lindao1
04-08-2004, 02:49 PM
Hi All,
I promised I would let everyone know the outcome of my pm visit, after all the frustration of wondering where I stand and what my future holds.
First, I would like to say that my husband's presence at the appt. played a big part in the overall scenario. I hate to think that we all need to have an additional advocate to obtain proper pm care, but it certainly seemed to be the case with me, as much as I hate the thought. My husband's "testimonial" as to my having no quality of life seemed to make a big impact on the dr. Not only that but he impressed upon the dr. how my condition has affected my husband's life as well.
It's funny but when the dr. came into the room, he had a defensive attitude that was evident. But when he found out that I wasn't gonna curse him or scream at him, he let down that defensive guard. I just told him like it was and said I'm here for my pain to be managed and that hasn't been the case in the last year. We addressed the complications I had with the pump and he said they were very rare but do happen in a small percentage of the population. He told me it wasn't my fault which made me feel alot better. He still feels that the pump would be an excellent way to help alleviate alot of my pain.
I was able to explain that the oxy was the only thing that provided some relief without intolerable side effects and since going off of them for a while (trying other meds to no avail), they do seem to work better for now. I explained what my day-to-day existence was like and how the oxy worked and didn't work at certain times; thus, my request for an increase to cover those long periods of minimal relief. He did not appear to think at all that I was a drug seeker. It seemed he understood perfectly well what I was going thru. After all, I've been his patient for four years and he should know me well by now.
Ultimately what transpired was two options (options that I didn't have prior to this visit). #1. was to increase the oxy to three per day #2. was to try a different trial for the pump - a three-day hospital stay where they could increase the morphine at an accelerated pace while in a controlled environment and what would also give him and me an indication of whether the morphine will again present the big problem I had with urinary retention. I did ask if something else besides morphine could be put in the pump and he said yes, but we're talking about some heavy duty, very strong medicine. I don't wholeheartedly agree with that, though. If the morphine should again cause problems, I can't understand why using another med would be so critical seeing that my history is evidence of opiate tolerance. That disturbs me.
So he gave me a choice of increasing the oxy now or trying the new way of doing a pump trial. I asked him if he were me which way he would go and he said with the increased oxy. So that is what I agreed to. One of the biggest problems with another pump trial is whether insurance will pay for the implanted pump again. That will be a very difficult process of convincing them of the need for a second time and I have the belief that they may not approve it. If that turns out to be the case, then I will just have to stick with the oral meds, but feel this time, he will not have a problem with increases when needed since I would have exhausted all other options.
I do feel better about my relationship with this dr. At least I was allowed the opportunity to plead my case and he actually responded in kind. As far as the pump goes, when the time comes for that and if ins. approves it (long-shot), I will get a second opinion before proceeding just to satisfy my own mind.
I appreciate everyone's support on this. I don't think I could have convinced myself to be such a strong advocate of my own health without it. Fearing another brick wall was undermining my ability to act in my own best interest. This has taught me alot about standing up for what I know is right and true and I will continue to benefit from this experience. Thanks so much, Linda :D
I promised I would let everyone know the outcome of my pm visit, after all the frustration of wondering where I stand and what my future holds.
First, I would like to say that my husband's presence at the appt. played a big part in the overall scenario. I hate to think that we all need to have an additional advocate to obtain proper pm care, but it certainly seemed to be the case with me, as much as I hate the thought. My husband's "testimonial" as to my having no quality of life seemed to make a big impact on the dr. Not only that but he impressed upon the dr. how my condition has affected my husband's life as well.
It's funny but when the dr. came into the room, he had a defensive attitude that was evident. But when he found out that I wasn't gonna curse him or scream at him, he let down that defensive guard. I just told him like it was and said I'm here for my pain to be managed and that hasn't been the case in the last year. We addressed the complications I had with the pump and he said they were very rare but do happen in a small percentage of the population. He told me it wasn't my fault which made me feel alot better. He still feels that the pump would be an excellent way to help alleviate alot of my pain.
