Hip Infection* Hip revision

[Josephine]

Hello Windy City. You can see I've added it to your old thread so we get the entire story. However a couple of things puzzle me

trying to ride an exercise bike and I cannot even bring my leg past 90 to even try to get to chest. I pulled and pulled and others pushed and pushed.

Why are you even trying to get your knee to your chest? And who were these 'others' who pulled and pushed and what did they pull and push?

I am trying my best to fix this myself if I have to.

In what way are you trying to fix it yourself?

Do you have a recent xray you can post for me to see how things are currently?

 

[Windy City]

Sorry first off, I can't even lift my leg naturally to 90 degrees at all, at best I get 60 degrees. All this is with knee naturally bent and relaxed. Pulling it with a yoga strap I can get 90 with pain.

Out of desperation for a back issue to avoid spinal fusion as long as I can, I went to a chiropractor who also noticed my dead leg issue. He thinks a nerve was hit and thus why my leg muscles in front won't lift. Then he tried with his body weight to push my leg to 90 degrees and struggled as well and was confused why it was stuck but now we know. I was diagnosed with HO.

As for xray, it will be a month before I can get one. I am seeing the doctor again December 14th and will get a copy of it so I can find someone to help. Till then, I will bounce this off you to see at this stage of post hip replacement if this is normal or not.

Things I cannot do at all.

Use a normal toilet..that is right that requires the leg to bend a bit more then sitting in a chair which causes me great pain in the groin and weakness in quad. I use a hospital standing toilet now and probably rest of my life.
Cannot squat to pick things off the ground
Cannot use an exercise bike or anything like this that requires a legs natural range of motion
Cannot put on socks or shoes and I struggle to put on pants​

There are probably more things in relation to the above that would be impeded due to this issue, just can't think of them right now. Now is a list of pain issues I have due to this.

Pain standing to long that starts in groin and goes down front quad. Walking also causes pain due to the irritation I guess from the bone growth in the muscle. It gets hot and swells up and I have to ice it to even gain function in my left leg again.
Pain sitting on a standard chair (I am tall 5 ft 10 female maybe why) while sitting I cannot keep my leg straight. Pain and pressure in groin forces my leg off to the left side where it flops. I get to man spread for everyone now.
There is a constant pressure in my groin if i try to move my leg at all and turns to pain and aching due to natural movement of the muscle.
Pain in groin that grows to quad also when walking and my leg goes back. I cannot walk a normal gait without it pulling, pressure tightness, then finally swelling pain aching.​

There is probably more but you get the idea.

Outside of that the implant looks to have taken wonderfully and thus doc doesn't to preform surgery. Just live like this the rest of my life. If this is normal, great I will wait it out and see when I can walk/stand normally again. I have not been able to now for a few months.

If this is not normal, let me ask this - what would you do?

For me, to fix this myself was find a doctor. If this doctor will not help to help me get some of my range of motion and life back. I know the risks and its worth death on the table to get some of my life back.

 

[Josephine]

Well all of what you've said is totally cognisant with HO. I don't know how much reading you've done about this condition or even how much you've actually understood. But the simple truth and worst case scenario is that your hip is pretty much encased or even entombed in bone so the likelihood or you or any therapist being able to force it to bend is out of the question.

Let me show you some pictures to show you what I mean and what you are battling with

These are two hip replacements and you can see how the bone bridge has built up from the trochanter to the pelvis.

And here is a hip au naturale but afflicted with HO. You can see how the whole side of the femur is bridged with a massive growth of bone.

 

[Windy City]

My questions comes down to this. In short is there a specialist who deals with this in its removal? and Has anyone had it successfully removed?

 

[Josephine]

Since it's listed as one of the rare conditions which means there aren't too many cases, then sadly there are few specialists in HO. However, you might find a chap who specialises in bone cancer and sarcoma to have come across more than the occasional case.

