I have had two bilevel surgeries that failed. One in 1990, the cervical one were one level colapsed and never fused. Of course they never Rx'd opaites back then. I tried every modality available several times. Then in 2001 I had a bilevel Lumbar surgery and it was fused tilting to the right. I also have Severe DDD at all levels of my back. The curve in the Lumbar fusion has locked up all my facets and I have virtually every level in my spine that has either central or foramianl stenosis. 90% of my pain is in my spine (ALL of my back).
I have seen 5 pain maagement doctors till I found one that was not opioid phobic. Over a 7 year period I have tried every LA pain med and SA pain med. The only ones that dropped my pain from an 8-9/10 to a 4 was the Duragesic patches, and Roxicodone 30 mgs. At first I had great relief and had a life again. Then about a year ago the tolerance or diease (or both) have increaesd and I am now on 2 100 mcgs of Fentanyl every 48h and Roxicodone 30 mgs 7/ day 1-2 q4h. Plus valium for spasms and anxiety, 10 mgs q6h. I'm maxed out on pain meds per insurance and pain docs will not go higher. We tried and it made no diffrence.
I was referred to a pain Doc that does pain pumps and he says that he thinks the pump will help reduce all of my back pain from the base of my head to my sacrum. He wants to do a single injection for a Trail with Dilaudid, Mepivicane and baclofen. Then if succesful he will implant the permanent pump.
I have many reservation as to the single injection as a True trial. Also, I have heard from a group that only has Pain Pump patients in it that the refills are costing anywheres from $1,000 -$2,000 per med. I only have Medicare for insurance and with the meds that he is talking about will probably be billed at the above prices which Medicare has been approving and paying there 80%. That leaves me with 20% of around $700-$800 for the meds plus the refill and pump adjustments. Many of the people in that group are saying that their Medicare copays are coming out to about $700 every 2 months. They were told before surgery to not worry about the copays as it's only 20% of medicare. Now they are getting billed the $700 per refills and that is the Medicare copays portion.
Are my concerns valid or does anyone have differen info about the Trial/ Permanent Implant and refill copays. I can NOTpay this! I only have SSDI and I'm getting real nervous. During the consult with this Pain doc(my other pain doc referred me to him for a consult as she only does the Stimulators). He talked more about other things rather than my medical and pump . When it came time for me to ask my Questions he said "sure...ask away" then was interuptted for a long distance phone call from Cleveland as he is also a Pain management Instructor at the Cleveland Clinic. He said he'd be right back...but, 30 minutes latter the nurse came in and said the doc told her to schedule me for the trial at an out patient surgical site and then a follow up appointment. I asked to talk with him again and he came back into the room and I told him that I had more questions. He then said that he is way behind in his schedule and only answered two questions. Would the pump be a medtonic pump? He said yes. Then I asked if the pump would reduce my pain in all of my neck, thoracic and Lumbar areas and he said yes...he'll place the catheter up high. That was it. He then walked me out to the appoinment desk.
I talked to many patients in the waiting room and they all loved the care there. One person I meet on-line had her pump put in by him and she recommed him. But she had a three day trial and his pactice was not as busy. His wife is an RN and she does all the pump refills and med refills while the doc screens the patients, teaches and does the procedures. I don't know if I'll get more questions answered when I see his RN wife following the trial.
Also, does he need a pysch eval and authorization from Medicare before the Trial or just the permenant Implant.
I am at the point were I can not be on my feet longer than a half to an hour per day and then that sets off my pain for the rest of the day where I have to lie down or lie in my recliner. My BT meds only work if I take three at a time. That's Roxzicodone 30 mgs x three= 90 mgs. My pain doc said it was O.k. as long as I don't go over my 7 pills per day.
I really need this pump but am I biting off more than I can chew!
Would a changed to a Medicare FEE for SERVICE Advantage insurannce plan be better that has a maximum pt out of pocket yearly amount...like a BCBS. If they are in my state and if the doctors and hospitals accept there payment scale: 80-20 of Usual and customary. This doc does accept Medicare assignment but I also had to sign a paper that said that I am responsible for what my insrance does not cover.
Are the people correct about the costs from the other group?
ANY info from people with Medicare and have a Pump have any suggestiuons or be able to shed more light on these topics!
Thanks SO much for your help!
Re: Shoreline or other Pain Pump Patients on Mediicare!
Hey Tony, I have had no problem with medicare, I was pretty much in your situation where an insuarance company couldn't even think of anything else for me to try so they really had no alternative to aprove my tiral and pump. Everything has to be aproved in some way, but what concernerns me is the promise of complete relief. Sure it's posible if you don't mind being pumped so full of bupivicaine ""maracine" and dope that you need a foley catheter to pee and your ready to give up sex for the rest of your ife.
I've talked to Medtronics, saveral docs that do implants and management and nobody promises complete relief. It's simply not realistic and you would have to enjoy every benefit from every med and experience no side effects from any, to maintain that kind of relief. If you go in expecting complete relief, it seems your setting yourself up for disapointment and setting yourself up to be a problem patient by simply asking the doc to live up to his word and provide the complete relief he promised. When he can't do what he promised, you become the problem in the docs eyes.
Botom line is, if you want complete relief, don't complain about the catheter, sedation and sexual dysfunction. Everything has a price and the money part has been the easiest to deal with. If you set resaonable goals, you can obtain them but how are they going to give you enough side effect free dope to overcome all the problems you have. There is no such thing so you will be trading something for that kind of relief if the doc is crazy enough to shoot for complete relief. If he is, there isn't anything he can do about the side effects other than reduce the meds.
