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

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wanttoride said:
Coachie, There are a several pain specialists in the Bangor area. I don't know why your PCP can't call a few and see how open their schedule is.
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I don't know why my PCP insists on this clinic, but for some reason she does.

wanttoride said:
You year's anniversary from your surgery is sooner than a possible appointment at the rehab center. My guess is that once you see Dr. Walsh, he may have a clue as to why you are having pain, and then be willing to possibly scope your knee, or do other diagnostic tests.
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I don't see Dr. Walsh until July 15th. There are no earlier appointments and I am on the cancellation list, but I don't know how high on the list I am. Dr. Walsh has already said that he won't do a scope or surgery because of the risk of infection. He doesn't want to go in to look when he doesn't know what to look for.

wanttoride said:
Stress is a BIG part of pain. If you are "anxious" and your medication isn't helping, I would talk to your PCP about that. Waiting when you are in pain really "stinks".
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I've been told over and over again that I just need to focus on other things but when your knee hurts every time you try to stand or sit down, it's hard to think about something else. It's not like I am focusing on the pain because I am busy and I don't- but when I start to stand and my breath is literally taken away from me because of the sharp pain under my knee cap, it is kid of hard to not think about it.

As far as talking to my PCP about my pain- I've called her every day this week, two times last week and at least once a week since December asking for some sort of help in managing my pain. There is NOTHING that can be done. Nothing. I've tried pain medication, lidocaine patches, staying off it completely, massages, etc. I'm on medication for depression and go to counseling once a week, I've had chiropractic care, an EMG and a bone scan. I've had x-rays upon x-rays and appointment after appointment. She is a good doctor. She has tried really hard to help me, there is just nothing out there because she does not have orthopedic experience. She's not an orthopedic, she's a pcp.

My orthopedics have tried, but there's not a lot they can do either. As many people have said, I truly am in a catch 22 for just about everything- pain management, dr's appointments, insurance policies, etc.
 
I hear you, Coachie...really, I do! .....I know the "year wait" is killing you. Again...been there before, and again...I'm having to wait until after Sept. 22nd of this year to have something else done..either a fusion or a thicker spacer. NOTHING...and I mean NOTHING has been able to help my pain. Not only do I have RSD, but my knee is loose. I also have pain under my kneecap, as it had to be put "back on" slightly lower than it should be. My hamstrings feel like rubber bands that are going to break any minute. I do not have more than 90 degrees of flexion, so doing any type of standing and sitting just "zings" everything from hamstrings to tendons to ligaments. The only thing that has worked is having my leg in this cast and making the leg immobile. That way, nothing within the knee can rub, pinch, bind, stretch, etc. The RSD becomes aggravated when the knee is put into these types of situations: standing, sitting, walking..you name it. If the knee moves, I'm in pain.
I reading above again, and you are lucky that you were given a bone scan before a year. They would not do one one me before a year's time was up. You have to hit that year mark in order to let your body TRY to heal itself, infection possibilities, etc. July 15th is a month away. You CAN make it until then, Coachie. I know you can!
I dont' know why your PCP is adamant about going to the rehab center, but (in my opinion) if you are an urgent case, and you are at wits ends, waiting for the rehab center is not an option. Your PCP needs to find you someplace that you can get into. Since you have tried a list of medications and nothing has worked, have you researched nerve blocks? It is my guess that when you go to the pain clinic and you tell them that NOTHING has worked, they are going to suggest this. I know you had an EMG and I'm guessing (?) it showed that your pain was not nerve related. Again....? Fill me in.
In my opinion, you are NOT in a Catch 22 situtation. I know that's hard to hear. Nobody has told you that your case in hopeless. Your orthopedic guy that did the surgery may not be able to help you because your problem may be beyond his expertise. That's why they have revision surgeons....and Dr. Walsh is one of them.
Your posts have me (wanttoride) written all through them. Please believe me when I say that you are very fortunate to be seeing Dr. Walsh in a month. I truly, TRULY believe that he is where you are going to find answers as to WHY your kneecap hurts. As far as the swelling, sometimes it takes over a year for the swelling to go down. However...it could be the swelling that is causing pain to radiate under your kneecap. You will find out very soon.
As this "ordeal" (as I call it) with my knee has gone on for close to 2 years now, I have learned that a pcp can only do so much. I "fired" my original pcp after being with her for almost 20 years, as she was not the advocate I needed her to be for me, in this situation. With my new PCP, I am getting results, and can get in to see her THE DAY I CALL. Yup...no kidding. My PCP can only do so much....Dr. Kelly and his staff can only do so much, and my pain specialist can only help me if there is help to give (as in medications or treatments). I have a friend that has gone to a pain specialist for 2 years now for her back. No medications, etc. would help, but she goes to a pain support group to help "deal with" her pain and to vent, along with counceling sessions with her pain specialist. I know you want that "magic pill" that will allow you to get your life back, but the rehab center and pain specialists do the entire spectrum, not just meds.
PLEASE, PLEASE, PLEASE have faith that your appt. with Dr. Walsh will start you on the road to finding out answers. In the meantime, I envy you, as you are only a month away from your year.
If you truly have had it with waiting to get into a pain specilist, I highly recommend that you call around to some of the pain centers and doctors yourself, and TELL your PCP to do the same.
 
