TKR Need Help and Encouragement, please...

[fitchy]

Hi there... I was looking around here for an answer to a question I had and was so moved by your post that I felt compelled to sign up to respond. I would just like to reiterate two things several others have written. (1) Five to six weeks was a major turning point for me as far as pain and swelling. I was becoming very depressed and beginning to wonder whether I had made the wrong choice to have the surgery, when things began to improve fairly rapidly. (2) I agree that physical therapy is unnecessary at this point and hope you'll stop. My OS did not order it, and the only exercise I did regularly was foot flexes, which seemed to tug gently enough at the areas restricting my flex to make some progress without intensifying the pain. I did, however, work diligently on my extension, since that was a big goal for me. When I asked my OS about how much I should be doing, he said, "Let your pain control your activity level." I'm currently 5 months out and have roughly 110 flexion and nearly full extension, and I'm still letting my pain control my activity level.

I'm so sorry this has been more difficult for you than it should have been and hope that your recovery takes a turn for the better very soon.

Hugs,
Mary

P.S. I wish I'd known about this forum before my surgery. Many thanks to all of you who continue to post after your recovery in order to pay forward your experience and hope.

 

[Dhare63]

Listen to Trainwreck, aka Sandy, she is so right that the squeaky wheel gets the grease. Don't let up until you are satisfied with the outcome. Remember that you are their customer, they are not there to do you a favor, they provide a service.

I hope the next few days provide relief and hope for getting on your way to recovery!

Hope, patience and most of persistence!

Dawn

 

[SAS]

Such a sad story, I do hope all works out well in the end. Our treatment is totally different here to the States so I cannot be of any help. but wish you well.

I am 8 weeks today post-op, I felt the first few weeks were awfully depressing and very painful, now at 8 weeks things are looking a lot brighter. My operated leg is doing well, my problem is the second leg has become so painful so I am having to manage both. I am sure you will get there and good luck.

Sheila

 

[BrnEydGrl]

I wish I could hug all of you! I do not know what I would have done without finding this forum. I don't think I ever felt so alone and depressed. I have a lovely daughter but she is so busy with her young family and job and a incredible son who also has his family and his set of financial problems. They live many states away and of course I do call them. I just hate being the mother with the burden. They both worry about me since their father passed. They are still dealing with that and I hate to add any more stress. At least I have them, so I should be thankful.

My mother's dementia seems to be getting worse by the day and as for my step dad, well he is slowly moving into that "other world." Hey has Parkinsons with either Parkinsons Dementia or Alzheimer's disease. Mom calls me for help daily which makes me feel even more helpless. When I remind her of my problems she promptly apologizes but then calls again the following day. I am trying to do as much as I can from my chair. I did push it the other day, and actually drove, it was painful with a 60 degree straight right leg but I was able to pic up her meds for them. She was rushed to the hospital but it was nothing more than a stomach flu. They are still in the independent living section, as my mother is physically in good shape and mentally most of the time. She is not a danger and they do have pull cords throughout the apartment. Nurses and help are in the next building. The cost of assisted is double and she feels she does not need the help. She now has friends in her building and will not move. She is still a real firecracker except for mild dementia at this time. My step dad is a handful and I think she actually enjoys taking care of him as it gives her a responsibility,if that makes sense. He has decent long term memory but terrible short term. His "shakes" are under control at this time. He is ok in the NOW and just smiles and goes along with whatever she says. He is 15 years younger. Mom calls herself a "cougar" she is 92.

I am wondering what my OS is going to have to say today. His nurse said she would be talking to him and would get back to me. I said I wanted a Pain Management doctor to take over, wherever that may be, since he is so negative against pain medication. She kept saying over and over that he wanted me to know he was not withholding pain meds. She said it was just "circumstances". I said that they blatantly said "he does not want his patients to have percoset after a month" and they will call in Vicodin. I reminded her of that but she kept making up excuses. I reminded her that SHE told me to stretch out the medication since they would not prescribe more than five days at a time...when I asked for ten since my helper was flying back home. Anyway, I am curious to see what is going to happen. In the meantime I am taking the percoset as I need it...not one every six hours.

Again, every post and advice I receive is so much appreciated! Love to you all!!! We moved around to different areas of the country we never really set down roots and a circle of friends and support. That was the main perk of our job and we loved it. I just never realized the danger of depending 100% in only one other person. He was my friend, my sister, my brother, my lover, my WHOLE circle of friends, my church, my community...my everything. It is hard to have to re-invent myself and my life ... especially in this situation. Again.....hugs and thank you....I cannot say it enough!

