Please help me decide whether I should have my right knee joint replaced before spinal surgery. Forgive this extraordinary length, but I don’t know how to present the pros and cons, without including my main considerations. Like the spinal surgery itself (and when to have it) this is a very complex cost:benefit issue. It’s so hard to think it through alone and time is short.
IN FAVOR OF KNEE SURGERY BEFORE SPINAL: Finances and Health (Physical and Mental)
1) FINANCES:
a) My relatively good insurance expires in Feb. when I turn 65 (though I’ll have to buy Medicare coverage for about six years for legal reasons )
b) A secondary (indemnity) plan through AARP expires then too . That pays out (legitimately!) large sums for surgical procedures, hospital time and helps greatly with rehab. at home and in a facility. It would help significantly with the knee surgery.
2) RECOVERY CARE:
Hopefully, one son could help me if I have Knee Joint replacement over the summer. If not, a rehab facility could care for me during the worst of it, followed by at home help for a few weeks after that - paid for by the AARP plan. Neither option would exist after this year.
3) HEALTH:
a) I’m concerned about how I’ll get through recovery from the long fusion (T4-pelvis, proposed by two of three surgeons consulted so far). Much has to do with functioning, as well as morale.
I’m not used to being dependent, nor can I just “let other people do for me, this once” as there really aren’ t others to tap. My S.I.L. has kindly offered to help with recovery from the spinal surgery if I can schedule it when she’s able to take time off work (seasonal in Florida)
b) As important as immediate help with recovery, long term self-care and functioning are too. I feel I’ll be significantly hampered practically and emotionally if both “top and bottom” are out of commission, long term. Reachers or not, I gather squatting is crucial to coping after a long fusion. But how can I squat if my right knee is almost bone on bone?
c) I know I’ll be demoralized by feeling physically limited after the long fusion. True, I can’t walk or stand without support now, but that’s because of pain from compression on my lumbar vertebrae. I’m still fairly fit from calesthenics and soon hope to resume aerobic work on my treadmill - walking now rather than running.
I’m so flexible, I’m hyper-flexible. This is a medical problem in the long run (Ehler-Danlos, a genetic condition, appears to be behind it. It caused my scoliosis and contributed to other joint problems, including my knees)
But I’m used to it, and depend on it in many ways. It will be extra challenging for me (with my former hyper-mobility ) to become suddenly and permanently stiff. I think if my knees can’t help compensate, I’ll be much more demoralized. Specifying “Me” - I realize everyone would l handle this change differently.
AGAINST HAVING KNEE SURGERY BEFORE (Health? Ability to Squat? Going against advice)
1)FUNCTION? This one is in both columns, I know. I'm not sure how well I WILL be able to squat after joint replacement. I’m trying now to get feedback from women in my demographic A local PT head, has had some lovely, helpful patients call me to share their experiences with knee joint replacement. More to come. So far , I’ve learned that there is variability and (the obvious) that knee joint surgery itself is no slam dunk! I’ve been told to expect to be out of commission from pain meds and rehab for a good month after knee surgery, when and if I have it. Squatting ability takes a while to regain, and flexion is incomplete. Less than I have now - but without joint pain. Anyone with personal knowledge of knee-joint replacement, please give feedback!
2) MEDICAL ADVICE My (excellent) local knee specialist doesn’t want to do joint replacement yet . He says, my knee would be less flexible than now (well, yeah! I have Ehlers Danlos!), and that all other things being equal. I should rely on pain control for a few more years. That means I’d have to go out of town for surgery. That would be less convenient and furthermore, I am left doubting myself. Should I ? (Even doubting my doubt! )
***************************************
I respect his medical opinion but all things are NOT equal. Considering the total person, ME – my spine, my finances (I’m very low on funds), and my morale (I tend towards depression) - I think my ability to manage the major life challenge of this spinal surgery, would be significantly undermined by leaving knee joint replacement for later.
I’m not even sure when I’d be well enough to undertake it after the spinal surgery, since I may take extra long to heal . Bone fusing may be slow or worse in my spine because of my age and because (just learned) I have spinal osteopenia.
I’m afraid that the knee surgery (coming second) could even raise the risk of infection in the spinal hardware, and that the rehab and knee operation itself would be harder if I were already fused.
Waiting for the knee surgery, might put me into a territory where I would be indefinitely unable to have it because of greatly increased costs and other coping difficulties. Ones that wouldn’t exist now . I can even see an argument for having both knees done simultaneously (now) . That, I won’t pursue, though maybe I should. The right knee is considerably worse because of injury. Hope this is a good call on my part. (I know if I had both done at once, it would be very painful and rehab would be much harder. However, I’ve heard of many others who do them together for similar practical reasons). Medically, it’s much more stressful, of course.