Audrey- I don't know how much of my history you've read, and to be honest I am pretty tired so I don't want to go back and reread what I wrote, so I'm sorry if I repeat myself here :p Warning- this is looooonnnnngggggg.

My original orthopedic (Dr. Swett) sent me to your lovely Dr. M in November because he couldn't figure out why my knee cap still hurt, why I was having pain when I took a step, and why I had a feeling like I had to snap my knee all the time. Dr. M said there was nothing wrong with me and that the pain was "normal pain". When I said that my knee cap had not hurt that bad when I had my left tkr, he told me that I probably forgot about that pain...

After that, I continued to have pain and was in and out of Dr. Swett's office about every month; called him about every week and we tried cortisone shots, I had an aspiration, tried going back to physical therapy, etc. None of that was working and my physical therapist told me that she thought I was doing more harm than good based on the pain I was feeling.

In February, I ended up getting a referral to Dr. Walsh- was supposed to see him the first of June. Dr. Swett and Dr. Walsh ended up at an orthopedic conference together and before I knew it, my appointment with Dr. Walsh had been moved up to April 11th. I went into that appointment with my hopes really high that he would have some answers for me as to why I was still having so much pain, especially while in the process of standing and sitting. Dr. Walsh's exact words- upon looking at my x-rays from November, not examining my knee and not really asking me any questions- were "I can't help you. It's all nerve pain and there is nothing I can do for you." When I started crying because I was so disappointed that he couldn't help me, he added, "and I think you're depressed. You need to take Cymbalta because that will help with your nerve pain AND your depression." Well, I was already on some medication for depression (since October) but I didn't think my behavior warranted him saying that. He referred me to a Physiatrist to see if I could get an EMG. That was scheduled for May 2. I had my consult and then on May 10th had my EMG which turned out that I did not have any nerve or muscle damage, that they were both functioning well.

Anyway- after that Dr. Walsh appointment, I got home and was so incredibly discouraged that I didn't know what to do. I ended up getting ahold of Dr. Bush (in Auburn) and got an appointment for June. I was on the cancellation list, so when they called me later and said they could see me April 25th, I agreed. I went to see him and he said he wasn't sure what was going on, but he thought I should try a brace. I went down the next week for a brace fitting and immediately started crying because it hurt so much. The cast technician went and got Dr. Bush who agreed that I should have a bone scan. I had that May 6th. I went back to see him on May 19th and he said he wasn't sure what to do. The bone scan shows that I do have some stress and bone turnover, but he didn't think that at this time it warranted a revision so he wants me to go back in 6 months.

That night I was so discouraged that I at times was ready to just give in. However, the next morning I called Dr. Swett back and asked him what he thought I should do. He suggested that since he is not qualified to do revisions of any sort, that I should go back to Dr. Walsh- that maybe now that the EMG showed no damage he would be willing to help. So I called Dr. Walsh's office to set up an appointment. That is when they scheduled me for July 15th. A week later, Dr. Walsh called me at home and talked to me for a while and said basically the same thing all the other orthopedics have said- that they cannot see why my knee is still hurting, so there is not much they can do. He ordered an MRI of my lower back just in case - which I had last Monday. I have agreed to see him because he was very apologetic and said he would try to find a reason- and what the heck. No one else can figure anything out either, so why not try him again?

So that is the long version of it. I am discouraged because I have been told there is nothing that can be done. I have been through almost every test and there has been nothing found. It isn't that I don't feel bad for people who also have to wait and who also have pain- it is that I am frustrated because there seems to be no reason for my pain. That is why we can't treat it effectively. That is why I am upset.

I'm sorry that you have struggled. I really am. Too bad they can't go in earlier, huh? I don't know if I would want a full cast in the summer either. What if our good old Maine blackflies get down your cast?? lol.
 
oh and p.s. I'm not getting a nerve block no matter what they say. My insurance doesn't fully cover one and there is no way I am paying for one out of my own money. I don't even want to go to a pain management clinic, but am only going because everyone is pestering me to go.
 
Wow, Coachie! Thanks for posting again for me. You certainly have had a lot of tests, and especially with the EMG showing no nerve damage, it sure is baffling. I would not have the nerve block either. Basically, because I just KNEW there was something wrong. I'm glad I stuck to my guns on that one.
I am hoping that when you see Dr. Walsh, he will either have a change of heart and be willing to "explore" your pain, now that you have had all these tests and they have all come back negative.
If Dr. Walsh cannot help you, or isn't willing to.....DEMAND that he write a referral letter with the details of what you are experiencing so that you can get into OA in Portland and see somebody else.
I really believe that a lot of these OS don't dare to go into a knee that is in pain for fear that they are entering the "danger zone".
My daughter is employed in the Bucksport School System as a special education teacher. I'm sure you both have the same insurance through the Maine School insurance. Why is it that you can only see somebody in Maine? I'm curious, as if she had problems and wanted to go to Boston, I'm wondering if that would be possible.
Dr. "M" is a complete A**. I'm sure he felt that your pain was "normal" because he sees it so much in his knees that he messes up! (sorry...just HAD to say that)
Don't give up hope, Coachie. There IS a reason why the pain is there. Have you ever had a blood test to check for infection?
Be sure to make a list of questions when you go to see Dr. Walsh. Make sure to include questions about getting a referral and if he's willing to go the extra mile to get you into a revision specialist, regardless of your age.
 
