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Author Topic: please help my daughter  (Read 1105 times)

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Offline smileytj

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please help my daughter
« on: October 25, 2004, 12:06:59 AM »
hi I found this board today and i was wondering if someone can give me some advice for my daughter.She is 16 year old and has been suffering knee problems for at least 6 years. She gets swelling under the knee cap area and now spread around the side areas as well. Ive had her to the docs at least 20 times. they did blood tests for cancer and rheumatoid athritis and physiotherapy. came back negative. The pain has become more frequent lately and shes in horrible pain nearly every day keeping her awake most nights crying. Sometimes her knees lock up and she falls and sometimes after a bad pain bout she has bruising comeing from under her kneecap area. All the doctors have done for her is pescribe pain killers but shes taking them all the time or she suffers unbearable pain. She is now working and had to change her job to office work so she isnt doing too much physical job. But when she does normal things like shopping she suffers for doing it.. ..she gets very depressed that there is no help for her and would do any surgery if needed to get rid of the pain but so far docs have fobbed her off with saying she will  grow out of it as she gets older..but its not true its getting much worse..she feels like an invalid..she loves keep fit equipment and has her own studio in her bedroom but after excercise comes pain  :( :(.. she has slept most of today due to being up all night.. im going to the docs yet again tomoz with her im going to try and demand an mri .. do you think anything would show up on that?  pleassssse can someone help her??? is there anything i can do to find out whats really wrong with her? shes a tough kid and not a baby acting for sympathy shes genuinelly in pain plz help me if you can?? many thanks in advance for any help u give me
kind regard
teresa

Offline Heather M.

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Re: please help my daughter
« Reply #1 on: October 25, 2004, 12:32:25 AM »
Where do you live?

I really think you need to bring your daughter to a large and well-respected orthopedics practice, the kind you find in larger cities and teaching hospitals.  The types of problems you are describing don't seem to ring any bells, except perhaps for Osgood-Sclatter's Disease (her age would be about right).  But that should be the first thing a surgeon looks at in a pre-teen child!!

Other possibilities could include Lupus, Lymes disease (both are auto-immune disorders that can attack the joints). HMS or Hypermobility Syndrome, which is a connective tissue disorder that is very rare.  She would have been a bit young to start it, but we've had patients here with PFS (Patello-femoral syndrome) set in at age 9 with severe, intractable pain that no one seems to be able to identify.

It's obvious that your daughter's case is outside of the norm, so when that happens you usually want to see doctors who see only complex cases--like an orthopedic surgeon who specializes only in knees, or a teaching hospital, which deals with lots of complicated cases.  The regular OS around the corner may be a great surgeon, but is likely a generalist (not a knee specialist) and he/she probably sees 'normal' stuff all day long.  You have to have diagnostic experience with the complicated stuff to recognize it when it comes across your door.

If you want to post what city you live in, likely someone here can recommend a highly reputable surgeon or practice.

Heather
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
http://www.flickr.com/photos/hmaxwell

Offline smileytj

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Re: please help my daughter
« Reply #2 on: October 25, 2004, 01:37:13 AM »
hi heather thank you so much for your quick reply :) :)
the closest hospital areas to us are wakefield and leeds
west yorkshire
thanks again

Offline Heather M.

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Re: please help my daughter
« Reply #3 on: October 25, 2004, 01:56:12 AM »
I'm going to suggest that you take your original post and copy the content, and move it down to another section that is more heavily trafficked on this web page.

I would use the 'crisis board' or the 'struggling with pain and rehab' section.  Because you don't have a diagnosis or even any idea.

The good news is that your medical care is free in England...the bad news is that many people on this board have really struggled to have their pain taken seriously, get referrals to appropriate specialties, and even to get appropriate therapy/rehabilitation after surgery.  So you're going to have to massage the system--work it hard, so that your daughter doesn't get lost in the shuffle.  I hope that someone can recommend where your daughter should go within the NHS system, or even for private treatment at least for consultation/diagnosis.

It's going to take a detective orthopedic surgeon, possibly working in conjunction with a rheumatologist, to unravel the mystery.  Don't settle for being seen by assistants and students and such.  It's so hard--I really don't know enough about the UK system to tell you how to get around it, but believe you will need a rock-solid GP to help figure out if you are dealing with just knees and so need an ortho referral; or perhaps a systemic issue like joint hyper-mobility syndrome (geneticist would be the next step for diagnosis, or potentially a rheumatologist); or potentially an auto-immune issue, which would go beyond the knees and require work with a rheumatologist (remember that a negative RA blood test is not definitive--if the doctor told you it was, you need a new doctor!!).  So it sounds like you're going to have to read up on all these possibilities so you can help steer your daughter toward the right treatment.

Hopefully, by reading up on patello-femoral syndrome (PFS) you may recognize the symptoms and so understand that you are dealing with poor knee mechanics.  That, while not great, is a best case scenario because in the hands of a skilled physiotherapist your daughter can strengthen the muscles around the knee and lead a fairly normal and active life for many years.  I was diagnosed at age 13, and while I did have to make some adjustments, I swam competitively for years, traveled all over, and was very active right up until my first knee surgery at age 31.  That was the wrong surgery for me, and I developed serious complications, which underscores to me the knee to have the RIGHT DOCTOR with the appropriate experience/background examine and diagnose the knee.  The procedure I had (lateral release) is something many surgeons do on many patients, but in reality it is only appropriate in certain cases and cannot do what it was meant to in my situation--it was meant to realign my kneecap to make it track better, but it just can't do that.  Many generalist (non-specialist, not 'knee doctors') OS's use and overuse the lateral release procedure.  If I'd been more informed, I would have known that and been able to avoid the inappropriate treatment which made me worse, and led to severe complications that I'm still dealing with.

So anyway, head on down to the sections I mentioned and post your thread there again--just copy and paste the text.  And put in your title that you are in the UK and need help with the NHS system.  I wish I could give you more infom, but I'm in the US and we have our own insurance woes here....

Heather
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
http://www.flickr.com/photos/hmaxwell