I was able to explain that the oxy was the only thing that provided some relief without intolerable side effects and since going off of them for a while (trying other meds to no avail), they do seem to work better for now. I explained what my day-to-day existence was like and how the oxy worked and didn't work at certain times; thus, my request for an increase to cover those long periods of minimal relief. He did not appear to think at all that I was a drug seeker. It seemed he understood perfectly well what I was going thru. After all, I've been his patient for four years and he should know me well by now.
Ultimately what transpired was two options (options that I didn't have prior to this visit). #1. was to increase the oxy to three per day #2. was to try a different trial for the pump - a three-day hospital stay where they could increase the morphine at an accelerated pace while in a controlled environment and what would also give him and me an indication of whether the morphine will again present the big problem I had with urinary retention. I did ask if something else besides morphine could be put in the pump and he said yes, but we're talking about some heavy duty, very strong medicine. I don't wholeheartedly agree with that, though. If the morphine should again cause problems, I can't understand why using another med would be so critical seeing that my history is evidence of opiate tolerance. That disturbs me.
So he gave me a choice of increasing the oxy now or trying the new way of doing a pump trial. I asked him if he were me which way he would go and he said with the increased oxy. So that is what I agreed to. One of the biggest problems with another pump trial is whether insurance will pay for the implanted pump again. That will be a very difficult process of convincing them of the need for a second time and I have the belief that they may not approve it. If that turns out to be the case, then I will just have to stick with the oral meds, but feel this time, he will not have a problem with increases when needed since I would have exhausted all other options.
I do feel better about my relationship with this dr. At least I was allowed the opportunity to plead my case and he actually responded in kind. As far as the pump goes, when the time comes for that and if ins. approves it (long-shot), I will get a second opinion before proceeding just to satisfy my own mind.
I appreciate everyone's support on this. I don't think I could have convinced myself to be such a strong advocate of my own health without it. Fearing another brick wall was undermining my ability to act in my own best interest. This has taught me alot about standing up for what I know is right and true and I will continue to benefit from this experience. Thanks so much, Linda :D
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carol632
04-08-2004, 03:12 PM
Linda, it is just wonderful that you had such a productive visit with your doctor! It does seem that another person being with you makes the doctors pay more attention...a "witness" to their behavior seems to instill compassion for some reason.
I agree with the decision to try the oxy 3x daily...that really seems to work well for a lot of people.
I have the pump and had the 3 day, in-hospital trial, and it worked out great for me. The pump has been in about 8 months now and has really changed my life for the better.
Thanks for letting us know about your positive experience...maybe someone else will get some benefit from taking along their husband or friend.
Carol
I agree with the decision to try the oxy 3x daily...that really seems to work well for a lot of people.
I have the pump and had the 3 day, in-hospital trial, and it worked out great for me. The pump has been in about 8 months now and has really changed my life for the better.
Thanks for letting us know about your positive experience...maybe someone else will get some benefit from taking along their husband or friend.
Carol
MikeZ
04-08-2004, 05:33 PM
Can I make the assumption that you're speaking of a morphine pump?
If so, can you provide a little more details? I'm about to have a fusion surgery, but am being told up front that I might require a spinal stimulator and/or a morphine pump if the fusion does not alleviate my pain. But, my neurosurgeon really talked the morphine pump down, stating that the technology is not where it should be, he doesn't recommend them and refuses to implant them and instead, refers you to another surgeon. He referenced frequent clogging that could lead to temporary paralysis, that you have to visit the doc on a monthly basis for refilling and why not just take oral meds instead.
Your insight would be appreciated.
If so, can you provide a little more details? I'm about to have a fusion surgery, but am being told up front that I might require a spinal stimulator and/or a morphine pump if the fusion does not alleviate my pain. But, my neurosurgeon really talked the morphine pump down, stating that the technology is not where it should be, he doesn't recommend them and refuses to implant them and instead, refers you to another surgeon. He referenced frequent clogging that could lead to temporary paralysis, that you have to visit the doc on a monthly basis for refilling and why not just take oral meds instead.