I talked to Dr. Walsh this afternoon and we discussed the pain management clinic and the Physiatrists that work at his office. I felt listened to and understood for maybe the first time in about 3 months. It was a new and slightly weird feeling, but a good feeling too :)

I have a new attitude and a fresh outlook on all of this and am ready to tackle it head on. Watch out world- here I come!!!! :yes 4:
 
Yay!!!!! Oh, Coachie...I am sooo happy for you!!!! :yahoo: I just knew Dr. Walsh would come through for you!!!! It's a start...and a good one! Isn't it a GREAT feeling when you are listened to! If you'll be the train...I'll be your caboose! Wooo woooooooo!!!!!! :friends:
 
Coachie - sending you hugs of happiness :thumb: It's amazing how being truly listened to can change one's outlook. Fantastic!
 
It is nice to feel like I am listened to. I just wish this had all started to happen a few months ago instead of now. My summer vacation will be almost 1/2 over before I see Dr. Walsh and that means that if there is anything that needs fixing that I'll have to wait and live in pain for an entire year before being able to get relief. That is the only thing that discourages me at this time. That I am being listened to, but I am still going to have to wait and wait. Sigh...

Between now and next Thursday, I have 8 appointments- all because of this knee and that it's not healing. 3 of those appointments are due to my situational depression caused by it, 1 with my pcp because she is the one who regulates my medication, 2 with a chiropractor because I've now been limping for a year (plus the limping I did before the surgery) so my body is all out of adjustment, 1 with the pain management clinic for an informational seminar, and then of course I have to go to the dentist in between all of those appointments! Why wouldn't I?? :)

Out of those appointments, I will be paying $115 in co-pays. In one week. If I think about the number of co-pays I've paid since the beginning of this journey (one year ago tomorrow!) I think it would exceed $500. That is simply not right. Plus I missed school time for appointments and lost all of my sick leave.

But- even though I have all that stacked against me, I am still currently facing this with a positive attitude. I am going to enjoy my summer vacation and do the best I can to get help from those who can help me- ask questions when I can, and be my own advocate for health care.
 
Hang in there Coachie. Hugs and prayers are with you in this battle. Ann
 
When life gives you Lemons, make and drink Lemonaide....sip it slowly, savor the small pleasures in life and plan for a brighter tomorrow.
Stay strong & never give up.....advocate for yourself!
I'll be praying for you.
 
:th_heehee::th_heehee:
sashayinglady said:
When life gives you Lemons, make and drink Lemonaide....sip it slowly
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Add some BOURBON for the health/mental well-being....:th_heehee:

Coachie:
I am also going beck to a pain management clinic, though a different one associated with Beth Israel here in Boston.
I haven't had a summer off since college.
I am out now for the summer as my PCP put me on Medical Leave yesterday.
I think I'll share some of that lemonade....
Best,
Sandy
 
Coachie, so glad you've had forward movement.

I can relate to having a life defined by appointments. Finally winding down for me, but for a while, between the massage therapist, the shrink, the OS, and acupuncture (I think I'm forgetting one or two), I burned a lot of gas (as we do in Maine) and had full days. Plus the pharmacy!
 
The appointment was a waste of my time and money in my opinion. I was fairly disappointed in it and am not going to follow through with going to see Dr. A. I am seeing the new Physiatrist at Dr. Walsh's office on Thursday anyway, so if I do any pain management, I will go through Dr. Scott instead as you can get an appointment with him within two weeks instead of three months like the clinic on Union Street.
 
Was this the "informational meeting", or did you have an appt. with Dr. A? I'm curious to know what it was all about. What was it that you didn't like?
 
I was so hoping that the appointment would be helpful. I am not expecting very much from my pain mgmt appt on July 13th. I've been down that road before and got nowhere. It was, however very soon (2-3 months) after my surgery and I was in so much pain from everywhere, I probably wouldn't have known if there was a change.
NEVER EVER GIVE UP. know you are not alone.
Sandy
 
The appointment was a waste of my time and money in my opinion. I was fairly disappointed in it and am not going to follow through
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I am sorry it was such a disappointment...but it was one thing standing in your way of further care. I know it has to feel like you are jumping through hoops. I have too been through the healthcare system and if you aren't compliant with the doctor's idea of what the proper course of treatment is they won't help and just keep on you to do it.
I wish these doctors could go through your pain and realize that you need help now. I hope your next doctor's appt goes better.
Thinking of you and praying for better days ahead.
Greda
 
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