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MedTronic Pain Pump - 5 mcg Day Dosage - 2 Boluses with 1 mcg

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Posted 2/14/2021 7:14 AM (GMT -7)
Hey everybody. I just got the Medtronic pain pump and .............. what a disappointment so far. I THOUGHT it would provide some sort of relief. Just the amount of effort to get the doctors to approve, go through the test, go through the procedure, wait several weeks for meds to be inserted, another 48 hours for saline to drip through the system and boom - the meds are being distributed but I feel NOTHING DIFFERENT. I spoke with the Medtronic rep and she assured the pump is working correctly. Wow. What a lot of work for nothing so far. Whenever I go to the hospital and get IV dilaudid or fentanyl I always immediately feel the results. I need 3 mg Dilaudid every 4 hours in the hospital - which is a lot compared to most patients I have been told. At least I can immediately feel the relief in the hospital and I thought that is what I would be getting through the pump. If this is what I am counting on for huge pain relief I am screwed - there is no way this can control the ice pick stabbing, the razor blade and blow torch level of pain I receive sporadically. My pain is not a throbbing kind, one that is constantly there but one which sneaks up whenever it feels like it - immediately taking control of my life and then leaving. I never know when it is coming - but it is sudden, piercing blowtorch to the skin pain. I'm in serious trouble if I am counting on this device to control same. Patience I suppose is what I need; however, it seems patience is hard to come by. I've read 90% of Medtronic pain pump recipients complain to their physician the dosage is too low - just wondering how long it is going to take to get it right - if I can ever do the same. Perhaps oral dilaudid coupled with the pain pump is the trick. I was taking 90 mg a day oxycontin + 40 mg of vicodine for years and quick completely to get ready for the pump. I'd quit cold turkey every year for two months - and kind of reset my system although I wouldn't recommend anybody doing the cold turkey approach as I have - it can be hell for 9 days before you come out of the fog. I've got 18 months before my vascular surgeon says they are going to have to amputate both of my legs - one at a time - so I am doing all I can to keep my legs. Supposedly the pain will leave when my legs are gone - but I kind of like my legs if you know what I mean.
Posted 2/14/2021 10:47 AM (GMT -7)
Hi DWKeith, welcome to the forum. Sorry to read that you are struggling right now, but please don't give up on getting relief. It took 6 months to get my pain under decent control. In the beginning my dr did small increases every 2 weeks. It would be negigent for a dr to start you out in a pump on what you were taking orally, most likely you would go to sleep & never wake up again. When do you see the dr again?

Keep in mind oral medications, including IV or pain shots given in a hospital setting are completely different than the delivery system of a pump. Another thing is do you know the miligram of the Dilaudid in your pump, such as is it 5mg or 10mg? I am not talking about how much you receive in a 24 hour dose, these are two different issues. You should have a printout when they filled your pump. I was always given a printout of information. I am surprised your dr is letting you use the PTM this soon, however, this is a good sign. They typically monitor how many times you try to access it, it helps monitor your needs for additional ones to be added.

I know you are struggling right now & I get it, I really do but it does take time. If you find you cannot wait until your next appt by all means contact your dr. Keep us posted.
Posted 2/14/2021 8:38 PM (GMT -7)
Hey Susie - Thanks for responding. I have the printout from the Pentex Health Systems nurse gave me the medication. My dilaudid is (75 mcg/ml) and dosage is 5 mcg/day (.208 mcg/hr). I have a PTM with a bridge bolus of 1 mcg - given over 5 minutes - 2 x per day - 6 hour Lockhout Interval. Pump Model: 8637-20 Reservoir Max Volume: 20 ML, Catheter Model: 8781 Ascenda, My doctor is Mathew Schocket with Capital Pain Institute in Austin, Texas. He specializes in pain management and has 10 physicians and a staff of 50 on his team. He has built his own surgery center next to his office called Center for Specialty Surgery with beds for ten people at a time. His office is professional. I've been seeing him off and on for ten years.