NOTE FROM MY MEDICAL HISTORY - AGAINST THE COMPARTMENTALIZATION OF MEDICAL TREATMENTS!
Rejecting medical opinion five years ago about surgery on my cervical stenosis, made an enormous difference in my options now. If I’d had my neck fused from C3-C6 (standard – but not only - protocol), what spinal surgeon now would have considered beginning the scoliosis fusion at T4, thus leaving a long mobile segment between neck and spine?
When seeing neurosurgeons about the stenosis, I begged them to examine and consider my total spine in their recommendations for my neck (When scheduling the appointment, I specified this request and was told they would). Once I got there, however, it was all “neck neck neck” since that was the presenting problem and their time was limited. They were so focused on my neck, I’m not even sure it registered with them that I had severe scoliosis (and other spinal problems).
But the rest of my spine, while not dangerous like the cervical stenosis, was far more of a functional problem and was already disabling me. It was clearly a strong possibility that it would require surgical attention in the future (NOW! ) – and needed to be considered in my treatment plan.
On my own, I researched an endoscopic approach (then much less frequently done for my problem), and found a world famous minimally invasive neurosurgeon - luckily , nearby. He did an endoscopic decompression instead of the standard fusion (as with scoliosis surgery, it would have required not just fusion, but also titanium hardware and bone transplant Most use cadaver bone). I did considerable research - including getting other opinions - to vet my surgeon before proceeding.
Back then, I preferred a less traumatic approach for other reasons, realizing I could always have the fusion later if it proved necessary. A total reconstruction wasn’t yet on my radar. I knew my total spine was a problem, though, and I wanted to arrive at a comprehensive spinal treatment plan, including major “what-ifs”.
And look what a difference it makes now!
I’m afraid that once more, physicians are insisting on standard recommendations in treating their area of expertise, but that the standard approach is contrary to my overall needs. My primary goal is to survive – long-term – for which I know everything must be considered in decision making: body, mind, care resources, bank account.
OTOH that puts me in the position of figuring everything out on my own and second-guessing experts. That makes me very uncomfortable. I recognize their expertise, but at the same time, I hate and distrust this age of specialization. I know it can lead to surgery and other treatments, which are not in the patients’ global best interests, considering all their major needs - over time. Finances oughtn’t to be ignored either!
Please help me make a decision. I'm so stressed, I know I may be missing important connections or facts. The time constraint doesn't help. Spinal surgery alone is hard enough to decide about - but should ANYTHING really be considered as a single issue?
Many thanks for any contributions!
IN FAVOR OF KNEE SURGERY BEFORE SPINAL: Finances and Health (Physical and Mental)
1) FINANCES:
a) My relatively good insurance expires in Feb. when I turn 65 (though I’ll have to buy Medicare coverage for about six years for legal reasons )
b) A secondary (indemnity) plan through AARP expires then too . That pays out (legitimately!) large sums for surgical procedures, hospital time and helps greatly with rehab. at home and in a facility. It would help significantly with the knee surgery.
2) RECOVERY CARE:
Hopefully, one son could help me if I have Knee Joint replacement over the summer. If not, a rehab facility could care for me during the worst of it, followed by at home help for a few weeks after that - paid for by the AARP plan. Neither option would exist after this year.
3) HEALTH:
a) I’m concerned about how I’ll get through recovery from the long fusion (T4-pelvis, proposed by two of three surgeons consulted so far). Much has to do with functioning, as well as morale.
I’m not used to being dependent, nor can I just “let other people do for me, this once” as there really aren’ t others to tap. My S.I.L. has kindly offered to help with recovery from the spinal surgery if I can schedule it when she’s able to take time off work (seasonal in Florida)
b) As important as immediate help with recovery, long term self-care and functioning are too. I feel I’ll be significantly hampered practically and emotionally if both “top and bottom” are out of commission, long term. Reachers or not, I gather squatting is crucial to coping after a long fusion. But how can I squat if my right knee is almost bone on bone?
c) I know I’ll be demoralized by feeling physically limited after the long fusion. True, I can’t walk or stand without support now, but that’s because of pain from compression on my lumbar vertebrae. I’m still fairly fit from calesthenics and soon hope to resume aerobic work on my treadmill - walking now rather than running.
I’m so flexible, I’m hyper-flexible. This is a medical problem in the long run (Ehler-Danlos, a genetic condition, appears to be behind it. It caused my scoliosis and contributed to other joint problems, including my knees)
But I’m used to it, and depend on it in many ways. It will be extra challenging for me (with my former hyper-mobility ) to become suddenly and permanently stiff. I think if my knees can’t help compensate, I’ll be much more demoralized. Specifying “Me” - I realize everyone would l handle this change differently.
