Anyone considering pain pumps please read

HI straydog,

Incredable post!!!! These are rhe kind of things that have so much importance to anyone(which is alot i believe) that has been staring at the cieling all night contemplating the pumps advantages vs the disadvantages. Thank you so much for the upfront honesty. I'm sure that has alot of people asking about this possibility when they consider the pump.

                                 Hope Everyone Has A Pain Free day!!!

                                                        Kind Regards,

                                                             Mike

 

Susie Que ...
Oh, thank you.
I am sorry for the way
things turned out for
you.
You will go on and
maybe things will get
even better in a time.
It is scary.
Pamela

Hi Me, no, thats a very good question. I did not go thru any withdrawals when my pump was implanted. The meds that go in the pumps are much more stronger than orals meds to begin with, the catheter is placed in the intrathecal space where the pain receptors are located that sends the pain signals to the brain. The medication basically drips in this space. I am on much less pain meds w/my pump and it also bypasses the liver. Try thinking of it in terms of being given IV pain meds instead of orals meds but w/o any drowsiness or feeling goofy. Now, we did a couple of people who posted here that they went thru w/d, but those people were on really high doses of orals meds too. At least thats what they posted. I just really can't fathom a dr voluntarily putting his patient at risk. I was also given BT meds and still receive them in addition to my pump. I suggest that you ask your pain dr about the withdrawl thing and if he gives BT meds with the pump. Some drs do not give BT meds with the pump. Also, ask your dr if he decided or something happened that he was not going to be seeing his patients, does he have a backup dr that will take care of his patients. 

You are started out on a low dose of pain meds when the pump is initially implanted. Alot of drs will see the patient every two weeks and slowly increase the doseage. Ask your dr what his schedule is regarding increases in the pump. This has to be done slowly to make sure you are going to tolerate the meds ok. My system does not tolerate medications well at all. I am not speaking of pain meds either, its any medication. I either had allergic reactions or terrible side effects and we ran out of pills to pick from. My pain was also in so many different parts of my body that one pill could not handle it all. This is why I have the pump for chronic back pain. I have Dilaudid, Sufentanyl, Clonidine & Bupivacaine combo in my pump. My meds come pre-packaged in one large syringe from a pharmacy to my dr. I highly suggest this form of getting your pump meds too. I do not like the idea of a dr playing pharmacist with different vials of medication to mix in his office for the pump. He can program your pump in any manner needed to release certain meds at whatever rate. I take Dilaudid for BT meds.

The pump has been very good choice for me. I am much more mobil and functioning at a much better level than previously and in alot less pain. Oh yes, I still have pain, always will, but it at a level I can tolerate. If I have a bad day its usually from overdoing it. I am my own worst enemy in this situation. The pumps are not for everyone to say the least. For some like me it can be a life saver. I will say that if a person has ran the gambit of drugs, procedures and failed surgeries and no surical people & still no relief and they have no quality of life, then the pump may work for that person and in my opinion its very much worth trying, you have nothing to lose and maybe alot to gain. I am the type of person that will try anything reasonable if it will give me the possibility of having a better quality of life. I do not limit this to just chronic pain, I have many other health issues. Alot of people are afraid of the pumps and those people do not need to have one. My pump is on recall simply because of the model number, my pump works just fine and I have no intention of having it taken out and replaced. If it ain't broke don't try to fix it and my dr agreed. A good pump dr knows what to look for in a pump that my be starting to malfunction. There are alot of uneducated pump drs that are using the wrong medications in these pumps and causing many problems for the patients including granulomas at the tips. This is from using too high of a dose or the wrong medication. Not just any drug can be used in a pump.

If you have anymore questions please post them. If I can help out in any way I will. Susie

Kttn I can only say if you have a good dr and he knows his medications then you should not go thru any withdrawals at all. No, I do not feel high, fuzzy headed none of that. I am able to drive a car and do anything I want with a clear head. I babysit my 3 yr old grandson alot and sometimes I go pick him up to save Mom some time. If for one moment I thought my senses were off the slightest there is no way I would drive him anywhere and I would not keep him for the day. If I am real tired, I make his Mom come after him or hubby will drive him home. Also if I am needing BT meds or muscle relaxers I do not keep him on those days either. He requires alot of energy and attention and I really have to be on my toes to keep him. I would never for a moment keep this little angel if I did not have all my faculties about me for the day. I am truly much more clear headed with the pump than while on orals. If the meds in the pump make you feel high or whatever, then you are getting too much medication.

