Pain Pump Questions! Please!

 

    Good morning Scotch!

          Welcome to the CP forum!

               Interesting topic!....as I'm also getting ready to be tested for the Pain Pump. I really don't have any real time experience on the pumps...but we do have a few members who do...and I'm sure you will be hearing from them soon.

      I would not worry about withdrawals just yet, as a good PM or whoever will be doing your Pump testing....will not put you through suffering like that. From what I have read the Pump should be a last resort....but it sure sounds like they are way to go doesn't it!

    Again Welcome!...and Enjoy the forum!

       SE

    

   ....it's my understanding that the size of the pump is a little over 3" and might protrude out under the skin a little. Other than that...there should be no external wires or tubes. Refills...will depend on how much your using on your dosage....but typically...every 30 to 90 days.

   You might want to go to the Medtronic's website...there is a lot of information there as well.

 SE

   ....your most welcome!...and I hope you continue to visit us here!

       One of our mods...is our forum expert on the Pumps...so keep checking here! She may pop in and visit with you as well.

   SE

Mom, your kind reply is both informative and intriguing. I would like to chat more when there is time. I want very much to reduce my meds, for obvious reasons but have always felt it impossible, because even with accupincture, ice packs, physical therapy, prayer, exercise, rhyzotomies, epidurals and 500 my of Kadian per day, sometimes the pain is debilitating. So your story is compelling. I'd like to know how you did it.
Thank you! Blessings.

Hi Scotch and welcome to Healing Well's chronic pain forum. I am glad that you found us but very sorry that you have to be here. Wow, you really do have some physical problems going on to cause you so much pain.

The pump may very well be something good to help get your pain level down to a more tolerable level. One way of finding out is when they do your trial. You will be able to tell the difference in the pain if it is successful. I truly thought I had died and gone to heaven when I did my trial. It had been so long since I felt that way. But, with that said my dr did warn me that I would not feel that good after the pump was implanted and he was right. With a pump you still have pain and always will, but it should be a more tolerable pain. The success of a pump is really all on the drs shoulders, it depends on how educated he/she is about these pumps, how educated he/she is about the medications used in the pumps along with the dosages used in the pumps. I found out the hard way that my dr did not have a clue about pumps or the medications and dosages, so I suffered terribly as a result of his lack of knowledge.

I am not a dr nor is anyone else here at the forum. I speak only from my personal experience. With the amount of daily Kadian you are on, there is no way 4mg or 5mg of any drug is going to drop your pain level down like he is saying. As an example, I have 4 drugs in my pump and Dilaudid is the pain medication. Here in the states someone can go to a hospital in pain and get a 10mg shot of Dilaudid for pain. That 10mg shot is not going to last for 24 hours.

My former pump dr had me on 15mg of Dilaudid and I received 4mg in 24 hours and it did very little for my pain. I was like that for 2 yrs. Life was not good and my quality of life was in the toilet, I was not able to do much of anything except hurt. He quit PM and referred me and 44 other pump patients to a pump dr that has only pump patients and has over a decade of experience with pumps. The first time this dr saw me she was floored at the condition I was in and the fact that my pump had not been increased in 2 years. She said the dose he had me on that day is what you start a patient out on and then slowly increase the pump. All of his pump patients were in the same boat, we were under treated as patients and our pain was under treated.

The first thing I would ask this dr is what will he be willing to do if 4-5mg a day does not get your pain level down. Will he be willing to increase your pump until the pain level is at a much more tolerable level. If he says no then you most likely will not be any better off than what you are now. I do think with a pump you could get your dosage down but I just do not see how he could think 4-5mg is going to handle it.

My pump does not stick out, now if you are skinny it may protrude a little but not very much. No one can tell I have a pump because there is nothing that is sticking out for someone to see, its all internal.

My pump works on my lower back only, not on my neck or anywhere else. I suffer with migraines also and the pump has no effect on them. My question here is how does the dr think the pump will handle both your neck and lower back. I have 2 herniated disc in my neck and it has no effect on my neck pain. I honestly do not know anyone with a pump that is handling both areas of the body that we are speaking about. You really need to ask your dr about this Scotch. I am not in any way trying to discourage you from getting a pump, they can be a wonderful tool for pain, but I think you need to have true and accurate information, otherwise you may regret your choice.

My dr changes the meds in my pump every 30 days even though I have a 90 day pump. The reason she changes it so frequently is the medication losses its potency sitting in that tiny little dark space.

By the way, I have a 7yr old grandson that I spend a lot of time with. He & I stay on the go as much as we can and he is one active little boy. life is good for me now that my pain is under much better control. If there had not been changes in my dr there is no way I could do the things I do with him now.

Currently I have Dilaudid, Bupivicaine, Fentanyl & Clonodine in my pump. Dilaudid is my pain medication and the dose is 37.5mg and I receive 20mg in 24 hours. I have been on this dose well over a year. In addition I have 8mg of oral Dilaudid I can take for BT pain.

The remote booster you are speaking of is called a PTM. It will give you so many bolus shots a day all programmed by your dr. This is used when you have spikes in your pain. My pump did not come with a PTM, I have an older pump and they were not available back then.

