Revision THR I'm back after a long time

[WestyII]

Hello Ladies and Gents,

I think I use to post under Westy or Wes. It's been over a year since I've been back here. First, I hope everyone is doing well. The last year has been kinda crazy with the pandemic and what not. To recap:

TLHR June 2019
Second surgery to attach a detached glutius medius (which got infected a short time after surgery)
Third Surgery Debridement, which got worse in no time
Forth Surgery= Explant with spacer install and 10 weeks total of pik line antibiotics
Fifth Surgery was a revision
All the above took place from June 2019 thru June 2020

Fast forward to present day. Last Sept. I had a steroid injection in the left hip which did nothing to help the constant discomfort I'm now living with. I had a second cortisone shot one week ago today. This time I had a bad reaction to it and it flared up and turned bright red, as well as expanding in size. I was worried about an infection so I contacted my surgeon Saturday. I sent him a pic and he said it looked suspicious. He Rx'd Cephalexin, 500 MG x4 per day. Since starting that the injection site looks better and the redness has faded somewhat. The pain is still there, but it doesn't seem any worse than it has been since the last surgery in June 2020.

I've been on low dose Norco 10/325 one or two per day as needed since June of 2020. I'm in a state of discomfort to flat out pain 24/7. I've been told by 4 docs, this is how it'll be for the rest of my life. The infection damaged a huge amount of muscle and surrounding tissue. The worst part for me is that I can no longer do normal exercise. The longest distance I've walked since 2020 is 6/10th's of a mile. My longest cardio workout has been 20 minutes, At that point, the pain becomes so great. I have to stop. I can no longer workout long enough to get my endorphins to kick in and help the pain. It's really hard on me, because pre surgery I was a cardio addict and could out do most guys half my age at anything cardio related.
In addition to the whole mess above, my right hip needs to be replaced now. It's pretty close to as bad as the left was, pre surgery.

I'm still not sure that the second steroid/cortisone injection won't end up as another infection. I'm taking it day by day. What I am 100% sure of is that I will never have another elective surgery again as long as I live. For me, the single worst decision I ever made in my life was having that left hip replacement surgery. I AM the 1% who experiences everything that can go wrong, and it did. I think my first surgeon who did the first 4 surgeries was a complete hack. He gets amazingly glowing reviews, but I now know 2 other people that have experienced the same result from this surgeon.(Bad infection) They are both smarter than I am, and moved to a different surgeon after his first screw up. Not me though, I stuck with him. The guy is a complete jerk to boot. Arrogant, know it all, and an ego the size of a tall building. I should have moved on, but hindsight is, well you know.

One of my first cousin's is a very successful malpractice attorney in Chicago. Top notch and brilliant. He's tried to convince me to bring a malpractice suit against the first surgeon at least a dozen times. As a guy who made his living as an independent trader in the trading pits in Chicago, I have a very solid philosophy about life. I like to think of it as being intellectually honest and true. That philosophy is "a card laid is a card played" There's no do overs, no second guessing, just real life as it happens. A deal is a deal, period. So there will never be a malpractice suit brought by me or on my behalf as long as I live.

I live each day now having accepted the fact that I'm physically screwed up until I get called home, whenever that might be. I hold no ill will towards that first surgeon. Like me, he's just a human being and as such, mistakes happen. This one cost me dearly, but life goes on. I have a handicap sticker in my car now. I can no longer enjoy most of the physical activities that I once did. That being said, I've learned to start each day fresh and make the very most of it that I can. I'm very blessed to have a great supportive wife, 4 great adult children, 5 awesome grandkids, and one 185 pound, 20 month old Brown Newfoundland with an attitude. LOLOL

I left the forum abruptly last time. The reason is that I no longer work from my office in the basement. That's where my PC is. I finally bought a Chromebook so here I am. I wanted to update the forum on my progress, or, LACK thereof. LOL I also wanted to offer some advice based on my poor results.

