Hi Folks
I don’t know where to start, really, so I think the best thing to do is just throw out all the facts. This post serves two purposes â€" one informative, two, if anyone can offer some advice. I’ve searched the search engine but not much came up â€" I think two people but not like my case.
There is an infection brewing in my hip and no one can figure out where it came from or what exactly it could be â€" maybe cellulitis, a form of MRSA, Erysipelas, no concrete diagnosis. I am scheduled for surgery this Friday to go in, survey the damage and wash out my hip. At the time of symptoms, I was 4 months out from RBHR.
As of two weeks ago, while in PT, I noticed redness developing around my incision area. The PT confirmed that she felt a little swelling at the site. That was enough for me to cancel all future visits, gave it a day to possibly calm down and watched it closely. By Wednesday the redness grew encircling the scar area and I immediately went to my Primary Care Physician. In the meantime, I put a call into my surgeon. My Primary did not like what he saw and blood work was started â€" everything was off either way up or down â€" especially my platelets â€" high, WBC slightly elevated, hemoglobin and hematocrit low, few other things off. He put me on antibiotics right away and set me up to see a hematologist the next day. At the same time, I sent pictures to my surgeon/PA for evaluation. I was scheduled to get into the office the following week. Once with my surgeon, he evaluated the redness around scar, it was tender but not painful, there was swelling. But, I have no pain in the joint, ROM good, no restrictions, no fever, no fatigue, I feel good â€" normal, but all indicators were suggesting something else. He set up an MRI â€" and for hip resurfacing it’s a special MRI called a Mavric imaging â€" done at only two hospitals â€" HSS, NYC, and somewhere in California. More blood work confirmed high Sedimentation Rate and C - reactive protein. Iron Serum and Saturation also very low.
MRI was done late Friday afternoon, results back early Monday morning â€" they must have put a rush on it. Fluid was seen around the tissues and pretty close to my hip. They won’t know extent of damage until he goes in. Dr. Su, my surgeon, my Primary, Hematologist and I are perplexed due to lack of symptoms and pain. Source of origin is unknown. I have not been sick, no infections. I did have a setback in December but they were muscles/soft tissue issues that I was working through with PT.
The incision area is irritating but everything else feels normal. I feel I am walking fine with no pain. I like my new hip! This makes no sense to me and undoubtedly I am upset.
How can everything be so off yet I feel so fine! I suppose all will be explained on Friday! Any insight would be appreciated, however, couldn’t find anything close to this on the site!
Thanks everyone for any help you can offer or for just listening...
Keepmovin
I am really sorry to hear that! Hopefully it's an infection that can be overcome without compromising the device.
You're in great hands, and I hope you caught this early enough. My hopes and prayers are with you, to keep the resurfacing.
Keep us posted, and I wish you the best of luck.
I am sure you will keep your hip. think positive! this will help you a lot.
they will find the reason, maybe drain the liquid and then the inflammation needs time to heal.
Good luck lets hope they can find what out what it is and find the right antibiotics to wipre it out.
It must be really stressful not knowing what is causing the inflammation, especially when none of the Dr's you've seen have an explanation. Hang in there, and keep us posted as you go through with this.
Infections can be cured, sometimes it takes a good cleanout and lots of antibiotics sometimes the implant has to be removed.
Sometimes an infection begins during surgery and it stays almost dormant.
I am surprised that it happened at the HSS as they have a good record with infections and Dr. Su is usually a given that you get a great result.
We have one guy who went through this, his name is Spencer, perhaps he will contribute to this thread.
Chuck
Hey Keepmovin,
Very sorry to hear about your infection. I have been in your shoes and understand how you must feel. Had my hip washed out, six weeks on IV antibiotics. I'm happy to be whatever support you'd like. If you want you can email me at:
coachspencer77@gmail.com
I'll pm you my phone number in case you want to talk.
spencer
Thanks Spencer
Thanks everyone for your kind thoughts. I got bumped up to surgery on Thursday not Friday so there's lots to do.
Heading into the city tonight to stay with my daughter overnight for early morning preop - can't believe I have to go through that again!
Thursday surgery scheduled for 3pm. Dr. Su has been very good about this, calling me all the time, and I do have a pretty good Primary who's been on top of this as well.
Spencer, I did read your whole story - the only one I could find - such a long time ago, 2008! If I get a moment, I will reach out to you.
I feel alone because this just doesn't or shouldn't happen. I really don't think it was from the surgery - something else happened or is going on. The really perplexing thing about all this is...I feel good! The hip is working, even my back issues have improved! But my blood levels say otherwise!
Will stay posted...
Debbie
Debbie,
I will thinking of you on Thursday and sending a prayer that the Dr's will find out what is going on. From what I've read, Dr. Su is one of the best and I'm sure he'll be reaching out to other specialists if need be.