Your insight would be appreciated.
lindao1
04-08-2004, 07:20 PM
Hi Carol, Hi Mike :wave:
Carol thanks for the well-wishes! Yep, I started on the TID dosing of the oxy today and it's already made for a much better day. Yippee! I agree it's a shame that we need a witness or advocate to get our concerns across to the pm drs. I think it's absurd but seems to be the case for me. Argh! Drs. should learn to listen to their patients more, really listen, before things get so out of hand and we need to call in the calvary. Ha! But at least, my husband's presence and input seemed to make a difference which I'm so thankful for. Carol, do you have morphine in your pump? If so, did you ever have a problem with urinary retention from the morphine? Just curious cause it seemed to be a real problem for me.
Mike, hi there! Sorry, I guess I should have mentioned mine was about the morphine pump. I had the implant done last year around June, July August. But I developed some problems (hematomas, urinary retention, increased pain) post op, so a month later I had the pump removed. My problems started with the hematoma. The dr. said it's rare to develop one but can and does happen. Just my luck! Everything seemed to go down hill after that. The urinary retention was a hugh problem for me, but it came from the morphine and not the pump. It was proved to me that it was the morphine, when they turned the pump off and put me back on oral meds. The pump was still in me, but the morphine was not, so that's how I knew it was the morphine. The dr. did confirm that later. You can gather a whole bunch of info using the search mode here and looking up morphine or pain pump around June, July, August of last year. It should give you all the info you could ever want and then some! Just please remember that mine was not the usual experience. I am considering the option of the pump again if ins. will pay for it a second time. That should tell you that though me experience wasn't pleasant, nor was it the norm, it still has not dissuaded me from considering it again. I think it's an excellent alternative to oral meds and the tolerance that ultimately occurs over time. That's why I went on the pump in the first place - tolerance.
If you still have concerns or need answers, I'll be happy to help, but there is a wealth of info from last year (including a play-by-play of the surgery) posted that should help also. Good luck and let me know if you need further info. Linda :D
Carol thanks for the well-wishes! Yep, I started on the TID dosing of the oxy today and it's already made for a much better day. Yippee! I agree it's a shame that we need a witness or advocate to get our concerns across to the pm drs. I think it's absurd but seems to be the case for me. Argh! Drs. should learn to listen to their patients more, really listen, before things get so out of hand and we need to call in the calvary. Ha! But at least, my husband's presence and input seemed to make a difference which I'm so thankful for. Carol, do you have morphine in your pump? If so, did you ever have a problem with urinary retention from the morphine? Just curious cause it seemed to be a real problem for me.
Mike, hi there! Sorry, I guess I should have mentioned mine was about the morphine pump. I had the implant done last year around June, July August. But I developed some problems (hematomas, urinary retention, increased pain) post op, so a month later I had the pump removed. My problems started with the hematoma. The dr. said it's rare to develop one but can and does happen. Just my luck! Everything seemed to go down hill after that. The urinary retention was a hugh problem for me, but it came from the morphine and not the pump. It was proved to me that it was the morphine, when they turned the pump off and put me back on oral meds. The pump was still in me, but the morphine was not, so that's how I knew it was the morphine. The dr. did confirm that later. You can gather a whole bunch of info using the search mode here and looking up morphine or pain pump around June, July, August of last year. It should give you all the info you could ever want and then some! Just please remember that mine was not the usual experience. I am considering the option of the pump again if ins. will pay for it a second time. That should tell you that though me experience wasn't pleasant, nor was it the norm, it still has not dissuaded me from considering it again. I think it's an excellent alternative to oral meds and the tolerance that ultimately occurs over time. That's why I went on the pump in the first place - tolerance.
If you still have concerns or need answers, I'll be happy to help, but there is a wealth of info from last year (including a play-by-play of the surgery) posted that should help also. Good luck and let me know if you need further info. Linda :D
Kayley
04-08-2004, 08:21 PM
Hi Linda
I'm so glad you hear your appointment was a success. I was so anxious to hear about it, I started another post asking how it went, not even realizing you had already posted. You are right about having another person there making a difference. My husband usually takes me to most of my appointments because he's usually off on Mondays, but unfortunately, this Monday he has to work. I'm going to ask my sister to take me because it's hard for me to drive that far.
I am so happy for you and proud of you for standing up for yourself so well. Doesn't it feel good to have some of the pressure off about deciding about the pump? Now you can take your time to make your decision, which is the best thing to do. I hope you have a good night and continue to have more relief. You deserve it!
