Hello everyone its been a while and i hope you have had a good day. I have been in pain for about 10 years and have had numorous surgeries on my neck, fusions, metal you know the deal. I have been up and down on pain for a long time. I will have a good week and then 2 bad. Feb of this year I had a stimulator put in my neck and its already quit. I did get some relief from it and i will take any that i can get. I decided to take the pump trial to see how it would work or to see if it would be right for me. I am having some stomach problems as well. I went on monday and they put the cath in my back spinal fluid. It seem to do fine till late that night and the next day i had real bad headaches and my head seem to spin a little. However it did get better on the 3rd day and I did real good for 2 more days except for I felt like I was having some withdrawals from not having the patch however they did give me some percocet. I had been on durgesic patch 75 mg every 2 days because it dont last 3. and percocet for breakthrough pain 10 mg 3 times a day and I have been doing this for over a year and it dont work like it use to. I really got some great relief from the pump, the most relief I have had in 10 years. Then when they took the cath out on fri and went home the headache came back and boy i sufferd that weekend because I was leaking where the cath had been in my back. spinal fluid. So now I really dont know what to do about having the pump put in. Am i going to be bothered with the head ache? How often is this a problem? Does it go away and is it normal to feel some withdrawal when swithing over like that. I was on delata not morphine
I would appriciate any advice or experiance anyones had with a pump and may have had some of the same problems. I would like some imput on what kind of experience your having with your pump good and bad. Thanks so much in advance!!!!!!!
I am on my second pump and I didn't have any headaches at all. The cath is put in permanently and it is not removed after it is placed in the spine. I had my first pump in 1997 and the second in 2001 I ran the batteries down. Ask your pain management doctors about the headaches and maybe they can strighten it out but I never had any with the implanted pumps Good Luck and Hang in there Take care geifer
I have never had a headache...have had my pump for 17 months. Once you have it in permanently you should not experience any spinal fluid leakage....make sure the doctor has done lots and lots of these. I have never regretted having the pump put in and would fight to the death to keep it, lol.
Carol did you kinda feel spaced out for the first few days when you had your pump
put in. I did have that feeling but I believe part of it was withdrawal from the fentnal
but im not sure. I really want to have it because im sick of the fentnal and percocet.
what med do you get in your pump? i was on delata. It felt so good to be out of pain
for those couple of days. do you amuined to it like the other drugs? have you had to up your dose a lot since you had it? I really need someone to talk to about this because i dont know anyone that has one. I thank you for your response so much!!!!!
No, I didn't feel spaced out at all. In fact, I was more clear-minded than I had been in years! I suspect you are right about it being withdrawals; has it gone away now?
I started out with morphine in the pump and had it titrated up several times. I also developed new problems and my pain began to escalate. About this time, I switched pain management doctors, and I found a jewel! After a month, he changed me to dilaudid, figured out that part of my problem was SI joing inflammation and did the radio frequency nerve ablation. I am almost pain free now. By that, I mean my pain stays at 3 or lower most of the time. I am finding that sitting makes me hurt more.
You may become somewhat tolerant, but not as quickly as with oral meds. In spite of what your doctor may say, the pump meds can be titrated upwards a WHOLE LOT. I know of people who are getting 23ml of morphine a day.
Please go ahead and ask any questions you need to. I will check back here tomorrow evening and will be glad to answer anything I can.
Hey peto, fenatnyl has qualities that morphine doesn't, so some differencial withdrawal wouldn't be unusual. Febtanyl has delta receptor activity that morphne doesn't, so that's what would make you feel off.
As far as the headache,, you like had a spinal fluid a small spinal fluid leak. Spinal fluid doesn't have clotting abilitiy and that blew my first pump trial. I had the spianl heradache the entire Time I was inthe hospital doing the trial so the results were very skewed, everytime I stood upright I would vomit. Spinal headaches are pretty distinct and usually relieved by laying down. A nicked dura or a leak after cath removal or from cathg placement isn't unusual. Some docs will do blood patches to repair and some will simply have you lay flat untill the dura repairs itself and the ehadache goes away. Antoehother possibility is that morphine and everal other opiates increase inner cranaial pressure and a side effect of morphine is headaches. Simple tylenol relives the morphine headaches for me but every one is different. Tylenol wouldn't touch a spinal headache though. Dind't they put you right back on the pacth when the trial was over? 2-3 days is long enough going without fenatnanyl to cause some differencial withdrawal. It just depends on what meds your switching to and from. Some opiates are very similar and th transsision is smooth, some opiates have unique qualities only they carry and that's what causes differential withdrawal when switching away from fenatnyl or away from methadone.
