Building decision for knee surgery

You are way past the time when any of that would help you.
Those things only work when a tiny part of the meniscus is damaged - almost before you experience any symptoms.

Stop looking for alternative treatments and get on with finding a surgeon.
 
Celle - I am. Spending all my time on that right now. I am just circling back over the bases to make sure its time, but I know in my heart it is. Its the thought of not having my post op pain within manageable range that scares me the worst. If I die, I know where I am going, but the thought of being in severe pain for weeks or months without relief due to all the pre-op pain medication I've taken for years has me worried sick. I guess that is why they want people to cut down on narcotics, but I find if I try to avoid taking my narcotics as prescribe (I never take more) then the pain gets away from me, making it even harder to catch back up. Darned if you do, darned if you don't. I wish I could hear from someone else like me who was on a good amount of pain meds pre-op, what they did before surgery, and how their post op recovery went considering.

For some additional background, I had total left hip replacement in 1998 and was told I was virtual bone on bone in my right and would need 3 surgeries each side over a life time. I did a lot of research and got in a clinical trial for a ceramic/ceramic hip. It has done excellent, including no wear and is now 20 years old.

In 2014, I had a cervical laminectomy and fusion due to a compressed spinal cord that was compressed for over 2 years. I now have permanent spinal cord injury due to deformation of the back of my spinal cord, and foraminal stenosis still of my C5 nerve root in both arms. Also, I have arthritis of the spine and am almost totally fused from head to tail bone, except C1/C2 are still unfused, giving me my only motion in my neck. I've been on total disability for several years and did my best over over a year to return to full time work. But the neck and arm pain stopped me, and since then things have only gotten worse. Now both my knees hurt, my right much worse than my left, so I think my left knee is 1-2 years behind my right. No injections or MRIs or xrays on it yet that showed the degree of problems in my right. In 2015, I had a tear of the medial meniscus in my right knee, that they tried to sew back up and had come loose off the bone. I had good luck from 2015 to November 2018 with alternativing SynVisc and cortisone shots, but the most recent cortisone shot didn't help much.
 
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I sort of regret waiting this long, but when I saw the head of Emory orthopedics in 2016 who did my total hip replacement, he said to lose weight first and hopefully I would not need knee replacement, as knees are not "slam dunks" like hip replacements. I did that, using Saxenda injections. I have lost 55 pounds or so, down from a BMI of 36 to 26. But the pain has not come down, only grown worse. Also, one of my rheumatologists I saw told me he was wearing a brace due to the 10% that regret knee surgery, and suggested I do the same, so I tried that too. I even have a powered tilting wheel chair.
 
@Jeffntate, the link you provided to the surgery clinic that's associated with the Huntsville Hospital is an excellent place to start. In reviewing the surgeons there, here are the ones I think might be possible options for you:

Sudhakar G. Madanagopal, MD
R. Allan Maples, MD
Howard G. Miller, MD

It's time to stop researching and make some appointments with a couple of surgeons. I suggest you pick one of these three above to start. You want the one who does the most knee replacements each year (at least 150). You can ask about this when you call the clinic to make an appointment. When you go in, be honest with the doctor about your fears concerning pain management. You can talk about partial replacements, but I'd be very surprised if you're a candidate for one. It is highly likely that you have arthritis in more than one of the knee compartments. And, with your history of rheumatoid arthritis, even if you didn't, the likelihood of you getting it in the months after surgery may be greater. The surgeon can discuss this with you and explain things. One thing that's good is to have a surgeon who does both partial a full TKRs. That way, even if he thinks it might be possible to do a PKR, if he gets into your knee and sees that's not the best choice, he is able to instantly make the switch to a full knee replacement.

At the same time you're seeing one of these surgeons, also pick another location to go such as the one you say is 2 hours away. If you'll tell me the city you want to go to, I can help you find some surgeons to check out. Be sure and tag me so I'll see your response quickly. I do also have surgeons in Atlanta, Georgia that I can recommend if you would consider driving that far. Just let me know.

You need to talk with 2 or 3 doctors in different cities and pick the one that suits you and your situation best. While it's true that knee replacements are a bit more complex in terms of recovery than a hip replacement, many of our members have done them "long distance" and do just fine. You just have to plan a bit more about what happens immediately post op and for the follow-up appointments. Surgeons are good at working this out for you.