 

[Janet2012]

Moving around does make for a tight circle of two, which sure has left you in a spot! We lived in 5 countries over 18 years, so I know how that part of it is. We've been back for four years and I'm working hard to establish a circle of friendly acquaintance, at least. But losing your mate, especially in your situation, is something else...
Regarding this recovery, even if you were surrounded by close, loving people, they would not be able to understand or support you in the same way that this forum can! You have to have been there or be in it to understand the difficulties, challenges and triumphs of this surgery!

 

[BrnEydGrl]

Well, I guess I was hoping....the OS nurse said she would be talking to him today and would definitely call. Six PM not a call....another weekend with no resolve. I will just take the meds I have....run out...and deal with them on Monday. I keep giving them the benefit of the doubt and they keep doing the same thing. My health insurance casework called with pain management phone numbers.They said I do not need a referral from the insurance company. I guess I will call on my own Monday. (big sigh)

 

[PhoenixS]

I am sorry that you are dealing with this. I think you need to keep the patient advocate for your insurance company involved. In fact, I would file a comlaint against the OS with them too, for the heck of it.
On Monday, call first thing!!! I personally wouldn't have waited for them to call me back. I would have called every hour on the hour until I got an answer!
Please advocate for yourself!
Nobody is going to do you any favors in this cold insensitive OS office. These are not nice people.
You are going to have to take a hard line with these folks or you will be again waiting by the phone for the call that will never come..

 

[leenie60]

I wouldn't wait until Monday they have an answering service - use it.

 

[Shubbles]

I just read through your thread and I have no words to describe how bad I feel for you right now! Your OS is HORRIBLE and should be removed from the practice! I think that you really should find a different OS and have your records transferred there. At least get a consult with one and tell your story and see what they say. My RX was a 10 day at first but it wasn't because the OS wouldn't give more it was because the insurance regulates how much narcotic you can have at once so you don't sell it. Once the pain started to go away I was able to go to 6-12 hours without it instead of every 4 so it lasts longer now.

I really hope you get some sort of change for the better very soon. Do not give up until you do! We are with you all the way!

 

[BrnEydGrl]

Sitting here icing my knee and trying real hard not to feel sorry for myself. I think I will even call for food delivery tonite to celebrate my birthday. Eating frozen dinners is getting really old! My friend stocked up before she left several weeks ago. I did call the pain management office and left a message. Not sure if they are in today but looking forward to some help.
I do have enough medication to get me through the weekend and am able to stretch it out certain times of the day.
As for my knee, I keep icing but it is only a matter of time it swells again and especially at night. It truly turns into a rock around the immediate knee area. My therapist was happy the last time because she felt it had loosening up a bit. Unfortunately a few hours later it was back to a rock.
I figured I would give myself a break today and cancelled therapy. Just was not feeling up to it and thought I would make that my birthday gift.
I talked to my grief therapist yesterday for the first time in weeks. She was worried and was so compassionate over my situation. She too thinks I may have to leave the area for a second opinion. I am lucky I have federal insurance that I can use anywhere. I am hoping that if I have the pain management I will be ok....heck my OS did not want to see me for another three months anyway! I have not called other surgeons because after my GP bailed on me I don't think I could take more rejection right now. I hope that makes sense. Thanks again everyone, this may sound corny but true..you are my, wind beneath my wings at this time.

 

[ElanorG]

Happy Birthday! I am sorry you are alone on it and still in pain. I wish I was there to celebrate with you and could give you a hug. You have been through the wringer and it does sound like you need to go out of area and get some second opinions. But I think it would be a lot easier if you could find someone to do these things with you. Things are always easier if you can share the fear and uncertainty. Maybe your grief counselor would have a suggestion or a local church often has a group that provides help to people. I have to agree with many of the other posters that you need to be firm and pushy to get your needs met, and I know that is hard when you are alone and not feeling great. You will have to dig deep inside and find the strength to be your own advocate but I also think you will feel so much better if you can find someone to be your friend through this and help you through it. I found some unexpected friendships and help through my surgery as I was alone and even though I did a lot of pre-planning you cannot foresee every circumstance. I do think that people want to help and want to be needed, and they will often surprise you if you ask. Tomorrow is Sunday, so maybe a phone call or two to some churches nearby might bear fruit? Keep posting, as we care.