I'm not looking for pity, this situation is permanent and I'm okay with that. If this last cortisone injection does turn out to be an infection, I'll do what my docs tell me but there won't be another surgery. The definition of insanity is doing the same thing over and over again and expecting a different result. I'm not going down the road of revolving door surgeries. I'm almost 70, and I've had a great life. If the higher power determines that this is the end, I'm totally comfortable with that. I'm not writing in the forum to draw attention to myself. I'm writing this for one reason. I'd like every person who's scheduled for a hip replacement surgery to make sure you're 100% confident in your choice of surgeon. Get a second opinion, and do your due diligence. You're worth that extra time and effort. I failed to get a second opinion or do even 5 minutes of due diligence. That's 100% on me. I have now paid a huge price for not doing so. Also worth mentioning, I didn't like the first surgeon's mannerisms or attitude one bit on my first visit with him. Looking back now, that should have raised red flags from within. It didn't, I just assumed he was very good based on reviews. Ooops.

I wish each of you the very best. This forum was a life saver for me when I was in the middle of my surgical journey. The folks that participate here are generous and kind. They shared so much solid advice with me, I'm forever grateful. If this turns out to be nothing more than just a bad reaction to the injection, I'll be thrilled and grateful. If it doesn't and things get really rough, I'm good with my higher power and more importantly good with my family. Whatever comes next, I'm a grateful man who's been blessed.

Blessings to all of you, and thanks for all you did to help me through the roughest of times. If you're a prayer, I could use a few. I'd greatly appreciate that. If you're not, that's okay by me. I know for our family, prayer has always been comforting and usually very helpful.

John

Hope to be posting here again in a month or two.

I remember MOJO, what a great positive and encouraging lady. She helped me a ton too. Thanks again to each and every one of you.

One last comment, I pre read this prior to posting. It's not intended to be a dark or downer post, please don't take it that way. I'm a lucky, happy, and grateful guy, regardless of what may come next.

 

[patriciad]

Amazing post. Thank you for your update and so sorry that you have suffered so much. I have nothing to offer in the way of advice being a knee person except perhaps my prayers and hope that you will rejoin us on a more regular basis.

 

[Magsmom]

John
Good lord - you’ve been through the wringer. And I’m very sorry you’ve had such a horrible time. Thank you for sharing this with us.

I have a brief story to share with you. My oldest daughter had bone cancer at 16 ( in 1998) and was treated at Sloan Kettering in NYC. She had 8 mos of chemo along with a knee replacement (to remove the tumor) that also included replacing a good part of both her femur and tibia. The alternative was amputation of the leg. Osteosarcoma tends to show up in younger patients and often in the long bones. At the time, MSKCC was very focused on “limb salvage”. She survived, though there were days/weeks when we thought we’d be saying goodbye. Gutwrenching. Some of the kids she was friends with in the pediatric ward didn’t make it. And boy, even though I’m not a crier by nature, I’ve never cried that hard.

But she was tough and weathered it w a kind of strength I wish I had. And even graduated high school on time with her friends. She has been cancer free ever since.

Ten years later she “outgrew” the first prosthetic and needed a revision. During the surgery, her patella tendon ruptured. Negligence? Who knows. They had to cut part of her calf muscle and graft it to “replace” the ruptured tendon. A real s@$* show. Her leg looked like it had been put through a meat grinder.

THEN, in 2018 we learned after a number of months (too long a story to share here) that her 2nd prosthetic was infected. We got her to the head of the team at Hospital for Special Surgery in NY who handles their most complicated revision surgeries. He had a plan very similar to what you went through - infected prosthetic removed, an antibiotic spacer inserted, pik line antibiotics daily for 6-7 weeks. Then the new knee was to go in. But this time, amputation was a much likelier outcome if this didn’t work. It was long and grinding but she got through it AND kept her leg. Her mobility is ok though admittedly, not great. But she is totally self sufficient and now has a great job w a pharma company as a patient support rep helping patients get their drugs for……..cancer!

We are forever grateful to her surgeon, his team and the staff at HSS. The place is incredible. They only do orthopedic work and they’re the best at what they do.

