OK so my father had a pump implated monday afternoon. Since monday he has had no relief what so ever. My father suffers from chronic back pain due to many injuries in his youth. We thought that there was no hope until someone mentioned he could manage his pain and get back to living by getting the Morphine Pump...so we did. We know a few friends who have it and LOVE it, and have heard nothing but great things about it.
My question is- has anyone had side effects from the pump??
has anyone had more pain getting the morphine pump...
My father has not been able to get out of bed for more then 5 min without having back spasms and severe leg cramping. He cries out in pain from moring till night. He has lost his appetite. He has had a few occasions where he's wanted to throw up. He hasnt slept very much since monday, and there is no comfortable position. He cant even sit up in bed without being in pain due to his legs cramping up.
Its been about 4 days of no relief...did we make a mistake?, Because its feeling like it
He has also had a severe headache since monday.. it comes on VERY strong when his legs cramp up..
I am 22 years old and i am LOST... my brother and sister are helping out so much but there is only so much we can do for him... i need help, i need guidence...
Hi Money, I have a pump too and because the potency of the intrathecal meds is so high and varries from one person to the next, starting out undermedicated is prety much the norm. When I first had mine put in, I stopped taking meth the first 3 days of the pump and started at 2 mgs a day, after 6 months and 16 adjustements I wem from miserable at 2 mgs a day to 13.2 mgs a day, where getting relief.
He saw me weekly for the first 4-6, then every other week for the next few months and the last adjustement were 2-4 weeks apart. There isn't a conversion or way to gaurentee relief when the primary goalis to be safe and not overdose your dad., It's just another med they have to adjust. At best, if they get him in weekly for adjustments they are being agressive. If he was in hospice they would adjust it daily, but if he's not dying, he should be able to get through the titration and adjustment process just like everyone else.
As far as the headache, it's not uncommon to loose or or develop a spinal fluid leak after insertionof the cath. Spinal headaches are classic in that there is no other pain when you brain sits down onto your skull because you don't have enough fluid. It's a binding make you barf when you stand kind of headache. You can either ride them out flat on your back, whih makes a bad back worse, or his doc can be agressive and do a blood patch at the site of the cath. Fluid has no closting ability so the blood/hey draw blood from his arm and inject it into the IT space near the cath isertion and it trickles out both the leak and the whole from the injection and seals it. If succesful the relief is imediate, I've had 5 from multiple procedures and surgeries that nicked my dura and caused leaks and they all worked like a champ, The blood tops off the missing fluid so it relives the pain instantly and the clotting agents in the blood seal the leak.
This is normal for somene that has probably taken a decrease in meds and simply needs adjustement and the headache is just as easy to explain. Another cause is morophine, it can increase incranial pressure and he may be better suited for dilaudid or fentanyl but it's way too soon to tell. If he was expecting intsant relief, no side efects and no post op pain someoe asn't realistic. The doc hopefuly gave him orals to supplement and he shouldn't be afraid to use them or ask for them and ask to bee seen as often as possible to get the pump adjusted to the corect dose for his pain. It may be 5 times that much but when it comes to pups, a half mg increase is considered a huge increase, more would simply be too dangerous.
Once the dose is adjusted, he will likely think it was the best decsion he made, If he gives up because he thought he would have instant relief and can't manage the increased pain durng the titration period that may take weeks or months he watsed 40K. He may max out side efects with morphine and have to switch to another med before he truly finds relief, a pump delivering meds is no different than orals in the sense you have to find the right dose. There isn't a perfect conversion factor from orals to IT meds. Pump meds are by far less impairing than orals. It just takes time to find the right dose.
Call the doc,describve the headache and describe his levels of pain. Something can be done and this hardly means the pump was a mistake or failure. If he discontinued all orals, he may very well be going through withdrawal if the dose is too low, that would explain everything too.
Hang in there and Good luck, Dave
What medication are they using in the pump? My friend just had the exact same thing happen. When her muscles started spasming and cramping they ran in and pulled the thing out. This was when she was in the hospital for the trial run.
They started her on morphine, which she has NEVER done well on. They needed a super high dose (according to her) and still no pain relief -- just horrible side effects like really bad nausea. Then they switched her to Dilaudid...which perhaps because of the failed morphine trial, also required super high dose, and then she started having horrible muscle spasms/cramping and they pulled out the pump.