As far as cost, Unless he has come up with some creative way to obtain greater reimbursement, I have plain old medicare part a,b and D and a pump adjustment cost no more than a doc visit, 20-25 bucks is my part and the actual refills are 30-50 bucks depending on what meds your using. Their are quite a few things medicare just won't pay for and my doc just writes off, If he's figured out a way to get these things covered, of course your percentage will go up, But he can't make you pay for something medicare doesn't cover, He either excepts medicare reimbursement or he doesn't.
For example they don't cover the actual refill kit which is nothing more than a couple iodine swabs, a template and the needle, cath, syringe and a paper drape with a hole in it in a prepackaged tray. They end up writing that off completely and have never asked me to pay for something medicare doesn't cover. I've had nurses tell me that the bottle of meds cost 900 bucks, but it really doesn't matter what they say it costs, It what medicare allows them to charge that counts, and I aint paying 20% of 900 bucks for a refill. My total office visit and refill has never been more than 50 bucks.
My experience is docs don't know what this will cost you or what your copays are, there are too many insurance companies and variables involved for a doc to know each insurance companies out of pocket cost for each patient. All I can tell you Is I have never paid more than 50 bucks for a refill. Ther newer pumps hold more medication so that may go up a little with the synchromed 11's. They hold twice as much so the med expense may be twice as much but also last twice as long. I had the same fears about costs and nobody could really tell me up front what something cost unles you have the exact billing code. I have a refill next week and will get you those codes but I imagine there is some variation between meds. My pump only holds 18 ml where the newer pumps can hold up tp 40. But 40 ml means you only need refills half as often so if the price goes up, the frequency goes down.
Expect a lot of adjustment in the beginning, It took 16 adjustments and 6 months to get back to where I was and actually feel better and at best I still only get 50% relief. The real difference is how clear your head is. I was no longer in a fog from orals and living like this the rest of my life was no longer something orals made tolerable. With my condition, I was going to hurt regardless of what I did, whether I sat on the couch with a heating pad or I spent 30 minutes exercising. I actually started at 8 mins a day and over 9 months worked up to 30 minutes a shot and then 30 minutes twice a day and then returned to work part time where I was distracted enough at work I could go 6 or 7 hours without much thought about the pain.. Of course once I get home and sit down, every muscle tightens and the spasms start, but it's better to feel productive than like a fixture in the house.
I wasn't able to tolerate the numbing agent due to urinary retention and that was my hope that they could just numb me. Unfortunately everything comes at a price or has side efects.
Pump meds are like any other meds, You can tolerate them to a point and then you reach a level of side effects that become too great a trade. If your not maried and don't care about sexual function, you can increase a pump even further, If it's acceptable in your home to be a zombie on the couch, they can increase and increase. If you don't mind having a cath the rest of your life, you can tolerate enough numbing agents to put cigs out on the bare skin of your thighs. I wouldn't recommend it, but sure it's possible, The do nerve blocks with marcaine all the time.
I decide how functional I want to be and don't allow meds to rob me of any more activity, motivation or function than I'm willing to live without. You know what 90 mgs of roxi does to you, pump meds can do the exact same thing if your only goal is reduced pain and not increased function. If you want increased function, there isn't a med that is going to rebuild what years of living sedentary have done to your body. You have to do the work so that you can stand without your legs shaking and rebuild the strength you have lost. Hopefully the pump will provide enough relief for you to change your life and rebuild what you lost, but that's not part of the docs job or what the meds are meant to do. The meds are meant to relieve enough pain so that you can do what you need to do.
I've been there and spent almost a year in bed and that's when you start thinking about living the rest of your life like this. Only you can decide how much pain your willing to except in order to maintain certain functional abilities and levels of cognitive awareness. Good luck, Dave
PS, My in patient trial was a bust, I had a spinal fluid leak from day 1 and couldn't say a good thing about that experience. 6 months later I had a bolus injection that allowed me to make the decision. It may not be what you want, but it was enough for me to make the right decision.
Re: Shoreline or other Pain Pump Patients on Mediicare!
Thanks SO much for answering my lengthy questions. I realize that if I am lucky I will only get a 40-50% decrease in pain. That would be TOTALY acceptable to me at this point! I'm glad to hear that the injection was sufficent enough to give you an idea whether to give the pump a try.
I think I need to start off slow and build up my daily function and exercsie gradually like you did if the Trial and Pump help reduce the pain so I can do that!
Like you said, It's up to me to get up and do the work to get myself back in shape. When I asked about relieving all of my back pain ...I meant, would one pump circulate enough med through all of my spinal canal so that the meds would help reduce the pain in my neck, thoracic and lumbar areas where the pain is just as bad in one part of my spine as it is in the other parts. I'm not expecting it to reduce all of the pain...just cover the multiple areas that hurt as much as the other areas. I guess that's what the trial is for.
I know the costs of the trail at an ACS and the Hosptial deduction plus the cost of the pump, etc will be $2 - 4,000. At least I hope that it won't be much more. But I spend that each year now with the Medicare Part D gap. So, I'm expecting that initial expense.
What scared me was reading the posts in that other group where people were saying they had only Medicare and when they got there bill, after Medicare paid, they were ending up with a bill of $700-800 as their copay amount. I can handle the costs that you say you are paying. That I could afford and it would be worth it.
I guess I need to just try and just work with one med like dilaudid. I would love to get 40-50% decrease in pain and increase my fuctionality. Especially if it will reduce my side effects.
1) If you could send me those codes from Medicare then I could call the Medcare company here in my state and ask them what my copay(s) will be. That would help alot!
2)Also, have you found that the tolerance issues with a pump are slower to develope than with the orals or transdermals. I would think so as it would not have a first-pass through the liver and kidneys. But I would like to hear what you have experienced!