As for prophylactic treatment, did you read these articles from our Library? There's quite a body of work in them
Heterotopic ossification
Heterotopic ossification prophylaxis – an updated review

I'd also recommend this surgeon who specialises in sarcoma broken link removed: https://www.dfwsarcoma.com/ in Plano TX. I do strongly recommend you contact him and ask his opinion.

 

[CalciumHip]

My wife has Heterotopic Ossification in her right hip. This developed after she feel and broke her hip and had to have a total hip replication (9/4/2016). Her story so far is outlined under the user name of CalciumHip. We are right now waiting until April 2018 when she can again have a full body scan to see if the calcium has stop developing.

I just had a heart attack and had to have open heart surgery with a triple bye-pass. However, the surgery went well and I am now recovering well. My wife is doing better but she still is in a lot of pain and she still falls. We will have the operation with the doctor we found at Emory Orthopedics Center in Atlanta hopefully next Spring. The doctor's name is Dr. Shervin Oskouei, Oncology.

#heterotopicossification

 

[Windy City]

I have an infection twice now and my hip now needs two stage revision. I am wondering on your success stories as I am told..its not good for me being young. All I care about are those who been in this and came out on the other side, good or bad, I need to hear it. thank you.

 

[Pumpkin]

@Windy City
Welcome back to BoneSmart, sorry to hear you will be having a 2 stage revision.
You should have a better chance to beat the infection with a 2 stage revision.

if you go to the post op hip thread and click on an Hip Infection banner, a list of members with hip infections will pop up for you. Here is a link to get you started. Hip Infections
You should find what you are looking for in this list of threads.

 

[Windy City]

Anyone else have issues where doctors missed a bacteria the first time with a spacer? A found second bacteria just a little too late to be treated with spacer and now your on hard core antibiotics for a year for the missed infection? Is 500 mg penicillin VK x2 a day alot to take for one year? Is this common? Anyone doing this or have done this? Let me know. Thanks

 

[Pumpkin]

@Windy City
Sorry to hear you continue to have problems with your hip.
Missing an infection is uncommon, long term antibiotic use is common.
My mother in law had a hip infection and took antibiotics the rest of her life (doxycycline).

Did you have a two stage revision for your infection?
Let us know the surgery date and we will add it to your signature, thanks!

You'll notice that I have merged your newest thread with your original recovery thread. For several reasons, we prefer that you only have one recovery thread:

• That way, we have all your information in one place. This makes it easier to go back and review your history before providing advice.
• If you keep starting new threads, you miss the posts and advice others have left for you in the old threads, and some information may be unnecessarily repeated
• Having only one thread will act as a diary of your progress that you can look back on.

So please post any updates, questions or concerns about your recovery here. If you prefer a different thread title, just post what you want and we'll get it changed for you.
If you need an urgent response to a question, just tag a member of staff.

Many members bookmark their thread in their computer browser, so they can find it when they log on.
How can I find my threads and posts?

 

[Windy City]

Dec 18th removed out implant, almost died in hospital..liver was going into failure. Not looking good for me right now. I would of never done a joint replacement had I known my quality of life would diminish so rapidly and I would face death/amputation. My advice. Don't do it. In my 40's and gotten all the bad things...leg length discrepency, heterotopic ossification grade 3 (couldnt sit...leg froze straight), cut it out...now ongoing seroma, infections bursting out of leg and had to find infection specialist around xmas to help so going with complete stranger out of this or face death/amputation. ...on drugs I'm sensitive too as nothing else will kill it without infection killing me. Currently on penicillin and was on picc line with 2 meds..I don't remember what they are..I had brain tumor/cranitomy/transplant...so memory is bad. Left hip surgeries now are 4-5 issues since 2017. Look into plasma rich plasma injections, could save your life.