I will probably be having my pump replaced this year. I am about due and we are beginning to see some changes in the amount of medication in the pump at the time of refill. Thats an indicator of the battery being old.

If you have anymore question please feel free to ask. You may also send me an email if you prefer to send it that way. My email is listed here at the forum, click my name and you should be able to get it that way. Take care.

Hi Scotch,
Good luck! I do not know much about pain pumps, mu knowledge ends. that I know they are out there. But I truly hope you find some relief and answers.

   Morning Scotch!

        I hope you continue to keep posting about the pump and the testing they will be doing on you. I for one, am very interested in this, as Im headed down the same path. Today, I get my MRI done, and this should start the process for me.

      I do have some fear, that work restrictions may keep me from getting it, and then of course the trial period will have to be successful as well. My other fear is that I also have severe DDD in my cervical area, and it sounds like the pump won't be helping that much if any, so,... it may be that I will have to continue oral med's of some sort....of which I hate. Maybe I missed it in your post here,...but do you work?

      Good luck to you, and again please keep us updated on your progress.

     SE      

         

 

   ....LOL!....I get asked that question alot!

          Well!...this idiot bought a 2008 Harley Davidson Road King Screaming Eagle about two years before my surgery. Now it sets in the garage with less than 6000 miles on it.

     If I dont get to feeling better one of these days, then "Pearl" will have to be sold! It's a shame, as I love ridding too!

      You can always email me if you wish, but I always think it's best to post our experiences here for others who may be interested. However, feel free to email me.

  Now!...just promise me you won't mention my poor use of english here!   I'm not the greatest writer, but do give me best effort. Besides, my first day of english class in grade school...my teacher said, "I'm going to learn you all some English!"

 SE

Scotch good to see you post again. By coming here and sharing experiences, so much can be learned by others experiences. It was a great relief to read that your dr has a great deal of knowledge when it comes to pumps and the medications used in them. That makes all the difference in the world. I am also glad to have read the dosage is not going to be an issue with the dr. Do you by chance know if your dr mixes his own compounds in his office or does he use an outside pharmacy? My current dr mixes her own and that is a great convenience I have learned since being with her. She did have to do some changing up on my meds in my pump and rather than having to wait a couple of weeks for a pharmacy to deliver a filled syringe, she took care of it right then.

It will be interesting to see what your dr has to say about the pump covering both your neck and back pain. As I said before, I know several people with pumps and we all have neck issues and the pump does nothing for it or for our headaches. I am assuming this is because of the level where they place the catheter. We had to choose which caused us the most problem. I am going to assume you will have a Medtronics pump and if you have not visited their web site you may want to visit it at Medtronics.com. They have one of the most most informative sites on pumps.

I understand your fear of weaning down on the Kadian. Does your dr want you to taper completely off or just drop the dosage down to a lower amount? Surely he intends on giving you something to help prevent withdrawals, there are meds that can be used for this to help out. By the way, when is your trial going to be scheduled, any idea?

You are right about the spinal fluid leak headache being one of the worst around. Why did the drs wait a week to do a blood patch? Several of our clients had this happen when they had myelograms and the drs did the blood patch right away, usually within 24 hours. My neck pain started as a result of an auto accident too, then over the years a couple more car accident s and other accidents, they all added insult to injury. Before I forget, I did not have any problems with spinal fluid leak during my trial or when it was implanted, so try not to let this worry you a whole lot, you have enough to worry about.

With a 14 month old son to care for yes, you do work, lol. They are so cute at at that age. My little grandson will be 7 in April and since he is my only one, I often look at my pics of him and wonder where all that time went. I miss the younger years of him and dread him growing up. Being with him is my best medicine ever and I have been lucky enough to be able to spend a lot of time with him. Enjoy every moment you can with your son because they do grow up too fast.

Keep us posted on how you are doing and take care.

Morning Scotch, and welcome.

I also have a pump, though mine is primarily for dystonia (muscle spasticity) rather than pain. Like Stray said, I too would be interested to know if they can get a pump to cover neck pain - I know that my catheter is at the T/L level and only covers my lower back and legs. I would guess this is simply because spinal fluid flows away from the brain - so the higher you put the catheter, the more you would cover - but I don't know how high the cath could be safely placed.

As far as the size of the pump - I have a 40mL pump, which is the largest size Medtronics make. It is roughly 3" across and just over 1" thick and it sticks out a lot. I'm slim admittedly - but I have probably a 1" bulge from my abdomen.

Stray - I'm interested with what you say about your doctor mixing meds herself. I can well understand the convenience factor - I've been stuck before when my doctor has wanted to change the concentration of meds and had to send to the pharmacy for it to be ready the next time - but is she not concerned about increased infection or contamination risk? In the pharmacy/lab the compounding is usually done under pretty much sterile conditions. I know a lot comes down to the doctor's technique too. Mine always uses a sterile pack, gloves, swabs, etc., but I know he refuses to make his own up - he's had two colleagues who do, and both have had problems with patients getting infected pumps.

Laura

Hello again Sister!….click on straydogs name here on this post and it will bring up her email address….give her a shout, and she should reply to you. However I understand the urgency in your voice here, but do be patient…..she will answer back as soon as she can.

SE