Thanks again Dave, as I'm more concerned about my copays being in the $700 range for sometning that I would build tolerance to like these meds I'm on now. His office has told me that he accepts Medicare assignment and so did he. I'd just be happy to hear that I could get "some" better pain relief and funtionality and not have to keep increasing the dosage once titrated. I'm not expecting full relief. I just want some more quaility of life at a cost I can afford!
I'm happy to hear that you are doing better and are able to work and get out of the house. It gets depressing being so isolated and feeling useless! You deserved a break!
Last edited by moderator2; 10-12-2007 at 08:20 PM.
Re: Shoreline or other Pain Pump Patients on Mediicare!
Hey Tony, Even my hopsital vist wan't that expensive. I had mine done at Maryveiw which is part of the catholic church and they were more than wiling to work with me financially. You can't avoid the copayy, but my surgeon wrote of my balance and, there was no charge for fuarable med goods and the only other bill was a couple hundred for the enesthesiologist. The trial was actually more expensive beause I was in longer at a different hopital. My doc is set up to do refills in his office, half is a steril procedure arena and the other half offices. I guess if they had to send you to the hospital and do it like an out patient procedure, the cost could be higher. There is a better way obviously. I would make that part of my decsion too. Althopugh it's done in the surgical suuite for sterile purposes, it's in their free standing clinic. But they only do PM procedures. As far as part D, I'm with you man, it sucks when you hit the donut, But your meds are covered and ordered by muy docs cliic, I guess they are part of that 35 bucks, but my name brand copays are that much.
As far as tolerance, I've necver had an increase past the point of titration. I started with morphine and my doc became concerned about granulomas so he swithed me to dilaudid after 18 months, We titrated dilauid which tok about 2 months and i haven't needed an adjustment since. I have a great trick for calculting increases during titration my doc used mu sugestion every time. I'll share for another time.
I worked today and the pain is out of control, but an increae would mean an increase every night and If I want to stay functional, I have to put up with the bad nights. I did make decent $$$ for 4 hours work and just the interaction outside of what you saw on TV and talking about something other than pain makes it worth while. If you goal is to get enough relief to do everything you can to make the best out of your new situation.
Medtronics recomends the psych eval, some do it and some don't I guess. They were great as far as answering questions, being their at surgery and the first couple adjustments. The company is very patient friendly and will answer anyt question you have. Meedicare psych beni sucked and I think they only paid half of the MMPI which left me a couple hundred out of pocket, but if it was required I was willing to try. I was sick of the pain and the orals and the way I felt on them.
I never could have imagined being where I am now even with large doses of orals, My legs shook, I had sweat dripping from my nose simply from standing in line at the grocery The pump gacveme enough relief and more important aloowed me sto see clearly where I was headed if I didn't do everything I could. Staying buisy is my best medecine aside from the pump which I really don't notice. A pain free day is a nice wish, but a productive day makes a painful day a lot easier to deal with. I wish you the best and if they don't get the bolus right the first time, I understand it's not uncommon to try another dose or another med a little down the road.
The relief i got was signicicant and my head was amazingly clear because I hadn't taken any methi n about 18 hours prior to the injection. meth just made me feel so blaw but prior to part D, without insurance it was the only option. Part of the reaon I wanted a pump was to benefit from meds I couldn't aford at the pharamcy. Dilaudid is just a much cleaner med than methadone.
Take care, Dave
The Following User Says Thank You to Shoreline For This Useful Post: rossamwb (03-18-2012)
Re: Shoreline or other Pain Pump Patients on Mediicare!
That's great that you were able to get some help with the costs at the Catholic hospital. It all adds up fast when we are on a fixed income. Also, if I remember correctly you had the pump put in about 3 years ago, which would have saved you a few hundred in deductibles. Again, it alll helps. How right you are about that dognut hole...it's a killer on the wallet, isn't it! They keep raising it every year as well as the part D premiums. It's going to get unaffodable real fast!
I know I'll have the Trial injection at an outpatient facility. They already set up the date for 2PM on Nov. 2nd. I tried to set it up as late in the day as I could so I could see how it worked when my pain gets worse. Mornings are not too bad on me after I get up and move around some and get a BT pill in me. But, I am extremely fatigued in the mornings and usually end up in the recliner till about noon when the fog and fatigue start to lift. I'm just out of shape and the 200 mcgs of fentanyl I'm on sure has a lot to do with that. Once I get up and start to do some house chores or errands the pain sets in pretty hard after an hour or two and I usually can't tolerate much more physical activity..even just standing. The pain gets so bad I can't think straight so I have to ly down again. That's not much of a life. That's why I'd love to have around 50% decrease in pain. I think that would be enough to let me continue doing things for longer periods of time. Like you said, when you keep busy it distracts your mind from the pain.
That's great to hear that you don't get a tolerance effect once titrated. I'd really like to get titrated on a med that works for me and stay at that level. That would be another plus for having the pump!
You must have the Synchromed I. Is it programable so you can get a bolus in the evening? That extra bolus in the evening prevents you from working? That's what I don't know...which pumps can give you an extra bolus at a certain time of day. Like you, at the end of the day my pain is through the roof. But I don't want ALL the dosages set at a high amount or I won't be as functional as I want to be. It would be great if it could be programmed for one or two extra doses in the evening only. Or a bigger dosage just once or twice in the evening. I know he said that they don't use the synchromed II with the PMT(the remote control to give yourself and extra bolus) but programed by the doc like the PCA pumps in the hospital. But he may use the synchromed II pump. That's the only different between the two pumps is the resevior size or can it be prorammed differently?
I guess I'll have to take what Medicare will allow and work around those things! But, it would be nice to know the differences. It would be nice to get just one extra bolus in the evening when the pain is blinding!
