Sports like volleyball and soccer, etc...

[volleyballCoach]

I am a 23 year old female. I have osteonecrosis in my knee due to the use of high dose steroids. My doctor has never seen a case like mine. The holes in my femur and tibia are so sporadic and he worries about how young I am. I have severe knee pain right now.

I work 7 days a week, my kids have soccer 5 days a week. I live in an upstairs apartment. I like coaching, especially volleyball, but since the pain started I have tried to keep off it as much as possible. So I've given up coaching all together. I can't do any exercising now. Well I can but I'll pay for it in pain later that night.

My doctor wants to try core decompression. He has never done that surgery so he is recommending I go to University of Florida for the operation. I have done some research and see that most people, after trying all the little surgeries and helpful things, still need a knee replacement.

My question is: how well is recovery in terms of being able to play and coach sports again? I won't feel comfortable coaching or playing until I get the surgery but will it change anything? I've seen a lot of people get hip replacements and it's been 50/50. Half the time I see people doing better than they were before and half the time they get worse. Is a knee replacement pretty much the same flip of a coin recovery?

 

[referee54]

I understand how you feel! Welcome to the forum! We will do lur best to help answer your questions and deal with your concerns.

. My question is: how well is recovery in terms of being able to play and coach sports again?

I know of quite a few very active folks on the forum who have resumed their athletic activities---I remember a few who wnated to get back into basketball, but I do not recall them returning much after their TKR to tell us how they are doing.

We do have runners, hikers, cyclists, skiers and such; I also umpire HS and college baseball games; I have several friends who have resumed reffing football after a TKR or a BTKR.

I wont feel comfortable coaching or playing until I get the surgery but will it change anything?

It will change a quite a bit---and yo will be pain free. I also coach football, and I can tell you that I have no problems dong that; last year, I umpired 86 HS and college baseball games, and I had no trouble working the plate or working the bases.

People have run marathons after having a TKR. My OS told me not to run after my TKR, but new research is indicating that these types of sports are do-able after a TKR.
Here is an article from the forum library:
Sports after TKRr: Knee replacements not harmed by most sports

Here is another article from the library:
Tennis and TKRs: why can't I play singles tennis with A TKR?

In effect, you are an adult and make the decision as to what to do and what not to do after your TKR.

I've seen a lot of people get hip replacements and its been 50/50. half the time I see people doing better then they were before and half the time they get worse.

I would say that the vast majority of the folks on this forum---hips and knees both---are doing much, much better after the replacement surgery. I can sleep at night, I cycle 120-160 miles a week, and I have regained an active lifestyle---and I believe that many others would agree, too.

Absolutely not; while there are no guarantees in life, the outcome of a TKR is very high, and issues after the TKR are fairly uncommon. There are occasional issues with scar tissues, etc---but the huge majority of folks have a great life---and an active one after a TKR.

AS for running and cutting and playing soccer and volleyball, personally, I would not do it, but that is up to you. I can tell you though, that coaching is absolutely no problem.

 

[Josephine]

Hi and welcome to BoneSmart!

My doctor has never seen a case like mine. The holes in my femur and tibia are so sporadic and he worries about how young I am

If your doctor says this, he must either be working in another speciality or have led a limited life! Because how ever bad he thinks it is, a good knee surgeon will have seen worse, I guarantee it! Even I may have seen worse! So don't get depressed thinking your knee isn't salvageable because that's quite likely not to be the case.

My doctor wants to try core decompression. He has never done that surgery so he is recommending I go to University of Florida for the operation.

Very wise and tells me with crystal clarity why he has 'never seen a knee like yours'!

I have done some research and see that most people, after trying all the little surgeries and helpful things, still need a knee replacement.

CD in knees is generally quite successful unlike the same procedure in hips. And there are other things to be taken into account - like your age. At 23 you bones will still be in their growth stage so CD will have a very good chance of success. I would never recommend it in people in their 40s or older.

Do you have an xray of your knee(s) you can post?
And you mentioned hips - are your hips affected too?

 

[volleyballCoach]

Originally I only knew about the AVN in my left knee and the only reason I found that out was because of the water on my knee causing all the pain. This week I had an MRI of my right knee to make sure it was OK. I met my Dr yesterday and although my right knee is asymptomatic, it's worse than the left one. Now we're pushing for an MRI of my hips because he thinks there's a chance that they are affected too. My mom and dad came with me to this appointment and it sort of woke them up to what I'm going through because they thought I was over dramatizing it. They want me to go to the Mayo clinic instead on University of FL but my doctor is going to do some research on doctors there who have done core decompression on knee's like mine. My Dr has done thousands of hip CD's but never a knee one. Majority of his patients are over 50. He hasn't said it but implied that I'm one of his youngest patients.

He really left me in the dark about what the procedure and recovery is like since he really doesn't know and there isn't too much info about this operation. He's thinking the surgeon will only have to make 4 incisions but it all depends on the skill level of the surgeon. He said he's going to research doctors in and out of my network and see how many have experience and how many procedures they have done. He said there is a high possibility that the Drs at Mayo Clinic may only have seen 1 or 2 cases like mine in their career. They could have seen more, they could have seen none. I'm glad that my Dr was honest enough to say he has no idea what to do. I would rather him be honest then lie to make me feel more assured. I will try to upload the images in a few minutes.

