TKR Widget1's recovery thread

[Widget1]

@Slainte - I've decided to go about this a little differently. I already have an appointment on Monday to see my Internist for a flu shot and a prescription for pain meds. I will have him look at my knee and go from there.

What's behind my reasoning is that last year when I went to the walk-in clinic with my right foot swollen like a football and in so much pain they took an x-ray and said nothing was broken and I should just stay off my foot and rest. After that I went to another Doctor and he ordered a 3-phase bone scan and results came back read by Radiologist as osteomyelitis. I then went to my Internist and he ordered an MRI. A different Radiologist read the results also as osteomyelitis. My Internist said he thought it was a stress fracture, but that it was too important to gloss over those two readings, because if it was indeed osteomyelitis I'd have to start on 6 weeks of IV antibiotics immediately. He made one phone call, and the next day I was seen by the top Ortho Trauma Surgeon in Tampa for another opinion. That Doctor said it was a stress fracture, and I was fine.

If my Internist discerns that there is an infection, he'll be able to call in a prescription for antibiotics and it will be ready for me to pick up on my way home. He will also call the OS office and advise of the situation. The last time I went to the OS office (on August 11th) for this pain and swelling in my knee, the Fellow that I saw said it was tendinopathy and would go away in a week or two and I was to take it easy. I think I trust my Internist more to be looking out for me, and the Fellow told me on August 11th that any care I'd need before my one year checkup next May should be with my primary MD.

So, I definitely will report back on the outcome on Monday afternoon!

 

[SarahJane]

Wow, what a roller coaster you've been on these past few days. Glad that Josephine and Skigirl were able to help you out. I'm hoping that you get the information and assistance you need from your primary care provider. It's true that he's more likely to get the attention of your OS than you are. Crossing my fingers and toes and elbows and nose that everything works out OK.

I'm also glad that you're taking it easier on the physical therapy exercises, walking, swimming, etc. There are times when I feel like I'm just a lump on a log or a couch potato, but then when I do a little too much I end up paying for it the next day or so. S*cks, doesn't it? Guess we need to take the long view here, and not put too much pressure on ourselves for the day-to-day stuff.

 

[Pescara]

I still have lots of meltdowns so my GP put me on Celexa for a couple of months. It has made a big difference. You should have a nice long talk with your PT and explain everything before you do anymore.(Just my opinion). My scar is almost all gone but still looks angry. Maybe it's my cyst and will be better after surgery. I babied my knee for so long it took time for Mr ROM to get back to where it was. Don't give up. You are still early in your recovery. The only problem I am having is the oxy. Now I know why I never did drugs lol and it makes me itch. . Keep your chin up. It can't get much worse. Every now and then my knee gets red and hot with some swelling. Ice packs are my best friend.

 

[Slainte]

Sounds like a good plan. I am sure you are taking it easy this weekend. Monday will bring answers.

 

[Widget1]

Thank you for your kind words of encouragement!

No walking or anything for me for awhile. I'm spending the weekend trying to get my Amazon shop set up, and it's an extremely tedious project, because I have to hand enter all information, and there's no copy or bulk upload feature.

I have a timer by my computer, so that I will get up and walk around and stretch once per hour. My left leg is elevated all the time when I'm sitting here (I redid my office pre-surgery so that I'd be able to function with the knee once I got home). My knee still looks like it did when I took the photo yesterday, and still hurts, etc. Working on this Amazon project will take my mind off of thinking too much about what's going on with the knee.

 

[PolarBear60]

Good plan. Your knee and your business stand to benefit.

 

[Widget1]

@Josephine -
I am bowing down to you, oh Goddess of Ortho knowledge, in much gratitude!

This morning I went to the PT session, but stated right off the bat that they could do nothing to cause pain, and please do the ultrasound and ice treatment ASAP. The cortisone rubbed in and then the waves of the ultrasound working it in worked a little bit. In trying to make sure that my foot is not at an angle when I walk, I think I've brought the IT band to life in protest My ROM up from 115 to 122, but extension still at 5.

This afternoon I went to see my primary doctor, as I needed a flu shot, and he wanted to discuss radiology tests and biopsies results with me (nothing to do with my leg). I explained to him that the Fellow told me on August 11 to next come back to the Ortho office next May for my one year checkup. I showed my doctor my knee and explained to him how now at 16 weeks, I have pain that I did not have during the first 12 weeks of recovery. He said it looked like maybe cellulitis. I hadn't cut myself, but the week before last I remember that a mosquito bit me on my new knee when I was taking the trash out. I remember it because mosquito bites always swell up on me and I was cursing the bug for eating blood from my knee. My doctor said it's possible for bacteria to get in through something as small as an insect bite. He prescribed antibiotics, but told me to call and insist that I be seen by my OS, because at 4 months out I shouldn't have this degree of pain in two places that I hadn't had pain before. He told me that I should demand to be seen for patient followup, and that he knows that I am capable of raising a stink (I copied him on the letter I sent to the CEO of the hospital about my treatment there). My doctor said he can see probable infection on the surface, but he is not a surgeon, not an Ortho doctor, and whoever did the surgery should treat the patient for pain and issues after the surgery. He's concerned that a scan or something should be done to determine if my patella has moved or what is going on inside my knee and leg. When I got home I called the OS office and the earliest I can get in is two months from now :( but I do have an appointment for 8AM tomorrow to be seen by a doctor in my OS office. This time I won't be brushed off like I was on August 11th (when the Fellow said it would resolve in a week and my primary doctor should treat me for everything until my one year follow-up).

