Slipped Capital femoral Epiphysis

[dani587]

When I was 9 years old I had a very severe unstable slipped capital femoral epiphysis in my left hip. It occured just one week after the first symptom developed. I had surgery the next day and a pin was put in it, then a month later my right leg started to hurt and from the experience I had just been through my mom took me straight to the hospital. A day after that a pin was put into my other hip. 2 months after that, the pin in my left hip was removed and I was told I still needed surgery because I had developed avascular necrosis. They wanted to do a trapdoor procedure I believe. I donated 2 pints of my own blood whcih the doctor thought would be more than enough. 3 months from my pin removal it was time for surgery however it didn't go as planned. Once they got inside they realized it was much more severe than the x-rays showed so they changed the surgery to an osteotamy. All together i was in surgery and recovery for 18 hours and was given my two pints of blood in surgery along with 2 more blood transfusions and I woke up in the recovery room to another transfusion. I had lost more than 5 pints of blood. The pin in my right hip was also removed during this surgery. I also had a cast that covered my entire left leg and went up to my chest. Because I was at Stony Brook hospital and they're horrible there I ended up getting an infection a week later and needed to go in for more surgery. They had to clean out the incision in my groin (there is an incision going down the side of my left leg and down my groin) which they left open to heal on it's own, which took about 4 months to fully heal. Then I had another surgery a few months later to remove all the hardware that was put in. I was also told that I should get a total hip replacement ... at 9 years old. I refused.

After months of physical therapy, I still had pain from time to time but only after walking for really long distances. Instead of just being tired I would also experience severe pain. It wasn't that often though so I thought everything was okay. But as the years went by, the point in which I would start experience pain started moving closer and closer to the time that I started the activity however, I would take some pain killers and be alright the next day.  Now I wasn't the most physically active teen because I was now afraid of being in pain, but it didn't completely stop me. I could walk and keep up with my friends for a few years. By 16 the pain started to get progessively worse and worse. Causing me to have to take breaks in my activities and the pain would last longer. But I could still walk around for a couple of hours. It was bad enough though that by 17 I was considering a total hip replacement.

I am now 20. My girlfriend and I have been together for a year and when her and I started going out I told her about my hip problem and that it was the reason I limped, she looked at me and said I'm crazy because she hasn't seen me limp..... yet. In the first few months we were together we would go to the mall and walk around for a couple hours, go to the beach. Nothing held us back and my hip was not giving me hardly any problems. However, about 4 months into our relationship she started noticing my limp and asked me about it and then I reminded her about my problem and she said she totally forgot.

From that point on my hip has gotten severely worse. I can no longer work because I can't sit and I can't stand. I can't walk around for more than 15 minutes without my cane or without being in excruitiating pain. I can't bend down to pick something up. I am having very bad knee pains and it pops everytime I walk. My back gets stiff after about 5 minutes of doing anything at all.

Now here come my questions.

1. Does anyone else experience consistant pain that just doesn't let up?

2. Does anybody else feel like no matter what, nobody understands?
I'll say I can't do something because I'm in so much pain and people look at me like you're always in pain just get over it kind of thing. It's not like I want to be in pain, I would love to be able to do something without being in pain.

3. Has your condition worsened just as drastically in such a short amount of time?

4. Has this caused a depression for you?

[JainMD]

Hi Dani,
I think you should be consulting another orthopaedician for further evaluation and plan of management.
If surgery is necessary it has be done and we cannot sit on the problem for long.
I appreciate Poobah's thoughts and words, and also it is a first hand experience.
Keep me informed if you have any queries.
Bye.

[Poobah]

Hi dani,

Sorry it took so long to get back to you.