Kayley
I'm so glad you hear your appointment was a success. I was so anxious to hear about it, I started another post asking how it went, not even realizing you had already posted. You are right about having another person there making a difference. My husband usually takes me to most of my appointments because he's usually off on Mondays, but unfortunately, this Monday he has to work. I'm going to ask my sister to take me because it's hard for me to drive that far.
I am so happy for you and proud of you for standing up for yourself so well. Doesn't it feel good to have some of the pressure off about deciding about the pump? Now you can take your time to make your decision, which is the best thing to do. I hope you have a good night and continue to have more relief. You deserve it!
Kayley
lindao1
04-09-2004, 04:41 PM
Hi there Kayley, my pal! :angel:
Thanks for thinking of me and remembering that appt which was driving me looney! :jester:
I'm so thankful it's over and things went much better than I anticipated. Yep, make sure you have someone go with you if at all possible. I didn't realize how important that could be til this visit. What a difference - sad but true!
I am already feeling the benefits of the increased dose. I have to keep telling myself not to overdo it, though. Of course my pain is no where down to a 2-3 level nor do I expect it to be. But it's about a 4-5 which for me is great! I think the pump will be the only thing to actually decrease my levels more but right now I'm happy as a bug in a rug! :D
I too am rather proud of myself - hee!hee! (thanks for saying so!) My problem has always been that of being too trusting. I'm slowly learning that I use to take it to the extreme and need to focus much more on Linda. I always seem to exert all my energy for others, but I'm kinda getting better at the Linda thing now. LOL!
Kayley, you're such a great friend. I value our friendship and camaraderie so much! Hey, us CPers need to stick together thru thick and thin, don't we!
Kayley, have you set up your phone consult yet? Just wondering how long it will be before you can talk with the surgeon. I know that must be so hard on you, not knowing what's gonna happen. Been there and it ain't no fun! Just know that you aren't alone. I'm right here with ya, my friend. Anytime, any channel - ha! Just let me know whenever you need a shoulder to lean on, or a person to vent to, or EVEN if ya want me to fight your battles! Man, I'm on a roll now with standing up for people and just let me know, and I'll go at them, guns ablazin'! Hee! Hee! Ho! Ho! :bouncing:
Take care and let me know how things are going, OK? Much love, Linda :D
Thanks for thinking of me and remembering that appt which was driving me looney! :jester:
I'm so thankful it's over and things went much better than I anticipated. Yep, make sure you have someone go with you if at all possible. I didn't realize how important that could be til this visit. What a difference - sad but true!
I am already feeling the benefits of the increased dose. I have to keep telling myself not to overdo it, though. Of course my pain is no where down to a 2-3 level nor do I expect it to be. But it's about a 4-5 which for me is great! I think the pump will be the only thing to actually decrease my levels more but right now I'm happy as a bug in a rug! :D
I too am rather proud of myself - hee!hee! (thanks for saying so!) My problem has always been that of being too trusting. I'm slowly learning that I use to take it to the extreme and need to focus much more on Linda. I always seem to exert all my energy for others, but I'm kinda getting better at the Linda thing now. LOL!
Kayley, you're such a great friend. I value our friendship and camaraderie so much! Hey, us CPers need to stick together thru thick and thin, don't we!
Kayley, have you set up your phone consult yet? Just wondering how long it will be before you can talk with the surgeon. I know that must be so hard on you, not knowing what's gonna happen. Been there and it ain't no fun! Just know that you aren't alone. I'm right here with ya, my friend. Anytime, any channel - ha! Just let me know whenever you need a shoulder to lean on, or a person to vent to, or EVEN if ya want me to fight your battles! Man, I'm on a roll now with standing up for people and just let me know, and I'll go at them, guns ablazin'! Hee! Hee! Ho! Ho! :bouncing:
Take care and let me know how things are going, OK? Much love, Linda :D
sunshine12
04-10-2004, 01:26 AM
Well let me say it again "I am really proud of you" and I am definitly happy your hubby went with. It does in deed have an effect on most. I had to laugh when you said your husband was guarding the door because I did have to do that with my orthopedic man after telling me I needed hip surgery and I had to have an MRI for my back and proceeded to leave! :nono: I jumped to the door and said wait a minute, I have a few questions after sitting here two hours. Slug personalities I call it! I did complain to the office manager and told her why, I taped my next visit for my benifit as I forget things. He was more cordial but did not let me say a word, just talked over me.Grrrrr
Anyway, I am so happy for you that took some power into your hands. We certainly need Doctors but they also need us! Just a few get a little bored and beligerent with time. I am happy to hear you are feeling better as you have expressed and he is working with you now! And of course Kudos to your hubby for standing up for you!!!