Are there any forums about recovery time for CD on the knee's?

Also my doc wants to do each knee separately. Same if my hips are involved. So that's going under 4 separate times. My mom wants to see if we can have a whole team in the OR and knock all of them out at once. I don't know what I can handle. 4 separate surgeries suck but I am the only parent my 6 and 3 year old have. I am lucky that I have a lot of family to fall back on but my grandma's house (where I would normally stay) is full of people right now and I could stay there but I would be on the couch and my kids on the floor as my grandparents have their room, my mom has her room, my sister has her room, and the last room is packed with my papa's sports memorabilia.

I know if it came down to it we would make it work and I could have my bed in the living room and share with the kids til I recover but I have no idea what I'm looking at here and I'm trying to get some picture about recovery so I can prepare. I can't stay in my own house if I'm on crutches because I live in an upstairs apartment with just me and my kids.

If recovery ends up being hard there's no way I'm going to be able to get them fed and dressed in the am, down the stairs, off to school, either up the stairs or to work, then pick them up, have soccer 4 times a week, back up the stairs, do bath time, dinner, homework, and bedtime. I'll have to lean on my family.

Sorry for the book I just wrote, I'm a bit stressed.

It's hard to find out concrete info about what I'm having done because what I've seen is 2/3 people still need a knee replacement and all the documented surgeries were on older generations. My doctor doesn't seem very optimistic for the bone to grow back after I get blood circulation back in it. But if I opt for TKR now then he said it will last me 20 years 25 tops so I'll need 2 or 3 revisions in my lifetime. (since everyone on both sides of my family live into their mid 90's)

I just hate that I cant find answers from Drs or internet. I have a bit of an educational background in physiology and the human body and its functions. I diagnosed myself with Osteonecrosis before I saw the doctor. I'm sort of a control freak when it comes to any sort of planning so I'm freaking out just a bit by not knowing everything there is to know about these procedures.

...HELP...

Also, now that my mom has realized the extend of the damage she (also being a control freak) is freaking out a bit too. I know more of the terminology and physics of it all but she has had seven knee/femur operations and has come to the point where she won't do more surgeries and is just living with the pain and she worries because she doesn't want the same for me. She is only 42 and I've pleaded with her to push her Drs to make things right but she went through so many years of it and it all happened when my little sister was around 2 years old. I saw how laid up she was for years and that scares all of us because that's all we have to compare this to.

 

[volleyballCoach]

does anyone know how to save and upload a picture from DR Media Ambassador?

 

[Josephine]

You don't need to go anywhere else because you'll get all the help you need here. Your surgeon must be rather inexperienced to say that CD in knees is rare because I've helped with dozens of them over the years. And there are plenty of surgeons who have done them, maybe not scores of them, but enough to know what they are doing. It's not really that complicated a surgery.

As for the pain, in the knee it's not that painful a procedure either and the hip is so-so depending upon which procedure they use. At your age, I would imagine any surgeon would choose tantalum rods rather then bone grafts so there wouldn't be any graft site to worry about. However, if they do choose bonegraft, then you want to ask them where they are going to get the bone from (your leg or hip) or are they going to use synthetic or donor bone.

Most CDs in hip and knee have to have a period of non-weight bearing in order to give the CD time to do its job but this shouldn't be a long period. Perhaps about 6 weeks or so. So yes, you will need help during this period. JUst a suggestion - can your grandfather not put his memorabilia into storage for you so you can have your own room? And is it possible you could rent a recliner chair so you can live and sleep in it? Recliner chairs: things you need to know if buying one for your recovery.

As for your mum's knees, when they get bad enough, she will be eager to get them done as the alternative will be to live in a wheelchair and I don't think she'd like that!

Please fell free to ask questions as you think of them. we have a saying here that there's no such thing as a silly question so ask away!

 

[Josephine]

Don't know what that is but this forum has it's own media uploader.

Read this for the 'how to' Uploading a Picture in a Post

 

[volleyballCoach]

Dr Media Ambassador is the program that is on the disc the imaging tech gave me, I can take a pic with my ipad and upload it from there.

It's not that the doctor doesn't understand CD of the knee. He hasn't done one but he does know that my type of AVN is in a rare pattern. I have dead bone in all sorts of places so his concern is that the doc might have to do more than 4 incisions because the dead bone is so sporadic. My worry was how much structural integrity will my knee have after it's drilled but he assured me it should be fine. I am a heavy girl so I try to keep that in mind when they talk about its integrity and weight bearing. I gained a good bit of weight from the ste
roids and having my kids.

This Dr seems to think there won't be any bone grafting or rods at all. He hopes that getting blood supply to the dead areas will be enough. He thinks that bone grafting in all the places I need it will do more damage then help.