Deb
Debbie,
Best of luck. I know you have a lot of cheerleaders on this site.
I will certainly be thinking of you.
Beth
Debbie,
I am praying that all goes well for you and that the HR is still good. It could be an isolated infected encapsulated area and hopefully has not gotten into the hip capsule. Orthopedic infections are very serious and that is why most surgeons and Hospitals take such strict precautions with Ortho surgeries (think the space suit type OR garb versus just gowns and masks. Unfortunately post op infections still occur.
Please keep us posted as try to keep that great attitude!
Juno
Stay strong Debbie, you will be in good hands.
moe
It's difficult but now you can only try to stay positive and trust the medical staff, they will do their best to find the root cause and provide the most appropriate treatment.
I hope everything goes well for you!
this morning I read an article in a German journal about Bursitis. the description of your symptoms and the findings are equal to the description there. if it is a bursitis the inflammation is not caused by a virus, mostly they come from "over use" of a joint. for example: if you play tennis very hard, you can get it in your elbow or shoulder; if you use the computer mouse all day, you can feel it in your wrist.
I hope everything comes out fine for you! my best wishes!!!!!!!!!!!!!!!!
Dear Debbie!
how do you do? I hope you are fine.
what did they find?
Hi folks,
Thought I'd give you all my update. Today is MOnday and I am still in the hospital. Surgery was Thursday afternoon and the wash out and debridgement went well. Dr, Su said he did an aggressive wash out , he had to detach my hip to get in to do a really thorough job, Unfortunately, infection reached the hip but at this time, we are not talking revision or removal.
cultures were sent to lab to see what grows out of it-so far, nothing. I was on antibiotics before surgery so that could be the reason-they will hold the culture for two weeks to see if its a slow grower, Tomorrow would be day 5, which is the reasonable time they would make the decision what antibiotic to put me on-if nothing Grows, I would go home with broadspectrum antibiotics.
My positive thought goes like this: if nothing grows, maybe the oral antibiotics taken before surgery did the trick and it will not return. If it does grow a week later, then that would indicate a slow growing bacteria and this would not be good.
I was not in pain before surgery nor was I sick, walked fine, good ROM-- all this good but baffles all the Drs.
Sitting in this hospital is maddening, and there have been times when I've not bee a good patient-weekend stays are the worst. I want to walk more than they have amble staff. So I complained....today they are more attentive.
Don't get me wrong....great hospital, wouldn't want to be any place else. Dr. Su is right on top of this but everyone is frustrated with this.
Waiting for ID Dr advice and will update you then.
Thankyou all for your support! Just wish we had a definitive answer to this.
Debbie :-[
It sounds like progress (in my uneducated medical mind), hopefully it's either identified or done with due to previous treatment.
Again hoping good things for you...
I guess being unique isn't always a good thing :(
Keeping my fingers crossed for you, let's hope we'll get some good news soon.
Hang in there Debbie. Patience.
moe
Debbie,
Thank-you for updating us on your status. The 3 days I was in the hospital almost drove me over the edge. I can't imagine what all you're going through right now. We are all pulling for you and can't wait to hear the good news that you'll be homeward bound!
deb
I am home! I was discharged last minute early Monday afternoon. I was pleasantly surprised because the last I heard they wanted to keep me until day five to see if anything grew from the cultures. Like you Deb, the extended hospital stay was driving me nuts and they knew it! I was getting up on my own, walking around without aid from the nurses and you just can't do that! I felt like that naughty child no one could control! Even though my room was nice - private with a little view of the East River, I felt caged! I don't know why they put me in a private room--the only thing I could think of was to isolate me do to this infection that they couldn't identify. However, the final word came from the Infectious Disease Dr. and he felt I would do better at home at this point.
There is still no growth from the cultures, which makes everyone uncomfortable - there are still more questions than answers to this case.
Since it wasn't planned, coordinating the release out of the hospital was a bit tricky! I have a pic line which I will have for the next 6 weeks so the antibiotics had to be ordered and sent over to the hospital within a couple of hours, all the Drs had to be located to sign me out, paperwork had to be completed, home care/case management had to interview me to get that going, and the most important, how was I getting home! My husband had to realign his day at work to drive in to pick me up. Somehow it got done and I was home by 6:30pm. A nurse was there by 7pm to show me how to work the IV pic line and administer my own medication. We had to rework the time schedule so I didn't have to get up in the middle of the night.
I guess now we just wait and see if I can knock this out and be done with it. It's still a heavy weight to carry since we all know the hip was affected by this. The fact that I felt great, no fevers, had no symptoms other than the redness around the incision, was walking pain free is what gives me hope.