You need a knee replacement and you need it soon. A good surgeon will be able to deal with your use of pain medication and you'll be just fine after the surgery. You'll have a plan for pain management before the surgery that includes options in case some of the treatments don't work well for you. I agree that you should have had this knee replaced years ago, but that's really of no consequence now. Let's get you going forward toward a positive outcome.
 
Places I am considering include Vanderbilt University, Emory University, and UAB in Birmingham, Alabama, in addition to TOC/ Huntsville and SportsMed/ Huntsville (Cobb Alexander)
 
My 2cents worth. I had my knee done at a major Nashville hospital -St Thomas Midtown instead of the smaller local hospital in my town. However I didn't want to drive an hour to Nasville for physical therapy so I went to a local PT place 10 minutes from home. Most of the people whom I met in PT had their surgeries done at the smaller in town hospital. I'm a talker and I had several discussions plus watching how others progressed over the weeks. I feel like I made the right choice to pick a major hospital. I found the infection rate at the local hospital was twice what St Thomas was. I met two others in P T who got infections within 2 weeks of surgery. That soon makes me think it was likely to have been a surgical or hospital issue. Overall I just think I got a better surgeon and better care. My friend had her hip done at Vanderbilt and was equally happy.

As others have said, the right surgeon is the most important part of the equation. I was totally pleased with my surgeon, Joseph Kurtz. He has a nice Youtube video explaning the custom knee he does. But im sure there are plenty of other good surgeons. You just need to start interviews and see who feels right to you. The right surgeon takes the time to answer your questions, takes your concerns seriously and presents a plan that makes sense to you. You can look up statistics on surgeons, at least to a degree and don't forget to look at things like hospital infection rates.

I know you are scared. I know i was. It's a big deal and there is no going back. I think i waited too long worrying about the 10% who werent happy. That was 17 months ago and im pleased to report everything went very well and i have my life back. I won't sugarcoat it, even with drugs the pain was pretty bad for the first couple of weeks. But it passed quickly and I was off all prescription pain pills within a month. Have a heart to heart with your potential surgeon and ask about your risks as an individual. It may be better than you think.
 
Mr Jeffntate, you remind me very much of me pre-surgery. I was TERRIFIED and spun my wheels until I was surrounded in smoke. Fat lot of good it did.
Should I go to a big university hospital like Emory in Atlanta or Vanderbilt in Nashville to get a top notch surgeon, or go to a fellowship trainined local surgeon that is only 5 miles from my home?
You are 100% correct, IMO, to concentrate on finding the correct surgeon for the job. You need a knee specialist who does several hundred knee replacements every year as a minimum. After that, again IMO, personal recommendation is best.

You could try asking the nurses, they know who’s the best. I went to my local hospital where the surgery was scheduled and walked around the orthopaedic ward looking lost; it went something like:

‘Can I help you?’ a nurse asked/challenged me.

‘Oh yes, I’m here for my knee soon, I just wanted to see what it’s like,’ I replied ‘Dr Jekyll is doing my surgery.’ Rising tone at the end, to prompt a reply, and trying to turn the nurse into a friend (worked at once, nurses are nice).

‘You’ll like him,’ she replied, but adding quickly ‘of course Mr Hyde and the other doctors are very good, but Dr Jekyll is our best.’

That last is the response I got (luck works in life, a very fine surgeon living less than a mile from my house and working in a hospital 200 yards away) but you might get something like 'Yes Dr Jekyll is very good.' in which case you prompt 'But what about Mr Hyde, I've heard fine reports about him too.'

You get the idea. I found nurses and other staff only too keen to help; and they are like the NCOs in the army, the backbone that holds it all up.


Its not the surgery I fear or the anesthesia, but the post op pain.
Yes it's bad, and I had both of mine done together. But remember: arthritis pain is bad, is permanent and will only get worse; post op pain can be bad, is temporary and will only get better.

If both of your knees are beyond hope (even if one will struggle on) I suggest getting them both done together. All over and done with, one recovery.
 