Sorry to hear that you hurt so bad at the end of the work day. Bt it is better than being isolated at home!
Medtonics recommends that the doc work with a local Medtronics rep because they know what each Medicare company in different states require for the procedures to be approved....ie., Pshyc eval, etc. Should I call Medtronics or do they have a rep see you in the office BEFORE the pump is put in?
How about the Trial..don't they need documentation for those as well. Or is that not as big a deal? I guess you already had your pshyc eval ect done for that in-hospital trial where you had a spinal leak. Boy aren't those horrible headaches. I had one when I had a Myleogram w/ dye back in 1990 for my cervical surgery. Back then they did not do blood patches or at least I wasn't offered one. I was out of it for close to two weeks.
When you send me the procedure codes next week I'd like to hear your titration method that your doc uses and works so well! I think I may have a tough time comming off of the fentanyl!
Thanks again, Dave! I'll talk with more when you get those codes next week. I'll feel better knowing I won't go bankrupt!
Wishing you continued success with the pump and work!
Re: Shoreline or other Pain Pump Patients on Mediicare!
Hey Tony, I made a mistake and my refill isn't untill the 18th.
I do have the synchromed 1, Now my doc is using the synch 11 but he isn't using the portable bolus device yet. I guess it could create refill date problems if someone was using it too often or create alot of waste if they calculated the date with someone using it and they didn't. They schedule my next refill the day I get it filled based on the printout. The pump calculates the alarm date "when it drops to 2ml" and I fill mine the week before. I would gladly give up all BT pills for the bolus device. Additional relief without the fog of pills, Heck yeah.
Re: Shoreline or other Pain Pump Patients on Mediicare!
That's O.K., thanks for letting me know. Maybe you can send them when you have it refilled next week.
In the mean time, I set up another appointment with the Nurse that does the refills at this Pain doc's office that would be doing the Trial and Implant. They ARE using the Synchomed II but will not allow the patients to use the PTM for extra boluses. I asked why and she said...what you thought it might be...would affect refill dates, abuse, and the big one, that Medicare (or other insurances) would probably not pay for it per their Medtronics Rep...it's about $2,000 or more.
Hey, have you ever heard of this? I told her that I do NOT have a Secondary Insurance and she was real concerned about the 20% of the ASC fees and the copays on the Unit itseft. She said that the unit is like $40,000. Then, when I asked her about the high costs of the refills that I heard about and were being charged and paid by Medicare. She said, that they have a Compunding Pharmarcy that makes up the meds for the pumps and the Pharmacy bills the Insurance (In my case, my Medicare Part D! I even repeated it and she said, "it's much less expensive this way". She gave me the name of the Pharmacy and told me to call the Pharmacy. She also said, "even if the insuracnce did not cover it for some odd reason...the costs of the meds are about $90 total on average". She said, "that they had some patients that they took over that were being billed $2,500 for their meds"! So she warned me that I may get a small co-pay from that pharmacy for the med refills. I NEVER heard of this before. According to all the formularies I have looked at, "Specialty Drugs" that are componded or mixed require Pre-Auths and have higher co-pays or are not covered. I have to look that up in my formulary book and call the Pharmacy and talk to them. I'll let you know what I find out as I just got home from that appointment.
She also said I should check into a Secondary Insurance to be sure I don't end up with a lot of start up expenses. I live in a State(NV) that has no law that people under 65 have to be offered Medicare Supplement Policies. So, of course there aren't any!
She is having her staff try and call Medicare for me with the codes and see if they can find out what my costs might be. Also they are going to call Medtronics. Medtronics would not even talk to me, they told me to talk to my Doctor.
I would have given anything for that PTM, as well. She expained that they can give different dosages at different times of day so that's another reason they don't use the PTM. Still would be more convienient for us patients though! I'm with you about not having to have BT meds!
I'll keep you posted and if you ever heard of this let me know. I think she has me more scared now about the costs. I'll have to wait till I get more answers.
It sure sounds like the way to go if I can afford it! I have to get some answers before 11/02 as that's when I have the Trial. Then, they can get the permanent one schuleded within 2-3 weeks after that if it's sucssessful!
Hey Tony, I got a copy of the codes and I pulled out an eob from traiblazer who manages my part B medicare.
The codes are
62368: Pump analysis with Reprogramming
A4220: Refill kit for intrathecal pump
95991: Refill/maint of IT pump admin by Dr.
95991:Hydromorphone 25mg per ml/ 18ml
Here is how it breaks down on my EOB
Line 1 amount charged:
Line 2 Medicare aproved amount
Line 3 Medicare paid providor
Line 4 You may be billed
623368 analyze spine infusion pump__ 290.00__50.60__43.46__10.86
A4220 Infusion refill kit ___________100.00 __ 0.00__ 0.00 __ 0.00
95991 spin/brain pump refill & maint__265.00__83.93__67.14__16.79
J7799-KD non inhalation drug for DME_177.00__59.00__47.20__11.80
The non ihalation drug must be the actual vial of dilaudid. 18ml at 25mgs per ml is ordered by the clinic and sent directly to the clinic, it doesn't go through my part Dplan. My portion is $39.45 every 60 days. They may ask for $832 and someone without insurance may have to pay that much if they don't have part B or a decent insurance plan, But if your doc excepts medicare, he excepts what they pay and writes off the diference. BTW Trailblazer isn't a adjunct policy to medecare, they are just the regional administrators.
Some people pick up aditional policies "Medigap" to cover what medicare doesn't pay. I also pay for prescription insurance. I pay about 70 bucks a month for part D with Humana, But I only have 15 dollar copays for 90 day suplies of any generic medication. My plan covers all generics throughout the gap, It's just name brand meds that aren't covered during the doughnut hole with the plan I chose, But it was their most expensive plan. They had a 12 dolar a month plan that didn't cover generics during the gap.