I’ve had at least 10 orthopedic procedures in 3 yrs there including 2 THR, 1 TKR and a spinal decompression/fusion. Betw my daughter and me, we laugh that they will be naming a wing after us soon.

My point in sharing this with you is to see if you’d be willing to get another opinion on your situation. I just feel in my heart that your journey is not done yet. In the darkest of moments we thought all was lost …..but found someone who took her case on because it’s what he and his team specialize in. I see in reading your post that you seem settled in your decision. But I can’t help but ask if you’d please consider seeing someone on that team at HSS. I can easily refer you to a couple of surgeons. I trust them with my life (and have…..10 times!) It would involve travel to NYC though they now have outposts in CT and Florida. But there’s a hotel not far from the hospital that is pretty reasonably priced. HSS patients travel there from all over the globe just to get the best orthopedic care they can.

Feel free to PM me if you’d like more detail, names etc.
I will be thinking of you and sending all good karma your way!!

 

[clodaghcov]

I am so sad to read your update we followed each other pretty most of the way through and i so hoped you were doing well. Really my pattern is very similar to yours, i am trying to live with the infection,my hip has been in again from April.but had a torrid time with 3 hips in 6 weeks. Anyway like you i am on Cypro 750 bd and Flucovozole 600 od. The pain never really goes away i think we just find a way of coping. Like you i know mine is lifetime and will be up and down,at the moment it is discharging again and i know eventually they will want to put another spacer in. Infections really are the surgeon and patients worst enemy. Life is full with dogs and family and i really do it all,but some days its extra hard. Anyway thinking of you Carolynx

 

[Klassy]

@WestyII , I am in awe of your positive attitude after the terrible time you have been through. You are strong and wise to focus on the good things you have had and those you still have, not waste your life in blame and bitterness. And it is generous to think of what others can learn from your experience.

I love that you feel grateful no matter what. But I can’t help hoping that something will finally go right for you and you will see improvements.

PS and the same to @clodaghcov . My heart goes out to you both.

 

[CricketHip]

Hi @WestyII and it’s good to see you back. But am so sorry to read about your ongoing, extremely frustrating and painful events.

Please keep us posted with what’s going on, and maybe a new consult with a surgeon from the HSS would indeed be helpful.

 

[Elf1]

@WestyII good to see you back but so sorry for the reason. You have such a wonderful, uplifting attitude. You can definitely be an inspiration to others going through tough times. I realize you don't want another elective surgery but wondering if having a consult with a surgeon at HSS could give you some other options. Will keep you in my thoughts and prayers, sending you healing mojo, fingers crossed it's just a bad reaction to the injection.

 

[Jamie]

@Magsmom....please post the surgeon information you have for the doctors that helped your family on this thread. That type of information is so helpful not only for John, but others who might come along and read it. Plus....I keep that type of information in an administrative list so that Jaycey and I can make recommendations to members who need help. I will add your surgeons and a note about what they did to my list.

Thank you for wanting to share this critical information.

 

[Magsmom]

Hi Jamie
Happy to share this info!

Complex Joint Reconstruction Center at HSS

This link takes you to the info about what this complex case team does. Under the Meet the Team tab are all the various surgeons who participate and their contact info. The two I know the best are:

Dr Mathias Bostrom ( treated my daughter)

Dr Peter Sculco ( he replaced both of my hips) Dr S is the son of Peter Sculco (also on the list) who founded the center with $$ raised from a rich Greek shipping magnate.

I would recommend either of Sculco or Bostrom without hesitation. Everyone on the team is super special. They are all listed in the link above. Two names that were also passed on to me as possibilities to do my hips were David Mayman and Seth Jerabek. I have been so happy with Dr Sculco. He’s a very good listener. When you talk with him he makes you feel like there is nowhere else he would rather be than talking with you and emphasizes that you both are partners in treating your problem. I almost fell over on my first visit when he emphasized how important it is that we agree on the game plan since we’re a team. It made me feel confident and secure in what was being done. He does both primary and revision work.