I notice one of the TOC doctors lists several specialties including, knees, hips, shoulders, hands, etc. I would probably ask what percentage of each he does. I would want someone who does at least 60% knees, not a general guy and someone who does at least 100+ knees a year. It is not uncommon to have a surgeon who does both knees and hips but some doctors do a lot more of one than the other. You might also ask what prosthesis he uses and how long he's been using it. Some people think it doesn't matter what is used, but even if that is true, I'd hate to be the second surgery he's done with a new-to-him implant. I'd prefer something your surgeon has been using at least a couple of years, having lots of experience and a chance to see how well it is working for his patients.
 
Good points above. I loved that my OS called himself a "one-trick pony" when it came to knees. My kind of knee surgeon. I went with the implant he preferred because he had loads of experience installing that hardware.

Also, it's true nurses and physical therapists know who the good surgeons are. They see the good and the bad outcomes. Personal references are also a good indicator. I sought out my surgeon after five people gave him rave reviews: a friend at my gym, my next door neighbor, my dog sitter, one of my husband's co-workers' father, and a woman my husband commutes to work with on the subway (she's one of those people who knows every excellent mechanic, plumber, electrician, handyman, etc. in the whole county). With a high number of good references, a surgeon is worth a look!

One plus of the personal reference: You can ask about how the surgeon handles the lead up to the surgery and the recovery part. Is the surgeon easy to talk with? Easy to get hold of if you have a question? What kind of recovery protocol will you be looking at? It can put your mind more at ease to know some of these things.
 
@Jeffntate, the link you provided to the surgery clinic that's associated with the Huntsville Hospital is an excellent place to start. In reviewing the surgeons there, here are the ones I think might be possible options for you:

Sudhakar G. Madanagopal, MD
R. Allan Maples, MD
Howard G. Miller, MD

It's time to stop researching and make some appointments with a couple of surgeons. I suggest you pick one of these three above to start. You want the one who does the most knee replacements each year (at least 150). You can ask about this when you call the clinic to make an appointment. When you go in, be honest with the doctor about your fears concerning pain management. You can talk about partial replacements, but I'd be very surprised if you're a candidate for one. It is highly likely that you have arthritis in more than one of the knee compartments. And, with your history of rheumatoid arthritis, even if you didn't, the likelihood of you getting it in the months after surgery may be greater. The surgeon can discuss this with you and explain things. One thing that's good is to have a surgeon who does both partial a full TKRs. That way, even if he thinks it might be possible to do a PKR, if he gets into your knee and sees that's not the best choice, he is able to instantly make the switch to a full knee replacement.

At the same time you're seeing one of these surgeons, also pick another location to go such as the one you say is 2 hours away. If you'll tell me the city you want to go to, I can help you find some surgeons to check out. Be sure and tag me so I'll see your response quickly. I do also have surgeons in Atlanta, Georgia that I can recommend if you would consider driving that far. Just let me know.

You need to talk with 2 or 3 doctors in different cities and pick the one that suits you and your situation best. While it's true that knee replacements are a bit more complex in terms of recovery than a hip replacement, many of our members have done them "long distance" and do just fine. You just have to plan a bit more about what happens immediately post op and for the follow-up appointments. Surgeons are good at working this out for you.

You need a knee replacement and you need it soon. A good surgeon will be able to deal with your use of pain medication and you'll be just fine after the surgery. You'll have a plan for pain management before the surgery that includes options in case some of the treatments don't work well for you. I agree that you should have had this knee replaced years ago, but that's really of no consequence now. Let's get you going forward toward a positive outcome.
@Jeffntate - Jamie has given you some very good guidance here.
Make a move and do as she suggests.

Phone for an appointment with at least one of the surgeons she recommends.

You need to start this process by actually seeing surgeons now.
You can't decide by choosing one without seeing him/her.
 
By the way, avoid surgeons who specialise in sports medicine. That's a whole different thing from joint replacement.
Also, avoid general orthopaedic surgeons who do surgeries other than joint replacements. You need a surgeon whose specialty is joint replacement.
 
Places I am considering include Vanderbilt University, Emory University, and UAB in Birmingham, Alabama, in addition to TOC/ Huntsville and SportsMed/ Huntsville (Cobb Alexander)

If you decide to talk with a surgeon at SportsMed/Huntsville, I suggest:

Matthew Clayton, M.D.
He does complex revisions and appears to specialize in hips and knees. He looks like a good choice.

