Revision TKR PatientShark's complicated recovery

PatientShark

new member
Joined
Oct 23, 2019
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6
Age
54
Location
Oklahoma City
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I am new to this site. A childhood living with Chronic pain due to Musculoskeletal bilateral sub luxation of both patella since ( age 6 .) I have endured crippling dislocations throughout my childhood and numerous surgical procedures much like some on this forum.

My congenital issue may be one of a 'Cautionary Tale' though I regretfully must inform anyone reading this of the many (REVISION'S) that were required and learing to walk 9 times. My journey of 38 years of chronic pain and Sub luxation knee’s as a child trapped in braces, until adulthood! At the age of 17 to 20 I was challenged with my first of many (Failed Orthopedic Surgical Procedures Re Alignment of both patella's. Your whole life robbed of a normal pain free childhood and expectations of NEW KNEE"S at adulthood with promises of a NEW LIFE!

Maybe a ( Hinged TKR ) was more stable solution for those afflicted with Muscoskelatal deformities of the Patella's ! I have learned through my own personal journey of 'Chronic Crippling Pain' from a sub luxating joint! The regular (TKR) seem to never be stable enough; since so many failed TKR's on both legs! I was never given a choice of a Hinged TKR & was sold on the MakoPlasty; which is worse for recovery than a total knee replacement in my experience!

Presently after two failed MakoPlasty procedures and one failed TKR on left knee, I await another TKR hinged knee replacement 2020 if I can survive them ripping the other Right leg apart again for the 5th time! Right leg had failed TKR, cement failed and replaced 2016; both are so Mal-ligned that they both require (revision Hinged TKR.) I still am rehabilitating walking from my the last two TKR's 2017.
I fear it is about quality of Life anymore and warn others that some of us were meant to be unfixable and are wired since childhood to know suffering! I pray each of you have a support group & have not fallen victim to opioids? If I can suggest something I just discovered an online journal helps one keep your sanity and let your words empower you to be a voice for others too!

Maybe mine may help you? It is a rough draft of realism when it comes to spending half your life learning how to walk and the cruel joke is that in the end the result was a life of continued crippling suffering for myself! Medical retirement at 50 is frustrating and lonely!

Quality of Life is what you must VALUE and find comfort embracing your limitation and let the 'WORD' sustain you in times of great suffering!

My ' SPIDEY SENSE' found this site & maybe others who are going through similar things.
At Age 17 1st Reconstructive knee Surgery

(R) leg 1987 Re Alignment of Patella

(L) leg 1989 Re Alignment of Patella

April 19, 1995 injuries Dr Tkach/ St. Anthony’s sponsored surgical procedure for

(R) leg 1996 V.M.O Transfer

2011 Appendicitis/laparoscopy after care incident occurred result BLUE CODED & 6 day COMA

At age 43 Bone on Bone crippled and now reconstructive surgery required (umpteen Bone Spurs and 80CC drain from knee) both require surgical intervention . A childhood of Life living with metal cages around my legs and painful braces only wired myself to only know that Life with pain is normal.

(L) leg 2012 Makoplasty Partial Knee Replacement

(L) leg 2014 Makoplasty ‘ 1 st Revision Partial Knee Replacement ‘

(R) leg 2016 March Total knee Replacement

(L) leg 2016 August Total Knee Replacement ‘ 2 nd Revision due to Makoplasty revision failure ‘

(R) leg 2017 April Total knee replacement ‘ 1 st Revision 2nd Total knee replacement ‘

(R) 2017 Radio Frequency Abulation procedure!

Dr. Jacob scheduled both Knee Revision's again for 2020 (Hinged TKR)
Presently still learning to walk on my own, because the Hospital physical therapist gave up on me after 3 months! So the last two years due to the mal aligment, I truly never recovered from the last two TKR's.
Now I can hardly drive or walk and am 5'11 and 5'10 on legs and the suffering is grueling; since I refuse opioids the last 12 years. Well' even a 'cat has 9 lives' and this soldier is not sure I can fight the (9th & 10th Knee 'guessing game' Surgeries.)
The psychological trauma of thinking of being cut open again for 8 hours makes me ill & vertigo starts, which then heightens my agoraphobia and I shut the world out!
How and why does the and the FDA allows Surgeon's to get away with 'Breach of Duty" to one's patient 'quality of life' after surgery?
I keep my journal and xrays if this helps anyone can read. I do not do social media and no cell phone and only journal to help us all stay in the battle!
 