The most important thing is you and that you covered your ground and can see the light, that is comforting for you and family. I do hope you continue to feel better so life gets better. Pain is just a *****! (sorry but it is)
Hugs to you and hope your insurance works with you, someone here may know or been there also. Sleep better woman, thinking of you and your white horse and sword! YES!! :D
Anyway, I am so happy for you that took some power into your hands. We certainly need Doctors but they also need us! Just a few get a little bored and beligerent with time. I am happy to hear you are feeling better as you have expressed and he is working with you now! And of course Kudos to your hubby for standing up for you!!!
The most important thing is you and that you covered your ground and can see the light, that is comforting for you and family. I do hope you continue to feel better so life gets better. Pain is just a *****! (sorry but it is)
Hugs to you and hope your insurance works with you, someone here may know or been there also. Sleep better woman, thinking of you and your white horse and sword! YES!! :D
Shoreline
04-10-2004, 10:55 AM
Hi Lionda, I'm glad things went well. I bet you will see a huge differnce with TID dosing of Oxy rather than BID.
His statement about morphine and not wanting to use heavy duty drugs doesn't really makes sense. Any pure opiate that's delvered intrathecally is a heavy duty drug. Just because dilaudid and fentanyl are stronger mg to mg it doesn't mean any drug is going to crerate a bigger problem than Morphine, they simply use less of the stronger med in the pump delivered daily.
Say you go to dilaudid instead of morphine, Dilaudid is about 7 times stronger than morphine and when delivered IT it's 300 tmes more potent than oral dilaudid, I don't know why a doc would care if you have morphine, dilaudid, fentanyl, sufentanyl or carfentanyl in your pump. You just adjust the dose acordingly.
If your doc has poor math skills and doesn't know how to use a calculator I could see the problem.LOL But otherwise, It really doesn't make a difference. Any med delivered IT is 300 times more potent than orally wich makes any drug pretty heavy duty in my book. As long is there is a preservative free version of the med it can be placed in the pump.
Actually the stronger meds means less frequent refills and may prolong the life of the pump batterie since it doesn't have to deliver as much fenatnyl or dilauadid as it does morphine. He just may not be familiar with titrating the other meds and trys to keep his pump patients on a med he is more comfortable titrating and maintaining.
Good luck and let us know how the increase to TID goes.
Take care, Dave "shore"
His statement about morphine and not wanting to use heavy duty drugs doesn't really makes sense. Any pure opiate that's delvered intrathecally is a heavy duty drug. Just because dilaudid and fentanyl are stronger mg to mg it doesn't mean any drug is going to crerate a bigger problem than Morphine, they simply use less of the stronger med in the pump delivered daily.
Say you go to dilaudid instead of morphine, Dilaudid is about 7 times stronger than morphine and when delivered IT it's 300 tmes more potent than oral dilaudid, I don't know why a doc would care if you have morphine, dilaudid, fentanyl, sufentanyl or carfentanyl in your pump. You just adjust the dose acordingly.
If your doc has poor math skills and doesn't know how to use a calculator I could see the problem.LOL But otherwise, It really doesn't make a difference. Any med delivered IT is 300 times more potent than orally wich makes any drug pretty heavy duty in my book. As long is there is a preservative free version of the med it can be placed in the pump.
Actually the stronger meds means less frequent refills and may prolong the life of the pump batterie since it doesn't have to deliver as much fenatnyl or dilauadid as it does morphine. He just may not be familiar with titrating the other meds and trys to keep his pump patients on a med he is more comfortable titrating and maintaining.
Good luck and let us know how the increase to TID goes.
Take care, Dave "shore"