Dr Bostrom is incredibly talented and gave us hope for our daughter when we thought the future was so bleak for her. It was long, difficult and draining. But he never wavered in his confidence to be able to help her. The added bonus are his two PAs Katie and Nadia. They are spectacular.

I hope this info is helpful. I’m happy to talk w anyone offline about this if needed or just to answer any questions. My experience has been amazing as I’ve essentially been successfully “remanufactured” there!
(Btw, I also have an amazing spine surgeon should anyone ever need a referral).

And like I said earlier, it’s worth the trip if someone doesn’t live in NYC. They will work to coordinate things to make a visit as efficient as possible (extra tests, mri’s etc). And there is a hotel nearby that, by NY standards, is reasonably priced and within easy walking distance.

 

[Izabel]

I AM the 1% who experiences everything that can go wrong, and it did.

Hello John and I am sorry to read of all the issues you have encountered. I remember you from first time around.

All of my problems occurred in a short period and the last three ops were within one year. Because of an automobile accident on the way to the pre-ops I had four fractures in my hip that prevented me from walking/exercising after my knee replacement, then months later I got the infection and spacer installed. It is 4 1/2 years since my journey began. Last year I developed Tinnitus which put my balance off and then Drop Hip which I am currently dealing with.

I fortunately have no pain in my hip and just a little tightness in my knee which is tolerable. I exercise daily and walk 1000 steps a day ... in increments as I cannot do it in one go. Currently I am using a walker/arm crutch but am determined that I will succeed before I reach five years.

John, you can face and conquer this and find you way out of the tunnel.

@Magsmom What a terrible journey both you and your daughter have been but you continue to bravely face the challenges thrown at you.

@clodaghcov Oh my dear friend. It is never ending for you and my heart goes out to you.

Izzy xx

 

[Jaycey]

@Magsmom Thanks for posting the surgeons information. Most are already on our recommended list. But it's good to get further confirmation on the experts.

@WestyII I do hope you can find the right person to get you to a better place. Don't give up! Sometimes these issues just take stubborn persistence!

 

[Mojo333]

@WestyII aka Westy!

I was sure it was you when I saw your username.
I bet Tank is a big ole boy now!

I was happy to see you on the forum but was hoping you made it through your hip journey and back to life with no hip issues.
I was really sad to see you have had ongoing issues.

If this turns out to be nothing more than just a bad reaction to the injection, I'll be thrilled and grateful.

I certainly hope this is the case and I'm sending up prayers for this outcome.

 

[Caison113]

Wow -- what an unfortunate turn of events. None of us are surgeons (well maybe a few are), and everyone reacts differently as you note, but it sure does seem like your surgeon screwed up somewhere along the line. It's always hardest to recognize our own faults, and maybe he just kept telling himself he did nothing wrong or he could fix it, when it was beyond his skill. Your attitude is commendable however, and wish you nothing but the best. I will shut up whenever I want to complain about some minor aches or pains!

 

[Eman85]

I remember your original posts, sorry to hear you're having problems still. Your post is a good one and your point about taking the time and effort to find the OS they are 100% confident in can't be over stressed. I've walked out of Dr.'s offices and actually been asked to leave before. I hope things work out for you and I fully understand the reluctance to have any procedures.

 

[Autumn01]

Westyll it sounds a rather bad nightmare you are caught up in.

i was wondering what you are doing from your side to rev up your immune system and help fight infections.

i would be throwing any food and vitamin that helps into my mouth. At least it would make me feel as if I was a party to the fight and not just some victim to it all.

I would cut out all sugar and starches from your diet and add Vit C in large doses, like 3000mg every 3-4 hrs. Anti oxidants and vit D if you are in area that is devoid of sun in winter.

and include some solfeggio or binaural beats to listen to, it may help. Especially 528 hz.

your system is being overrun with microbes. It needs help. So do you. There are other ways to improve your mood. Try anything and everything. Why not?

i also wanted to add that swimming and other exercises also kicks in endorphins.