 

A pain pump opens up a whole new world of better choices of meds for pain control. We were so limited with oral meds for me and we were getting down to the fine line of running out of different ones to take. I just have this goofy body that does not like medication period. Yes, I was on many different heavy duty oral meds before having the pump put in. One thing I want to bring to your attention because this is something I did not understand. Your pump does not take care of all pain. What I mean by that is actually 2 things, 1. you will never be pain free and will always have some pain but you will be able to tolerate it and function much better; 2. I had to have 2 root canals done recently, and had to take my BT meds for the pain. Of course this was done with my pain drs permission. I declined meds from the dentist because he does not understand medication like my pain dr and I needed someone who knew what would work with the meds in my pump. Thats why before having the dental work done I discussed it with my pain dr. As it turned out my pain dr said my BT meds should work fine. I hope I have explained this well enough w/o confusing you.

 

Now about the surgery. It took me about three months to fully recover. Keep in mind I have crohns disease and some of my medications for it has lowered my immune system something awful. Last year my PCP had a lady in the office with the flu and she had the lady leave her office before she would let me come out of my room to leave, plus she the girl wipe down the counter where you check out. I basically have no immune system. I do Remicade infusions for the crohns and this interferes really bad with the healing process. I think with most people its about a 6 week recovery. I will not lie on this one, I did have post surgical pain-no the pump does not take care of that pain so you will need your BT meds. But, I was able to manage with the BT meds. Do not wear anything tight fitting in the waist at all. So, stay out of your blue jeans until you are healed. You are not allowed to shower until you see the dr for the 1st post op visit, he will tell you then when you may shower. My husband says the scar on my back is about 6 inches long, its on my low back, that was where the catheter was placed. The scar on my stomach is absolutely the ugliest scar I have on my entire body. I had a terrible surgeon in my opinion. He certainly had no experience with cosmetic stitching,lol. I have about the same size scar on my stomach. My pump is above the waist line kind of on the side, they use to implant them lower, but people were wearing tight clothing in the waist and it caused alot of the pumps to flip, so they started implanting them higher up. Now, I have read recently on another forum the pump people had binding they wore until they were healed from the surgery and I can believe that would be of great benefit. The pressure of the binding helps keep everything in place and there is less worry of anything slipping. Plus the pressure of the binding really feels good, it does not hurt. It like having a pillow to put against your stomach after surgery when trying to cough or get up. Until healed keep a low activity level.

 

I hope I have helped, anything else please post it and I will check back. Oh, you may have 3 clinics but will any of the drs in those clinics see another pain docs pump patient-thats a real problem with the drs. Check with your dr please. The other 2 drs in the clinic where I go will not see each others patients. Take care, Susie

Susie, thank you so much for all of the fantastic info. I was looking on medtronics website yesterday & it says there is a pump with almost a remote control looking device so you can get "extra" shots of pre-loaded meds for BT pain. I had expected some pill for the BT meds, a lot of online articles suggested that most people still recieve them. But I was very happy to see the new device with the remote. When we (the dr & I) talked about how much better it would be on me physically (the constipation, the liver, etc) I was so happy. I feel like a freak of nature that I have such a high tolerance to pain meds..... it is embarassing when I have to go someplace (like er, or gyn) that treat me like I am a drug addict due to the meds I am on. I know most people can relate- its just so embarrasing! And as far as scars.... who cares! I have some from a gallbladder surgery anyhow. As long is there is some pain relief I would go through almost anything. I was also very glad about the non-fuzzy felling. Thats fantastic! And I also expected some amount of pain, the dr in the beginning had said there was nothing that would ever take it away 100%. I think pain is normal when you have something wrong, its your body telling you something. Not saying I enjoy it.... no way huh-uh. And the drs at my office will see any patient that is there, not a big deal at all. They have a large staff & nurse practioners as well. So is not unusual to get a different dr when they are busy. I just prefer the same one. Hes close to my age (early to mid 30s) and also suffers from chronic back pain. So its nice to have a dr who actually GETS IT!! Thanks for all the great advice & info. I really appreciate it. And can I ask what all is in your pain pump & what the meds are for? Is it just for pain or can they put muscle relaxers in there as well? I know when dr & I talked about it, he began to throw out all these meds I had never heard of. And also, did it help with constipation? Thanks a million & I am so HAPPY you can handle your grandbaby. I want children someday & since I could never possibly carry I would like the option to adopt. Its just seemed so impossible with all the pain & pills I go through. Thanks again & I can't wait to hear back from you. You have been a ray of sunshine today! (and I live in FL- that says something!!!) :)

