~ New Member with Pain Pump Questions

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Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 10/3/2010 9:34 AM (GMT -6)   
 
     Please welcome our newest member SqueakyDog.
 
 
Thanks very much for the info -- I'm hoping someone still sees this even though it's months later! I found it through google groups. Anyway, unfortunately, my pain dr resigned, and the new dr is an anesthesiologist/pain specialist who has said I either have to get the pain pump or find a new pain dr because he will not prescribe medications. My history is I've tried most pain medications -- oxycodone/hydrocodone/vicodin make me throw up, Fentanyl patches were almost useless on the 3rd day and no one would prescrive 2-day instead of 3-day replacement, IV morphine worked but that was replaced with methadone for complicated reasons, my QT interval recently got too high with methadone so the new pain dr has replaced it with oral IR morphine for a month until I "acquiesce" and agree to get the pain pump. He makes me extremely nervous because he knew how reluctant I was in my first appt with him and yet he still had his nurse present me with a surgery consent form at the end of the appt. Fortunately, she said I didn't have to sign it right then.

But honestly I don't really know what to do. This town (State College -- in central PA) only has one pain dr, and my primary care dr has refused to take over my pain medications. Supposedly there's a pain center in Lewisburg, PA (couple of hours from here) that I guess I'll have to check out.

I have different types of pain -- mainly abdominal pain from paralytic ileus. and 2 different types of rectal pain -- one from nerve damage in my back that also made me incontinent and one from diversion colitis. I'm really scared about this pain pump thing -- it just sounds like too many things can go wrong. Plus I don't know if it will help my pain -- the pain dr and the theory say yes but what about in practice? Will it help my abdominal pain? I know there's a trial but when I asked the pain dr what happened if the trial was unsuccessful, he said "it won't be" and refused to talk about alternatives. Doesn't sound like he's going to believe me if I have pain with the pump. No idea how he'll try to control my pain if the pump's inserted. He did say the meds are replaced every few months. If they try different types of medication in the pump, can you get withdrawal symptoms while exchanging one for another, if you've been on the first for a while?
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/3/2010 9:44 AM (GMT -6)   

 

Dear Squeaky Dog,

     Well first off I want to send you a warm welcome! I am sorry for moving you post but I was hoping you would get a more personalized response to your questions and would give us all a chance to welcome you to the community! I do wish I could answer your questions regarding a Pain Pump, but I cannot. I treat my pain with a "mix" of different oral medications. There are many members with pain pumps and they will hopefully stop by to help answer your questions.

     The one thing that jumped out was your uncertainty towards the pain pump. And I have to say that no matter what you do regarding your pain, please be sure you are comfortable with both the decisions you make AND your doctor. I know you mentioned a clinic a few hours away.. unfortunately many of us have to drive out to major cities to receive treatment. I had to drive 1.5-2hrs for most of my doctors. The only reason I do not have to drive that far for my spinal care is because the just recently opened up a clinic close to my home (spring). I just cannot stress enough that if you are uncomfortable, in any way with your doctor or the decisions.. seek a second opinion. It is your body, you have to live with the decisions in the end.

     It really is very nice to meet you! I think you will fit right in with us! I look forward to knowing you better as time goes by.

*warm hugg*
     dani


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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straydog
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Date Joined Feb 2003
Total Posts : 16008
   Posted 10/3/2010 1:14 PM (GMT -6)   
Hi Squeaky Dog and I too would lile to welcome you to Healing Well's chronic pain forum. I have a pain pump and would take nothing for it, it has given me some life back. I have major tolerance issues with medications period. It is not limited to just pain medication either. So if the tolerance issues didn't get me full blown allergic reactions did. A pump is not something that a person should just jump off into unless they are ready for it. I am not sure you are there yet, but if you have ran the gambit of medications this may be the next thing for you. I am really concerned about your drs attitude, I would have to travel and find another dr for another opinion. A person should never be coerced into making any kind of decision.

When you have a pump you need a dr that is very, very experienced in pumps and how they work and he must also be experienced knowing what medications go in them and know all about dosages of these different meds. They do make 90 day pumps but let me tell you, when medication sits in those tiny dark pumps the medication loses its strength and effectiveness. My old pump dr left the meds in right up to the line and I did not have good pain control because he was ignorant of pumps and the meds used in them. I am with a new pump dr and she knows these pumps like the back of her hand. She has the nurse change my meds out every month. She has increased the dosage in my pump considerably too. You should not go through withdrawals if they change meds in your pump, it takes a good 24 hours for the catheter to clear of all meds. You take one medication out and you put the new medication in and program the pump. When my meds were switched that is all we did. You should also still get oral medication for BT pain.

I have a Medtronics pump and before a pump can be implanted they require a pyschological evaluation. Normally a pump trial is considered a success if it decreases 50% of your pain. I suggest that you got to Medtronics.com and read about the pump too. That will give you some ideas. You can also do a search here at the forum and type in pain pumps and you should find a lot of info on it here. I have posted lots of info on pumps here. If you have any specific questions please ask, I will try to answer your questions. One thing about the pump is you end up using less pain medication than what you are taking orally because you are getting the medication in a concentrated dose.