Hope this helps.
Take care, Dave
Last edited by Shoreline; 10-18-2007 at 11:30 AM.
Reason: Trying to make collums line up.
Thanks for looking that up and posting it for me so fast! I can now have something to go by. I spent the whole day on the internet and phone and haven't really accomplished much as far as finding anything else out...except: IT Hurts To Sit at The Computer Most Of The Day!
I really do appreciate you doing this for me. I just can't go on much longer with this pain knowing that there is most likely something out there that can make my life better...the Pain Pump.
My wife works in a Real Estate office and they have fired over half the staff. She thinks her job may be next. So I just need to be fairly sure that the Medicare here in NV will be discounted like yours has been. I did find out that both the Trial (Injection) and the Permenant Implant will be done at the Out Patient Surgical Center.
I'll look these over first thing in the morning and if I have any more questions about it I'll asked. But, it looks pretty straight forward. It sure doesn't looked that bad to me. Once titrated it will more than pay for itself if the pump from Medtronics is also discounted. I'll ask them!
I have the Medicare Part D with AARP. It's also the most expensive Plan. Like your's, it covered my generics through the gap. Since they had the fentanyl generic (I found a mom and pop pharmacy that would order the Sandoz brand) so I only have been paying $6 for it. Same with the oxycodone. So I just had to pay for my Brand names like youl. I could not find were the Part D can be billed for a Part B service. I can't even find a PDP that has the meds for pumps listed on their formularies. I also could not find a Medigap Plan in NV for disabled and under 65.
I checked the AARP website and they say they have the same plan for 2008, but when I looked up my drugs, the generics, they showed a much higher copay. Plus their monthly Premiums doubled. I'll have to call them as well or check out the Humana site.
I also called that Pharmacy and left a message for the Pharmacist to give me a call. I'll try again tomorrow or drive down there. I'll let you know what I find out.
I'll keep you up to date on how things go. You have been SO helpful...as usual! Thanks again, Dave!
Hey Tony, The meds used in pumps are preservative free so they have to be compounded to whatever strength per ML your doc orders. They usualluy star at like 15 mgs per ml and move up and cap at about 30 to prevent granular custs.
I ran into the same thing when trying to find out what my costs wee going to be, I got a lot of misinformation from both my docs billing office and my insurance company. I almost want to say that in 2004 there was a max out of pocket of 2000.00 Betwqeen the hopital copay, the bill from the hopital and the bill from anesthesiology, I think I hit my max. But then Maryveiw negotiated my potion basedon my present income. and I ended up paying just the copay and the ansthesiologist, my surgeon wrote the rest off and I absolutely know I had the same concern about durable medical goods and my potential portion of that. It wasn't billed as durakle medical supply at 50% and I didn't pay 20% of 30K to have this put in. Doesn't medicare still have an anual max out of pocket?
Perhaps it's the size of the docs practice and the number of pump patients that determines how they bill the meds. It's not like they would bill your part D plan if they gave you a shot of demerol at your clinic or his office, and the hospitals don't bill your prescription plans for meds used during procedures but something similar is done with my wifes Botox through her HMO. She doesn't have medicare and instead of it being covered like a shot of demi or toradol , she does have to use her sript insurance for Botox and fax them the script which has to be authorized. The first couple she had, they supplied the Botox, but apearently they lost quite a bit of money doing this so they started having the patient use their script insurance for Botox which her part for that is a 100 bucks a vial.
I would think the best info would come from a patient of his that has medicare. IThey ask me to council or make myself available for his other prospective pump patients abou a year ago when I returned to work. I'm their pump poster boy I guess and I've talk to 1 or 2 people a month and some I strictly give details of procedures too and some want to know more about effectiveness and expectations and I'm honest enough with them that some don't go through with it. The prospect of starting from scratch, giving up your orals and posibbly taking 6 months to get back where you were scares some people off. It does take a tremendous amount of truist that your not going to go through all this only to have your doc leave you underr medicated if he believes nobody should need more than 5mgs of morphine or 2 mgs of dilaudid per day. Yes some Pump docs have the same ideas about max dosage as some PM docs have about orals.
I've met people that had to change pump docs 5 times to find one willing to set it high enough to actually be efective. Turning control over and trusting they will titrate you quickly enough to prevent great suffering takes alot of courage and faith. It's not for those looking for imediate satisfaction, pumps are started low and you work you way up. I started with morphine at 2 mgs a day, 6 months later I was dong well at 12 mgs a day. It was a rough 6 months, but this is the rest of my life, not a quick fix that just needs a quick adjustment. My doc looks at it as a lifetime comitment and so do I. They actually have monthly meeting and decide which candidates they will actually allow to do a trial. If the patient has compliance issues, problems showing up for apts or is constantly rescheduling to their conveinance. The docs aren't going to make their commitment unles the patient can comit to making it to every apt on time and not missing apts and then demanding to be fit in because their pump is going to run out.
Hopefuly your doc has some patients that you can talk to that actually know what the deal is as far as their refills and what the pay each month. My docs have a huge clinic with 5 docs, 5 NP, 2 PA's a shrink and surgical suites onsite to do procedures. They have hundreds of pump patients, so it wasn't hard finding another patient for me to talk to. The cool thing about being someone that gets to talk to perspective patients is my docs don't mind if the patient changes his mind because of something i told them. They would rather me weed out someone with outragous expectations or some great sense of entitlement that feels the doc owes them something and should work around what's conveinant for them rather than when it conveinant for the docs.
Hang in there, and remeber, although a pump may be right for you, this doc may not be the right one to manage your pump. Youhave to decide that too.