Aside from a sight headache and a lttle differential withdrawal, It sounds like the trial was a success.
There are risks with the pump, spinal fluid leakage is one of the risks but usually resolves itselfon it's own or with a blood patch.
After the in pateint trial and spinal fluid leak it took me amost a year do another trial but thingshave been steadily improving. You also have access to the newest pump available. Either the synchromed 11 or the Isomed, both have med resevoirs 4 times the size of the older models. If I had waited 4 months would have a 40ml resevoir and would be able to go 4-5 months between refills of the pump, but with a 18ml resevorir I can only go 32 days between refills which is somehwhat of a bummer.
The IT morphine, if that's what was used shouldn't have made you feel out of sorts, it was more likely the loss of fenatnyl for a few days. The idea of using IT meds is they can use so little compared to an oral dose you don't have all the side effects or as severe side effects and systemic effects of opiates taken orally that have to pass through all your organs.
I went from meth to IT morphine but my previous dose of oral morphine was 600mgs a day, my present pump use is 8.6 mgs per day. quite a difference, My head is clearer,. constipation is better and I'm generally doing better than when on oral meds. It's not a cure all but is can be a great tool in the right circumstances. That's the purpose of doing a trial to assure it's something that helps.
If you use healthboards search feature in the drop down menu at the top of the posts, just type in Intrathecal pumps and it will show you all the previous posts about the pump. Don't use the google search feature at the very top as it will take you away from the site.
If it turns out morphine causes too much of a headache or doesn't deminsh like many side effects do, they can use dilaudid or any of the fentanyls', carfentanyl, affentanyl and sufentanyl. So if fentanyl works best for you it is an option for the pump.They can also add other meds like bupivicaine, Baclofin or clonodine, all of which can benefit a CP patient or act as potentiator for the opiate.
You might ant to check out the other post about pumps on the first page and there are addys for 2 articles that explain about the different meds used and why they are used. Good reading for any CP patient.
Good luck, Dave
Hi Peteo: I'm new here because I came looking for a support group for people who have pain pumps. I have had mine now since July. This was necessary because normal pain meds no longer were effective and by mouth medication was beginning to give me stomach difficulties because of the high dosages. I had no withdrawals from switching over to the pump whatsoever. My doctor did tell me that he has many patients who have dilaudid pumps as opposed to morphine because it works better for them. It's a personal decision based on your pain and what works best for you. There were never any moments of foggy head or headaches for me either. As Carol said, I left that all behind with the oral meds and am doing much better now. As my dr. said, I'm on auto pilot now until I need a replacement due to low batteries. I think the hardest part for most people is simply the ability to give up control of the medication because that's what you have to do when you go on the pump. You now longer control what goes in, the pump does. You have to have the mindset to know that it will work for you and you will be better for it, otherwise it won't be helpful to you. Go into it with an open mind and know that your life with have a better quality because of it. By all means keep in touch and let me know what develops.
Hey Fowler and peto, just to be clear, the same pump can deliver Morphine, Dialauid or any of the preservative free fentanyl products, there isn't a different pump for each med. But he made a great point about giving up control of the oral meds. You have to look at it as major commitment and trust your doc and turn control over to your doc. Some docs use BT meds some don't, some pumps have the ability to program a stronger dose to be delivered at night or the morning and some dont. These are things you do want to talk to your doc about and finding the right dose and med is different for everyone.
Good luck, Dave
Carol I really want to thank you for your info and i havent had the pump put in yet but im thinking about it real hard. I just had so much trouble with the trial it just frightned me a lot. I went through the spinal stimulator in this past feb. and its aready quit working and thats another thing that makes me a little on the hesident side. Anyway im leaning towards having the pump put in because the pain is just unbelievable. My neck shoulder and arm hurts to no end, and have got to have some relief. They had me on dilaudid during my trial also. I thiink in the end of the trial i was up to .5 per hr and was a fairly low dose. what kind of dose are you on? how long have you had yours? and how often do you have to have yours refilled? thanks so much for the info. pete
Hey Peto, As far as how long yu can go between refills depends n the pump they put in,the concentration of meds, for example, they can use 10mg per ml or 20 or 30mgs per ML, At 10mgs a day with 20mgs per ml and a 18ml pump, my refill time in theory would be 36 days, but it would be bone dry. You don't want to set your refills on the day the alarm goes off or a day later. I did this once and spent the 16 hours prior to the refill in the bathroom doing the withdrawal thing.
