Lower back pain years after Lcpd

Hi Nattie85,

I was wondering how your hip surgery went.

Are you pain free? Do you have more movement in you hip?

I am seeing a surgeon soon and would love any insight you may have.

Dear john26737, Your story had a very wonderful ending.  I am so glad that with your hip replacement you obtained relief from all that pain.   I was wondering would you be wiling to tell me if your hip replacement went good for you because the hip was not too deformed and the doctor could replace it without a lot of concern.  I don't mean that this life event was easy for you only that some people I have spoken with mentioned to me that their hip joints are pretty deformed. and that the doctors were sending them out to places like, UCLA and Stanford. They were told it would be a difficult hip replacement, the hip was deformed and the hip socket also.  Did you have any of these type of issues?  Also I am so happy that you have no more lower back pain, that is great.  How long did it take for you to recover from the hip replacement?  Thank you for all your information and help.  Best to you for a much happier painfree life.  Love, Joy, Happiness Natasha

Hi Chris, I hope you don't mind me replying to you. I have a 15 year old son who's Perthes journey started when he was 3 and he spent the next 5 years non weight bearing in a wheelchair, with numerous weeks in hospital on traction. He used to suffer a fair amount of back pain too. 

He has numerous learning difficulties but he hides these well.

His back pain has been worsening over the last couple of years, and more recently I've noticed him walking on tiptoe when his pain is particularly bad.

I was wondering if you can remember when you were younger if you found comfort from going on tiptoe. He's had numerous X-rays which hasn't shown anything, but something's not right.

i know what lower back pain is like, having lived with it for years myself from an injury, but it's not right for a 15 year old to be so restricted, he missed enough of his younger years. X

Tina i dont mind at all. that is what this forum is for isnt it? to spread knowlege to one another? i for one can definatlely feel for all of you. this disease feels like nobody knows whats going on in the medical world with it......simply because i dont feel they do. it leaves you feeling helpless. i can sympathise with you tina. i remember how my mother felt growing up watching me struggle and how she still feels today watching that and i am 37.as a patient you feel helpless, im sure as a mother it is 10 times as bad to watch this happen to your son. this might be a long response but ill give u as much knowlege as i can spit out. to answer your question tina.....i still walk on my tip toe. today it is pain that dictates that but when i was younger i did without even knowing. the brain finds the easiest path of resistance to straighten himself out. there is two reasons whether he knows it or not he walks on his tip toe. one is because the leg is shorter and the brain is trying to straighten him out. the other is because his mobility is restricted in the hip joint. its easier to just walk short strides for him on that side and tip toed to feel like he is walking like you and the rest of the world. its the only thing that levels his body out to be straight.my self for the last 29 years walking on my tip toe, i have a good solid 2 inch gash on the bottom of my foot that opens up periodically, it looks like u gutted my foot with a razor blade as deep as you can go. depending on what i do it opens up or stays closed because the skin is stretched from being bent constantly. my story is very similar to his. im just 20 years down the road from him. i think them not weight bare on that side for so long has hurt him. my back pain didnt come into play until i was in my mid 20s. now it is the main source of my problems in life. even ahead of the hip. it developed scoliosis and the sacroiliac joint will not move as well. i know his pain all to well believe me.  tina my advice to u is this, from experience. what ever you can do to get the leg discrepancy dealt with do it. lift, surgery to lengthen the short leg, what ever that may be. if it is severe like mine it will lead to a host of injuries as he gets older. do not let the doctors tell you otherwise. this disease leaves everyone feeling helpless because there isnt alot out there on the effects and the disease it self. i know first hand about people knowing nothing about it. through diligence and perseverance and running into the right doctor after 15 years i got lucky. get that leg discrepancy worked out tina and i think he will be a lot better off. when i got mine dealt with through a 1 inch lift in the shoe(half of what i need) it upset the hip and made it work so hard that now i do need a hip replacement. i cant say how his will react but it will make the hip work harder for sure. i hope this helps tina. i feel like i know nothing but reading everyones else posts here actually i might be a damn expert on this lol......hope that helps you tina....chris  

Thank you Chris. A lot of what you've said makes sense. He saw a consultant 18 months ago because of the pain, but he looked at the X-ray, did a quick examination and said he's fine, but I got the impression he wasn't experienced in Perthes. The consultant my son used to see for his Perthes was known as one of the best in the country, and believed in non weightbearing if the hip was staying in the socket, but my son turned out to be one of the most difficult cases he's dealt with because of the level of pain he suffered despite having full range of movement, we didn't know then that he had Hypermobility and was Autistic, so now it makes more sense. 

My son has had loads of MRIs looking for a reason for the back pain, they found he has a cyst (syrinx)  in his spinal cord at the base of his neck, which isn't responsible for the pain but has the potential to destroy the spinal cord at some point, so we have to look for symptoms.

I will take him back to the doctor again, it's difficult because he hides the pain, he learnt to do it to avoid any nastiness at hospital, so now he's scared if he admits he's in pain something will happen. He's had to cope with far to much in his 15 years and is having a difficult time at the moment as his school are trying to push him out after GCSEs, they don't want Special Needs children in sixth form but he wants to stay to do Photography, so I've got a fight on my hands. 

I hope you can find someone to help you, and give you some relief from your pain, I can sympathise myself as I live with a condition Fibromyalgia and lower back bulging discs, I use morphine patches with a whole host of other meds to help the pain, but it would be nice if one day we could find a cure. X 

 

i hope u two find someone to help you too tina.....just dont take no for an answer and keep being super diligent. this isnt something that all drs know about in the end. you have to find the right one for you. it took me 13 years to finally get somewhere. i will be in surgery for a new hip in 2018 finally. i do understand his pain. i have the same symptoms for many years and everyone looks at you like you have two heads. at the end of the day nobody feels that pain and nobody really knows but the the person going through it. i really hope u guys are able to sort this out for your son.....dont give up ever. thats the best motto, id get that young man more than one opinion for sure

As a kid I remember having traction put on every night at bed time, with my legs elevated attached to sandbags on pullies. I remember begging my Mum and Dad at night to not put them on. This went on for months and I remember the pain.

The upside post my surgery, after the plate was removed I have lived a very normal life and went on to be an athlete competing at the top level.

Now the back and hip pain is not good, largely due to the short left leg- not fun but glad there are others out there with stories to share. For the mums and dads whos kids are going through this you can come out the other side with a good result😉

hi michaelninness  i also was diagnosed with lcpd everything went well after regaining my strength i just wanted to find out if you there is any advice the pain in my hip is coming back and its so bad that i can barely walk aswell as bad lowerback pain it is getting so bad that i cant sleep .working is becoming harder with the pain