Take care, Dave
I spoke with that compounding pharmancy today and they took my Medicare Part D insurance card info and ran a test billing through my insurance company. It came back as denied and I would owe 100% of the bill. I didn't ask her how much they bill the insurance, but she did say that for cash patients for his office they give a discount. I asked her how much it would cost for Dialaudid at about 20 mg/ml for a 40 mg pump and she said approx $90 for hydromorphone and around $60 for morphine. So, it will be around $100-$150 if they add in some marcaine or some orther drug. That will add up fast if they titrate me once a week or more and have to empty the pump and refill each time.
You did make several excellent suggestions about all of this. The pump may be the correct option for me long term, but this doc and his office may not be right for Me, long term. As you know, with these granulomas showing up, that many PM docs that do pumps will not even take a patient who had the pump put in by another doc. I may have to postpone this trail and/or change to another PM doc till I get more solid answers to my questions...most are what you had mentioned. I was told that when they put in my pump they would reduce my fentanyl pathes and BT meds by 50% and probably start me with a half mg of dilaudid. When I asked them what will they do about the withdrawals and pain increase they did say that they may have to see me more often(ie:1-2 times/week) if necessary, at first. But, I did not ask them if they have an upper limit. I did not want to sound like a drug seeker on my first appointment. But, as you said...this is a life time commitment and the whole reason I want to do this is to improve my pain control and increase my functionality! All without going broke! They will not take new patients, unless you are getting the pump. So I can't change over to him and see how they are and get my questions anwered as we go while we get a feel for each other!
I think it is great that you get to talk to potential patients as their "Poster Boy"! I know you will tell them exactly what it is like and and what to expect to go through. Both money wise, time wise and what the true goal is that they should be reaching for. I think that you have a great handle on how that practice works. Not just because you had your pump put in by them, but also because you have been with them from the get-go. You did the orals as well as the pump and trial with them and you know how they operate their business.
I've had two appointments with this office and none of it had to do with my pain control or meds. Hell, they don't even really know my true medical condition. I brought all of my medical records from every PM doc I have seen as well as all the PT, Psych docs, rehab records, x-rays, MRIs, ect. They just read the last two MRI's from ny current PM doc that faxed over her records and a few MRI reports out of all the records I have. They aren't even going to send me out for a psych eval. I went online to the CMS's company that manages the Medicare here...it's called Nordian. I was able to check their site for implantable pumps and it has the same conditions that CMS does for approving the pump. Orals did not work and other physical and mental therapy that may be of value to reducing pain have been tried and failed. I have those records but sure don't want to start off being in pain and withdrawals and have to appeal the discision. Who knows...they may have done these enough to know how it works and what they need to do or not do. But, I don't know much about this practice other than I was given a good recommendation by a patient that had a pump put in 5 years ago and is now in another state. She had dual insurance, had the 4 day home trial and saw both the doc and the refill nurse (his wife) everytime she went in. They have changed the way that they practice. I just found out that this doc just recently had a triple bypass surgery. Who knows how long he will be around. Who will take over after that. Way too may questions unanswered for me to rush into this!
I also learned that the pain relief is mostly below where they place the catheter. Yet, my neck pain is worse than the rest of my back pain. It had a bilevel surgery that's 18 years old and one level had collapsed 3 months post-op and is a non-union. I now have every level of my neck and upper thoracic with DDD and spinal stenosis.
Oh, I did check the Nordian site(for CMS) and they only pay 50% of the pump as DME. I wasn't able to find the codes as yet. I think your suggestion is he best. I need to talk to someone from their practice with similar problems as mine and only has medicare. That way I can get a better feel for how he practices and what my costs will be. Also I could not find any info on Medicare having a Max copay per year. Since the ASC is were I'm going to have the trial and implant...I'm sure they will bill everything out. They alsready told me that they do not discount or "help out the patient". I guess I could try and talk with a Manager over there. But it all comes back to what you said and it hit home. I need more info before going with this doc. I may even see if I can get a consult with a few other offices here in town. Their is a group that is set up similar to your doc's practice and they do do the pumps.
Once again you have come up with words of wisedom! No wonder your doc's group choose you to talk to potential pump patients!
I'm going to spend some time with my wife and dogs this weekend and let some of this all sink in.
There isn't a whole lot more I can do over the weekend and I need a break. I'll talk with you some more when I get more info. I can't thank you enough for all you have done for me!
Hey Tony, Just one more thing, When they adjust the pump, if you you have the sycnhromed 2, it's programable. They can simply adjust the flow rate with the telemtry device, Those apts are the ones that only cost about 20 bucks a vist. Only the pumps that aren't programable and last a lifetime because they don't have batteries need to change the meds out if you need an increase. Those run at a continous rate and the only way to increase the dose is by refilling and adjusting the concentration.
A programable pump can simply be adjusted to deliver a higher dose which causes the refill date creep back a little each time. The first few refills is when they normally adjust the strength of the concentration. I imagine with a resevoir twice as large they probably don't go as high on concentration to avoid granulomas and if your still getting 100 days or more, your only paying for meds 3-4 times a year.
That's weird that My admin of medicare didn't charge my pump as a DME with a 50% copay but it's obviously called one when they bill the meds as non inhaltion drugs for DME. It's really not the same as a wheelchair or a set of crutches. I kinda doubt that they bill pacemakers as a DME and make medicare patients pay for those if they want to continue to live. Like I said, THere was a lot of discrepency with the information I got too.
100 bucks for a refill isn't that bad if it's every 3-4 months, What does he charge for a programming change "increase". There is something kinda strange about The doc that only manages his own, the wife that is his assistant and the one pharmacy you are sent too, Is he a partner or owner of that pharamcy too? It seeems like a good way to keep all the money in house.
