How can I be a better, more productive advocate for my mom?
January 16, 2017 6:24 AM Subscribe
My mother is 74 years old, and last June she unexpectedly needed open-heart, single-bypass surgery after a routine heart catheterization found a significant blockage. See inside for more details, but basically more than seven months later she is in continual debilitating pain and we are getting nowhere with doctors in terms of finding out why and doing anything to address or resolve it. I need advice on how to proceed, because I am at my wits end.
Following the surgery she spent more than four months bouncing back and forth between hospitals and skilled nursing facilities due to repeated infections. Her surgical wound was kept open on a wound vac for more than two months for the same reason. Finally, around early October, she started feeling much better and began to resume some semblance of a normal life. For a couple of weeks she seemed fantastic.
Then by the beginning of November she started having progressively worse chest pain. Not "heart attack" pain, but rather pain in her ribs themselves. Not in one particular spot, but literally everywhere in her rib cage from the front around to the back.
The surgical wound was healing nicely, but now there is one little pea-sized spot that has not closed and is still draining despite multiple cleanings and dressing changes by home health nurses. The nurses keep saying that she still has an infection.
She has been back in the hospital a half-dozen times in the past two months (once to a different hospital in search of a second opinion), and the tests repeatedly come back negative for any infections. Most recently, a swab of the remaining open wound taken last Wednesday has come back negative for any infection. Similarly, all tests and examinations of the surgery site show that things have healed nicely, her sternum has knitted back together, and there are no apparent problems there.
The heart surgeon says that from his perspective she is doing well and does not need to see him again. He says that, well, she may still be "sore" now and then, and she should take some hydrocodone if the pain persists. When pressed about it being constant, debilitating and intractable pain and not just soreness, he repeats that from his perspective she is recovering well and there is nothing else for him to do.
The plastic surgeon who closed the wound and managed the wound care just refers her to either the heart surgeon or the infectious disease doctor.
The infectious disease doctor is very nice, but understandably says that she does not have any infection, so there is really nothing else for him to do.
Her primary physician absolutely believes that there is still something else going on, and in any case she should not be at anywhere near this level of pain for this long, but as a generalist really all she can do is help coordinate with specialists.
My mom is definitely not drug-seeking, I am supremely confident of this for Reasons.
So now I am at the end of my rope. Her quality of life at this point is non-existent. We are trying to find a reputable pain management clinic, but we are in the state of Florida and the clinics here are notorious for being glorified pill mills, which is not what she needs or wants. And in any case, while finding ways to minimize the pain will certainly help somewhat with her quality of life it does not address whatever the underlying issue is.
I don't even know which way to turn at this point, and I would appreciate any and all advice. She is having some amount of suicidal ideation at this point, which is understandable and equally terrifying. She can't go on like this. Help?
Following the surgery she spent more than four months bouncing back and forth between hospitals and skilled nursing facilities due to repeated infections. Her surgical wound was kept open on a wound vac for more than two months for the same reason. Finally, around early October, she started feeling much better and began to resume some semblance of a normal life. For a couple of weeks she seemed fantastic.
Then by the beginning of November she started having progressively worse chest pain. Not "heart attack" pain, but rather pain in her ribs themselves. Not in one particular spot, but literally everywhere in her rib cage from the front around to the back.
The surgical wound was healing nicely, but now there is one little pea-sized spot that has not closed and is still draining despite multiple cleanings and dressing changes by home health nurses. The nurses keep saying that she still has an infection.
She has been back in the hospital a half-dozen times in the past two months (once to a different hospital in search of a second opinion), and the tests repeatedly come back negative for any infections. Most recently, a swab of the remaining open wound taken last Wednesday has come back negative for any infection. Similarly, all tests and examinations of the surgery site show that things have healed nicely, her sternum has knitted back together, and there are no apparent problems there.
The heart surgeon says that from his perspective she is doing well and does not need to see him again. He says that, well, she may still be "sore" now and then, and she should take some hydrocodone if the pain persists. When pressed about it being constant, debilitating and intractable pain and not just soreness, he repeats that from his perspective she is recovering well and there is nothing else for him to do.
The plastic surgeon who closed the wound and managed the wound care just refers her to either the heart surgeon or the infectious disease doctor.
The infectious disease doctor is very nice, but understandably says that she does not have any infection, so there is really nothing else for him to do.
Her primary physician absolutely believes that there is still something else going on, and in any case she should not be at anywhere near this level of pain for this long, but as a generalist really all she can do is help coordinate with specialists.
My mom is definitely not drug-seeking, I am supremely confident of this for Reasons.
So now I am at the end of my rope. Her quality of life at this point is non-existent. We are trying to find a reputable pain management clinic, but we are in the state of Florida and the clinics here are notorious for being glorified pill mills, which is not what she needs or wants. And in any case, while finding ways to minimize the pain will certainly help somewhat with her quality of life it does not address whatever the underlying issue is.