 

[Hippielife]

Just want to add…“No matter how frustrating or difficult the task never give up,our future is worth a good fight.“
Quote by Winston Churchill.

I hope that this post is accepted with positivity, encouragement and the heartfelt expression in which it is intended.

Sometimes when we (hip patients) suffer harm from implants that is when we need to become our own advocates.

Our medical and health system has a no fault rule when it comes to financing revisions.I had 6 years of Constant Refusal from many surgeons to find the cause of my pain after hip surgery.These surgeons can be ridiculously stubborn even when knowing of all the complications surrounding implants. After check ups it was see you in 6 months because X-rays, MRI’s are good. Not everything always shows up on testing.

During 6 years of suffering while researching hip implants on the many issues involved we are never told of the risks. Or how inappropriate implant components are approved by the FDA. I started to look up info on the internet. There is a wealth of info on studies, very little is due to the risks from components. Most are GENERALLY due to the skill set of the surgeon or new unproven techniques, lack of experience of the surgeon and the OP team.

It is paramount that we do not give up, hips can be revised and many of us can move on to a better quality of life. In my humble opinion there needs to be a special protocol for those who suffer harm from surgery.

Become own advocates. Understand some surgeons do not have enough quality time actually performing hip surgeries on their own and there are no prerequisites in place for surgeons to prove they are qualified before operating. A huge number of joint replacement centers have been popping up everywhere and these centers have included hip replacement in their practice along with other orthopedic treatments. This does not mean they are well versed or skilled in hip surgery procedures or have a good OP team.Not even if a hospital authorizes surgeons to operate in their hospitals does that mean they are well trained or have performed enough hip procedures to establish the skill set appropriate for successful hip surgeries.Yet we believe in the system because surgeons have ortho practices and operate in hospitals then we assume they must have good solid experiences to perform hip replacement surgeries. This is not always the case today.

I am here to tell any hip patient recovering from complications that there is hope and there is a solution. Keep pushing for answers and a good outcome. We all are told hip implants are the best option for a better quality of life and a future with mobility. That is exactly what we all expect and deserve. This procedure has been around since the 1960’s.A lot of improvement since then,and many new ideas by surgeons that have not been proven by the long term successful standards of years through medical studies, yet they are performed.

In the beginning I had lost hope I had a hip done 11 years prior and this made no sense to me . I was back in a wheelchair 3 years after hip surgery, and constantly told everything is fine while all along my hip implant was deteriorating.

We all can find resolution and find peace even if we sometimes just need to take a break. It is exhausting. In the last few years there has been a lot of improvement with the follow up on patients. It’s moving slowly but in the right direction. I know we all can rise up and get past any complication and move on to a successful hip replacement . It is in all of our futures.

 

[Harryn1]

@WestyII I also have been absent from this forum for quite a while, and just popped in to find your post, which I find very distressing. i do remember your posts through the surgical journey. Anyway, your attitude and philosophy to what you have and are going through, are beyond admirable- you’re obviously made of special stuff. Much respect! That said, your surgeon sounds to me like he should indeed be a defendant. He is the unapologetic author of your horrific story. So I am with your cousin on that one.

@Magsmom I read your story too with incredulity, empathy and much admiration. Your daughter sounds absolutely amazing, and so do you. I cannot begin to imagine what your family have been through. They should not name the wing for you, they should rename the whole damn hospital. We lost our 14 year old son to leukaemia 9 years ago, joining the worst parent club in the world. I have some idea of what it takes outta you to parent a sick child. So, your story strikes a chord with me on many levels.

Next time I get upset off about a little twinge of pain, I will think about both @WestyII and @Magsmom and take heed of how to face adversity. I guess its about growing a pair.

 

[gofngal]

Westy, I am so sorry you have had so many problems, and I am a person that prays so you will be in my prayers..I'm on my 5th month of partial hip replacement after an accident did nt hav a choice of surgeons as it was a friday night, I'm 80, I didn't expect problems, but I have a few, I'm wont complain after the problems you've had. God be with you and make you well.