1. Community
  2. Operations and surgical procedures
  3. Hip Replacement

My son had bilateral hip replacement after developing avascular necrosis from the chemotherapy and p

Posted , 9 users are following.

loni15321
loni15321

Hi everyone I'm so sorry that all of you are in this message board, dealing with pain, my 26 year old had to have bilateral hip replacement surgery 10 years ago, after a stem cell transplant to save him from high risk ALL leukemia. He developed avascular necrosis from the steroids, chemo and radiation. His left hip has given him problems since the surgery it seems the doctors always say that there's nothing wrong with it. The last three years it's been getting worse. I have taken into orthopedist and specialists they've tested his blood for Metals they've done X-rays and MRIs and tell us they can't find anything wrong. And he tells me the pain runs from the top back of his thigh under his butt and runs down to his knee and through to the front of his knee he can feel the pain ramping up and when it gets bad he's unable to walk for a couple of days without the use of a cane or sometimes a walker. I have been calling different doctors and Specialists that we've met over the last 10 years and while he was sick there were many times that I figured out complications that the doctors didn't but I feel at a loss. My son is afraid to get a new hip replacement because what if that pain is worse than what he's already dealing with. Plus he's still so young you can only get so many hip replacements throughout your life. I'm just hoping to find someone else it has circumstances similar to his. I wish you all the best and I agree with statements that say follow your instincts you are generally right the doctor's maybe we'll intended but they only see you for a tiny slice of time, they don't understand the situation the way you do.

2 likes, 13 replies

13 Replies

  • renee01952
    renee01952 loni15321

    Posted

    dear Loni, 

    warm welcome to this wonderful hippies forum ..

    I am so sorry to hear what you and your son are going through - He has gone through a lot already at such a young age ... Is the cancer in remission?

    I am not sure what to tell you ... It seems that you have done the full route ... How about a University (Teaching) Hospital??? - 

    Sending you and your son light and healing

    big warm hug

    renee

  • rose73925
    rose73925 loni15321

    Posted

    Poor Ioni, I really feel for you.  We only want our children to be healthy and have happy lives, and you and your son have all this to deal with.

    The nerve affected through his buttock along the back of the thigh to the knee is likely to be the sciatic.  Reflexology is good for that area - I practice nerve reflexology which uses slightly different points to classical reflexology - so maybe you could look someone up online where you live (are you in the US?) and see if they can offer help. The other thing to look for if you can't find nerve RX is someone who practises Vertical Reflex Therapy, pioneered by Lynne Booth in Britaiin and now practised pretty well worldwide.

    RX feels extremely relaxing, so,would help him with pain, although it actually works to de-tox at the same time.

    i hope so much that you can find a solution together, and avoid any future complications.

    rose 

     

  • libby96241
    libby96241 loni15321

    Posted

    I am just so overwelmed and sorry to hear your very sad story about the suffering of your very young son  and cannot offer any help but lots of empathy and support and love. I had stage three grade three cancer and chemo ,radiation,  and surgery ten years ago. I am facing a hip replacement in the next two weeks. The two procedures are seemingly unrelated.  I had and contiinue to  have side effects from the chemo including naropathy  and lymphedema, but there are there is a disturbing side effect that cannot be totally explained or understood by physicans, ....chemo brain. The oncologist did advise me that chemo brain is experienced by the more intelligent patients more acutely and intensely. I am not particulary bright but I had really extreme chemo brain and was unable to recall many common nouns which was frustrating and embarassing and went on for many months. I think my short term memory remains effected and  is really poor and I am not sure if this is related to the chemo or not. . The bottum line is that the doctors could not really account for or explain the memory problems I had. I m sorry that I cannot help you or even understand the fears and trauma your son and you are sufering from and that my circumstances are not similar or helpful. But I do think much of what happens after chemo is a mystery to the doctors and they really don't understand it themselves.  But keep trying...... and keep asking....... there is an answer for you out there somewhere

  • Tutuye
    Tutuye loni15321

    Posted

    Dear Loni am sorry what your son & you are passing through.

    While we have something in commen happy to share any thing

    Your son is too young but I sow a post 17 year old girl had new hip she is active

    May God help you to decide the right decision

    Hugs

  • kimberley38758
    kimberley38758 loni15321

    Posted

    Hi Loni,

    So sorry to hear that your son has gone through so much and still in pain.  My first thought is that it could be sciatica.  About 7 years ago I suffered with a herniated / bulging disc between my L4 & L5 vertebrae.  This left me with severe pain that radiated down the back of my left buttock and leg.  I tried getting steriod shots in my back, but it didn't help for me because the disc was too far gone and basically blocking the sciatic nerve.  I found a specialist and then had the surgery to trim the disc.  Before the surgery I could barely walk and was in a tremendous amount of pain.  When I woke up after the surgery, the pain was completely gonesmile

    I would advise that your son see a back surgeon.  He will need to get an MRI to either confirm or rule out that problem.  At least it's something else to look into.

    Wishing you both the very best!!

  • vicki_04437
    vicki_04437 loni15321

    Posted

    Hi loni

    So sorry to hear what your son and you have been through and are going through.

    My daughter has just turned 18, she had a left thr when she was 16, she has other problems which have lead to both her hips having problems, before the surgery she got to the point where she couldn't walk at all and was in such terrible pain, it all seemed to be resolved with the surgery.

    Unfortunately last October she started getting severe pain in her thigh and over her knee, finally after a real battle we're seeing a consultant, he is confused by her case and has discussed it with other surgeons, he thinks the pain is due to her replacement failing but others don't. She is having an MRI scan and then a bone scan next week so hoping we'll get some answers then.

    I hope you find some answers and some relief for your son, my daughter is similar to him and she really doesn't want another replacement, the thought petrifies her.

    Best wishes

    Vicki

    • renee01952
      renee01952 vicki_04437

      Posted

      hi vicky, 

      sending you and your daughter love, light and healing ..

      big warm hug

      renee

    • vicki_04437
      vicki_04437 renee01952

      Posted

      Many thanks Renee

      It's deeply appreciated, we're having some dark days

      Vicki

    • libby96241
      libby96241 vicki_04437

      Posted

      We have had health problems with two of our children and it is hard to not let it completely consume you and take over your lives.  I know how lonely and debilitating this can be. But the truth is things always change and this won't be forever. Please keep us posted as you try to get some answers and some hope in such a difficult situation that  far too many people do not understand and very few can  relate to you. .  

    • judith12644
      judith12644 vicki_04437

      Posted

      I'm so sorry to hear about your daughter. It's so sad and unfair to be in such pain when you're so young. Wishing her and you all the best.

    • vicki_04437
      vicki_04437 libby96241

      Posted

      Thank you, it does seem to consume all our lives at the moment, she has had such a tough time and it seems so unfair. I'm confident things will get better though and I'm very positive about her new consultant 👍

      Thank you for your kind words.

  • Soos2016
    Soos2016 loni15321

    Posted

    I am so sorry for all your son has gone through. My own son had AVN they think from predisone bursts for sinus problems. He's had 2 hip replacements at age 30 and is still recovering stamina and range of motion. 

    I hope you do find the reason for the pain he's experiencing. Please keep us posted.

    Aloha, Soos

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.