The medtronics rep was at the clinic that day teaching folks about the new pump and new computer and telemetry system for the programabale pump. She told me that when you hit the alarm date , which is when you have less than 2ml in the resevoir the pump slows down and can cause withdrawal. So I always schedule my refills before the alarm date, even if it means disposing a weeks worth of meds. The med they put in is also going to determine how long before refills. 10mgs per ml of dilaudid will go much farther than 10mg of morphine per ml because it's 7 times stronger. .5 mgs doesn't sound like alot of dilaudid, but multiply it by at least 7 and your looking at the same as 3.5 mgs of morphine per day. They started my pump at 2.o mgs per day so your bolus test was almost twice as strong as my original pump setting. which really isn't a rediclously low dose. If they use fentanyl, the can put a whole lot more Fent into a pump because so little goes so far. 1 microgram is 1/milionth of a gram. So your daily intake would be measured in Micrograms, I'm not sure what the ratio of micrograms to ml would be but with a med a 100 times or more stronger than morphijne MG to mg, Fent is going to go the farthest and last the longest if that med suites your pain the best.
I don't think anyone is still implanting the synchromed 1 with the 18ml resevoir. That's what I have and my pump is now set at 10 mgs per day of morphine which works out to be about .400mgs per hour during the 18 hour day and .483 per hour from 7pm to 1am. They usually start at the weakest concentration, with morphine it was 10mg per ml but can go 3 times more concentrated. I'm sure they do the same with any of the opiates. However at 30mgs per ML of morphine, If they add baclofin, there is a chance of developing crystalyzation of baclofen at the end of the cath in your spine. It's called a granular cyst or granunoma sp?. , if you have baclofen as an adjunct in your pump it can block the cath and stop all delivery at higher concentrations per ml, 30 is what they try to avoid when combining morph and baclofin. So they are hesitant to go to 30mgs per ml in order to extend my refill time because I also have Baclofin in my pump.
The disadvantage of the synchromed programable pumps are that they are battery operated. usually 4-6 years before the entire pump has to be replaced. They can leave the cath and simply replace the pump if the cath is working fine and both pumps have the ability to run a die through them through a side port to make sure the pump is delivering meds and isn't blocked or has an internal leak.
The Isomed and Arrow pump work on a vaccum principle and the amount delivered is based solely on the concentration of the morph, dilaudid or fent in the pump. If you need an increase, they have to withdrawal the weaker concentration and do a fill with a stronger concentration. Refills cost me 55 bucks with each refill with medicare and adjustements cost me $25 a visit.
With the vacum pumps, they flow at one continous rate, have no batteries and can last as long as a lifetimne. But you can't program increases at night, you need a refill for every increase and it took me 16 increases to get from 2 mgs a day to 10 mgs which they just did that last increase last week and it seems to be the magic number for me. I've seen folks much higher and much lower. Just like with orals some may need 120mgs a day and some may need 600mgs a day. Pump refills are solely dependnet on the flow rate you need, the methe strength of the med in the pump and the concentration per ML. I'm probably at about as good as it will get. I'm getting about 50% relief that drops my average pain level down int the 5 range, It can still spike up from overdong thigs but fortunately my doc doesn't see it as a cure all and I still have oral BT meds.
Because my pump, at 10mgs a day with a 20mg /ml concentration only gives me 4 weeks between refills, I have considered switching to Dilauadid because 20mg per ml of dilaudid will go alot farther than 20mgs of morphine per ml. I'm not sure I want to start the whole titration over with a new med. There are conversion charts that say X amount of morphne is equal to X amount of dlilaudid or fentanyl, but those are just ball park conversions and would likely still need some adjustement.
My clinic has been great about getting me in for adjustments but after 16 in 6 months, I'm starting to feel like I'm pushing my luck. probably not but you know the deal, don't make waves, fly under the radar and avoid any problems for that really unfounded fear that the whole rug will be yanked out from under you.
The biggest decision, if you know it works is to go with a programmable battary operated pump or the Isomed vacuum pump which works off vaccuum pressure inside the pump. It only delivers at one rate but doesn't need to be replaced. Both the new programable and Isomed have the larger resevoir so you cold go as long as 6 months or more with a 40ml resevoir depending on flow rate, concentration and strenght of meds.
I'm sure you have lots of questions and the medtronics site is a good place but first hand experience is better. I'll let some other folks that have had them longer answer some questions, I'm not the pump expert, but did 3 years of research and 2 trials before going ahead with the pump. I talked to medtronics, I talked to the medtronics rep, I talked to several docs and alot of patients . That's what you need to do to help with the decsion because it is a huge commitment and having a tuna can under your skin is kinda strange.
Good luck, Dave
That test dose was just to get aballpark idea where to start.