Try to chill and I hope you find the right answer for you. It is a huge leap of faith, but the potential 15 or 30K for a pump/DME would scare most people away from the edge. That just doesn't seem right that my pump wouldn't be billed as DME and you would be. Do the new bankrupcy laws prevent people from dumping medical bills? Perhaps without that ability docs and hospitatls know they won't get stiffed for DME so the way it's billed has changed? I'm grasping to understand but remeber all the unanswered questions when I went into this myself.
Take care, Dave
It all does'nt sound right to me either. I know we are in diffrent states but that should not afftect how Medicare bills for things. There may a slight difference in the 80% copays but they have their rules and regulations that I don't think have changed over that amout of time.
Thanks for reminding me about the Synchro II being programable. Since it does hold 40 mgs it would last twice as long and they woundn't have to do the refilles as often. So, that $100-200 would Not be anything to be concerned about when it would last twice as long.
I do have Two more questions for you!
1) I know all PM doc are different, but do you think that reducing my 200 mcgs of fentanyl patches (q48h) by half when they put the pump in and only starting me at .5mg of dilaudid is a bit drastic?
2) Do you know if they can control my Neck pain with the Pain Pump?
They said they should be able to reduce most of my neck pain but I may have to stay on some orals. That most of the pain relief is from the catheter down. Maybe you can find out from your PM doc, or you may even know the answer to that.
At times I think I'm not going to get all the answers anyways so go for it. But then again, once I start with them I may be stuck there. I really think I should get some more questions answered. What is their upper limit on the pump, the estimated costs, and how much of my pain do they think they can reduce...especially my neck pain?
If you can answer those two questions I sure would appreciateate it. I'll try and find out the other answers this week. I know I won't get exact answers but at least some ball park ones!
Hey Tony, I was also concerned about my starting dose. I had been on 150 mgs of meth the last few months after spending years bouncing between 120 mgs of meth and 600 mgs of morphine. It just depended on insurance or whether I had insurance as to which med I used. Part of my decision for the pump was because I hated the way meth made me feel but I couldn't afford 700 a month for generic LA morphine. My doc did say he had a few patients that made the decision because of financial reasons too. It's cheaper and I swear the pump wasn't billed as a DME. I guess we need to find the code for the actual pump . I may have paper work from surgery, but again, different admins may have some variations, But it's more likely the way itís done, where itís done and the way it's billed that effect what they can ask for as far as compensation.
Anyway, back to starting dose. 200 mics is about equivalent to 600 mgs of morphine or 120 of methadone. I started at 2 mgs of morphine per day and my doc probably would have started me at .4 or .5 of dilaudid if it was the first med used.
I wanted off the meth so bad, I did a quick 3 day taper and was done with it. I think it was a huge factor in my general mood and perspective on life. Even pretty much going cold turkey on the meth, withdrawal was not a big issue, I had it to take if I wanted to ,but I wanted the meth feeling to go away, so the withdrawal couldnít have been that bad. I had some pretty intense pain, but that just lets you know your making the right decision.
There are some variations between fentanyl and dilaudid ,just like morphine doesn't have every property methadone has. You may experience some differential withdrawal regardless of the dose so donít think an increase will always stop withdrawal. .4 sounds a little low, but It sounds like the common starting place, wouldn't expect them to start at more than .6 When my doc switched me from morphine to dilaudid I think the largest daily increase I had was .4 mgs per day. Opiates delivered to the spine are 100 to 300 times more potent than orals and your have exponentially more opiate receptors in the spine. I was impressed at how little withdrawal I experienced, But it did take a lot of adjustments just to get back to where I was and then make progress.
As far as neck pain, They do work for neck pain too. You know all the things that effect how people respond to opiates but complete relief of any pain is a lot to promise of even attempt to achieve. As far as meds, There is some science to which med they select. They look at " Solubility and the molecular weight of each med and morphine is basically heavier than spinal fluid and tends to flow downwards, Dilaudid is closest to spinal fluid and tends to disperse very well around the cath site and the fentanyls are lighter or smaller in molecular structure or weight and travel throughout all spinal fluid better than all others.
Fent is usually the last resort even when going from a patch so that doesn't seem odd as far as opiate selection. Since you are higher than average dose and morphine is more prone to granulomas due to it's weight starting with dilaudid makes the most sense. You can always go to one of the Fents later, but you have to really know what your doing and have wide open lines of communication to manage IT fent. If you think .4 sounds small, convert to .2 micro grams a day and look at the hourly flow.0000000000001 LOL Not exactly but my hourly break down seems humorous compared to orals. Right now I'm at 6.3mgs per day of dialudid which is .242 mgs per hour for 12 hours and ..275 from 7pm to 7am.
I don't think your going to have a terrible time as far as withdrawal. I do think your going to need to titrate and I wouldn't be surprised if you needed of bolus of fentanyl at some point in the hospital after the pump implant to ease differential withdrawal, But the thought of living in unbearable pain is much scarier than sub Q surgery to implant a pump. They don't cut through muscle to put the pump in and thread the cath under the skin and make one small incision into your back to place the cath and anchor it. That surgery was a breeze compared to post fusion or post lami. Where you just need enough to keep from jumping out the window.
I know I'm very positive about the pump and the changes I have made in my life in the last 2 years. I don't want people to think I' figured out how to live pain free or am doing anything a doc hasn't suggested. I also want people to understand that just because I have a pump, I never suffer. Trust me,. , I still have days that I wonder what things will be like in 20 years and it's scary as hell. At best my pump relieves my pain 50%. I do push myself very hard because sitting at home being depressed simply got old. I actually feel guilty if I don't exercise or do something each and every day to improve my situation. The docs have done all they can and people reach that point. The rest is up to us, but this doesn't mean I got this pain thing licked or the pump has it licked. I worked 7 hours yesterday and I still can't sit in one place for more than 30 minutes, more like 15. I might have slept 2 hopurs last night and the thought of living like this is scary, but I know tomorrow is a new day and it will be better so I'll get back n the exercise machine and inflict some more pain on myself. It's that or sit on the couch and wait for the next heart attack.
