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New to forum: kaiser *****, thinking of getting 2nd opinion...
Hello! we are new to the forum and hope to get any advice/guidance we can :) sorry for the long post!.
My boyfriend has been experiencing severe chronic pain for the last several years. He is 33 years old and has stenosis in his cervical spine, quickly advancing arthritis in his cervical spine and low back, and has additional pain from having multiple knee surgeries (one of which was botched by kaiser), a complete thyroidectomy (due to thyroid cancer 6 years ago), and a car accident in the past which rotated his sacrum. He has also been diagnosed with fibromyalgia.
He has had Kaiser throughout all of this and is currently prescribed MS Contin for "long acting" daily relief along with 60 pills per month of oxycodone for "short acting" relief. He has been on this regimen for about 3 years.
Prior to the regimen described above, he was taking tramodol but it wasn't managing his pain enough. His GP at Kaiser enrolled him in their pain management program, with grand praise about how great it would be... It was a nightmare. They asked him to come off of the tramodol and he agreed and did.. And they switched him to the morphine and oxycodone. But then they accused him of being drug seeking and treated him like he was an addict! Even though he had just come off of the drug they had prescribed to him previously! He never asked for oxycodone or morphine... they chose those meds. He completed the program, followed all of their advice and was pretty traumatized by the entire experience.
Fast forward three years: for the last year the morphine and oxycodone are becoming less effective, and his arthritis and stenosis is getting worse (his doc was shocked by his most recent X-rays). He used to have 1 - 2 breakthrough flare ups a month, now he has more like 5 - 10. He asked his doctor about a year ago if there were any other options (injections, surgery, etc) but his doc said that he isn't ready for that stuff yet. But his pain is much worse. So for the last 6 months, he has been taking extra meds (he gets about 90 extra oxycodone from a friend every month). He doesn't use them every day, only when he has bad breakthrough pain flare ups (around 5 - 10 times per month). His prescribed regimen, plus the extra 90 oxycodone, seems to be helping but he feels that if he had that plus went up slightly on his morphine, that he would have meaningful relief.
His GP at kaiser doesn't know about the extra 90 oxycodone (obviously) but did suggest at his appt last week that they will be increasing his morphine in about 6 months, since his body is adapting and its become less effective.
When my boyfriend asked about increasing his oxycodone (so he won't have to get them in a shady way) his doctor said that kaisers policy is to only increase dosage of the long acing medication (MS Contin) and not increase short acting meds.
We are at an impasse because my boyfriend can't explain to the doctor that he is taking extra meds and they are working for him, and kaiser won't increase them anyway! Plus they already seem to think he is drug seeking (despite horrendous X-rays showing the extent of his arthritis and stenosis). He has tried alternative therapies for pain relief (acupuncture, TENS unit, etc) but the oxycodone works the best for this breakthrough pain.
So we sat down today to try to figure out what to do. My boyfriend really doesn't want to have to rely on his friend for medications, he doesn't want to break the law, he wants to be able to be honest with his doctor, and most of all, he wants to not be in pain all the time (we realize that he will always be in some type of pain, but there are some days where he can't even get out of bed!). Kaiser has made this impossible.
We have talked a little about getting a consultation/2nd opinion from a doctor outside of kaiser, just to see what treatment/medication options they would recommend. However, my boyfriend is terrified that Kaiser will somehow find out and think he is "doctor shopping" and he is scared that he will be labeled an addict and everything will come crashing down and his situation will be worse than it is now.
Here are our questions:
If he goes to a pain specialist outside of kaiser for a consultation (he would bring his complete medical records and be 100% honest about the amount of meds he's taking) would the new doc automatically think he was drug seeking?
Would the new doc report him to kaiser?
Would the new doc be able to give recommendations/treatment plan in a consultation, prior to him coming on as an "official" patient?
Do pain specialists typically take into account what is already working for the patient and base their recommendations/treatment plans off of that? Alternative modalities just flat out dont work for my boyfriend... He doesn't want to do homeopathy, Chinese medicine, massage, or stuff like that. He also doesn't want to get switched to any stronger medications at this point that will make him into a zombie (he already deals with the plethora of negative side effects from the meds he takes now).
Another fear of my boyfriends is the possibility that if he decided to leave kaiser and go to the new doc, that once he did the new doc would change his recommendations and he would be worse off than he is now. Does this type of thing happen?
Does anyone have any tips for selecting a pain management specialist? Questions we should ask? Warning signs?
The goal/plan is if he was to find a good specialist outside of kaiser he would transition to a new insurance company and drop kaiser all together (so he wouldn't be getting any prescriptions through kaiser). Any insight, experiences, recommendations, or tips would be greatly appreciated.
Sorry for the long post! If anyone has any questions, let us know. Thanks in advance for your help :)
My boyfriend has been experiencing severe chronic pain for the last several years. He is 33 years old and has stenosis in his cervical spine, quickly advancing arthritis in his cervical spine and low back, and has additional pain from having multiple knee surgeries (one of which was botched by kaiser), a complete thyroidectomy (due to thyroid cancer 6 years ago), and a car accident in the past which rotated his sacrum. He has also been diagnosed with fibromyalgia.
