice of "be your own advocate". Now as most of you know i have had the Medtronics Pain Pump for about a year now. Ive had the best results one could ever ask for when it comes to nerve pain and CRPS. I feel like I'm 20 again. Now the problem I have, is every now and then I experience a little bit of breakthrough pain. Now it's nothing compared to life without the pump but it's still a little painfull. When I discussed this whith my pump dr, his answer was " Let's just turn the dose up". Now I have a Personal Therapy Manager that's never been in sinc with implant because the dr feels that it really shouldn't be in sync. So when I asked him to please sync the PTM instead of just an across the line increase, he rufused. Now we went round and round ( I'm taking my advice here )!! My position on this is that the PTM will allow me a bolus dose. Now a bolus is a fancy word for PRN in my opinion it just deleviers an extra dose of meds when needed but within the parameters he sets (dosage and time). It also allows me to easly interact with the implant by letting me know when my last refill was and the date of my upcoming refill. Not to mention it has a bunch of other features... His position is he dosnt want me adjusting the dose for a few reasons. One" it always changes the fixed date as to when the next refill will occur and I dont want to be out of town when that happens". The next thing was that " I don't think it's needed, my job is to keep you out of pain and Ive done that. None of my other patients have it and they are out of pain also. If you want to find another dr that will sync it then thats fine but let me do my job". "WOW" I said. Followed by the thought he's right I'm so happy with his results, but should I really let go and let him work his magic or should I call medtronics and find another Dr that will, hence the question "When do you let go".

[ginnie]

This is one to pray about I think. Changing physicians is one of the most difficult there is when in regrards to pain management. You are the one experiencing the pain. I had a pain doc. refused to treat me for a "Next" surgery, and neither would the surgeon. What the heck? I changed pain doctors and I am ever so glad I did. In my case, this new doctor is much much more interested in helping me. This choice is a personal one for sure. Give this some good thought and don't jump right away to make your decision. I am impulsive sometimes and that gets me into trouble. I wish you all the best. ginnie