I just don't you should have a trial until you are ready for a trial and ready for a pump to be implanted. I can assure you if you don't pass the psych eval Medtronics will not be selling anyone a pump. I just don't trust this dr of yours and how he is operating. Please let me hear from you.
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squeakydog
New Member


Date Joined Oct 2010
Total Posts : 2
   Posted 10/4/2010 10:46 AM (GMT -6)   
Dani, thanks for moving my post!

Couple of questions -- Can the psych eval be used for anything else but approval of the pump? I have searched on "pain pump" here and read that it only helps back pain -- surveying the members here again, is that what you've found? My pain dr seems to think it'll help all my pain, abdominal and rectal. Has anyone found that it helps either type of pain?

For the trial, do you have to go off all your pain meds first? How about for the surgery? My pain dr has said he uses the trial to determine the starting dose for the pump, but I've read here that it can take a year to titrate to a dose that helps?

Say you have an initial dose and your dr decides to increase the dosage. Can this be done temporarily by reprogramming the pump to deliver a higher amount while waiting for the new medication to arrive? I've read it takes 2 weeks for new meds for the pump to arrive, so it's not like you can just go to the drugstore and immediately get a new prescription.

straydog
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Date Joined Feb 2003
Total Posts : 16008
   Posted 10/4/2010 5:01 PM (GMT -6)   
Hi Squeaky, to my knowledge the psych eval is only for the pump. It is used to help determine whether or not a person has reasonable expectations of what the pump can do in lowering your pain level for one thing. There is really many different reasons for doing a psych eval for the pump. When you go to Medtronics.com there is a place there that has a large list of conditions that the pump can help. It is not limited to back pain only. You really need to check out their website and see if your problem is listed there. Also, the people at Medtronics will talk to you on the phone. There are some of us here with pumps and one of our conditions is back pain. As I said before I have done a lot of posting here on pumps.

No, I did not have to go off my medications to do the trial nor did I have to reduce them either. The pump is computerized and the dr can either increase or decrease your pump right there in his office with a little hand held device, actually my nurse does this. He can also give you what is called a bolus, which is like getting a pain shot. Lets say your pain just became severe and after a few days it would not decrease, your dr can give you a bolus to help get the pain level down. Now the newer pumps have a device called a PTM and it can deliver a bolus done by you at home by pushing a button. This is of course done with your drs approval because he is the one that programs the machine to give a bolus. One friend of mine is allowed up to 6 a day. It is the drs decision on whether or not he will allow a patient to use a PTM machine. Your dr can increase your dose in your pump without having to wait on the refill meds to arrive at his office, as long as there is enough medication in the pump which there usually is. They do not allow the pumps to run dry and there will always be old medication pulled out of the pump before new meds are put in. They measure what the pull out and document it in your chart. My PM dr knows compounds so she mixes the medications used in my pump in her office. Not all drs do this and I am so glad she knows compounds. Otherwise, the dr uses a pharmacy that send the medication all packaged & ready to be put in the pump. Depending on where the pharmacy is located would determine how long it takes to get the meds. No you cannot just go to a drug store and get a new prescription of meds for your pump, it does not work that way.

When I did my trial I thought I had died & gone to heaven when I woke up because I was pain free for the first time in a long time. But, do not expect that when the pump is implanted. My dr said because I had such a good response during the trial in pain relief this is how they knew it would work well for me. But they do not start you out on that high of a dose in the beginning. They start at the bottom so to speak and slowly increase it. Make sure that your dr will increase your pump every two weeks while titrating the dose up in the beginning. Keep in mind the medications used in the pump are very strong and they are in a concentrated form, this is why it takes time to dose up a pump. Too much too fast and you may not wake up because it can affect your breathing if you are given too much.

I think I answered what you asked, if you think of anything else post it and I will try to answer it for you. Take care.

It took me a good 6 weeks or better to recover from surgery. Some people recover quicker. One thing was I had undergone many, many surgeries leading up to the pump and my body was tired to start off with because of all the other surgeries.
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WaterRabbit
New Member


Date Joined Oct 2010
Total Posts : 1
   Posted 10/10/2010 9:48 PM (GMT -6)   
Hi all,

Thanks for sharing the info! Has anyone gotten an IT pump with Ziconotide? or IV injection with Ziconotide?

I'm looking at my options. I'm not thrilled about an SCS unit b/c of my "old life" hobbies I want/need back and other serious concerns the manufacturers can't seem to answer definitively & there are some contraindications that could destroy the unit from what I'm told, and may lead to injury (in rare cases even death.)

We're looking at Ketamine at this point for RSD. I want a plan B & brought up Ziconotide with my neuro doc.

I've read the package insert, but am looking for some who have had 1st hand experience of Ziconotide & perhaps Ketamine too!

Thanks in advance,

WaterRabbit

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16008
   Posted 10/11/2010 2:50 PM (GMT -6)   
WaterRabbit I am very familiar with Prialt and quite frankly I would have my pump removed before ever allowing a dr to put that in my pump.The side effects from that drug can be and usually are horrendous. One of our mods here had it in her pump a very short while before it had to be removed. There is another forum for people with pumps and the members there that tried it regretted it and a couple had some permanent damage as a result of the Prialt. In my opinion, it should be taken off of the market, I have yet to see one person do well with it. I don't normally speak against medications but this is one drug I do and will continue to do so. I am not trying to rain on your parade but I would never entertain the the thoughts of Prialt. There are too many other good drugs that can be used in a pump for people with RSD.

Good luck.
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