Cobb-Alexander is not as good a choice as he does not specialize. His bio states he does sports medicine, general orthopedic surgery and joint replacement. I doubt he does the number of knee replacements (at least 150 per year). You want a surgeon who does LOTS of successful knees.

If you decide to go to Vanderbuilt, Emory or UAB in Birmingham, let me know (please tag me) and I'll help you pick some doctors to consider. I don't currently have any from these locations on my list, so I would prefer doing the research for you on places that you actually plan to go to and aren't just considering. There are excellent surgeons at each of them and it's more a matter of your willingness and ability to travel to them.





Your previous surgeon at Emory sounds fine.
Dr. Miller was one of the names I gave you.
Dr. Parks would also be a good option.

It's time to narrow your list down to 2-3 surgeons to talk with and make those appointments. It's the only way you're going to be able to move forward. There is no perfect surgeon out there. But there is definitely one or more from all these choices you have now that will be the right one for you. The only way to determine who that is will be to start have a face-to-face conversation.
 
Vanderbilt and UAB is where I need the most help. You could check on the Emory doctor who did my hip replacement in 1998, James Roberson, of Emory, but I'm not sure who to see at Vanderbilt. Considering University of Alabama in Birmingham or the Birmingham area, as Alabama hasn't clamped down on pain meds yet.
 
I made an appointment today for 12/31 and am on the call for cancellation list at TOC with Howard Miller as Celle suggested above, but I intend to see other doctors to see who will work best with an opioid tolerant patient like me, so I don't scream or die in bed post op. Dr. Parks is who I was seeing but wasn't available until mid January. However when I told them I'm in dire pain, they allowed me to see Dr. Howard Miller.

Dr. Clayton looks good. I had already seen Cobb Alexander and he wrote in my chart that based on me currently being on opioids that "pain management will be challenging" which scared me. I have an appointment tomorrow with my GP who manages my pain and see what he can do inside the restrictions of my insurance. They are specifying a max limit of where I am already at with ER meds but allow a good bit higher IR limit than I take, so either I get a waiver to get a higher amount of ER meds (2x-4x) or I get a higher limit of IR meds (2-4X) which does not require a waiver for my insurance.

I'd really love to hear from some one in a case like mine who went into knee replacement already tolerant to opioids, or advice from others who understand and can help me.

When I had neurosurgery of my cervical spine, they gave me more than my current dose, and I did really well and didn't have any problems and recovered nicely. But in today's anti-opioid environment, I am thinking that may not be possible.

Another wrinkle in my case is trying to figure out if my wife's BCBS of Alabama plan is "credible coverage" or if I need a Medicare Part C or D plan.
 
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but I intend to see other doctors to see who will work best with an opioid tolerant patient like me, so I don't scream or die in bed post op.

he wrote in my chart that based on me being on opioids that "pain management will be challenging" which scared me.
I do wish you could get it out of your head that you are going to have lots of problems with pain control.

Yes, it may be challenging, but for sure you aren't the only opioid-tolerant patient these doctors will have helped.
They will have dealt with this before.

Do you currently have a pain management doctor on your case? Most people who need opioids long-term will have been referred to a pain management clinic.
 
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Well when an OS puts it in your chart that "pain management will be challenging" it sort of sticks with you. Plus a lot of others on FB are telling me its rough going. But I have the OS appointment in less than 4 weeks and I've essentially made the decision to go forward. I can't continue to live like this.

I was at a pain management clinic from 2012 until this past summer. I'm not under my GP's care.
 
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I can't continue to live like this.
There you have it.

I couldn't walk 50 yards without pain pre-surgery, couldn't stand up for more than a minute. Pain was bad for about a week, thereafter not as bad as pre-op.
 
Well when an OS puts it in your chart that "pain management will be challenging" it sort of sticks with you.
I understand that. But "challenging" isn't "impossible".

I was at a pain management clinic from 2012 until this past summer when thanks to the USG they told me they'd have to taper me down to the stupid 90 MME so my GP being a Hospice doctor was able to take me on where I was without a taper down.
Why do you feel you need to be on opioids permanently? From what I've read above, you were already on large doses before your cervical spine surgery.

By the way, avoid reading the negative stories on Facebook. People who have good experiences far outnumber those with bad experiences, but they don't come back to post and complain. They just get on with their new life.
 

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