Question
QUESTION: Hello Sharon.  Our 14 year old daughter has had JRA for 5 years.  She has taken many medications, but is currently taking Humira and Meloxicam (Mobic).  About 18 months ago it was determined that the arthritis was active in her right hip.  She did exercises and physical therapy as she worked to continue to be active in dance and tennis.  The P.T. helped immensely.  Her hip has worsened to the point that she needs a replacement.  Do you regret having your hip replaced at such a young age?  What were your limitations?  Were you able to participate in sports activities?  What would you have done differently?  The orthopedic we met with answered our questions but stopped short of advising us what to do.  We have a 2nd opinion next week.  This poor girl has the spirit for movement but can hardly walk now.  She must lift her leg into the car.  What insight can you give us?  Many thanks -

ANSWER: Hi Bill,

No I don't regret having my hips done early.  In my case, if I didn't have it done, I wouuld have had my pelvis collapse and that gave me no option.  But the surgery did relive my pain and gave me a pretty normal life.

After the surgery I went on to college, grad school and marriage.  I was able to tour Europe on my honeymoon and I had two healthy children via C section.  Even after four revisions in each hip, a total fo eight hip replacements I currently work full time and take care of my family.  So, your answer is, no I don't regret it.  

Are there things I cannot do?  Absolutely.  I cannot do any sports where I take the risk of falling and dislocating.  But with my first set of replacements, I did just about everything.  I didn't ice skate, and I didn't ski and I didn't do contact sports.

If you daughter's quality of life can be improved, I say let her have the surgery.  If she is in pain and she is missing out on being with friends and leading a normal life I would say let her have the surgery.  You cannot give the missed years back to her.  She needs to live as normal a life as possible.  She needs to be with friends, date, and go to school.  

Since my initial replacements medical science has come very far and younger people are getting replacements and they last longer.  She will have restrictions on what she can and cannot do.  she will have to give herself time to heal physically but she will be able to live a more normal life.  

I was never a big sports person, so I didn't miss that at all.  But I was able to walk and live without pain.  I would lay the facts out to her and let her make the decision.  I have had a hard road, but I have led a full life and would not have changed anything and I consider myself lucky to have had a chance to do all the things I have been able to do.

I hope I have helped you with your decision.

Sharon Davis

---------- FOLLOW-UP ----------

QUESTION: Hello Sharon.  I think our daughter was leaning in the direction of going ahead with the surgery, and your advice greatly helped her.  Quality of life is definitely one of our main goals.  From a Physical Therapist's perspective, what can we expect in terms of recovery if everything goes as planned?

ANSWER: Bill

Kids heal quickly.  My first surgery at 16 I was out of the hospital on crutches in 10 days.  But as I got older it took longer.  Also keep in mind that my first THR surgery in 1976 used cemented replacements which are not used anymore and the hospital stay is much less time.

My brother who had his first replacement a few weeks ago, was out of the hospital in 3 days with a non-cemented replacement and he is 46.  Within three weeks he was back at work and pretty close to normal.  But I think he pushed it too hard as he was in a lot of pain.

Your daughter's recovery will depend on the type of surgery they do.  If they do the normal THR and go in from the side of her body, they will cut through the periformus and that's a lot of recovery time, I'd say about 6-8 weeks to return to just about normal activity.  There is a new procedure, and unfortunately I don't know much about it, but they go in from the front of the body with a smaller scar, but since I am not familiar with it I can't give you recovery estimates.  So it's best to see which type of surgery she is going to have and then question the doctor.  If he has done work on younger patients, ask if your daughter can speak with a younger person so they can tell her what to expect. I used to talk with hip patients all the time.  Additionally any pain she has will not be bone pain it will be healing pain which still hurts, but will gradually lessen until she is pain free.  Just tell her to move slowly and think before she moves in order to stay within her restrictions.  If she dislocates in the beginning she will be setting herself up for trouble.

Also, be sure to ask the doctor if he is using a larger cup.  Kids move a lot more and a larger cup will lessen the chance of dislocation.   The smaller ones are good for older people who are not active, but the larger ones are better for kids.

The one thing I will caution you to look for is signs of depression after surgery.  Your daughter will lose a lot of her independance for a few weeks and will need a lot of help to do her normal things, like getting dressed, washing, etc.  If she starts to experience depression, please let her know that it will pass.  As she gets on with her recovery and becomes more and more healthy, her restrictions will lift and she will get her life back to normal and even better.  It takes time, but that loss of independence is always something that hurts my recovery for a bit of time.  I am very independent and having to have my husband help me cook dinner, do the laundry, wash myself, etc, drives me nuts.  If you see your daughter go through any of that, crying jags, excess sleeping, too much pain meds, get a referral to a counselor.  They may just use cognitive therapy, but it may be that she has to go on an anti-depressant for few weeks and then when she is fully recovered, she can wean off.

I think you all made the right decision, and I wish her luck.  Please let me know if I can do anything else for you.  I think I addressed all your issues.

Sharon Davis

---------- FOLLOW-UP ----------

QUESTION: Hi Sharon.  Your insight is excellent.  The 1st ortho we met with indicated that it would be a posterior entry for the surgery.  Can you shed any light on this?  Many thanks -We feel so much better educated.

Answer
Bill
Posterior entry is the same as I had.  They will cut through the periformus. Surgery should not take more than an hour and a half.
See if they can do the procedure with an epidural rather than general anesthetic.  It's easier on her.

It will take time to heal.  She will be out of bed the next day.  She'll go on a walker for a bit, then to crutches, then to a cane. Then to nothing.  They will start by sending a PT to your house and she'll need ankle weights that you can increase by adding weights.  but the PT should tell you about that when the time comes. Don't let her walk with the weights on, she's going to do exercise on the bed at first and then exercise standing.  She will probably be on coumidin so as to stop any blood clots from forming, but this is very temporary.  They will give her elastic stockings to wear until she is up and walking on a regular basis.  Tell her to take any pain meds BEFORE the pain starts, that way is stays managable then she's going to slowly wean off of meds.

She's going to need a high toilet, a grabber, and something to put her socks on until she can cross her legs into a Number 4 position. The rehab stores sell this stuff as a "Hip Kit".  Ask the hospital about it. Tell her to never pick something up from a sitting position where she bends forward to the ground in a chair to pick something up.  Never rotate the knee inwards or cross the leg over her body over the midline.  No bending by squatting.  Bend from the waist.  They'll go over all that with her.

It sounds like a lot to process, but it's really going to become second nature to her.  In fact her main problem, if she is responsible, will probably be you and your wife nagging her.  To this day, my husband will yell at me (DON'T TWIST!!!!)

Be prepared to hear a lot of complaining and moaning and groaning and crying from her that she will never be the same, she's never going to be normal.  That's actually a good thing.  The more she complains the better she will feel.  Let her "kvetch".  (Jewish word for complaining) and let her moan and groan.  That's a sign she's doing well.  If she stops complaining and withdraws, take a closer look at her emotional healing.

She'll be fine. Give her power over her healing.  Try not to interfere with her decisions unless you see she is in danger of going over her restrictions.  She needs that power over her body and it will prepare her to take care of herself in years to come which is what you ultimatley want her to do.  I know it's hard, I'm a Jewish mother and my kids are always complianing that I nag them, and that I meddle and that I'm the "WORST MOM IN THE WORLD because I am overproctective, but as a parent, you want the best for your kids and if it were up to us, we'd never let them go.

Please feel free to keep me updated on her progress, even if it's a short email that says she is doing fine.  

My personal email is:  [email protected]

sharon