I don't even know which way to turn at this point, and I would appreciate any and all advice. She is having some amount of suicidal ideation at this point, which is understandable and equally terrifying. She can't go on like this. Help?
I also came to suggest a referral to a pain management doctor.
posted by Room 641-A at 7:15 AM on January 16, 2017 [1 favorite]
posted by Room 641-A at 7:15 AM on January 16, 2017 [1 favorite]
Sorry your mom is going through this. We had good luck taking my mom to the Mayo Clinic in Minnesota. They are great at figuring out the why of complex cases and giving treatment recommendations for your mom's regular doctor to follow.
You would have to pay the travel expenses but they are really good at getting everything done in a couple of days.
posted by SyraCarol at 7:25 AM on January 16, 2017
You would have to pay the travel expenses but they are really good at getting everything done in a couple of days.
posted by SyraCarol at 7:25 AM on January 16, 2017
Can her PCP recommend a different specialist who can give a second opinion on all of this? They shouldn't just be throwing pain meds at her if there's an underlying issue that's fixable. The fact that the wound isn't healing all the way seems like a pretty big indication that something is going on.
posted by Blue Jello Elf at 7:40 AM on January 16, 2017 [3 favorites]
posted by Blue Jello Elf at 7:40 AM on January 16, 2017 [3 favorites]
To expand on my answer a little, my mom was definitely being undermedicated for her back pain for years until I started advocating for her. However, echoing Blue Jello Elf, you can only give a 90 lb, 85 year old so many opiates. The pain management doctor was the one who thought to give her something from an entirely different class to address possible nerve pain and it made a noticeable difference and I wish I'd pushed for that sooner.
posted by Room 641-A at 8:04 AM on January 16, 2017
posted by Room 641-A at 8:04 AM on January 16, 2017
I would suggest talking to your PCP about a vascular surgeon/specialist. The wound that's not healing sounds like something my dad went through that turned out to be vascular disease (related to diabetes in his case, but there may be other causes, I'm sure).
(on preview, I feel like I have to acknowledge that this is massively speculative, but the non-healing wound that isn't necessarily infected is very much what was going on with Dad)
posted by randomkeystrike at 8:06 AM on January 16, 2017
(on preview, I feel like I have to acknowledge that this is massively speculative, but the non-healing wound that isn't necessarily infected is very much what was going on with Dad)
posted by randomkeystrike at 8:06 AM on January 16, 2017
I second SyraCarol. Get your mom to someplace like Mayo that has a reputation for the hard cases.
posted by Fukiyama at 12:15 PM on January 16, 2017
posted by Fukiyama at 12:15 PM on January 16, 2017
My husband had pretty significant depression after his bypass and it is my understanding that this is fairly common. If this is the case with your mom, it may be magnifying the pain she is already having. He started taking antidepressants and lyrica for nerve pain and it helped a lot. But it was truly a year after the surgery before he felt like himself and he didn't have the healing issues your mom has experienced. See if her GP will help with this. We were lucky that the cardiologist and the surgeon were two different doctors. Maybe a separate
cardiologist would be helpful.
posted by tamitang at 7:13 PM on January 16, 2017
cardiologist would be helpful.
posted by tamitang at 7:13 PM on January 16, 2017
As noted above, diabetes is definitely one of the top causes of non healing wounds.
I would recommend seeing a pain management clinic that has an academic affiliation, if there is one accessible to you. Academic pain management centers tend to be much less reliant on opiates and explore all other potential modalities of pain control.
However I do also wonder about tamitang's point of when she is due to see a cardiologist? Cardiologists usually have a good deal of experience with people who have chronic chest pain, even pain that turns out not to be cardiac in origin.
posted by treehorn+bunny at 11:15 PM on January 16, 2017
I would recommend seeing a pain management clinic that has an academic affiliation, if there is one accessible to you. Academic pain management centers tend to be much less reliant on opiates and explore all other potential modalities of pain control.
However I do also wonder about tamitang's point of when she is due to see a cardiologist? Cardiologists usually have a good deal of experience with people who have chronic chest pain, even pain that turns out not to be cardiac in origin.
posted by treehorn+bunny at 11:15 PM on January 16, 2017
Also, does your mom's PMD know about the suicidal ideation? While you continue to pursue the underlying cause for the chronic pain, please take any mention of suicidal ideation very seriously and address the mental health issues directly.
posted by treehorn+bunny at 11:18 PM on January 16, 2017
posted by treehorn+bunny at 11:18 PM on January 16, 2017
Has anyone done imaging of her chest? Maybe something got left in there that's causing her pain?
posted by purple_bird at 8:56 AM on January 17, 2017
posted by purple_bird at 8:56 AM on January 17, 2017
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Since your Mom's PC is on her side on this, that's a good sign that you can at least use them to coordinate efforts.
posted by xingcat at 7:03 AM on January 16, 2017 [2 favorites]