Revision TKR Never give up, keep trying, don't settle - that's me, Bonnie

[Pumpkin]

Skigirl,
That is an extensive list, and will give Bonnie a good place to start looking at her options.

 

[RunA42K]

Today was the Houston Marathon and 1/2 marathon. The marathon that I ran 13 times pre TKR and the 1/2 marathon 1 time post TKR. The past two years I volunteered and worked at the finish line. This time I volunteered with beginning set up on Thursday, worked in the runners EXPO on Friday and Saturday and was 'supposed' to be volunteering out on the finish line today (Sunday). Besides being exhausted from Thursday, Fri, and Sat...I just could not bring myself to work the finish line again. It just makes me so darn sad that I am not able to run any longer. I was supposed to be walking the 1/2 marathon today but I didn't recover enough from my total knee revision 13 months ago :-(

So, I couldn't just stay home today and go about my life, as this marathon has been a part of my life for so long. So I drove into town this morning with the mission of being at mile 22 to cheer and support the runners who need it the most after making it to 22 miles with 4.2 left to go. My bestie running buddy Tricia met me there (she was not running this year) and together we wore our 2010 finishers shirts, cheered and encouraged the runners, we handed out bananas, small bottles of water and orange slices. The runners were most grateful and it did my heart good. It was a very bittersweet but rewarding day for me today.

So this afternoon I did register once again for the 2016 event and hopefully I'll be able to participate. If for some reason I cant, I'll do again what I did today...go back to mile 22 and support those who need it the most. Never give up, always keep trying...don't settle! That's me, Bonnie!

 

[Jamie]

Bonnie, would you consider traveling to see any of the people on Kelly's list? You might be able to chat with some of them online first to see if they felt they could help you.

 

[Nana moon 27]

Hi @RunA42K

Dear Bonnie, I so feel for you when you say about it being a bittersweet day. It must have been lovely for the runners to see you in your Finishers shirts as they would know that you knew it was very challenging. I think you were both so good and you so brave to do what you did xxx

I visited the lake last year where I used to fly fish. Oh it was bittersweet. I knew in my head maybe one day soon. Maybe this year even. We will see. It's lovely to hear from you. Please take care.

All my love Ann xxx

 

[RunA42K]

Bonnie, would you consider traveling to see any of the people on Kelly's list? You might be able to chat with some of them online first to see if they felt they could help you.

Jamie, unfortunately I'm not getting much support at home on this. I figured I just have to wait and see if my knee becomes painful and non functional like the first knee that was filled with scar tissue then someone will have to take me seriously. When I worked at the marathon Expo on Friday my surgeons PA was there, she came and found me (she is a marathon runner). She no longer works for my surgeon, she has moved on with another doctor. She said of my surgeon that he was NOT empathetic at all, but rather egotistical. She suggested that I go see the doc again who scoped out my scar tissue the first time. Going on to say that he was very empathetic and would tell me the truth. I think right now I am playing the waiting game and arming myself with information for when I am ready to use it.

 

[Jamie]

That sounds like a workable plan, Bonnie. I'm glad you're not giving up!!! I say NEVER, EVER give up.....

I love what you did at the races. I'm like NanaMoon....I think the runners you helped along the way probably looked at your presence as a huge mental boost. You have so much to give to those who are following the sport you love. And you don't have to stop loving it just because you can't participate right now. It is great to see that you are still letting your passion for it shine through.

 

[Celle]

A bittersweet day for you, Bonnie, as you said. But you went and you helped people - you didn't stay home and mope. Kudos to you for that!

I truly hope that, when the time is right, you will find someone who can help your knees.

 

[skigirl]

Bonnie, I remember so vividly the time I did not Start with my soccer team---I cried. I was 46. I sat there and asked myself---did I love the game or did I love being the best? I have to admit that for that day, I wanted to be the starting midfielder.

I did find out that I loved the game, however, and went on to coach and to play as a sub for my team. Running is so hard on your body, but those who love it never give up. I think you made a good decision to do something positive instead of feeling bad at the finish line.