So now we wait two weeks or another week at this point to see if anything develops with the culture. In the meantime, I have some catching up to do in finding out all you all are doing! Spencer, I may be emailing you with a few other questions I have since you have been through this.
Staying positive and Keepmovin :)
Debbie
Cautiously happy for you, keep your chin up. Hopefully everything is cleared out and you can keep movin'
Hey Deb,
Glad you are home. I know how hard this is for you. Please email or call anytime, I will be glad to offer all the support you'd like.
Spencer
Great news that you are finally back home! Even tho you are not totally out of the woods, at least your surroundings are familiar.
We'll all be waiting to hear the good news when they figure this all out!
deb
Glad you're back home, let the medical staff to take the right decisions, from your posts it's clear they are very committed to get you fixed. The wait for definite results must be hard but try to stay strong and positive.
Sorry to hear about your recent medical complications. Seems strange that an infection showed up four months post surgery.
Thanks for your post offering me reassurance in my current recovery from Bilateral BHR surgery by Dr. Su in NY last week.
My thoughts are with you. Keep us posted.
Debbie
Glad to hear you are home. Sorry to hear you have been going thru this. At least you are in excellent medical hands. I will continue to keep you in my thoughts and prayers.
Good Luck.
Pat
Debbie,
Glad to hear you are home and doing better. I understand what you are going through, at 4 months I was back in the hospital for a wash out and debridgement, my infection never made it to the joint but he went in 3 times to clean it out. I had the pic line in while I was back at work. I had a label made for the flush that said it was caffeine that I was putting in, got quite a few laughs from co-workers.
Hi Everyoneâ€"
Just thought I’d give you a quick up-date on where things are with my progress. Today marks three weeks from my surgery (hip wash and debridement) and as frustrating and disappointing this whole thing has been, I feel good, there is no pain and energy levels are good. Of course, I felt fine with no pain before all this happened so all this is still a mystery! I’ve spoken to the Infectious Disease Dr. and the culture they took after surgery never grew anything so, I’m not sure, good news, bad news. It’s still an unknown bacterium we’re dealing with - the IV antibiotic is broad spectrum. He did share some positive thoughts on this, as slight as they might be, but I’m leaning on that right now. I have to say that my hip and strength factors within my hip are much better. Progress is speeding up within the last three weeks where as prior months before were a slow grind. Right now, I feel like putting all this behind me, moving on with my life and never seeing another Dr for a long time!! But I know I can’t do that! ::)
I do a lot of hindsight searching,â€" What should I have been looking for, what signs should have told me to go to the Drs and ‘get this checked out’? I’m not sure what my complaint would have been? I had a setback in December, but we all have set backs; I rested, iced, went back to my crutches for a few days, then things began to improve in January, started PT, progress was slow but things were improving. Quite frankly, I thought I had bursitis because I had it before, but bursitis is normally very painful. I had an ache, right were bursitis would be. The therapist thought bursitis and maybe tendonitis. I had an ache, no fevers, no illness, my incision was healing/had healed beautifully.
I guess my point here is I wish I could pass on advice for the sole purpose of this website and everyone out there as to what to watch for when it comes to infections. We discuss our progress all the time, the ups and downs and finally, for the vast majority, it all works out â€" we give it patience and time. So, when is that not good enough?
I meet with the Infectious Disease Dr. and my surgeon three weeks from now, April 21st, pic line will be done. I have a whole list of questions to ask and I hope some answers to share - will give you a further up-date then.
Thank you for all your kind thoughts and support!
PS â€" I do want to say and stress that I love my new hips!! :D I feel like I can walk like I’m 20 again! ;D
Debbie
It sounds better, Debbie. I'm glad there's no visible problem and that they are keeping tabs on you. Keep positive...
Hi Everyone!
It’s been eight weeks since my surgical irrigation and debridement of my infected hip; two weeks ago ended my six weeks on an IV picc line. I met with my surgeon, Dr. Su, and the ID Dr. on April 21st for a progress report and discussion on my options going forward. X-rays were taken and all looked perfect. Dr. Su and I were on the same page â€" to continue with oral antibiotics for another six weeks with an undetermined ending date. When I stopped the IV picc line, although relieved, I felt very anxious, like someone just removed my security net! I felt exposed to whatever may still be lurking inside so when Dr. Su agreed to continue, I was very relieved!
I was suppose to meet with both at the same time but ended up in a discussion with the ID Dr. before meeting with Dr. Su. He wasn’t too keen on continuing antibiotics but after talking with Dr. Su later, he came on board. It’s important to have an ID Dr. on board with therapies going forward as they will be the one monitoring blood work, interactions with the antibiotics and making recommendations along the way. After discussion with him, I’m not sure we see eye to eye on certain things which may leave me to look into a second opinion and/or another ID Dr.