Again, thank you for sharing your wisdom with me!!!

I'll update tomorrow after I get home from the OS practice appointment.

 

[Celle]

Good move, @Widget1 ! Keep making a fuss until you are seen by the surgeon himself, and not by one of his minions. It astounds me that he takes your money and yet has no system for for seeing people who have a problem outside of his set dates for follow-up visits. Lack of responsibility, I call that!

Best wishes for your appointment tomorrow. Do let us know how it goes.

 

[Pescara]

@Widget1 Good job on being forceful. As mom used to say " the squeaky wheel works". Let me know how your appointment went. I called Blue Cross every day until they approved my back surgery. They got tired of me calling so they gave up and approved it! We always get good advise from here. I must have missed something about my favorite site to shop at. What are you selling so I can shop your items? There has to be something I can't live without lol. After all this time my knee is still very stiff in the morning so I make myself walk around the house a couple of times. It helps to get things going. Last night I told hubby to make sure I see a PT the day after surgery to keep my knee from going stiff . I don't know if they can help but never hurts to ask since I will be in bed for almost a week. . I don't want to undo all the hard work I have done. Did you find a chiropractor?

 

[Widget1]

Update....

I was at the OS office bright and early this morning and checked in for my appointment. After a few minutes someone from the front desk came out and asked if I had fallen. I said no, I have not fallen. She then informed me that I was only to come back to the OS office for my one-year appointment. I started crying, but then spoke up (not yelling, but noticed other patients looking at me) and said I had seen my primary MD yesterday, and that he said it is the responsibility of the OS to treat their patient who has unusual and consistent pain 4 months post-op at the site of the surgery that the OS performed. She then went back to the desk. I was called back to an exam room, and saw the #2 person of my OS office (thank goodness). He talked to me, examined me, then sent me to radiology for some tests, then called in a couple of other doctors to look at me and ask questions and touch my leg and watch me walk and move my leg, and the diagnosis is CRPS Type 2. I'll receive a compound pain cream from a pharmacy later this week (to use 4x day), and the great new (to me) doctor from the Orthopaedic Institute that I will be seen for treatment by is a Board Certified Interventional Pain physician. His residency in IM and anesthesiology and fellowship in interventional pain was at Harvard, and he went on to teach for 10 years at Harvard, and also served as Medical Director of the Mass General Pain Center. He will be giving me nerve block treatment, and the mighty OS himself insists on personally seeing me 3 weeks from today.

I'll just be taking Tylenol for pain, as the Norco wasn't working anyway, and I was told today that for this condition the narcotic pain med wouldn't help alleviate the pain. I'm to continue the PT (leaving shortly for today's appointment), but they have updated the order to emphasize just some basic gentle moves and to do the cortisone - ultrasound treatments each time and the icing. I know nothing about CRPS Type 2 or what it means, so will Google and read when I get home later this afternoon - wonder why the acronym doesn't have an A in the middle of it .

If I had not spoken up today I'd still be wondering what in the heck was going on with this pain that started only about 4 weeks ago and that wasn't in any area in which I'd had the post-op pain that has gradually reduced. I do know that I would have felt kind of helpless and defeated, and would have been sad to think that I'd maybe have this pain for the rest of my life and that no one would see me, but rather push me off on a different medical provider rather than listen to what I had to say, and do a real exam on me.

 

[SarahJane]

Widget, glad they finally paid attention to you! You'd think their front office staff would be better trained to listen to the reason why you're there. And sorry, sorry, sorry, to hear about the CRPS. @Legin, a "hippie" from Scotland, has a CRPS diagnosis and has discussed his journey extensively in his threads. You can also search for #CRPS on Bonesmart, and find posts discussing it. I don't know the difference between types of CRPS, so I can't help you there.

 

[Celle]

@Widget1
I'm sorry about the possible CRPS diagnosis. However, from what I've read, early treatment gives the best chance of resolution.

What did they say about the possible infection from the insect bite?

I'll tag @Josephine, so that she is sure to see your latest update.