There is another med that can be used, fentanyl, which is the best medication for her as she's been on the patch for years, but the hosp. she went to had someone die on the fentanyl pump trial, so they only use it if you are already in the ICU.
She has such high hopes too, so I can understand how your Dad and family feel.
But this isn't right, something needs to be done!
Listen to Shoreline because he knows his stuff. I didn't mean to suggest that they remove his pump, since I really have no idea if his case is similar to my friend's. It just reminded me of it.
My Mom is on the pump too and she's had nothing but trouble. It's been a year of slow adjustments and she's now maxed on the morphine and takes breakthrough as well and she's still in a great deal of pain. He's added a lot of others to the morphine to see if it would help but it hasn't. He mentioned changing the med to I guess either dilaudid or fentynl so we'll see. She gets very discouraged at times.
She has lost a lot of weight as well and they mentioned her taking something similiar to marijuana to help with her nausea and appetite,but I don't think she liked it.
I've heard of others who have gotten their lives back with it so I guess it depends on the person. I hope he gets some pain relief soon.
We went to the doc and he increased his dose from.9mg to 2mg. We explained the headaches and even had to wheel my father in with a wheelchair because he can’t walk. And the doctor checked his wounds, made a note and asked what other problems he was having. We said his severe headaches, and the doctor even mentioned spinal headaches but gave no reason to why it’s happening, or what can be done about it. He kind of just bounced from on thing to the next and said he would see us in about 2 weeks. Now he’s on vacation..
My father is on Kadian and MSIR for his breakthrough meds. His doctor recommended we take him off the Kadian... but our friends say its going to be had and hes going to have withdrawals… and I think he had a withdrawal this morning
I know more now from reading your response then I have in the past couple days.
I think we did have this thought that he would be in less pain, i never imagined it would be 10 times worse. I just feel so bad that he is dealing with this kind of pain, all over his body
I called in to his Surgeons office this afternoon and spoke with the on call doctor. I mentioned that my father began to hallucinate this afternoon, and the pain in his spin is so bad he cant lift his head or move it. He looks like batman…
They called in some ambient to help him sleep, and said they couldn’t get someone to do the blood patch this weekend. The on call doctor said if the headache is still bad by Sunday night they will bring him in 1st thing in Monday morning to Florida Hospital to do the procedure.
This has been a hell of an experience. But I’m so lost on how to feel. Some people love it and other don’t. I pray to God that this works for my father…
My fathers pump is Morphine. He has been on pain meds since 1999.
The on call nurse said that they might have to re position the pump. It might be pinching his nerves. He had nerve pain prior to the pump in his legs.. but nothing like this. I just want him to walk around outside and enjoy life again. I know its only been 5 days almost 6… but this would drive anyone mad. Intense pain, not being bale to take care of yourself, no sleep, nausea, spinal headaches… I wouldn’t wish this on anyone…
I hope it doesn’t come down to taking the pump out. I hope that my father start accepting the pump and everything gets better….
Some family friend told us it will be the best decision hes made.. and it will give him his life back..
We were going for the morphine pump so he can exercise more and be more active . My father needs to be put on the list for liver transplants.. and our appointment with that doctor is in August… We cant travel to Gainesville if my father cant even walk to the bathroom without crying out in pain…
Im sorry Boxerluver to hear about your mother. How long has this been going on for?? Would she have the pump removed?? What was wrong with her before the pump??
My wife got pump after 15yrs of 16 vicodan a day.I took care of her and raised son.After 3 years with pump she with drew from us into computor and had them keep upping it till it is straight morphine.She left us to be a digi scrapper and stay loaded in front of computor all day.My sons teachers sister got pump left her family in 3 yrs. my friend step daughtor got pump and is now no use of left arm.!%yrs slept in hospital only to loose to a high given by a doctor that shouldnt have put pump in because she had been in rehab 3 times for over use.Now till she burns out or has needle move me and son just cry as we watch her be DIGGIQ [removed].She has not talk to me or son since a year because we wanted therapy!
Dave I have read some of your posts about the Yakima Fruit Paste for constipation which is a big problem for me with my pain meds. I made a batch of it and just started taking it today, my question is does it make any difference when you take it, morning, night, before meals, after meals or on an empty stomach between meals, any help would be great thanks. David
Hey David, No it doesn't matter when you use the paste. The key is to finding the right amount and then adjusting the dose so things aren't too loose. You can still mix things up and use kristaloose or miralax or Cascara segrada, There just isn't a one dose suites all. I made peanut butter and paste sandwhiches and would eat by the spoonful, but probably never ate more than 3 table spoons a day.