He has had Kaiser throughout all of this and is currently prescribed MS Contin for "long acting" daily relief along with 60 pills per month of oxycodone for "short acting" relief. He has been on this regimen for about 3 years.
Prior to the regimen described above, he was taking tramodol but it wasn't managing his pain enough. His GP at Kaiser enrolled him in their pain management program, with grand praise about how great it would be... It was a nightmare. They asked him to come off of the tramodol and he agreed and did.. And they switched him to the morphine and oxycodone. But then they accused him of being drug seeking and treated him like he was an addict! Even though he had just come off of the drug they had prescribed to him previously! He never asked for oxycodone or morphine... they chose those meds. He completed the program, followed all of their advice and was pretty traumatized by the entire experience.
Fast forward three years: for the last year the morphine and oxycodone are becoming less effective, and his arthritis and stenosis is getting worse (his doc was shocked by his most recent X-rays). He used to have 1 - 2 breakthrough flare ups a month, now he has more like 5 - 10. He asked his doctor about a year ago if there were any other options (injections, surgery, etc) but his doc said that he isn't ready for that stuff yet. But his pain is much worse. So for the last 6 months, he has been taking extra meds (he gets about 90 extra oxycodone from a friend every month). He doesn't use them every day, only when he has bad breakthrough pain flare ups (around 5 - 10 times per month). His prescribed regimen, plus the extra 90 oxycodone, seems to be helping but he feels that if he had that plus went up slightly on his morphine, that he would have meaningful relief.
His GP at kaiser doesn't know about the extra 90 oxycodone (obviously) but did suggest at his appt last week that they will be increasing his morphine in about 6 months, since his body is adapting and its become less effective.
When my boyfriend asked about increasing his oxycodone (so he won't have to get them in a shady way) his doctor said that kaisers policy is to only increase dosage of the long acing medication (MS Contin) and not increase short acting meds.
We are at an impasse because my boyfriend can't explain to the doctor that he is taking extra meds and they are working for him, and kaiser won't increase them anyway! Plus they already seem to think he is drug seeking (despite horrendous X-rays showing the extent of his arthritis and stenosis). He has tried alternative therapies for pain relief (acupuncture, TENS unit, etc) but the oxycodone works the best for this breakthrough pain.
So we sat down today to try to figure out what to do. My boyfriend really doesn't want to have to rely on his friend for medications, he doesn't want to break the law, he wants to be able to be honest with his doctor, and most of all, he wants to not be in pain all the time (we realize that he will always be in some type of pain, but there are some days where he can't even get out of bed!). Kaiser has made this impossible.
We have talked a little about getting a consultation/2nd opinion from a doctor outside of kaiser, just to see what treatment/medication options they would recommend. However, my boyfriend is terrified that Kaiser will somehow find out and think he is "doctor shopping" and he is scared that he will be labeled an addict and everything will come crashing down and his situation will be worse than it is now.
Here are our questions:
If he goes to a pain specialist outside of kaiser for a consultation (he would bring his complete medical records and be 100% honest about the amount of meds he's taking) would the new doc automatically think he was drug seeking?
Would the new doc report him to kaiser?
Would the new doc be able to give recommendations/treatment plan in a consultation, prior to him coming on as an "official" patient?
Do pain specialists typically take into account what is already working for the patient and base their recommendations/treatment plans off of that? Alternative modalities just flat out dont work for my boyfriend... He doesn't want to do homeopathy, Chinese medicine, massage, or stuff like that. He also doesn't want to get switched to any stronger medications at this point that will make him into a zombie (he already deals with the plethora of negative side effects from the meds he takes now).
Another fear of my boyfriends is the possibility that if he decided to leave kaiser and go to the new doc, that once he did the new doc would change his recommendations and he would be worse off than he is now. Does this type of thing happen?
Does anyone have any tips for selecting a pain management specialist? Questions we should ask? Warning signs?
The goal/plan is if he was to find a good specialist outside of kaiser he would transition to a new insurance company and drop kaiser all together (so he wouldn't be getting any prescriptions through kaiser). Any insight, experiences, recommendations, or tips would be greatly appreciated.
Sorry for the long post! If anyone has any questions, let us know. Thanks in advance for your help :)
This part of your post really caught my eye:
“He asked his doctor about a year ago if there were any other options (injections, surgery, etc) but his doc said that he isn't ready for that stuff yet”
When is he going to be ready, when he can’t walk, that’s absurd. You need to get all his MRI and X-rays and get a consult with a Neuro or Orthopedic Surgeon or specialist of some kind and see if there’s anything that can be done. If you find that there isn’t, then you can get back on the PM track. That’s the approach I’d take, many of us search for years for answers, even after having multiple surgeries.
“He asked his doctor about a year ago if there were any other options (injections, surgery, etc) but his doc said that he isn't ready for that stuff yet”
When is he going to be ready, when he can’t walk, that’s absurd. You need to get all his MRI and X-rays and get a consult with a Neuro or Orthopedic Surgeon or specialist of some kind and see if there’s anything that can be done. If you find that there isn’t, then you can get back on the PM track. That’s the approach I’d take, many of us search for years for answers, even after having multiple surgeries.
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