Kttn, yes there is a pump that is designed to let you give yourself a bolus. I have had my pump since June of 05 and at that time there was a new pump out that the dr could program to say at a certain time every day I would receive a bolus. Lets say I had terrible pain every day at 6:00. He could program the pump to give me a bolus every day at 6:00. But, for reasons unknown my ins would not pay for that model. I imagine it was the cost of the pump, they are always going to pay for the cheaper model. But to be truthful I really did not need that feature. If I had severe pain I could call my dr and go in and get a bolus. He could program my pump to release extra medication and set the rate slow enough for me to be able to drive back home before it hit. It was a 60 mile round trip for me. But, with the rate being slow enough the severe pain just sort of melted away and I never got goofy feeling or anything like that. Thats why I love the pump, no high, no lows, no fog, no fuzzy feeling or balloon head none of that crap like I did on oral meds. Best of all no clock watching.

Now, the only thing I know they put in pumps for spasticity is Balcofen. I do know many people with MS has pumps and they put Balcofen in the pump for them. But to say to use Balcofen as a muscle relaxer I cannot say. I too use Zanaflex as a muscle relaxer and I am on the 4mg too. My dr says you can go up to 36 mg a day on Zanaflex. When I had taken a bad fall once I was taking them every two hours. Now I use them every 4 hrs when needed. I use way more Zanaflex than Dialudid for BT pain. I find I have a big problems with muscle spasms and get rid of the spasm and I get rid of the pain. These are the 1st muscle relaxers to ever help me. I have a very high pain tolerance therefore, along with that and being my own worst enemy, thats how I get into trouble with overdoing it. By the time I take something the pain is so escalated and that its a little difficult to get the pain down. My pain dr says that the trouble with people that have a high pain tolerance.  Our pain scale is so much different than a normal persons.

 

Here is what I have in my pump; Dilaudid concentration level of 25mg/ml, Sufentanil 25mcg/ml which is an opioid analgesic, Clonidine 150 mcg/ml which kind of like an anti-anxiety med I think, I will look it up, & Bupivacaine 15mg/ml and its like Marcaine or Novacaine the dentist uses. Check out my doseage per hour and day and this will blow you away. The pump releases 0.182 ml an hour and a total of 4.379 mg in 24 hrs. Now you know why the liver loves the pump,lol. Keep in mind these are compound drugs and the syringe comes prepackaged and loaded for each refill. My dr never mixed my meds himself and I don't think they should, they are not pharmacist. In the pumps you are receiving pure drugs, not something that has been diluted down thats why we don't need large doses. Plus the drug is delivered straight to your pain receptors in your spine that sends the pain signal to the brain. Think about it, if we were given the IV doseage they give in ER's we could not function, we would be laying down most of the time and we would build up a tolerance I think very quickly. These medication work so much differently than pill form. I started out with a concentration level of 10mg of Dilaudid in my pump and over time its been increased. My attitude with my pump was for me to get myself pretty much off of all oral pain meds and let the pump handle what it could. Initially, my dr put Morphine in my pump and I could not tolerate it, so we changed it out. Dilaudid is an old drug but its very effective for pain and great in pumps with few or no side effects. Add the other drugs to the mix and I have a good cocktail,lol. Susie

Even with the new bolus pump it has to be programmed by your dr because a bolus throws off your refill date unless the pump is programmed correctly. The bolus really is not a large amt released, these pumps are about the size of a hockey puck. The pump is not designed so a patient can just sit and give themself a bolus whenever they want it. The little ole lady must have missed her refill appt-wow, the only way I will miss mine is if I am dead and I won't need it then,lol. Every time I had a bolus given or an increase in my pump it affected my refill date.