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Hi, PatientShark....welcome to BoneSmart. You'll notice that your first post here has been moved to a thread that is yours alone. This is because, when joining a forum like BoneSmart, it's usually best to start your own thread and introduce yourself before reaching out to other members. People need to be able to easily read about your history and situation and that's best done in your own thread. Detailed information about your surgeries in someone else's thread can tend to derail it. I hope you understand.
Going forward, it would be helpful for us if you could list all of your surgeries showing the knee (right or left) and what was done. Once we have those, we'll create a signature for you and be in a much better position to offer you advice, if needed.

I am sorry for all the challenges you've faced since you were a child. Life is not fair sometimes. But possibly we can help you have better outcomes now. No matter what, we'll be here to support whatever you're going through.
 
A childhood living with Chronic pain due to Musculoskeletal bilateral sub luxation of both patella

Hi, I've never met anyone who's had the same thing as me. I've had both my kneecaps sublux since I was about 7 or so. I'm 41 now, I had my LTKR done 2 months ago. I don't really know yet if I'm happy with it or not. I'm struggling to walk without a cane, whether that be my own fear, the still present problems with my right leg, or what... yeah I don't know.

I'm sorry you had to go through all that you've gone through. Life really isn't fair sometimes.
 
Welcome to Bonesmart! Will you please list your surgeries so we can add them to your signature? Having this available helps us all get to know you better and to hopefully the staff can advise you better.
Musculoskeletal bilateral sub luxation of both patella since
I had this also. My first extreme dislocation was when I was about 12. My parents just blew it off as having inherited this and was something I'd have to live with. I've had numerous surgeries on both knees and the kneecaps removed in the early 90s. My right TKR was in 2016. I am doing well! I'm holding off on the left as long as possible.

Please keep coming back and sharing your experiences with us.
 
@sondrals Thank you for your kind words!
You definitely are special, like a rare orchid : )
I, myself have never know anyone else with this problem and sometimes I felt like the lonliest person on the planet earth!
I guess if one is not into social media and such and their home has become their prison it can seem like early medical retirement is a bummer huh?
I should not be a Debbie downer..Lol
well' I figured I reach out and say you are now mah ' twinkie ' buddy''''' : )
I hope this finds you in good spirits and keep pushing to walk correctly too!

catchup soon again
Sincerely: Mariano
 
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Welcome to Bonesmart! Will you please list your surgeries so we can add them to your signature? Having this available helps us all get to know you better and to hopefully the staff can advise you better.
Musculoskeletal bilateral sub luxation of both patella since
I had this also. My first extreme dislocation was when I was about 12. My parents just blew it off as having inherited this and was something I'd have to live with. I've had numerous surgeries on both knees and the kneecaps removed in the early 90s. My right TKR was in 2016. I am doing well! I'm holding off on the left as long as possible.

Please keep coming back and sharing your experiences with us.

Howdy! Sure seems like we are all the same 'eggs in a basket' huh?
Well' i got the jist of getting my surgeries listed and noticed you had your patella removed.
I was told in 1999 by Dr. Faulkerson in Hartford CT. that a Patella transplant was a better solution; after all he is considered the 'Father' of orthopedics! I chose to wait and then in 2000 told that removal of both patella's was the now the solution by Dr. Riddick.
I chose to hold off again and endure the crippling pain and waited for TKR.
I only think about self preservation today and just discovered a ( Refomer for Pilates) that helps stay active; yes big fellas can do that yoga stuff, just got to find my box of crystals too.. Lol

hope to catchup again soon.
Hope this finds you in good spirits .....stay strong!
Your chronic pain management bud
 
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I had both kneecaps removed, one in 91 and the other in 93. At the same time I had lateral releases. Patellectormies relieved the kneecap pain and dislocations, but left me weaker than those with kneecaps. I still had deterioration of the joints and got my rtkr in 2016.

Again, please tell us the dates of your surgeries. This really helps us all relate and advise you better.
 
Here are some of my x-rays:
 

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@PatientShark .... you'll notice that I've modified your post above slightly as you had quoted your entire lengthy first post. It's not necessary for you to quote your own posts in your thread when you're adding additional information.

Thank you for the images you provided. Could you please give a short description of when each was taken and what you're intending to show with them?

I see that you added your surgery dates into your initial post and we'll get the necessary information into a signature for you shortly.
 
