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

[RunA42K]

So sorry for your disappointing appointment Coachie! Maybe she was one of those doctors with no personality, no bed side manner so to speak to be able to connect with the needs of her patients, at least not without her own medical facts. I know it must be so hard to wait another week, but maybe once the EMG is done and she has her own information then she will bloom into a doctor who acts like she can and will help you. Take it as just another step, one week then another answer then move forward from there. But again, I am so sorry that it is so hard for you. Just hold on, one day this will all be behind you!

Bonnie
3/28/11

 

[Dewy]

Coachie,

This sounds really strange! Whenever you see a new doctor, they should take a detailed case history (or whatever the correct phase is) ie get you to explain what's wrong, ask you questions etc etc, even if they already have some info sent to them from your other doctor. Then the doctor should explain what they plan to do eg diagnostic tests, or whatever.

Although you thought you had an appointment to see a rehab/pain specialist for diagnosis and treatment, perhaps your GP just ordered an EMG rather doing than a proper specialist referral?

I don't know how the insurance system works in the US, but is there any possibility that the problem is with your GP or insurance plan?

The appointment just doesn't make sense otherwise - doesn't that specialist want to treat patients?

 

[BigGene]

Frequently, in this country referrals are made to specialist by the primary care physician. The specialist does the test, issues a report thast goes to the primary care doc and primary care doc deliveres the results to the patient.

So no in some cases the specialists act as consultants only and do not seem to have an interest in
dr/patient relationships.

This is not always true, but to me it seems to be a trend that has to be fought.

 

[Josephine]

Bizarro! Don't know what to make of that!

 

[Jamie]

Coachie, I apologize for taking so long to get back with you regarding suggestions for revisions specialists you could see about your continuing knee pain.

I have been trying very hard to find someone I was comfortable with recommending that was reasonably close to you. Because of that, I have gone through some 200 web sites from the BoneSmart Clinic Locator, trying to see if there is anyone available in Maine or in an adjoining state.

I am sorry to say that I did not find a single surgeon in the state of Maine that I felt had the expertise to work with you. Diagnosing and treating a complex revision takes particular knowledge and skills. There may be someone out there, but based on what I was reading in the surgeon biographies on various web sites, the information I was looking for just was not there. So that is the bad news....nothing close.

BUT.....I'm going to encourage you to reframe your thought process in dealing with your knee and agree to travel out of state to what I believe looks like an excellent facility for you. It means going to Boston, which is about 250 miles from where you live. I located a group of FOUR surgeons at Massachusetts General Hospital who ALL deal with complex revisions. That means if you see one of them, you have the benefit of the knowledge and expertise of them all to get to the bottom of your pain and get things fixed.

Here is the pertinent information so you can make some calls and talk to either the doctors themselves or their staff. You can also check out the information available online. There isn't a lot of information on the web sites about each doctor, but the fact that complex revisions are discussed and the knowledge that this is a large and well-known hospital offers me a lot of hope.

Massachusetts General Hospital
55 Fruit Street
Boston, MA 02114
(617) 726-2784
www.massgeneral.org/ortho


* Dr. Andrew Albert Freiberg (Department head, and the one I recommend you try first) (617) 726-8575

* Dr. Hany S. Bedair (617) 643-7251

* Dr. Dennis William Burke (617) 726-3411

* Dr. Young Min Kwon (617) 643-7436

Because you would be traveling quite a ways, you may need to stay overnight. And, if you have surgery there, you may also need to stay in the area for a while before returning home. Here is a link to a whole range of possible accommodations that are relatively affordable.

broken link removed: https://www.mghsocialwork.org/accommodations-list.pdf

You would probably be wise to seek out a rehab facility where you could spend the first week or two after surgery to prepare you for the trip home. Or, if that's not available, it looked like some of the accommodations on this list were set up for you to stay there in the early days after surgery.

It would be best if you have a friend or family member who can accompany you to your appointment and any surgery that you have. At the appointments, it helps to have a second set of eyes and ears to take in everything that goes on and be sure all pertinent points are covered.