It is a shame to hear about folks that don't take advantage of the relief they get and slip off into their own world. That's really no different than doing the same with oral meds. But now they have a pump which can easily be used to justify their need for meds because someody wouldn't have a pump implanted if they weren't in real pain, That's not entirely true. Some doc push pumps and over sell their ability, some docs never ask the question, what are you doing with the relief you’re getting now? Some folks would have slipped away into digi land given high doses of orals or high doses of pump meds, Did any of these people actually go through the trials properly, see a psychologist, take the MMPI, have a psych eval, did the doc do a plecebo trial? Or were they simply sold on what a better way to deliver meds a pump is.
Of course the pump can be adjusted to the point where someone is out of touch with the real world and expects the pump to cure them, relieve all pain and they continue to increase beyond the point the pump is helpful and becomes a disabling factor. At some point the doc has to say no, this is the best it's going to get and refer the patient to a PM psychologist to lean some coping skills.
Realistically how does a pump or an oral med rebuild a life with no effort on the patients part, how does a pump rebuild years of lost strength, and endurance without some effort on the part of the patient. The pump doesn’t deliver motivation to change what’s become an unacceptable way of life, Aany opiate can make an unacceptable way of life acceptable and thit’s tough to argue with that person because they have a doc on their side that doesn’t really know what’s going on, Heaven forbid you tell the doc what that patients life has become since implanting the pump and shame on the doc for not asking or listening to family members when they say mom has turned into a digi recluse and does nothing to improve her own situation.
We can’t really blame Budweiser because there are alcoholics so it’s hard to blame the pump because a patient is content with nothing more than pain relief. Ability to function and what hey do with that relief should be questions asked by their doc at each and every apt .Untill the patient decides this isn’t an exceptable way to live or the doc puts his foot down and actually asks how the pump is helping the patient, nothing is going to change until some type of intervention occurs. Since when did it become OK to do nothing productive and spend your only upright hours on the computer, that’s not a pumps fault, it’s the doc that didn’t explain things and has never said no to an increase when a patient has never made any effort to improve their own situation. Once the amazing pump is implanted and relief found, what the patient does with that relief could have been easily predicted during the screening process if a psych eval had been done.
Any med can be abused regardless of how it’s delivered and sadly part of addiction is justifying any and all behavior. When you have pain and the abusing patient asks what do you want me to do, suffer, somehow you become the bad guy when your loved one is nodding off at the keyboard and doing nothing to improve there own situation. If someone can spend 8 hours siting in front a computer, they could also spend 8 minutes on a treadmill every day , what do they have to loose by trying to improve their own circumstance. It’s their choice to do nothing with their life and the new found relief.
Good luick, Dave
We rushed my father to the hospital this morning..He got worse over night. He has no idea what he is saying. It reminds me of my grandfather when he lived with us, he had altzheimers. They did a Ct scan to make sure his brain is ok and it is. They think he might have an infection becasue he had a 101 fever. his legs still cramp up.
When we went to the hospital they were addiment about just keeping him till monday so the doctor could see him..we told them that they needed to do more because he was getting worse.. The doctor walked outside and then came in telling us he was going to ICU. he is there now with my sister.
My father has been in bed since monday with headaches and all they can say is well... i guess if it is still going on in 48 hours then we will do something- having a spinal headache for 6 days straight will drive a sane man mad- dont doctors understand?
I am worried and i want this pain pump out. It is causing more pain then anything else. After reading some of those stories of how its not helping scares me
My father is terminally ill and this was supposed to add years to his life.. not take him away sooner...Im scared
Hi moni, I know your concerned about your dad, but I knew from the get go they started him low and the headache was a spinal fluid leak, this isn't unusual and the stories about people being zoned out in law law land have chosen to live their life that way. It would be like blaming the beer for an alcoholics actions.
They make that choice, they choose to do nothing to help themself and expect rediclous levels of pain reduction and continue to increase their dose untill they are so doped they are satisfied spending the rest of their life on the computer or in bed letting the rest of their life fall apart. My wife wouldn't stick around if my daughter couldn't wake me up when she got home from school or I did nothing to improve my situation except ask for increase after increase that caused more impairment.