AGAINST HAVING KNEE SURGERY BEFORE (Health? Ability to Squat? Going against advice)
1)FUNCTION? This one is in both columns, I know. I'm not sure how well I WILL be able to squat after joint replacement. I’m trying now to get feedback from women in my demographic A local PT head, has had some lovely, helpful patients call me to share their experiences with knee joint replacement. More to come. So far , I’ve learned that there is variability and (the obvious) that knee joint surgery itself is no slam dunk! I’ve been told to expect to be out of commission from pain meds and rehab for a good month after knee surgery, when and if I have it. Squatting ability takes a while to regain, and flexion is incomplete. Less than I have now - but without joint pain. Anyone with personal knowledge of knee-joint replacement, please give feedback!
2) MEDICAL ADVICE My (excellent) local knee specialist doesn’t want to do joint replacement yet . He says, my knee would be less flexible than now (well, yeah! I have Ehlers Danlos!), and that all other things being equal. I should rely on pain control for a few more years. That means I’d have to go out of town for surgery. That would be less convenient and furthermore, I am left doubting myself. Should I ? (Even doubting my doubt! )
***************************************
I respect his medical opinion but all things are NOT equal. Considering the total person, ME – my spine, my finances (I’m very low on funds), and my morale (I tend towards depression) - I think my ability to manage the major life challenge of this spinal surgery, would be significantly undermined by leaving knee joint replacement for later.
I’m not even sure when I’d be well enough to undertake it after the spinal surgery, since I may take extra long to heal . Bone fusing may be slow or worse in my spine because of my age and because (just learned) I have spinal osteopenia.
I’m afraid that the knee surgery (coming second) could even raise the risk of infection in the spinal hardware, and that the rehab and knee operation itself would be harder if I were already fused.
Waiting for the knee surgery, might put me into a territory where I would be indefinitely unable to have it because of greatly increased costs and other coping difficulties. Ones that wouldn’t exist now . I can even see an argument for having both knees done simultaneously (now) . That, I won’t pursue, though maybe I should. The right knee is considerably worse because of injury. Hope this is a good call on my part. (I know if I had both done at once, it would be very painful and rehab would be much harder. However, I’ve heard of many others who do them together for similar practical reasons). Medically, it’s much more stressful, of course.
NOTE FROM MY MEDICAL HISTORY - AGAINST THE COMPARTMENTALIZATION OF MEDICAL TREATMENTS!
Rejecting medical opinion five years ago about surgery on my cervical stenosis, made an enormous difference in my options now. If I’d had my neck fused from C3-C6 (standard – but not only - protocol), what spinal surgeon now would have considered beginning the scoliosis fusion at T4, thus leaving a long mobile segment between neck and spine?
When seeing neurosurgeons about the stenosis, I begged them to examine and consider my total spine in their recommendations for my neck (When scheduling the appointment, I specified this request and was told they would). Once I got there, however, it was all “neck neck neck” since that was the presenting problem and their time was limited. They were so focused on my neck, I’m not even sure it registered with them that I had severe scoliosis (and other spinal problems).
But the rest of my spine, while not dangerous like the cervical stenosis, was far more of a functional problem and was already disabling me. It was clearly a strong possibility that it would require surgical attention in the future (NOW! ) – and needed to be considered in my treatment plan.
On my own, I researched an endoscopic approach (then much less frequently done for my problem), and found a world famous minimally invasive neurosurgeon - luckily , nearby. He did an endoscopic decompression instead of the standard fusion (as with scoliosis surgery, it would have required not just fusion, but also titanium hardware and bone transplant Most use cadaver bone). I did considerable research - including getting other opinions - to vet my surgeon before proceeding.
Back then, I preferred a less traumatic approach for other reasons, realizing I could always have the fusion later if it proved necessary. A total reconstruction wasn’t yet on my radar. I knew my total spine was a problem, though, and I wanted to arrive at a comprehensive spinal treatment plan, including major “what-ifs”.
And look what a difference it makes now!
I’m afraid that once more, physicians are insisting on standard recommendations in treating their area of expertise, but that the standard approach is contrary to my overall needs. My primary goal is to survive – long-term – for which I know everything must be considered in decision making: body, mind, care resources, bank account.
OTOH that puts me in the position of figuring everything out on my own and second-guessing experts. That makes me very uncomfortable. I recognize their expertise, but at the same time, I hate and distrust this age of specialization. I know it can lead to surgery and other treatments, which are not in the patients’ global best interests, considering all their major needs - over time. Finances oughtn’t to be ignored either!
Please help me make a decision. I'm so stressed, I know I may be missing important connections or facts. The time constraint doesn't help. Spinal surgery alone is hard enough to decide about - but should ANYTHING really be considered as a single issue?
Many thanks for any contributions!
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