 

[SarahJane]

I found two links on the internet discussing this. The first is relatively short, and contains links to non-profit organizations and groups concerned with CRPS.

broken link removed: https://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm

The Wikipedia entry is much longer reading, and contains a dispassionate and fairly extensive summary of medical research and diagnostic and treatment techniques. Consequently, it is not for the faint of heart. https://en.wikipedia.org/wiki/Complex_regional_pain_syndrome

 

[Josephine]

and the diagnosis is CRPS Type 2

I'm more than a bit bemused that he made such a swift diagnosis of CRPS as that usually takes weeks and months to discern and is pretty rare. Much more likely it's just neuropathy which is more common.

 

[Widget1]

@Josephine - Again, thank you! I didn't actually see the Pain Intervention doctor today. Yes, isn't it odd that I was being swept out of the office because I hadn't fallen and therefore not worthy of being seen, yet almost 4 hours later there's a diagnosis of CRPS 2 by 3 doctors who have never seen me before and as far as I know didn't go through my chart (that spans the last 3+ years there)? It's like an inventive way of again getting rid of me, because they referred me to the other specialist. I do have the appointment with the Pain Intervention doctor later this month, and from everything I've read about him, he knows what he's talking about, and also that he has an incredible rapport with all his patients. I'll see what he says and what he tests, and what the outcome is. Is tendinopathy a neuropathy? The Fellow that I saw the last time I went to the OS office on August 11th told me that's what I had (tendinopathy).

I'll just choose to remain skeptical and see what happens. The pharmacy called this afternoon and my copay for the compound cream (with 6 ingredients) is $127.00. I asked if there was something else (I've paid large copays before for medicines that I was only able to take two doses of, so hesitate about shelling out more money). The pharmacy said there's another cream that has only 3 of the 6 ingredients, and the copay is $25. I told them I'd take that one. FedEx will be delivering it to me tomorrow.

 

[Widget1]

Thank you all for your information and support!

To add on (I'm so confused by it all), the #2 person at my OS office said I had RSD, and one of the other doctors told him that no, it's now termed CRPS, and since I had surgery it would be type 2.

About the knee and the insect bite and the red-purple and pain that wasn't there a month ago (or months ago) I was only told to continue the course of antibiotics and if there are still problems to go back to my primary doctor. I piped up and reminded them that my primary had prescribed a course of antibiotics only to tide me over until I was seen by the OS office, because infections are not to be ignored. No answer and they went on to discussing something else.

In my frustration I forgot to ask where the chiropractor referral was, because I had left a message asking for a referral (the voicemail says they'll try to return all calls within 3 days) and still have not received one. I can call tomorrow and make yet another request, or maybe I'll go online and do it, because then I will have a record of my having made a request.

It was also peculiar that my OS, whose next appointment date available was over two months away, was brought into it. I have an appointment with himself three weeks from today. Perhaps someone realized that he should be brought into this patient care case, as he is the surgeon and I am the patient.

Right now I feel a migraine roaring down on my head, and so I may not be back tonight. In an ideal world, it shouldn't be such a battle in order for patients to receive care from their physicians.

 

[Widget1]

@Pescara - Katie, my knee is stiff as well, and my TKR was only one day before yours. But, we're light years ahead of that first week that was 16 weeks ago, aren't we?

 

[SarahJane]

Glad to have Josephine's reassuring alternative suggestions. Crossing fingers and toes it turns out to be a tendon problem.

 

[Legin]

I heard my name what have I done wrong.....
OK hiya @Widget1 its a runaway train isn't it. I have type two CRPS. Yup its caused by an injury and the injury can be slight or major. I too went to a Chronic Pain Clinic as for months I had a major area of horrendous pain in my foot, (I also have nerve damage from the surgery so other areas of foot are numb a regular sporadic minefield). Along with the pain I have other major presentations of CRPS:
Skin, its blue and motled, some have bluey red. The skin looks taught and shiney. The hair growth is affect so one leg is basically bald. The area has a diff temperature mine is cold to touch. Any knock can feel like hitting funny bone to the power of five and it takes eons to go down. Even cloth touching can be uncomfortable and sore. With me in a flare up wind hurts. Cold is thy enemy it gets into the area I can't walk on cold tiles. One big tip right now is vit C is thought to stop it soreading esp further surgeries. Oh and swelling, my foot had been swollen for over a year and I wear a heel raiser to compensate leg length differances. I can't add more just now as just finished work and now have a bus ride and my Citizens Advice Bureau to I have been trained recently in this. I'm saying this as a point I still have CRPS and it, shouts at me but I'm reclaiming my life back. If your diagnosis is confirmed I will be happy to talk about ways forward. Tooooodles and hang in there pal there is always light.

Legin THR Sep 14

 

[Widget1]

@Legin - Wow, my ♥ goes out to you with all you've had to endure with CRPS. That is really frightening to me, and kudos to you for persevering through the chronic pain. Thank you so much for sharing with me! Sending virtually some of our tropical heat across the pond to you so that you can warm up a wee bit (last year we officially had TWO days of winter).

I am hoping that what Josephine mentioned is absolutely correct, and that I was just thrown a diagnosis yesterday by my OS office in an attempt to get rid of me. I'm praying that this is neuropathy.