My grandfather is a pack rat, borderline hoarder. Both attics are full and the shed and his closet of memorabilia and high payout nick-knacks for when he passes. It's his savings bond for all of us technically. No-one is allowed in his sports room and he can't even open the door right now. I highly doubt he will be OK with leaving it in storage where it could possible get damaged or stolen. He's very particular about those kinds of things. Recently the garage was closed off and made into a large room so he could have that and my grandma could have space of her own but my mom and step dad recently broke up so she has that room and Madi has the other spare bedroom. Please don't think its like an episode of hoarders. The rest of the house is very tidy but if you walked in to solely his sports room, people would question it. lol.

What will most likely happen if I have 6 weeks of recovery is I'll either move into my grandmother's living room and move my bed there too or move into the office. We have a family business I work for that I wont be able to miss much work after surgery and it's conveniently located right below my apartment. There is room in the back for me and the kids to stay but there is no kitchen, hot water, shower, etc so I would still have to travel to my Nana's house or upstairs daily.

I just wish I knew everything to expect so I could prepare and have them prepare. But like I said I cant find out enough info online and I don't know what the plan is until I see another orthopedic that will/can do the surgery.

I'm probably just being a super worry-wart but the pain is a constant reminder of things to come and it worries me. My son's birthday is the 26th so I know it won't be done before then. Plus I still have to do my hips MRI and I think my insurance is going to make me do an xray first because they aren't convinced I need an MRI on my hips. They don't really care what's going on, their insurance. I've only had it for 2 months and definitely put it to the test.

Here's another book :p

 

[volleyballCoach]

I'm really glad this site exists and is active. I keep finding great forums with other people with similar issues but then the dates are always 2007 or something out of date. Stumbling upon this is a blessing

 

[volleyballCoach]

This is some of the pix for my right knee. Left is about the same looking. I have dead bone in my distal femur and proximal tibia.

 

[Josephine]

It's not that the doctor doesn't understand CD of the knee. He hasn't done one but he does know that my type of AVN is in a rare pattern.
This Dr seems to think there won't be any bone grafting or rods at all. He hopes that getting blood supply to the dead areas will be enough. He thinks that bone grafting in all the places I need it will do more damage then help.

Ah, NOW I understand better! Those are the kinds of cases I used to see many years ago and we would just drill into the affected spots with a fine drill to make it bleed and hopefully stimulate bone growth. At your age this is a genuine possibility. I looked at your MRI scans and saw the extent of the damage. It certainly is a rare case.

However, I'm not at all sure now that there will be a real issue with post-op pain or non-weight bearing. You'll just have to wait and see what the surgeon has to say about that.

As for you grandad's collection mania, I fully understand that too! Dear me!

 

[volleyballCoach]

That's in both knees but only one is showing symptoms right now. I go for my hips MRI tomorrow and read them with my Dr. on Wednesday to see if my hips are affected also.

 

[volleyballCoach]

also I found out that I have Discoid Lateral Meniscus in both knees. but since my doctor strongly believes I'll need a knee replacement he doesn't want to add those surgeries to what I'm already having done unless it's successful. From the little I read about it I figure its probably from being born pigeon toed. I was severely pigeon toed and wore leg braces for many years to correct it (mostly).

Just a side note

 

[Josephine]

Well, you won't have to worry about it now if they'll soon be gone!
As far as I am aware, they are largely asymptomatic anyway.

 

[volleyballCoach]

I had a lot of knee pain when I played sports as a kid and teenager that was from ir. my mom has it also and getting it fixed turned into a 5 year journey of surgeries and never being able to really run again. so she is dead set against me getting that fixed. plus im pretty certain ill be getting total knee replacements sooner then anyone expects. neither my Dr. nor I are very hopeful with the upcoming surgeries. i'm thinking they will try a few experimental things to postpone total knee replacements but in the nevt 5 years I see it happening. personally I would rather have it sooner rather then later to avoid all the unnecisary surgeries but my family and Dr. are dead set against it. They want to try everything else possible. Since im only 23 and people in my family live into their late 90's the Dr. is predicting that I will have to redo my knee replacements 2 or 3 times in my lifetime since they are only expected to last 20-25 years.

also an update:
I had my hip MRI's done and both are affected with AVN too. the right isn't so bad. it doesn't need immediate surgery and were just going to monitor it every year but my Left one will need to have surgery. also not the priority but will need to be done. priority is my knees.

I just put my application in for the house im hoping to buy and trying to get that all done and postpone all the surgeries until after I get the house.

also the Dr. gave me an application for a disabled parking permit to limit my walking since im postponing surgery.

 

[volleyballCoach]

I went and watched my uncles and cousins volleyball game last night and was happy to be there but really sad that all I could do is sit and cheer. I miss playing soooo much. I can't help but feel really hatful towards my (old) pulmonologist and blame for him doing this to me. I know I was sick and he tried to help but he messed up big time and he doesn't suffer for it, I do and I really truly hate him. until I know how I feel after the final operations years from now, I feel like my life is over. or at least my active one I had. I feel really disabled. I know there is worse things in the world but this took all the activities I loved doing away from me. EVERYTHING. maybe im just depressed today bc im thinking about it all too much but im so mad.