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Need Advice Please

Posted , 4 users are following.

ck49ers
ck49ers

I read your posts with such admiration & sadness. It seems to be the same thing over & over again. A delayed diagnosis & constant severe pain, no more sports etc. Can any of you advice me please. My son, 13  6'1" 140lbs,  was misdiagnosed in the begining of December, went a month with his femour bone slipping, complete slip in the right & slipping in the left. He had the surgery begining of January. He is sill in complete pain. I have called the dr.s office numerous times. He at first said it was in his head rolleyes but then x-rayed him and said he will be in pain for a bit longer. It is almost 2 months post op, he is in physical therapy, and is still suffering so much. Is this typical? Is there any hope that he will one day not feel pain? He was active, extremely fit, always playing sports. The dr. has assured us that he will return to an active life as before. I feel hopeless. Is there any hope? Can you get better from this? Do any of you have any other underlining problem? I feel like we need to test for something else too, but I don't know what to ask to test for. Thank you for any advice you have to offer. 

0 likes, 11 replies

11 Replies

  • trolly-dolly747
    trolly-dolly747 ck49ers

    Posted

    Hi and sorry to hear about your son.  Are you in the UK or USA?

    Is your son on crutches toe touch weight bearing only?  He should not be walking on his bad leg, or put any weight on his leg.

    What sort of operation did your son have on the leg with the complete slip?  It should have been about a 4 hour op, so that they dislocate the hip, and put it back together again and use wires to hold it in place while healing.  Sometimes they do a much smaller operation, and the leg is left at an awkward angle and the child is left with a leg that they cannot always walk on properly afterwards.

    My son is 18 months post op and still on crutches whilst the femoral head re-constitutes.  While the bone is healing it is soft, and the weight of all the body on the hip causes it to collapse, which is why the child has to use crutches.  Also, my son had an 'external fixator' applied from the pelvis, down to the lower thigh, about 2 months after the operation, and this remained on for 4 months.  This was to take the weight off the hip whilst the bone goes soft.  Also my son had pamidronate intravenous treatment which has only been trialled on a few people in Sydney, but the results are quite good.  The treatments my son had were 'trial' treatment, but as there is nothing else, it was worth trying, but you need a good consultant who is prepared to do all this.  It is worth it to save your son's hip.

    Your son should be X-rayed every couple of weeks for signs of Avascular Necrosis and to see if the femoral head is starting to collapse - you should see the consultant who did the operation and not your doctor/GP as the local doctor's knowledge is not good enough.  You need a specialist consultant.

    If you want to get in touch with me, my details are with the STEPS charity website in the UK (charity for lower limb disorders in children) and they will give you my e-mail address to see if I can help you further.

    It is strange that he is still in such a lot of pain, as I didn't think there should be pain in the hip after the operation.  (my son did not have any) The only thing I can think is that he is not using crutches, that the femoral head is starting to collapse, and that the pins/wires used to pin the femoral head back to the femor are now poking through into his socket joint and this is causing the pain.

     

    • ck49ers
      ck49ers trolly-dolly747

      Posted

      We are in the USA.

      He had 2 pins put in on the complete slip & 1pin on the slipping leg. He is supposed to be walking w/o anything. The dr. said he could use his walking stick, but not crutches. I allow him to use crutches because it is too painful for him. He has had 3 or 4 x-rays since the operation. All look good so far. He's not due until the end of March for another xray. We are only seeing the pediatric orthopedic surgeon. I feel like he is a good surgeon but not a great dr. He lacks communication, so I feel like a crazy mom every time I call in. I just can't help but think there is something else going on. 

  • laura04216
    laura04216 ck49ers

    Posted

    it may depend on the severity of the slip and how long he was walking on it undiagnosed. i walked on my servere slip for 18 months i did experience pain for a time after. make sure he is trying to rest it aswell. as dolly has said there is cchances of necrosis bit this decreases after thr operation because when the hip slips it pushes against the arteries which can cause this, although if he has had his operation the risk of this will lower. I would go bavk have ask for a x-ray, I had a bilateral ( both hips) slipped epipthysis i walked on my left for 18 months, i am currently having alot of pain in my left leg and chasing up orthopaedic doctors.

    Dont stop pushing untill you get answers.

    laura

    • trolly-dolly747
      trolly-dolly747 laura04216

      Posted

      Hi Laura

      My son's consultant explained that the reason for the necrosis is that when the slip is severe, it cuts the blood vessels off to the femoral head completely.  Once the blood vessels are cut off the femoral head starts to die (as there is no blood supply to the femoral head) - it is a matter of only 8 hours before it is already dying.  My son had a bone scan a day after he was admitted which showed there was no blood supply, and the likelihood of re-vascularisation was low.  Once the blood supply is cut there is a very high chance of necrosis - regardless of the operation to put the femoral head back into place. When the blood supply is re-connected and the bone tries to heal itself, the old bone is taken away quicker than the new bone calcifies and that is whey you get the quick femoral head collapse.  The new bone is like jelly until it calcifies, and with the old bone taken away, there is therefore no 'scaffold' to support the femoral head whilst the bone calcifies - hope that this explains in more details for those who are interested!