My next appointment is 90 days but I was told to keep the Dr. informed regarding the pump and its effectiveness and he would raise the dose / adjust the boluses / switch things around as needed. He normally uses morphine with his 100 + other patients with the medtrronic pain pump but chose to go to dilaudid with me to start vs. morphine due to morphine causing my skin to get red and irritated. I'd tried 32 mg of oral dilaudid for years coupled with 4 10 vicodine each day, oxycontin switched later on. The oral meds just never really worked.
Posted 2/15/2021 7:47 AM (GMT -7)
I read your other post & see that it had been 24 hours since medication was put in your pump. Honestly, it's going to take a bit for the medication to become fully effective, it's not instant relief. When I did my trial I honestly thought I had died & gone to heaven, it was great. However, once the pump was put in it was a totally different story. It took 6 months to get me leveled out well. I know you don't want to hear this, but if your pain isn't the slightest relieved in a week, call the drs office, they can bump the dosage up a little. I can only tell you it's a process but you need to give it time. People often have the misconception the immediate relief is like getting a pain shot or through an IV, pumps do not work like that all. Keep us posted.
Posted 2/15/2021 3:30 PM (GMT -7)
I'm supposed to get the PTM today -but considering Houston TX is under a severe cold storm - streets are icy - delivery may be impossible. It's the coldest day Texas has ever had according to Weather channels. 16 degrees. I have two boluses a day with a 6 hour hold time. Boluses are delivered in 5 minutes and are 1 mcg of dilaudid. The dilaudid is 75mcg strong. Drl Schocket's office said they would raise the dosage if it did not work and I've read here on the forum that 90% of those getting these Medtronic pumps need to be increased. Most who receive the pump have been taking oral meds for years prior to the pump. The medtronic rep told me today that they will titrate it up as I need so I shouldn't be concerned - and just let the doctor know it isn't working and they'll raise the dosage as needed. After twenty years of pain I've got a very low pain threshold and extremely high tolerance to the meds. I've been told this is normal for people in my situation. Wow six months to get it settled. I guess so. AT least I was able to skip the morphine and go straight to dilaudid. Dilaudid has always worked the best even compared to Fentanyl. Fentanyl killed the pain immediately but made me a bit loopy. I need to be alert, focused and intelligent - not doped up.
Posted 2/16/2021 10:57 AM (GMT -7)
Perhaps call the dr today to see if you can be seen next week once we thaw out. I too live in Texas. I have 4 inches of snow plus ice, it was -1 at 6:30 this morning. Unheard of weather for us for sure. Power outages all over & I am not talking about the rolling blackouts.

Stay warm & safe.
Posted 2/18/2021 12:24 PM (GMT -7)
Hey. My medtronic rep said the minimum dilaudid I can get is 3.6 mcg per day vs. the 5 mcg I am on - with a 75 power of the dilaudid. I've got a bolus of 1 mcg twice a day but haven't gotten the ptm device yet due to FedEx not being able to deliver because of the terrible ice storm we have had. It was due on Monday but here it is Thursday and Fedex says they may not be able to deliver until Saturday. While I am anxious to see what the 1 mcg bolus will do - the whole thing is becoming very anticlimatic due to the first few days only getting saline solution and now the bolus administration device ( ptm ) being delivered many days late. I don't regret getting the device, but as mentioned above it seems like a whole lot of work for nothing so far. I don't want be doped up
Posted 2/21/2021 7:56 PM (GMT -7)
Update. The Houston, Texas weather has delayed my PTM device giving me the boluses for a full week. I'm just glad to have the power back at my home, water working and all considering I went 3 days without either. I'm looking forward to the Bolus of 1 mcg twice a day but doubt it will do anything. It seems the physicians start everyone out at a dosage that is safe but not what they need - so begins the process of determining what the right dosage is - I just hope it is much faster than the six months that everybody in the forum seems to have lived with. If anyone wants to chat or discuss their medtronic pain pump - send me a note here to connect. I'm hoping the device will work - it is obviously different than both oral or IV meds - just not sure how different because I can't even feel any relief from the 5 mcg my pump delivers each day. The medtronic rep said the minimum meds the pump can deliver each day is 3.75 mcg which I may request the doctor to lower it to - I don't wish to be doped up - but only wish to have the power to eliminate ice pick stabbing pain when it comes.
Posted 2/22/2021 6:56 AM (GMT -7)
Yes, you are correct about the drs always starting patients off at a lower dose in pumps, I've yet to find a dr that does not do this. This is the purpose of increasing the dosage. Your dr does things a little different, most drs will increase the pump at 2 week intervals at first. It sounds like your dr is open to increasing it too.

about the difference in medications. Oral medications have fillers, IV & shots are diluted. The medications in pumps are not diluted, no saline added, it's in pure form. It would be like comparing apples to oranges.This is why the start low & increase.

I am a little confused. With the dose you are getting now, does it make you feel drowsy or loopy? Is your pain constant or just when the ice pick pain hits? If you are not feeling loopy, why in the world would you consider asking the dr to lower the dose, that makes no sense.

Yes, it can take up to 6 months for some people to hit their perfect number. Everyone reacts differently & it depends on their pain tolerance.

The Texas weather messed everything up for people. Once you get your PTM & use it for a bit, if you are not any better contact your dr & get seen. Pain pumps can be a wonderful tool to lower pain & give a person a much better quality of life. I have a feeling you had in mind once the medication was put in your pump that the pain would be gone. You may end up only needing one or two increases who knows. It's up to you to keep the dr informed on how well the pump is or is not working. I will caution you, even with a pump do not expect to be completely pain free. That is the first thing my dr told me, it's about lowering the pain level to help a person function better & have better quality of life.