Good luck, Dave
PS. Medtronics really couldn't answer billing questions for me, but they can give you a list of every doc in your area that is certiied to implant and manage their pumps. You might want to get another opinion. 100% relief is a hard sell that nobody would turn down. Medtronics will tell you unless your hospice and don't mind a cath, impedence, nodding off all the time,with a vent or monitoring 24/7 they don't shoot for 100% with CP. You will hit a wall of side efects at some point and then there isn't much you can do other than make some unpleaseant choices or back off which means less relief. 50% is manageble and will leave your head clear enough to realy evaluate where you want your life to go.
I'm glad to hear the answers you gave me! I know for saftey reasons they really do have to be careful about starting the intrathecal meds. So, I understand the .5 mgs dilaudid to start is for safety reasons. I just didn't know how much they set the pumps to deliver and when. Guess that's all part of the titration process. I also thought that the fentanyl from the patches attach to most all the receptors in the body and they also pass the brain barrier. So reducing my fentanyl by half seemed like it would cause more withdrawals than you explained. It sounds like it will be more of a pain thing that I will probably be looking at till I get titrated. At least the surgery isn't going to be like the 360 lumbar surgery I had done. They did say they would get me in as often as needed to keep me as comfortable as possible while staying safe. So, I'll prbably have at least once a week or maybe twice/week adjustments to start. Plus, I do have some extra Roxi's here at home if needed. I was more concerned about dealing with sever withdrawals along with increased pain...more than I could handle! I guess I will have a rough time at first but I'll have to look at the long term picture. I won't be the 1st person that will be going through this, so I should survive. I'd just like to know what to expect rather have surprises.
Thanks for explaining the delivery rates of the meds and what your actual amount/day of IT med is. It helps me understand what to expect. I know that 50% reduction in pain once I am titrated to where side effects start to detract from the benefits is the most that I can hope for. Like I said before...that would be acceptable to me.
I'm so glad you knew the specific gravities of the different meds. I'm happy to hear that dilaudid is lighter and closer to the CSF in molecular wieght. It should help with the neck pain, then. I guess that's what the Trial is all about too. You also explained why they are not going to the fentanyl right away since it is even lighter in wieght and would mix better. But, at least I'd have that as an option down the road. I really did not see the reasoning in switching to a pump if I was going to have to be on patches, as well, to cover my neck pain. I don't think they would do both anyways. So you helped alot in answering those two big concerns.
Oh, I did find out an "Estimate of the costs" today from that PM docs office. The Billing person got my medicare copays for both procedures for me. She said she called the ASC and gave them the codes and doctors charges and the type of pump. She really is relying on what they told her, so I'll have to go with that for now. Hope it is right!
Both procedures will be done in the ASC so I doudt I'll be getting any injection or immediate bolus of meds to help me out with the pain or withdrawals. But here is what I was told:
These are ALL Medicare copay amounts and could easily have been mis-quoted. But, it does sound more in line with what you have told me about costs. Especially since there is no Hospital copay of $1000 deductable and it being the Synchromed II (aprox. $40,000). At this price they can't be charging it out as DME. It's still a big nut to handle but I'll see if I can make some payments. These ASC's usually like to be paid up front. I was told that they do want the pump copay up front if possible...or as much of it as possible.
lus the Medication Fee as they fill the pump when Implanted = $200
Plus she said that the office ajustments during titration are covered in the Permenant Implant Fees for the first 90 days of titration. So I'll just have the office visits of about $20 and any meds if they change it. At this point it looks like around $4000 - $4,500 to get started. (I'll look for a Medigap Plan!!)
Well, that's what I have at this point. I just need to decide if I'm going to go ahead with the Trial or postpone it and get another opinion. I'd like to find out what this doc's maximum limit is on pain meds in the pump. But I don't know what is considered normal, high or low. I know they are concerned about the granulomas and what is causing them, so many of the PM doc have put a cieling on the pain meds in the pumps.
How can I find out what would be considered a resonable upper limit on meds so I don't get stuck with too little pain relief. I'm certainly not looking for 100% pain relief or wanting to be sedated or have side effects but I do need to get a reasonable amount of pain relief so I can get up and exercise or at least get my daily chores and errands done. I know I may end up wiith about the same amount of pain as I have now...but at least I'd be doing something.
I have Blood pressure problems and I have not been able to get it under control for the last year. So, like you, I need to be able to get out of the house, feel like I'm useful and get my heart and body in shape again. Otherwise I'll be looking at a heart attack or other problems. I've noticed that I have been getting some depression again too. So, I'm just looking for what you have been able to achieve. I may not be able to work...but, I at least need to feel better about myself and avoid other health problems.
Back to asking about the doc's upper limits.... I know it's different for different meds. Lets say I'll be on the dilaudid. What would be considered a resonable upper limit so I don't get stuck with an opioid phobic doc. Do I ask what his daily limit is or the anount per ml or the amount in the pump? Would 10mgs/day be a generous max(knowing everyone is different)???
Boy, I'm sure glad I have you helping me. This is a huge step and you have helped me feel better informed and less fearful. I think I'm just about out of questions at this point! You have been of so much help! I can't thank you enough for your help, Dave! So, I'll just say, "Thanks Again!"
As far as the future goes...I try and not even go there! It's just to scarry!