I also saw one surgeon at Boston University Hospital who specialized in revisions, so this is an option also.

Boston University Hospital
* Dr. Hari Parvatanini (617) 638-5633
broken link removed: https://www.bumc.bu.edu/orthopedics

Coachie, I know this is probably not what you hoped to hear and I also hoped there might be a good revision specialist close to you. But, it just isn't the case.

Because you really need to get this straightened out, I strongly recommend that you at least go talk to one or more of these doctors. At times like this, you must do what is right for you. The rest of your life is just too important to remain in pain like you are now.

God bless you hon....here's a big ol' Kansas ((((HUG)))) to get you started on your journey. Please lean on us for support when you need it. We'll be in your hip pocket every step of the way.

 

[Coachie]

Thanks Jamie. I'll definitely print this out and show my primary care physician when I see her next Friday.

On another note- today was interesting as well- but more in a good way than a bad. I went to see a new orthopedic a week ago- one that is young, has a good reputation, and has done some revisions/reconstructive work. At the time, he had mentioned waiting for a bit longer and trying a brace or pt in order to see if any of that would work. He (like the other orthos I had seen) was hesitant to do a bone scan because it hasn't been a year yet and all have said that hot spots show up and sometimes it is difficult to see the difference between what is "good" and what is "bad".

Anyway- I went down today to get fitted for a brace that I would try out and see if it could help me at all. When the casting technician put the brace on my knee and I stood up, the pain in my knee cap area was horrible. We thought maybe the brace wasn't situated well enough so adjusted it and tried again. Once more, my knee cap was really hurting, so I sat and took the brace off while she decided to go ask the Dr. what he thought we should do if the brace he suggested was hurting me so much. Long story short, he ended up coming back to the casting room and talked with me about what was hurting and what he thought after having had more time to review my files. He decided that 10.5 months out is long enough to have to wait and has ordered for me to have a bone scan. He said that he suspects it is the knee cap and how it is fixated (it's non-cemented and is a press fit instead.) So, I just need to wait now and get my appointment for a bone scan and then we'll go from there. At the very least, I will have a bone scan and an EMG so hopefully between the two of those, we might be closer to finding an answer.

He apologized to me for not ordering the bone scan last week, said he feels bad that I am so discouraged and that if I can hang in for just a bit longer that he thinks we can figure this out.

 

[Coachie]

Coachie,

This sounds really strange! Whenever you see a new doctor, they should take a detailed case history (or whatever the correct phase is) ie get you to explain what's wrong, ask you questions etc etc, even if they already have some info sent to them from your other doctor. Then the doctor should explain what they plan to do eg diagnostic tests, or whatever.
The appointment just doesn't make sense otherwise - doesn't that specialist want to treat patients?

I kind of suspect that she didn't say a lot to me because she could see I was feeling a little overwhelmed so maybe didn't want to overload me. She is actually a good doctor, so I don't want people to think that she didn't do her job correctly. My discouragement and frustration weighs pretty heavily in how I wrote yesterday, so I was a little negative.

My primary care didn't do the referral but it was through an orthopedic that I saw in early April.

I agreed to see her since I knew she would do an EMG if she found that I needed one.

 

[Jamie]

Coachie, no matter what, I would still at least get an additional opinion from one of the revision specialists at Mass General. It's always a good idea when you are dealing with a situation like this. I know you want to feel better as soon as possible, but don't let that strong desire cause you not to do diligent research beforehand. You really, really want a surgeon who does LOTS of revisions. The extra experience helps ensure success.

I am happy this doctor is in the game now. That is really promising. Next time you talk with him, though....do ask how many revisions he does in a year....just to be sure.

 

[Josephine]

I went to see a new orthopedic a week ago- one that is young, has a good reputation, and has done some revisions/reconstructive work.

You don't want someone who has done 'some' - you want someone who is expert. At least 200 a year if not more. You might be lucky and he'll successfully sort it for you but it do you really want to take that risk?