I wonder if the last doc did put too big of a spacer in your knee---I think I would have that checked out. A once inch discrepancy does not sound "within normal limits" to me at all. But lots of folks on the hip side do deal with this issue.

My friend in ski school took the metal allergy test and is now convinced that she needs an Oxinium knee from Smith and Nephew---she also has had a revision. But she is having difficulty finding a surgeon who will consider doing it. And, finally, yes, it is common for adhesions to scar around the knee cap and cause tracking problems. Sometimes, the patella drops down a little bit---called patella baja.

 

[shelli22]

All I can say is 'wow'. Bonnie I have spent the last three nights reading ALL of your thread. I have cried, laughed, been frustrated, scared, angry, in awe, envious - a myriad of emotions reading this powerful story of one woman's strength and determination in the face of adversity, loss, gain, fear, anticipation, hope.....honestly I haven't done anything other than glue myself to my iPad or iPhone screen (while either one or the other recharges) in anticipation of the next chapter of your narrative of your journey to recovery to regain the quality of life you once knew. I admire your fortitude, courage, caring,compassion.


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[RunA42K]

All I can say is 'wow'. Bonnie I have spent the last three nights reading ALL of your thread. I have cried, laughed, been frustrated, scared, angry, in awe, envious - a myriad of emotions reading this powerful story of one woman's strength and determination in the face of adversity, loss, gain, fear, anticipation, hope.....honestly I haven't done anything other than glue myself to my iPad or iPhone screen (while either one or the other recharges) in anticipation of the next chapter of your narrative of your journey to recovery to regain the quality of life you once knew. I admire your fortitude, courage, caring,compassion.


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All I can say is WOW @shell! Thank you for the nice complement and WOW you actually read all of my thread!!

Funny, I was planning on getting on my thread tonight thinking that probably there were no comments or replies, as I have been around a long time and am kinda old news, but I am always in search of answers and always have questions to ask.

Tonight I just wanted to ask anyone...Can being in pain wear you down and make you feel tired and exhausted? I feel like even though I'll get 8 hours of sleep a night, I am always tired and feel drained. My back has been hurting me A LOT! Last week my 3 visits to Physical Therapy were for my back not my knee, it must be my new orthotic, maybe just slightly too high this time where as before it was too low. I am told that whatever the height my body has to adjust to it so to give it some time. How much time? Thursday of this week will be 3 weeks. While my back has improved over last week, it still hurts and I do have a small ache in my hip.

So my revision knee is swollen as always, still hurting and is stiff, I have that horrible metal clamp feeling squeezing me. I almost feel like it is burning inside. Something positive tonight, my husband said, "When is your two months up?" Remember I told before that my surgeon said to come back in two months and let them know how I am doing. Well my two months would be February 17. My husband said make an appointment to go see him at the two month mark and if he dismisses me again to make an appointment with Dr. Lintner who removed my scar tissue the first time. I think I mentioned that when I saw the PA at the marathon Expo she suggested that I go see Dr. Lintner again. My bend is for the most part at 90 degrees. My husband got to witness me trying to walk down a flight of stairs yesterday...he told me to hold the hand rail going up and down as he could see how I struggled just to do stairs...nearly 14 months post op.

I remembered today that when I saw my surgeon on December 17, when he said, "What do you want me to do?" He also told me in a condescending tone that, "Scar tissue does not hurt." Well, I say maybe the tissue itself does not hurt, but what it does to the surrounding tissue, ligaments and tendons, strangling them does hurt!

 

[Jamie]

I have been around a long time and am kinda old news

Bonnie....you will never, EVER be "old news"!!! Your story and your spirit are always relevant. And your courage to keep searching for answers really does help others who are facing challenges.

Can being in pain wear you down and make you feel tired and exhausted?

Absolutely!! Pain can make a person tired, irritable, depressed and probably even more things that I've not thought to mention. It wears on you over time.

