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Revision TKR Knee replacement is not nice to me...

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Jo, please see post 125 in Coachie's thread. I did some research for her a few weeks ago....checked out more than 500 web sites starting close to her and working out.

The problem is that she lives in Maine and, at least from what I saw online, most of the orthopedic surgeons available were generalists or sports medicine doctors. Obviously this is not the type of surgeon for her situation. The closest I could find what sounded like a good revision team was in Boston at Massachusetts General Hospital.

I know this creates a problem for a person to have to travel that far, probably stay in a hotel, and to get proper referrals. But in my opinion, this is the best alternative.

Dewy's idea of getting one of the doctors at Mass General to review her file via email or by mailing things to him is an excellent one, though. Most good surgeons will do that for out-of-state patients. At least that wouldn't be too costly up front and then Coachie could decide if it was worth a face-to-face appointment.

Coachie....how about that idea??
 
I meant the people who have already treated her, Jamie. If Margo is okay with that, I want to check out their bios.
 
Ohhhh.....I misunderstood. Sorry!
 
Josephine said:
Coachie, send me the names and clinics of the people you have seen so I can research them. By pm if you want. There's something not quite right here .....
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All of my orthopedics are here in Maine. My original orthopedic is Dr. Richard Swett at Mayo Orthopedics in Dover-Foxcroft. I have seen Dr. Stephen Walsh (4/11/11) and Dr. Garrett Martin (11/4/10) at Downeast Orthopedics in Bangor, Dr. Jeffery Bush (4/25/11) at Central Maine Orthopedics in Auburn.

Both Dr. Martin and Dr. Walsh were referred by Dr. Swett. He had talked to both of them about my case before I went in.

Dr. Martin told me in November that my pain was "normal" and that everyone has knee cap pain after a tkr. When I told him that I hadn't had knee cap pain with my left tkr, he told me that I probably forgot about it.

Dr. Walsh told me that my pain was purely nerve related and that he could do nothing to help me. Both he and Dr. Swett had told me that a bone scan could not help as it was too early in my recovery to show anything. I have not seen him since my EMG came back showing NO nerve related damage.

Dr. Bush is the one who suggested a brace and when I put it on, the pain was so bad that I told the casting technician that I couldn't wear it. He then suggested a bone scan- of which I reported about the other day.

"In the right knee, there is a more extensive pattern of increased uptake in the proximal tibial metaphysis. Also, that there was mild increased bone turnover in the proximal right tibial metaphysis near the interface of the prosthesis and bone. The pattern is not consistent with loosening but does indicate some stress in the area, or at least some component of bone turnover."
 
:hairpulling: Rats! I can't find any of them - my browser keeps taking me to UK sites. Jamie, can you find them at all? @Jamie:
 
Jo, here are some links:

DOWNEAST ORTHOPEDICS has Dr. Martin (a generalist...shoulder, knee and hip) and Dr. Walsh (reconstructive surgery of knee and hip). There isn't a lot of information on the clinic website and I wasn't able to find anything more by Googling the doctors, except that they have no sanctions.

broken link removed: https://www.mayohospital.com/pract/pract_ortho.php shows Dr. Richard Swett (appears to be more of a general orthopedic surgeon). I couldn't find much of anything else on a Google search.

broken link removed: https://www.cmogroup.org/physicians_jbush.html shows Dr. Jeffery Bush (MIS hip replacement and knee revision surgery). Here is a link to a recent presentation on hip and knee replacements he gave...it has 4 parts on YouTube:

https://www.youtube.com/watch?v=naPSB_tjdC0&playnext=1&list=PL42DF9C69DB725D28


I hope this information helps you, Jo. Let me know if you want me to search for anything else.
 
Dr. Swett is a general orthopedic surgeon but does mainly knees and hips. He is an older doctor (I think he just turned 68 or 69?) and is semi-retired. He was my first orthopedic when I tore my ACL in high school in 1989 and I have stuck with him ever since. He really is a great guy as far as caring for his patients and trying to figure out answers, I am just a difficult case and no one can figure out why the pain is still there.