 

[Layla]

Hello @Windy City
I’m am so sorry for all you’re experiencing. My heart goes out to you. You’ve had more than your share of misfortune to deal with. While your circumstances are extremely unfortunate and also rare, there is always hope. I am concerned that others not be discouraged from THR and have confidence in their surgeon / recovery. Your collective experiences are extraordinary. Sadly, I have nothing to offer in the way of advice, but you will be in my prayers for comfort, peace of mind and healing from all. Please know that we’re here for you should you need support, encouragement or just a listening ear.
God Bless.

 

[Celle]

I'm sorry you've been so ill, @Windy City .
You've had a lot to deal with, but it sounds as if your condition is improving now. Your infection was caught in time and amputation is almost never done. It's an action of very last resort and was only mentioned because you had to know all the possibilities, however unlikely they might be.

It's a long process to completely get rid of the infection, but treatment is usually very successful and there's a good chance that you will eventually be able to return to a normal life.

I'm going to ask @PegGar16 if she can come and talk to you. She had a bad infection and a long recovery, but she is fine now.

 

[Windy City]

I need help, who has been on life long antibiotics? I have something called Pee-ap-ni that wont go away. Life expectancy? Anyone? I need direct help here.

 

[Windy City]

I go back in for a swap out March 16th. more picc lines and cleanout. This doctor does not know what to do anymore if this doesn't work.

 

[Layla]

Hello, I’m sorry you continue to struggle through this situation. My heart goes out to you.
Because you seem anxious for some clarity, my best advice would be to ask your physician these questions, specifically the physician that’s given you the diagnosis. I’ve not heard of the condition you’ve mentioned, not sure of the spelling. With that said, your physician should be able to enlighten you giving you a better understanding of all.

I wish you all the best on the 16th. If your physician runs out of ideas to bring you back to health, I’d seek a second or third opinion...whatever it takes.
Wishing you comfort, answers and healing.
@Windy City

 

[Windy City]

I think i found it... Propionibacterium. This is what came up late on me and they elimated the staphylococcus epidermidis. Propionibacterium is difficult to eliminate. One of the drugs given late was Clindamycin. But so far no luck. I really wish I could get help on this...I am alone in this. I did solve the seroma...thats forever..once they take out the HO from muscle...its forever and never grows back..they just took a chunk of leg out thats now filling with fluid and thats it..I gotta live with that.

 

[Jamie]

@Windy City ... are you and your surgeon working with an infection specialist? If not, I strongly suggest you add one to your medical team. This is the person who should have information for you about a plan going forward. There are many options for antibiotics.

In cases where it's needed, people can remain on antibiotics for extended periods of time. You might need to also take some type of probiotics to keep your gut bacteria in line.

Where are you in Illinois? Are you in or near Chicago?

 

[Windy City]

I am working with a disease specialist and an orthopedic doctor. I don't know much only that he seems very nice and hes trying. No real history on this guy as I was in dire straights leaking fluid out of my leg and as they say, any port in a storm. I am in park ridge. The disease specilist had a 90% success for me too and claimed to have experience with this very bacteria. Only my treatment failed and nobody has seen this before. Its a real Oh Shoot moment. My medical history is full of battles of life and death and poor doctors struggling to keep me going. Its just luck..a simple thing becomes a nightmare that nobody seen coming. They even tested my DNA for defects that I had no clue about till my general doctor brought up with follow up, that's how not right things are going for me. Docs are baffled. Ever feel like something terrible had it out for you? That's my life. I do all the right things, jump hoops, everything I am told..and it still doesn't work. I think positive and that don't work either. In short..everything is a battle for me..a hard core fight with death which shouldn't happen. Its why I am here, I am really trying to figure out..if anyone had something like this..and how did you cure it? As of this moment....this bacteria is immune to treatment. I need to find its weakness before it finds mine.

 

[Jamie]

Chicago has a large number of doctors, both orthopedic surgeons and infectious disease specialists. I suggest you try and find another infection specialist to get a second opinion. You have things going on that appear to be extremely rare. It's not likely that you're going to find someone here or anyplace on the web that have a similar situation. My best suggestion to you is to talk to different doctors.