I know what you mean about having someone to listen to you.  Sometimes we just don't care that much about other people's problems until we have been in their shoes.  I am even guilty of that.  But I can relate to your pain and frustration.  It is too bad that the Dr's don't really have that much compassion.  Not saying all Drs....  
Yes, you do need to lose weight (so do I) in order to take some pressure off of your joints.  I know it's not easy because you are probably depressed and can't really do anything.  But you need to try.  I am trying to so do so myself.  And I know that your past experiences with surgery have not been that good.  Maybe you can find another Dr?  Is one of the reasons why you can't have the operation because of money?  I hope not!  Boy am I glad that I no longer live in the U.S.!  I don't know how many times I have heard people say that they would get treated but couldn't because they didn't have the money.  How sad!  Is that all people think about anymore?
Anyway,...I think you know what you need to do, but are scared to do it.  I really can't blame you.  But remember that not every surgery is the same.  Make sure that you get more than one opinion before anyone touches you.  You can't live any kind of life by doing "nothing".  Your pain won't go away by wishing it away.  Who knows?  Maybe this time it will be better?  Could it be any worse than now?  Do you want to end up in a wheelchair?  Just some things to think about.  Of course it is easy for me to say.  I have been blessed each time I have had surgery.  No problems at all.  In fact each time I had surgery, I came out better than before.  
One more thing.  When the Drs tell you not to put weight on your leg, you need to listen to them.  You can end up damaging a nerve or forcing your joint out of place.  There was a reason that they told you that.  And yes, I didn't put weight on my leg for a whole yr.  My slipped epiphysis was due to me having a growth spurt.  I grew 10 inches in 6 months!  

Anyway, I am here if you need someone to talk to.

[dani587]

Hi,

Thank you so much for your response, it means a lot that some took the time to read about what happened to me. I can't believe you had to keep weight off of your leg for a year, I was told only for a couple weeks, but I took it upon myself to take my first step without the crutches only a few days after the surgery, I was always a quick healer.

I went to a specialist in NYC a few months ago, but I don't have any insurance and they told me that I need the replacement but with my weight (I haven't been able to do much since it started so I gained a lot of weight) it's very risky and I just don't know how I feel about going through with that. My other option is a hip fusion which would put more strain on my lower back, my knee, and my right leg which I am already experiencing so I don't think that would be a good idea. I also feel like at this point I'm going to need surgery on both my knees, my right knee has been giving out once or twice a week and just hurts, but with no insurance and no income I can't really take care of that.

It's also caused a lot of emotional distress especially since I feel like nobody understands at all the pain I'm going though. The x-rays 11 years ago that were taken were very bad I can only imagine what they would look like now. My girlfriend gets so angry with me whenever she asks me to run downstairs (we're staying in the basement of her moms house) to get something and I hesitate before saying yes because it just hurts.  People say just get the surgery it's no big deal but for every surgery I've had something has always gone wrong and I don't know if I could go through everything I went through again I think it would destroy me - especially since no body gets it and my mom won't be there to get me through it like she was when I was younger.

Thank you so much for posting :-)

[Poobah]

Hi dani587

I had a slipped epiphysis also in my left leg when I was 12 yrs old,  I complained about having pain in my lower leg and could hardly walk.  My mom sent me to a pediatrician, and they thought it was just a pulled muscle.  After about a week, and being in excruciating pain, we went back again, ....and they couldn't find anything.  They did xrays, but only from the knee down.  By this time, everyone thought I was just making all this up, because they thought I didn't want to participate in sports.  Well, finally the pediatrician suggested to my mom to send me to an orthapedic to have a look.  The Dr took xrays of my whole leg, and immediately had me put in the hospital.  He said that my nerve in the femur was at risk of being severed, and if I didn't have the surgery I would be paralyzed within a very short time!  So dani...it was not all in my head.  It was REAL pain,.  I had 4 pins put in my hip to keep it stabilized, and had to be on crutches with no weight whatsoever on that leg for 1 yr.  Afterwards I had to have the pins taken out.  That was 30 years ago, and I am doing fine.  The only thing is, is that my leg is about an inch shorter than the other one, and that caused my back to curve slightly as I grew.  Also, I am now feeling some arthritis, which I already was warned would be inevitable.

I don't know if you have gone back to the Dr's or not, but I suggest you do.  You may need to have a hip replacement now, seeing that you cannot bend over or sit down.  You need to wiegh out the necessity of this.  Is it better to stay like you are now...and get worse?  Or to try to have "quality" life?  I am not sure what the risks are in this, so I am just expressing how I feel.  Maybe a Dr here can give some more info.

I wish you well!