I have been taking Cymbalta for 10 days now and every day I wake up hoping that it will help with pain. It does help me kind of forget about the other pain and I am getting a bit more sleep, however, I really don't think anything is going to help with the knee cap pain I feel during the process of standing up. I have good days when I know that I am fighter and that I can do this, and then I have bad days when I look at this as a life- long battle that I am going to have to fight and that makes me sad. I hate that I can't walk without limping or that I don't want to stand up because I know what it is going to feel like and I really don't want to deal with that for the rest of my life.

Today is a feel sorry for myself day as I was reminded of my limitations when my Principal came up to my room (I am on the 2nd floor) and told me that he was seriously thinking of moving my classroom to the first floor. I told him to give me the day to think about it- haven't decided for sure what to do.
 
Well, the websites didn't tell me much.
Both Dr. Martin and Dr. Walsh were referred by Dr. Swett. He had talked to both of them about my case before I went in.
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Not too overwhelmed by this - don't call this kind of thing a 'second opinion'. They need to be totally independent in my book.
Dr. Martin told me in November that my pain was "normal" and that everyone has knee cap pain after a tkr. When I told him that I hadn't had knee cap pain with my left tkr, he told me that I probably forgot about it.
Click to expand...
That's rubbish!
Dr. Walsh told me that my pain was purely nerve related and that he could do nothing to help me.
Click to expand...
Need I say more?
Dr. Bush is the one who suggested a brace
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Nice hands off, unchallenging approach!

What a great collection of expertise you had there! (not!)
 
Coachie,

Wouldn't moving to the 1st floor be a good idea? I was on the second floor one year and I moved to the 1st floor the next, and that helped a lot until my last year when nothing could have helped! Good luck on whatever decision you make!:biggrin:
 
I am familiar with all of those orthos, and I'm sad to hear they haven't helped. I feel compelled to repeat that the leading ortho in Maine doing knees and revisions is Michael Becker in Portland. Several people I know have traveled the 3-4 hour distance to have their TKA with him, and since you are nearing your anniversary Coachie, you will soon be within his parameters for evaluation (one year post TKA).

I was lined up to have TKA with Dr. Martin but changed when I found someone closer who seemed just as competent. Frankly, I feel very disappointed that he dismissed your knee pain -- that all of them did. From what I've heard about Cymbalta, it sounds like a good match for you, and hopefully in a week or two you'll start to feel some relief. I can well imagine that you get up every day hoping that today's gonna be that day. But maybe it will give you enough relief to strengthen you to continue your search for an OS who will help. Or perhaps, by some miracle, it will give enough relief that you no longer need to search. With school coming to a close soon, will you be freer to go to appointments?
 
I've decided to stay on the second floor. I would move to the first floor, but my two best teacher friends are on the second floor, so I would want to go up there during break every day anyway. Once I get upstairs, I can stay there and when I go down the stairs, I hop them anyway so it is pain free and easy to do. Students love running errands for me, so I can let them do all the busy stuff that needs to be done downstairs.

Mary- I wish I could see that doctor in Portland, but you might remember that my family doctor sent a referral down and it was denied because "he didn't feel comfortable working with a patient of my young age..." I guess we could try again, but if I was initially denied, do I really want to push the issue with an OS who didn't want to see me in the first place? Should I try to see Dr. Becker or Dr. Kelly in Portland. They are both at the same orthopedic center and Dr. Kelly's bio mentions revisions while I didn't see that on Dr. Becker's bio.
 
Coachie, I remembered that some doc was cautious about "someone your age" but didn't realize it was Becker. Don't know how many revisions Kelly does. Worth asking. A friend of mine had her TKA with him. I think your best next move would be Mass. General. Is that a possibility? Now that you have the bonescan, that should make this process easier. My OS refers complicated cases to Dr. Moody in Lewiston. I want your story to have a happy ending!!
 
Coachie,

Don't they have an elevator to the second floor? In order to be ADA compliant, the 2nd floor MUST be accessible to everyone (students and teachers!) What do they do with a student in a wheelchair?
 
We have a stair lift which is basically a platform and it is scary when you are standing up on it.

I have my bone scan cd, but cannot look at it. I can open it on my PC, but the images are really small (and I don't know what I am looking at anyway...) Is there a way to zoom in or something like that? I would post a copy here, but don't know how to as I cannot save any of it or anything like that.
 