Because your dad is terminal, the docs can and should make the adjustments more frequently untill his pain is controlled without the type of impairment others have learned to except, it shouldn't have to take 6 months to get someones dose corect that's terminal. They simply need to be more agressive and make more frequent adjustments.
A 1.5 mg adjustment is large, but your dad is still at 1/6th of the dose I'm on. I don't spend my life on the computer, once I got rellief I started working out, I rebuilt what I lost from 3 failed back surgeries as far as strength and endurance and I just finshed working 3 days in a row with 12 screws, 8 rods and a failed 6 level fusion. I'm not impaired by my pump. If I asked for enough increases I certainly could be a couch potato that didn't care what went on other than when I could get my next increase . I wouldn't care if my dose was so high I couldn't stay awake or have relations with my wife. It's a choice to go beyond a certain point and I choose not too.
I'm not miserable at work because my mind is actively engaged in something else that's productive, I need to have a half a brain left in order to function. If I didn't want to feel the pain of loosing everything I have or care about, I could jack my dose up so high nothing else but my comfort mattered too. That doesn't happen when patients are honest and when pumps are matched to patients that are good candidates that wouldn't allow all that to happen.
These are also second hand stories, there is no such thing as a pump running on pure morphine, the concentration may be 30 mgs per ml of saline solution, but that's not pure morphine. Pure morphine would crystalyze at the cath tip and cause a granuloma, so the stories are not only inacurate, but those people choose to live like that. I could have my pump increased and shoot for lower levels of pain, but I wouldn't be able to function and I'm sure my life would fall apart too. It's a choice to live like that and you have to lie to your doc to get them to make increases as your life is falling apart because of the level of dope someone is on, that's the patients fault. If the doc knew the truth, the increases would have stopped long ago.
Please don't take stories of abuse, misuse and poor patient selection as a sign this won't work or even as the norm. Taking the pump out won't fix the spinal fluid leak, oral meds cause more impairment at doses that provide equal relief. Obviously these people have gone way passed equal and reasonable relief that don't care they have lost their spouse and home in a drug induced haze. They are content to live like that. If your dad isn't the kind of person content to do nothing and watch their life crumble, then the pump can still be everything he hoped. Nothing so far is outside ordinary side effects, the pain of adjusting to a comfortable level and a risk of placing a cath in the spine, but that can be fixed.
Moni, I am so sorry to hear your dad is in the hospital, but being as bad as he is it's probably the best place for him to be so they can take care of him. That was a lot for you to handle especially as you were not expecting all those complications. I hope the docs figure it out and he can get some relief. Make sure you take care of you during this stressful time.
Thanks for asking about my mom. She was in a car accident 20 years ago and at first they said she was fine but she had hurt her neck and back. I'm sorry I haven't seen her mri to be more specific with which exact locations. She did the hydrocodone thing for years and then finally went to a PM and was put on the patch with breakthrough meds but she wasn't getting any relief so after about 3 years she decided to go with the pump. If the different meds don't work, I don't know if she'll get it removed. She's really worried because the pump was her last resort and if she doesn't get relief from that I'm not sure what her options are so she's getting pretty discouraged.
OBTW, they put my grandfather on the patch, 25mcg and he had hallucinations something terrible and had to have it taken off after 3 or 4 days. I think it's harder for older people to handle narcotics.
Again, I hope your dad gets better and adjusts to the pump so he can have a better quality of life. I'll keep you in my prayers.
I have had the Morphine pain pump and it has been my life saver. My back pain was intolerable. I am still on muscle relaxers, pain meds, and EX-LAX, lots of it. I do hope you family member is able to keep the pain pump and it will be as helpful for them as it is me.
You made some good points in your message. I have the Morphine Pain Pump, I am going to my pain pump Doc tomorrow and have been toying with whether I want him to increase the meds. or not. I am still having the take the Hydrocodone Meds with muscle relaxers and Mobic a year later after the pain pump. I HATE taking PILLS! I have low back pain nerve damage from an automobile accident soo to be 6 years ago. I have had the pain pump less than a year. I had all hopes that the Pain Pump was the wonder drug that would whisp all the pain away! Not so, but I would have it installed all over again if I had the opprotunity to do so.
Like I said I see my Doctor tomorow to discuss some issues one is does this Pain Pump cause severe constipation? Poor bladder control? Then on the other hand cause the the inbiliity to urinate at the same time?