The reason for the continuation of low dose oral antibiotics is because the infection affected my new metal hip. Once they open me up and had a good look, it wasn’t good - infection deep into the hip joint. My hip was dislocated to allow access to the acetabulum and surrounding tissues. Irrigation and debridement was done more than once, pretty continuously. Dr. Su told me later he never scrubbed so completely and thoroughly. My implant was perfectly intact. It’s amazing I didn’t feel all this early on and did not have pain. I have a 50/50 chance of this returning. When they cultured the fluid and tissue specimens to determine the cause, nothing grew back. I was on antibiotics for two weeks before surgery which might suggest that this successfully rid me of the infection. This is my theory which helps me to stay a little positive! I have been on antibiotics that target no specific bacteria, but broader spectrum â€" so far it’s done the trick. The next six weeks, I am on Augmentin and Rifadin (generic-Amox TR-k CLV/Rifampin). Rifadin needs to be paired with another so hence I’m on two.
I had a discussion with Spencer on this site who went through a similar situation with an infected hip. He noticed early on that something just wasn't right and caught the infection early - the infection never hit the hip. Thanks Spencer for the emails and talk!
I wish I could share what it is one looks for when it comes to infections. Here’s a timeline of events and maybe an alert/alarm might help someone else be more aware of possible symptoms that I seemed to have been oblivious to:
October 17 â€" Right hip resurface and for the next 7 weeks, recovery was very quick and painless.
December 4 â€" Follow up with Dr. Su. All looked great, X-rays perfect, ROM good, incision healing perfectly.
December 14 - First set back. Felt like I pulled something as I had been doing quite a bit. Spent the next week relaxing, icing, back on one crutch for a week. By the holidays, feeling better and worked through muscle issues.
January 8 - Began outside PT. Although slower than I would expect, progress was being made. Had difficult spots around the groin, tight and on the side of my hip I felt tenderness at the bony point and thought I was dealing with Trochanteric Bursitis, maybe tendonitis because the spot was so specific. Maybe at this point I notice a difference in the look of both my hips. My right looked ‘fuller’ than the left. This, however, was nothing I would have worried myself over at the time, but I do reference back to this when searching for a beginning point.
February 16 â€" noticed a red ‘ring’ around incision. Thought I had Lyme disease without the symptoms!
February 17 â€" Brought this to the attention of my PT. She thought she felt some swelling. Watched it for a day, redness around incision grew and it felt like ‘something’ was under the incision.
February 19 â€" Visited my family Dr., blood tests started and since there was an obvious sore on my hip, started me on antibiotics. Notified my surgeon. He was on vacation but began sending pictures of the incision to the PA. In the meantime, more blood work done. Everything was off, Sed rate and CRP high (important indicators, especially for surgeons looking for infection).
Feb. 26 â€" In to see Dr. Su. He was perplexed by what he saw and also my state of well-being. No pain, not even when the incision was touched and pressed. Ordered MRI for that Friday. Had to wait for insurance clearance.
Feb. 28 (Friday) â€" MRI
March 3 (Monday) â€" Dr. Su calls early to say there is fluid around joint and strongly suggested surgery that week.
March 6 (Thursday) â€" Surgery â€" irrigation and debridement, copious amounts of antibiotics both inside and out. Four days in hospital.
March 10 (Late Monday) â€" released to go home. Nurse comes in evening to start me on the picc line.
And today, I feel normal, walk without a limp, pretty much in a smooth fashion â€" my gait is perfect. This is why I will stay on this course, fighting it off for as long as I can.
Cheers!
Debbie keepsmovin!
Thanks for the excellent post, although I feel for you in going through it. Sounds like cautiously good news, good mileposts along the way.
Sending lots of good thoughts your way.
Sorry to hear about all that you're going through. My favourite line from the movie Casablanca seems appropriate - "Here's looking at you, kid"
Hoping that things resolve themselves over time.
Thanks for this time line! that can help a lot if somebody suffers similar setbacks.
its so great, that you are well again!
Thanks for the detailed update.
Dr Su sounds like he's handling your very special situation extremely well.
During yesterday's walk in the mountains, at a section requiring concentration, I wondered if a resurfaced hip joint was dislocated could it be re-assembled - your update answered that for me.
I hope you continue to improve, remain free of infection, and do well with your recovery.
Debbie,
So glad you are on the road to true recovery! Thank-you so much for sharing your experiences with us...we all learn from each other.
deb
Thanks all! Our stories are filled with knowledge to be shared - hope this helps someone down the road....actually, hope no one has to every experience this.
Oldsoccerplayer - what a gem of a movie! - love the oldies - "true yesterday, true today, true tomorrow" - spoken by Murray Burnett, the writer of play behind the making of Casablanca. ;)