Oh and when you do the trial as a rule including me, I thought I had died & gone to heaven. Its been so long since I have been pain free like that. Do not expect it to be that way when you first get your pump. They will titrate your dose till you are at a reasonable response. It took a year to get me at a decent level because of my breathing difficulties the meds can suppress the respiratory system, had to go slow & be careful. For a long tme I was only getting half the amt of a normal increase. Yes, I got disgusted and wondered if I made the right decision. I think at one point we all go thru that. Then finally I told my dr maybe I made a mistake and he started giving me full increases under close supervision. Have you done your physch eval yet? Keep us posted. Susie

Patty, I sure will be thinking about you come Monday. I am so glad you were able to get your surgery approved. I will also say some extra prayers for you. I look at the long & short of the lap band surgery, if a person has illnesses that it can help, it would cheaper in the long run to pay for the surgery than paying for medication over an extended period of time. Not only that but developing other health problems, its just so disgusting these days what ins com can & do to people.

 

I know when my husband retired, his employer said we would have the same benefits as we had as an active employee. Boy, did they lie, we lost our vision & dental right off the top, lost our MHMR benefits, our monthly premiums are outrageous, our coverage stinks, paying 4 times the copay for a specialist, doubled the cost for a PCP, $200 yrly deductible, $1200 out of pocket before they pay 100%. We had none of this when he was working. They really put the screws to the retirees. With a script card that has gone out of sight on the cost of a script, I am spending almost $600 a month for my medications. My crohns meds and  respiratory meds no generic available. I ended up eliminating some of my medications and still pay all that out a month. Jeez.

 

Oh, I thought of this also, ask the dr when titrating your meds in a pump if she does it at 2 week intervals. This allows enough time to go by to see what kind of improvement is made with your pain and to see if you have any side effects from the meds.With Dilaudid being the pain med in my pump I started out with a 10mg doseage, then increased it to 15mg and in Oct he raised my concentration level to 25mg and that really did help.

 

Is your medication not covering your pain? Or are you like me, I had so much pain in so many different areas of my body that my dr said no way could a pill handle all of that. I am beginning to calm down a little over this change in drs I am going thru. It just threw me for a loop. I talked to the lady that handles the insurance in his office and she said everyone at the clinic is just devastated, as none of them knew of his plans to leave either. I am 56 yrs old and I am just too old for surprises like that one,lol.

 

Hope you have a low pain evening. Susie

 

Moondancer- congrats on the lapband surgery! I had seriously contemplated it once under reccomendation from my PCP. I went to 2 different "state mandatory" presentations & I am very glad I did. The first dr made it sound like a walk in the park, whereas the second gave all the gory details. I just decided it wasn't for me. I too have flipped on and off meds (and before the injury) had a physical trainer..... I have been struggling, more like yo-yoing all over the chart for about 8 years. I have done a diet before through a dr called the Zone, it was also provided with phentermine suppliment, a cocktail of vitamins to help keep you full, and other things as well. It was a weekly ordeal but the weight was falling off with no exercise. I actually lost about an average of 10 lbs a week. Unfortunatly at the time I was on duragesic patch & some anti-depressants & had a very bad reaction.... even though the dr assured me I would be ok. I was bummed cause I was learning to eat correctly, weigh portions, lean meats, etc & it worked. There was some foods I missed (pasta) but eventually you can bring it back. My pain clinic has actually opened a weight loss center as well & it is very similar to the zone but with pre-packaged meals (I see the ads while I am waiting & the food looks good) so once I get settled in I hope to get back on it. I just thought I would throw this diet out as it isn't hard really if anyone wants to look into it. Of course, get a dr to help. But, I am very happy you are on your way to feeling better at least in one area. I hate being overweight its the one thing that really bothers me. I hate the looks & not being able to buy clothes that are cute. I wish you the best of luck & I have had a few friends who have done it & have done fantastically. My only question is how will you be able to work out? Or is that not an issue with your pain? I usually use the pool but its even too cool down here in FL to get in right now. Good luck & keep us posted!

Patty I am going to start a new thread on dieting for you, I don't want us in trouble for an off topic on the thread. :)

This is one of those post subjects that should stays near the top
as it has so much info, sure hope y'all keep us up to date on this pain pump info.
Thanks for starting this..
and lots of soft hugz to everyone considering or needing this surgery.
Prayers and sot hugz......
Wish the Doctors would explain this procedure better to us, Thank you...
Thank You...

Hi Stella..... how is the pump working for you vs meds? And where is your chronic pain & does it help? Thanks!