@PatientShark i felt the same way too. Even as a kid I had to be very careful and no one else did. I was horrified every time I fell.

I’ve had a rough week but hopefully things are on the upswing. Hope you are doing well and don’t feel quite so alone. It seems we’re not the only ones with these problems
 
@PatientShark
Is the same surgeon who did your previous surgeries going to do your revisions next year? With a complicated history like yours, you do need a surgeon who specializes in problem knees.

Have you had a second opinion from other surgeons as to the best way to treat your knees, including dealing with the mal-positioning of your patellae.
 
My PTSD from OKC bombing April 19, 1995 keeps my aggraphobia always heightened , when my pain is at the worst like today; sorry folks cuz I Think I jumped in before I could swim and feel overwhelmed, since I am confused how to update post and reply to individuals without re posting previous threads? SUNDAY I hope 2 reply
I wanna respond individually and let u all know I care and appreciate your kind words and help!
Today my 2 Dogs run off and it is too painful to drive to look anymore, I really think I can not put off these Hinged Knee revision's anymore. When pain takes your breath and the anguish makes simple task unbearable; I should prepare myself much sooner; my whole existence is learning how to walk again and again ....so 10th and 11th time in 2020. My present TKR in both knee's just turned two years old and were performed by two differnet surgeons!
Both TKR Hinged surgical procedures are scheduled with a Reconstructive Specialist Dr. Paul Jacob .

I hope by this evening or sunday I can read ' help ' on this site to 'edmucate' me on how to use social media blog or post words on here and at least have a voice; especially when you have nothing else!
BRB after clicking on the help & info......
 

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Easy does it for us feeling the bodies hurt, especially with the arrival of winter precipitation today!
Sure seems we all get sweaty feet and medications sometimes causes sweat more! I like to use the thickest socks made and NASA astronauts approved; they do not sweat I'm a fan of heat shield socks! Always orthopedic shoe wear too! I personally never trust those CPM caused dislocations after surgery for me, but your Physician is whom you should follow for recovery!
I have not taken pain pills/ opioids for pain management for the last 12 years now! Sometimes this is not the recommended path, since it may impair one's physical therapy and recovery.
I have only know dislocations from just walking on the uneven grass or riding a bicycle my whole childhood. I believe some folks are just wired to only know an existence with pain and this is the 'jedi' moment that can empower your 'will' to challenge the day's pain.
After 9 year in pain management prescribed 180 mg a day Oxycontin & a 75 mg fentanyl patch. I only discovered that living in a pill bottle was not for me and chose to 'live' a life, rather than just 'exist' in life over medicated; like a ghost in a shell! 12 years free of pain, I know all too well about giving into pain, which it can be an excuse to not step out that door! Myself I made it to a Gem & Mineral show this weekend and had hours of good times geeking out about rocks, chatting it up with folks brought a joy and healing; I have forgotten existed out there for 'all of us!'
Go get you some good medicine for the Heart & Soul and reach out to someone! Remember 'Medicine' comes in all forms of healing! Do not rush or run to find quick fix solutions
p.s. just invested in a reformer, broken bodies can do Pilates now too!
 
@PatientShark
Is the same surgeon who did your previous surgeries going to do your revisions next year? With a complicated history like yours, you do need a surgeon who specializes in problem knees.

Have you had a second opinion from other surgeons as to the best way to treat your knees, including dealing with the mal-positioning of your patellae.
Howdy! I figured this was easier for me to reply? Still think I click on thread quote to reply? Well' I know this will work for now?
My current Orthopedic Surgeon is Dr. Paul Jacob and has consulted with me for the last year. He has explained that He specializes in revisions repair. Dr. jacob has told me that He repairs many from my last two surgeons works; One of my surgeons He spoke of their patients having many infections and the other surgeon just a lot of revisions!
At age 50 I have spent half my life going through suregery and learning how to walk and feel It is too painful sometimes to put off the 2020 surgeries, but the risk factor may be too great this time; my 9 cat lives been used upo on my last 10 surgeries.
Appreciate your concerns and any sagely advice.
YOU ARE AWESOME!!

Sincerely: M.B

HI @PatientShark
I've copied your message from your PM to me, as it really belongs in your recovery thread.
Thank you for the more detailed explanation about your surgeons.

I'm glad you have a surgeon who specializes in revisions and problem knees.

To reply to a message, just go own to the bottom of the page and start typing in the box there.
 

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