My husband said make an appointment to go see him at the two month mark and if he dismisses me again to make an appointment with Dr. Lintner who removed my scar tissue the first time.

I agree with hubby! I know it's difficult to keep beating the drum for yourself, but you must. There is someone out there who will be able to help you. Never stop believing and fighting for that.

He also told me in a condescending tone that, "Scar tissue does not hurt." Well, I say maybe the tissue itself does not hurt, but what it does to the surrounding tissue, ligaments and tendons, strangling them does hurt!

Ha! You're smarter than the doc then. What a silly thing for him to say.

Please let us know how that meeting goes. I'll be waiting to hear from you! ((((HUGS))))

 

[Pumpkin]

Bonnie,
Sorry to hear of your continuing troubles, and lack of empathy from your surgeon. I think you have a good plan to move forward with the next appointment, then going back to the OS who removed your painful scar tissue.
I have found that pain wears you down, is depressing, steals your energy, and enjoyment of life.
Sending you positive thoughts and prayers,

 

[Celle]

I agree with Jamie and Pumpkln (and your husband).

 

[busylizzie]

I so agree also. Living for any length of time in pain certainly zaps you. In my case alters my personality. It has burst my bubble. I used to be an outgoing person and wasn't phased by anything life threw at me. It is as though I have lost my sparkle. But we must perservere and get our old selves back. I believe it may be possible provided we continue to fight against it. I hope you can continue the fight using your inner strength and get some answers and solutions and come out the other side smiling being the person you used to be. OK your marathon running days are over but there will be other challenging exciting things to take its place.

Take care and keep looking and fighting for a solution.

 

[shelli22]

Bonnie. I have only been in pain for almost two years and I'm tired, depressed and feel like life is passing me by. Our knees affect the rest of our bodies. It's only through reading 'stories' like yours, listening to others and seeing there is always another option as you have done throughout the last four years that we become motivated as we realise there is always hope. You have never given up. You have the option now to see your OS in a couple of weeks. If that proves unsuccessful then you have the option to see the other one re scar tissue. I'd be making that appointment because.......that's how you roll!!!!!! Again WOW. You're amazing!!


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[RunA42K]

I have an appointment next Thursday the 12th with my Posiatrist as I have concluded that my new orthotic is a bit too high. I've had so much back and hip pain since mid January. I've stopped wearing it, and am wearing my 1/2 inch orthotic again along with a temporary pad about 1/4 inch underneath it. It seems to be helping.

I have an appointment on March 4th with the doctor who surgically removed my scar tissue from my TKR knee in 2013. I've gotten to where my entire right leg (TKR leg) is aching now, hamstring, quad, all the way down into my calf. This doctor said he had never seen anything like the amount of scar tissue he removed from me. I hope he can help me again.

When I called for an appointment the office asked me, "don't you think you should go see Dr. Incavo (my revision surgeon) first?" I said my I saw him September, November, and December, that I wanted Dr. Lintner's opinion because he helped me before and understood that I was growing massive scar tissue after my first TKR. They put me on hold a long, long time, but finally came back and offered me an appointment time. If he is not willing to help me, I have another doctor I will see next. I'm not giving up on trying to improve my quality of life!!

 

[Pumpkin]

Bonnie,
Glad to hear you are moving forward with the surgeon who removed your scar tissue. Good luck with the podiatrist, and getting the leg length right.
You will get there,

 

[Jamie]

Good for you, Bonnie! I'll be with you in spirit and hope you have a good meeting with the doctor.

 

[Celle]

Good for you, Bonnie! It sure takes persistence to get what you need.

 

[DogLoverx3]

Good for you Bonnie! I'll keep good thoughts for your appointment. I well know the frustration of just wanting an answer and trying to get someone to believe/understand/help with what is going on. You know your own body and know that something isn't right. All it takes is for ONE 'expert' to take the initiative to investigate further. I hope he's the one to do this for you! You certainly deserve some good news. Please be sure to let us know how it goes!