Hi,
I wanted to tell you about my experience with Cymbalta. I have had chronic pain for 16 years. I have used a variety of medications. Last year I switched to Cymbalta and I take 50 mg. It has not helped with my pain at all. It was orginally marketed as an antidepressant. It did help with me with depression...but not with pain. I had a partial knee replacement on 3/1 and have had kneecap pain since I was released to drive and do "normal activities". My surgeon already wants to do surgery again because he thinks it is loose and nothing showed up on my x-ray. He just does not think pain is normal. He said I should not have pain that is worse than the arthitis I had before the surgery. I haven't decided what to yet.
I know from my past experience it takes a while to get a doctor to listen. I lived in MO and for my jaw issues ended up at MN Mayo and then U of MN. I know insurance and referrals are extremely difficult and frustrating. I wish there was a magic wand to fix it. Just be persistent. You might even want to find a different General Practioner...I did that and that is how we found the specialist in MN...an orofacial pain specialist who knew there was even that kind of doctor.
Good Luck...I hope things improve for you
Greda
 
Greda: The Cymbalta has not done anything for me pain wise. I've been on it for 2 weeks now and while I know it takes some time to get used to it, so far it's been a bust. The hard part with taking the Cymbalta is that I cannot take the Ultram with it, so for a few days I had absolutely nothing to take for pain. It was horrible. Finally my doctor agreed that I could take Tylenol 3 but only 1 or 2 a day (because it gives me hives so I have to take Benedryl with it) so I live in constant pain every day. It sucks.

I am tired of calling doctor after doctor, and when I got my mail today, I found out that my last orthopedic appointment was refused by my insurance company because they did not feel that it was a "necessity" since I had just seen another orthopedic two weeks before, so I now owe them $300- in addition to the $143 that I owe for my Bone Scan, the $132 for my EMG and the $112 I still owe my original OS for my latest blood work, x-rays and aspiration. Oh, and in addition to all of that? I have a meeting with the superintendent tomorrow because of the amount of school that I have missed due to appointments and days that I simply cannot go because I am having too much pain.

It's frustrating. I'm tired of this, I really am.
 
When I started in this health care system with my jaw injury I got no from everyone about everything. I finally asked for a nurse from the insurance company to come with me to all my appts and pt ...basically everything. I don't know how HMOs work but with my current insurance company they have a nurse who calls me to check in with me regarding any tests or surgeries. The call quite a bit.

Is it possible to get a nurse assigned to you. This nurse I had, came with the attitude of I was making a big deal out of nothing but after she went with me she changed her mind and was a great advocate for me. I knew it would be a 50/50 chance that she could help...but it could be one more way to learn about your insurance. I studied integrative health in graduate school and the kaiser permente has been around a long time. I always wondered how they were.

Right now for my knee I take 800 mg of Advil and 1000 of Tylenol...for my jaw I take narcotics but they do not help my knee. I do take Ambein for sleep and it works about half the time. My husband is in the psych field and he says Cymbalta is mainly used to treat depression and sometimes they have seen a difference with controlling pain. It is very new...I know when I am depressed my pain seems worse however when my depression is under control the pain is different. I just don't know that Cymbalta is that great for pain as the only medication. What dosage are you on?

I have to go to Joplin tomorrow my parents have been without electricity since the tornado. I have several friends who have lost their homes and cars and pets. My brother lost a dear friend and I just feel I need to get down there to help. My husband has said he will keep an eye on me so I don't too much. It is about a 2 hour drive to Joplin and I am so concerned about what I will see. I will write more on my thread...sorry I got into this on your thread Coachie...while I was writing this my mom called and a family friend had a stroke last night. She is late 70's and made it through the tornado...but lost her house, her car everything. The 2 cats were missing until Tues they were back at the property and the cats were hiding. My mom has the cats one of them is 19 years old and so fragile.

Take care coachie and be persistent. I know it is hard and frustrating...but hopefully things will improve. I had one day a week I called my doctor if they didn't get back with me I would say I can make an appt...So sometimes I would go in or get a phone call.
Greda
 
Coachie, I know it is frustrating to be denied insurance coverage, but you can dispute that decision. Instructions for filing a dispute should be in your booklet or on the internet site. Many times the doctor you saw can help you with the justification and will write a letter to your insurance company. You might want to give this a try.
 
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