This forum is slow, however, I am more than willing to post with you any time.
Posted 2/26/2021 6:29 PM (GMT -7)
My nurse with Pentec just left my home - giving me an increase of 1 mcg to 1.10 mcg per my physicians instructions - but that isn't going to help at all. I'm not asking for a total relief from pain - but any reduction would be nice. I'm fighting to keep my legs from being amputated with an eighteen month period - I have a problem with saying to my vascular surgeon - cut them off right now - until I have exhausted all possibilities of which I thought the medtronic pain pump would provide.

Below is my letter to my physician

The nurse from Pentec just left my home. Per your instructions she increased my dosage from 1 mcg dilaudid to 1.10. This is extremely disheartening. I had high-hopes for the MedTronic pain pump to assist my life with chronic pain due to non-stop life-threatening blood clots due to a Factor V Leiden blood clotting disorder.

I may not be a physician, but I live with my body each day. I’ve suffered chronic pain for the past twenty years. Kimberly Schocket, when interviewing me for possible participation in the Medtronic pain pump implant told me it was not unusual for the pain to be increasing over the years and the analgesics to discontinue working. I urge you to review my PDMP charts with the State of Texas. You will see that during my hospital stays, I have been repeatedly prescribed 3 mg dilaudid every two hours for pain. I’ve found 5 mg dilaudid every four hours to be too strong. Admittedly, intrathecal dosages are much different than IV; however, the intrathecal dosage of 1 mcg and the current 1.1 mcg is totally ineffective. I understand your need to titrate the analgesics to the correct amount - but at a 10% titration rate - I will wind up having my legs amputated before the analgesics provide any sort of relief. You are an expert in this field. If there is anyone in the world who can help me maneuver through this mine field chronic pain in my life - it is you.

I believe I need to have

Five boluses per day.
3 mcg per bolus

If the amount is too high of a dosage and makes me “cloudy” with my thinking - I will be quick to respond and request a lower dose. I must be alert with my decisions; unfortunately, pain is interfering with my life.

Susie -- You wrote: I am a little confused. With the dose you are getting now, does it make you feel drowsy or loopy? Is your pain constant or just when the ice pick pain hits? If you are not feeling loopy, why in the world would you consider asking the dr to lower the dose, that makes no sense. My answer: No - I do not feel the Medtronic pain pump meds whatsoever. My pain is only when the ice pick pain hits. I only need and want pain meds at that time. I'd rather have no pain meds inside my body until the pain hits.

I appreciate your answers, my problems are nothing compared to those in the world in general -
Posted 2/27/2021 6:56 AM (GMT -7)
Did you email the letter to your dr? Hopefully he will have the nurse come out & increase the bolus & increase you to 5 a day. It never hurts to ask. I looked up your condition, I had no idea what it was. I am assuming you have had blood clots in your legs before & on a blood thinner?

Keep us posted.
Posted 3/2/2021 7:17 PM (GMT -7)
Hey Susie, yes I am on blood thinners. I have constant DVT's - ie blood clots in my legs. It is extremely rare because most people get PE's (pulmonary embolisms) which kill them like it did my brother. I've had many PEs but none kill me - it seems like nothing will really. I've got constant blood clots in both legs - painful - but ..... whatever. I'm very frustrated right now with the entire situation. I thought the pump would dramatically change my life and all I've wound up with is a huge loss of time and monies for essentially nothing. There are many people in the world who have situations that are far more dangerous and painful than me so I feel stupid even complaining here as i have. Yes, I've written the DR again and told him I wish he would just give me the oral meds I used to be getting or dramatically increase the dose in the pain pump. I feel the opiate crisis is preventing him, and other doctors, from providing the dosages that chronic pain sufferers need - but such is life. I'm going to keep fighting and I hope my notes here can help someone to better understand pain pumps and the situation I am in to benefit them. I apologize to you and everybody who reads this if I sound like a whiner and complainer.
Posted 3/3/2021 9:41 AM (GMT -7)
Keith, do not feel bad about coming here & posting, that's what Healing Well is all about. Everyone's pain is different & how it is being treated. You will find in this forum people with pumps are being treated for back pain, CRPS & spasticity. Your situation is unique.

Now that you have emailed the dr twice, it's time to make the phone call & I would do it today. You need help & the dr needs to address your situation.

Yes, you are correct about one thing, the CDC guidelines target patients on high doses of oral pain medications. People with pain pumps are not affected at all because the medications used in the pumps are at much lower doses. The reason for the lower dosage is the medication is pure without any additives.

Keep us posted.
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