      Some people have a slight slip and walk on it or 'limp' on it for months (like yourself), and others (like my son) have the severe slip happen quickly.  The reason for the quick severe slip was that he tripped up (caught is leg) twice in a very short space of time, which hastened the slip from chronic to acute on chronic.  And this is why GP's should refer a child with suspected SUFE to A & E for an X-Ray and not to walk on it, incase they trip over and the slip converts from a slight slip (that can be pinned back into place easily with no loss of blood supply) to a chronic slip with disastrous consequences.

      I would urge anyone to visit A & E, don't take no for an answer, with persistant thigh, knee, hip or groin pain in a child aged over 9.  You need to see a specialist paediatric orthopaedic consultant, who knows about SUFE, as the radiologist does not always know what to look for as it can be very subtle to begin with and can easily be missed.

      Ruth

    • laura04216
      laura04216 trolly-dolly747

      Posted

      yeh i understand the necrosis, glad that your sons got caught early, hope your son is healing well? has or is ur son to have his second hip pinned?. My sufe was a classed as a severe slip because my mum took my to the gps over and over and they just ssid i had growing pains and I was attention seeking and non of the gps were aware of sufe especially as it is so rare its even more rare for it to be a female thats why it had gone un detected for so long and I walked on it.

      The surgeon at my local hospital had not had experience of sufe before and we had to wait for specialists to come up from london to show the surgeon how the operation needed to be completed. I had my hips pinned they did want to take 2 inches from my femur, but once i was taken to a & e i was not to weight bare at all under no circumstance.

      laura

    • trolly-dolly747
      trolly-dolly747 laura04216

      Posted

      Hi Laura

      No, my son's wasn't diagnosed in time, we went to the GP and they said it was a pulled muscle, so his was an acute on chronic slip, the worst you can have like yourself.  So, he has been confined to a wheelchair and crutches since September 2013, and he is not likely to be able to stop using the crutches until September 2015, maybe slightly shorted depending on how the femoral head is calcifying.  This was why he had the external fixator - which was awful, had to change the dressings everyday etc, and also the bisphosphonate treatment to try and save the hip.

       I think that this is why I am so passionate about trying to help others and urge them to see a specialist consultant.   We were just very lucky that when it happened my son was on holiday in Staffordshire, and he was taken to North Staffs, where they consultant there specialises in SUFE.

      The right hip is not pinned, but we keep a close eye on it to check for any signs of a slip.

      Best wishes

      Ruth

    • laura04216
      laura04216 trolly-dolly747

      Posted

      have they advised you to have the right one pinned? i agree i feel passionate about it aswell, Im in terrible pain with mine at the moment with is what brought me to this forum, I have had to go to a & e today because i cant stand it, apprently my MRI shows there is no cartilidge left at all in tbe joint and its holding inflammatory fluid which is causing pain stiffness and restriction. Im just hoping this time I can push for a replacment it is affecting so many aspects of my life.

      Could i ask was your sons consultant paeds? as i will get in touch with him if not as im not to far from there.

      laura

    • trolly-dolly747
      trolly-dolly747 laura04216

      Posted

      Hi

      His right one is not pinned yet, as just pinning causes damage.

      They are keeping a close eye on his leg length, as he will probably loose length in his leg as the epiphysis and femoral head have been fused together and there is therefore no growth in this area.

      My son is under a paeditric orthopaedic consultant at North Staffs, he is well known in this field and his speciality is hips, SUFE, he still sees  a number of adults who were under him as children.  

      I would have thought at your age that they might have done something for you.

      Do get in touch with STEPS Charity and ask for my details and I can chat to you about it.

      Ruth

    • laura04216
      laura04216 trolly-dolly747

      Posted

      im hoping so Ruth, I have just qualified as a nurse so at the start in my career and I have a daughter so im needing to be active.

      I will give STEPS my contact details

      laura

  • 1inamillion
    1inamillion ck49ers

    Posted

    hi ck49ers my son now 13 years old has been going through this for 3 years 2 with the GP back and forth and now after the slip and has 2 screws in left hip and necrosis after the 2 screws were put in one was put in to far where they see it through his xray as he was in so much agony still in his hospital bed he had to under go surgery again to raise it out so even have low apinion of surgeons now and have a solicitor dealing with it as my son is so withdrawn and low self asteam he has been out of school for over a year now as well and barring on cruches i hear him crying sometimes and feel so helpless he last see his 3rd surgeon in january 15 who was rude and had no mercy and this is the surgeon who is doing the full hip replacement (Don't think so) i feellike none of them know what they are doing just passing him around from one to the other and stillno follow up appointment he is being left till it finally crumbles and in so much pain disgrace to the NHS  i now have a solicitor involved as my sons life is in ruins for there neglect mostly our GP for letting go on for so long if there is something i have learned from all this is that i will never have so much faith in the NHS again these are children with there whole life infront of them and knocked wright out of them i feel somuch for them 
    • trolly-dolly747
      trolly-dolly747 1inamillion

      Posted

      Hi, so sorry to hear about your son, as it is a familiar experience to my son, who has been on crutches for 18 months.  Where are you in the country?  Take a look at the facebook page for SUFE/Slipped Upper Femoral Epiphysis and you can have contact with people who are in a similar position to you and maybe you can get some advice on other places to go for the hip replacement your son needs and a second opinion.  My son had a bad experience with the GP, but the hospital have been fantastic.  The problem seems to be that this condition is still not widely known about and unless the surgeon has dealt with before, the outcome is not good.  The other place you can go for some help is the charity called STEPS.  Again if you leave your contact details with them, then I can give you a call to chat if you would like.

       

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