 

[speccybecky]

Happy Birthday! If I could I'd send you my leftover pills!
Enjoy your takeaway

 

[Jacky48]

Hi BrnEydGrl, I can't believe how many times I stumped my foot on the floor while reading your story! Madened is not a strong enough worked and ticked off is not either! I would get thrown off if I said what I felt! You are one strong woman, and hanging on for dear life! I'd say everything is hitting you all at once, the loss of your hubby (your rock), being undermedicated, a swollen knee, a mom with health issues and a stepdad with health is issues, all this is sure to way heavy on your mind! And, to top it all off, two very insensitive doctors! Even a saint would have to fight back from hurting someone, if you weren't hurting so much yourself, emotionally and physically!
Hang in there and stay strong my BoneSmartie friend, and hopefully soon you'll get some order to this mess your doctors have created!

Do have a Happy Birthday. and treat yourself nice, you deserve it! Enjoy your take out for dinner!

 

[Pumpkin]

Happy Birthday, enjoy your take out tonight. I am sending you a virtual (calorie free) cake!

 

[Debbie_joints]

Happy Birthday BrnEydGrl, I hope you enjoyed your food delivered today. What did you order? Do you ice at night too? I know I iced ever night for the first 3 months at least, maybe more. Plus I used a big pillow wedge and not just pillows as regular pillows were too easy for my legs to fall off of. I hope you can find a new surgeon to help you deal with the aftermath of the surgeon from hell.

 

[NightQuilter]

Dear BEG - I join with the others in alarm at the treatment you have received. Sadly, since you are in the Allentown area, I know no one around to refer you. My niece is a wonderful PT but is in Clarion. So, how are we going to make things better going forward?
As others have mentioned, gettting your swelling down seems to be the first order of business - both to reduce some of the pain and to give you some flexibility. Perhaps you could investigate finding a massage studio with someone who does gentle shiatsu - having them work from the ankle up through the hip. The lymph system has to be opened up so you can drain. Acupuncture from an orthopedic acupuncturist may also help. I took the elevate part of the mantra to an extreme (but it worked) - Got a good book, had a sip of nice wine, laid down flat on the couch and propped my new leg up against the wall - not just on pillows - and would read for hours on end (often lapsing into naps)!! The idea is not just to raise the knee, but to get it above your heart and let gravity do its thing. Before raising your leg, assist gravity by trying to massage your foot, ankle, then calf, then gently around the sides and back of the knee, then thigh, then elevate - just to get things circulating.
I would also ask your GP who s/he would use if s/he needed a TKR. Then see them for followup. You are not locked into a lifetime commitment with the assembly line non-doc. You are in a populous enough area where there should be ample choices.
Do let us know how you are doing!! We want you on the recovery road asap - you've had to deal with more than your share - time for a new you with a great new outlook in the new year!

 

[NightQuilter]

I missed that - HAPPY BIRTHDAY girl! One trick to stretch the meds - you can take Tylenol PM (if you aren't taking too much Tylenol during the day) or Advil PM at night to help with pain and sleep. I had a long talk with my OS's PA last Wednesday since I had had so much trouble with pain management on my 2nd knee this time. At least with some sleep, the future seems more manageable.

As for the good book idea - since you were with the Park Service, you've probably heard of Nevada Barr's series - her character is Anna Pigeon who is - ta da - with the Park Service and transfers around. There is always a good mystery or two she gets to solve along the way! Light reading, but engaging and escapist - and will, no doubt, return you mentally to some familiar climes!

 

[MombaBomba]

Happy Birthday, BrownEyedGirl! My heart goes out to you, you are bearing up under more pressure than anyone should have to endure. I admire your persistence and resourcefulness. I'm so glad that you have plans to contact a pain mgmt specialist Monday and push for the compassion you deserve! Big Hugs,

Momba

 

[bottomshollow]

Hope your birthday supper was good and that you are feeling much, much better knowing you have a lot of new friends who care about you.

 

[Shubbles]

Happy birthday to you! So sorry you are suffering on your special day.

You mentioned your kids and not wanting to burden them with your problems but if it were my mom and I found out later that she was suffering and being treated so poorly, I would be so mad at her for not telling me before hand! I would be on the phone with the doctor right now telling him where he can stick his practice and would not relent until he treated my mom with respect and compassion! Let your kids help you. You stood up for them when they were kids, let them do it for you.