 

[maryo52]

Coachie, So, finally some good news!

I second Jamie's recommendation of Mass. General. I had done some research of orthos in the Boston area, thinking of you, and had noticed that the orthos as Mass. General had significantly higher ratings. (My uncle is an MD in the Boston area, affiliated with Mass General, and he jokingly calls it "Mother of God" hospital :hysterical

The knee cap theory seems so right on based on what you've described. Got my fingers crossed.

 

[Coachie]

You don't want someone who has done 'some' - you want someone who is expert. At least 200 a year if not more. You might be lucky and he'll successfully sort it for you but it do you really want to take that risk?

I'll keep that in mind when I go back to see him after my bone scan.
Are there any other specific questions that I should be thinking of asking if the word "revision" comes up? I had a list of questions for when I had my original tkrs, but I imagine that if I have to have my knee cap replaced again or something that there are different things I might need to ask about.
Thanks!

 

[Coachie]

I'm having my bone scan today. I am actually in between phases right now- have about 2 hours before I have to be back for phase 3. Don't know what will come of this, but between this and the EMG that I'm having on Tuesday, hopefully we can figure something out!

 

[Josephine]

Keeping my fingers crossed for you!

 

[Coachie]

The bone scan went okay. Since I don't see the OS for a couple of weeks, they are also sending my report to my primary care physician. I have an appointment with her next Friday, so even though she does not have experience with orthopedics, at least she can read the report and give me a heads up of what to expect when I go to my next ortho appointment. I tried to look at the scans while I was having it done, but couldn't figure out what they meant and since I use a Mac, I can't view them on my computer.

I had to move and carry some things around yesterday so consequently my knee hurt pretty bad last night while trying to sleep. I had a hard time getting comfortable and ended up having to get up around 1 a.m. and take some pain meds- something I have not had to do since last July! It's frustrating to know that I am almost 11 months out and cannot carry three tubs of clothes up a flight of stairs without paying for it during the evening and all of the next day. I still hurt pretty bad today :(

Does anyone know what the dye is that is injected during a bone scan? The technician told me and I meant to write it down, but then we got chatting about other little things and I forgot.

 

[maryo52]

You're making progress, Coachie. You've set up follow up appointments, gotten your bonescan, and hopefully things will move forward accordingly.

I can't believe you're going through all this while teaching school full time. My son's third grade teacher had uterine cancer and would teach every morning and then drive the 1.5 hours to Bangor for treatment every day, and I'm glad to say she beat it. Teachers are amazing.

 

[Coachie]

Thank you, Mary. That was nice of you to say

I have missed quite a bit of school due to appointments and such, but I try to have them in the afternoon so I don't miss as much. Unfortunately that doesn't always work since my original ortho in Dover-Foxcroft only does morning appointments as he does afternoon surgeries.

I do feel like I am doing a better job taking control of my situation. There have been days when I have been extremely discouraged and have not known if I can keep fighting, but I am glad that I have continued to fight and that I might be getting somewhere!

 

[Josephine]

I don't know the name but it is a radioactive substance.

 

[RestAssured]

Coachie,

The dye is a radio active dye. Iradium or something like it. Can't remember how to spell it.

 

[PhoenixS]

(My uncle is an MD in the Boston area, affiliated with Mass General, and he jokingly calls it "Mother of God" hospital :hysterical

This is because there is a book called "The House of God" loosly based on a first year residents' experience at MGH.
It is actually a hilarious book and almost all medical students read it for a laugh.

Coachie, Go to MGH. Your knee is worth at least the consult.

Best,
Sandy

 

[Josephine]

Sandy, I looked that book up and must get it. At circa 1978, it's just my time! :hysterical:

I also loved The Laws of House of God

3. at a cardiac arrest the first procedure is to take your own pulse
4. the patient is the one with the disease
5. there is no body cavity that cannot be reached with a #14 needle and a good strong arm
​

:hysterical: