46 yr old with LPD at 7 years old...what does future hold

Legg-Calve-Perthes Disease
#1

I am a 46 year old male with LPD diagnosed at age 7. Went through 2 weeks stint of leg traction in hospital then one more year at home missing 2nd grade, then brace and crutches for another year before finaly getting a “new” surgery that has worked up to now. Would have pain when over doing it from time to time, 2 weeks ago-really over did it and hurt myself. Was told as a child I may become crippled and develop arthritus later in life–is that time coming?

What other child LPD’s that are now adults have experienced problems again? What does the future hold? Is hip replacement a possibility? For 20 years worked on my feet as restaurant manager, then past 10 years more sit down desk work and extensive driving and gaining weight (not good). I do not think the past 10 years have helped me. What have you experienced adult LPD’s? Let me know! email . Thanks!

#2

I’m near tears reading this because I thought I was alone and crazy.

I got LCPD when I was 5. I did the whole thing: Traction, braces(Hated those- who didn’t. Anyone else have the stupid rocking horse “night-time” one?), 4x surgery, bodycast, etc… My original Dr. (Depaoli) in Phx fixed my lld at 15. It came back and is now nearly an inch.
I was a waiter through my twenties, but can’t do it anymore. I’m 39 now and my hip pain has steadily worsened. I now have severe back pain and all sorts of related issues. Was actually diagnosed with Fibromyalgia due to the widespread pain I’m convinced is all related to this bastard of a disease. Dr. Merry go round. Finally found one who truly believed me. I’ve tried almost everything. Getting a spinal cord stimulator soon. The trial really helped.
Hang in there everyone. There are people out here who care a lot, and Dr’s determined to fix us.
Peace and love to all my gimp friends;)
#3 
 Hi, my name is Mike AKA: Dinkuss.  After some time researching  on my own Perthese disease, I was pleased to finally find this site and read other's postings of very similar situations to my own. I also was diagnosed as a child of 9 years old and actually underwent 3 separate surgeries (the first of which was not entirely succesfull and required the second corrective

surgery) The first surgery was to install a matal spacer over the ball of the femur to allow better blood flow and developement of the bone. The second was to correct the accidental mis-allignment of the bone in the correct possition during the first procedure, which resulted in the entire leg being pointed outward and the foot being turned at the wrong position. The third surgery was to later remove the spacer.
After this childhood experience I went on to basically recover almost fully. I say almost due to residual arthritic-like throbbing of the hip that would result from extensive exercise at various jobs during my early and middle adulthood. I am now turning 38 and have spent the last year trying to find a physician that would not only accept my type of insurance but who would take my claims of increasing pain and worsening grinding of the hip joint when ascending stairs or walking or standing for extended periods of time. The biggest problem it is causxing for me is during sleep. I cannot seem to find comfort when trying to sleep. Although I’ve managed to function it was some time before I actually realized what was happening when I was sleeping. The first thing I recall about this is from my early 20’s when the girlfriend I had at the time told me I would cry during my sleep. I had no idea this was happening. Still I have managed to continue to work at very physical jobs until the past two years when the sleep deprivation and throbbing pain have invaded my conscious state enough to prompt my seeking a physician and a specialist for follow up care and possible treatments available to me now in my later life.
After trying prescription anti-inflamitories (Naproxin) alone and recieving no or little difference in pain My physician prescribed Tramadol alone while locating an ortho surgeon to refer me too. This medication although at fist causing slight nausea and itching of the skin finally allowed me to sleep at least noticably better than without it. However after a couple months of using this medication its non-narcotic pain relief seems to be failing and sleep has become elusive yet again. Currently thats where things stand and I have consulted with the specialist who looked over the x-rays and said that the surgeries as a child had helped the bone heel to some extent. and that even with the level of pain i now endure it is not enough for him to consider further surgery for probably 10 more years. Truthfully it has started to also cause me depression not being able to enjoy walks with my children and other activities and may have some hand in a beginning to weight gain from lessoned activities and exercise in an attempt to stem the resulting pain.
At this time that is where things stand as I search for another specialist more sympathetic to my problem and who will accept my insurance. Anyway I will continue to post on this site and share my story and read from others in the similar situation. It is helpful to see that others who have had the disease are going through the same things because it tells me that this is not uncommon at least and that perhaps someone out there understands. So until later best of luck to all and feel free to reply if you or any others reading this feel so inclined.

#4

Well I didn’t mention it in my comment, but I too have the problems with sleep and "outgrowing " pain medications, darvacet, tramadol, oxcodone, all no longer work, I get kind of incredulous looks from normal doctors not familiar with the desease, and because of this they are hesitant to prescribe pain meds…I often resort to muscle creams for some of the pain but are not very affective either. I am currently trying to get appointment with local Orthopaedic I have not worked in 1 year and 1income sucks.

#5

Hi, im Terri, i had a hip condition from birth and developed perthes when i was 7 or 8, i had it in both hips, no treatment apart from traction and i had three operations. I am now 22 years old and in pain most of the time, the doctor took me seriously and i am going to see my consultant soon i hope! Im nervous because the doctor said i may need surgery??

#6

Hi

I’m 45 years old this year and looking at a hip replacement later in the year.

I had perthes in my right hip only at age 4 1/2 years and spent 3 months in traction in hospital, then over a year wearing a calliper (brace).

I take some fairly strong pain meds to keep functional at this point, but to compound my problems, I also have fibromyalgia, which causes a fair amount of pain too, so I am struggling a lot of the time to stay on top of that pain.

My children both have had perthes too - my son was diagnosed at 3 1/2 years old and other than restrictions and pain meds as needed, he has done well. He is currently 13 1/2 years old now, with good strong hips, 5’8" tall.

My daughter was diagnosed at 5 years of age and has had traction, petrie casting, bilateral pelvic osteotomies and an external fixator. She is currently 11 1/2 years old and is in regrowth/reossification. Her femoral heads are well contained and now we just have to wait for time to tell what her future holds.

Donna Brown
New Zealand

#7

Just what I was looking for!

I am currently 46 yrs and was diagnosed with LPD at age 7. I had traction for a few weeks, then wore a brace that kept all pressure off the leg. In less than a year, I was diagnosed in the other hip as well. I was told that I was statistically odd, being female and affected bilaterally. I wore a cast on both legs with wooden braces connecting them, keeping them in the correct position for regrowth. After approximately a year in casting, I was declared well.

I have been lucky and had relatively few problems since, however in the last year I have had increasing stiffness and occasional pain. I was also told as a child that I would probably end up with hip problems as I aged, and here it comes! It has quickly increased in intensity to the point that it is interupting my daily activities.

Has anyone had hip replacement surgery due to LPD complications?

#8

I am 31 and living with LCPD I feel like a prisoner I am constantly in pain,I had hip surgery that was done when I was 5 and then again at age 15, I was in traction and in braces as well. I have not led a normal life, My parents are cautious about my surgery and me doing damage to my joints. The doctors never tell you what happens when u start a real life, like childbirth,gaining weight because of not being able to exercise then being told to exercise to lose weight? ?They never tell you the truth that hey after LCPD as a child you will have issues as an adult.

#9

Hi Nubnup

I had perthes as a child, have gone on to have two children - one was an emergency C-section, the other was a natural childbirth. I have weight issues and with a hip replacement looming on the calendar, don’t know if I will ever get on top of that before the surgery, as I can’t walk far!

I set up an adult perthes survivors group at http://au.groups.yahoo.com/group/adultperthessurvivors/ and also an informational site at www.perthesnz.bravehost.com which you might find interesting, as there is information there about adults with perthes, childbirth, sex etc etc (don’t read the R18 thread, if you are easily offended, but its straight up honest and info that needs to be discussed!).

Cheers

Donna - NZ

#10

Hi, I had legg perthes when I was 5. My doctor placed my leg in a sling and crutches for 2 1/2 years. I was not allowed to walk on my leg. Everything grew back except I am about 1 inch short in my right hip. I have had two children and everything has gone great until I turned 50. I now have pain in my hip, lower back, knees, and thighs. I also found out 10 years ago because of my shortness in my hip my pelvic goes out of wack and I have to excersie to put it back in place. I cannot carry anything in one hand I have to carry stuff in front me or make sure I carry the same weight in both hands. Also have found if I put anything in my back pocket it will also throw me off balance. I can walk around the house but not able to go to amusement parks with my grandchildren because the pain of walking is unbearable. With no health insurance I am really stuck with the pain. I wish I would have check for information when I was younger and kept my insurance. The doctor never said I would have problems when I got older.