I was diagnosed at age 9 and had surgeries at ages 9,11, and 15. I quit running because i would get to about a mile and it would catch with pain. I love running though and am trying to lose weight so i am curious if running would worsen my condition?
View 2 RepliesMy son who is nearly 8yrs old has recently been diagnosed with perthes.
After a few hospital visits for pain firstly in his knee and then in his hip, being in terrible pain and being unable to walk or put an weight on his leg. we being told he has perthes.
We were advised to return to the hospital in 1 month ( next week) for his hip to be re x-rayed (his previous x ray was normal) and to look up the disease on the internet. Hence how I found this site and others.
My son is not currently in any pain unless he does too much where he then says it aches. his leg is very stiff and has no movement and his foot is turned in.
My immediate fear is will pain (which was horrific to witness!) return or is it possible that the pain is over?
Also has anyone been able to obtain an information booklet on the disease that is appropriate for his age?
My 8 year old son was diagnosed with Perthes last July and we were advised by his doctor to minimise weight bearing so we did the usual things - crutches, Wheelchair and such!
The perthes was caught at the very first stage and the diagnosis at his last visit was good and that my son should only use one crutch now!
However he is in alot more pain during the day and at night he wakes up in pain.
I have been refereed to Stanmore now but my question is is the pain due to the weight bearing and should all his pain be in his knee as his knee is swollen still from first diagnosis.
Is the knee swelling normal!
And do perthes sufferers usually have problems with wetting?
Diagnosed LCPD when i am 11 yrs old now i am 36. now i am having pains, is there any treatment for this ....
View 43 RepliesI was diagnosed very early around 5, so I just had to wear a brace with yearly trips to the Shriners hospital for ortho checkups, the only issue is my right leg is slightly shorter and have had to wear a lift in my shoe. My question is, has anyone had lower back issues possibly due to the Lcpd? I've had lower back issues for several years, I'm 36 is it possibly just older age.
View 19 RepliesMy son is 8 years old and has today been diagnosed with first stage Perthes.
His foot turns in when he walks and he has pain in his knee.
Please can someone tell me how to make life in the house easier!
He has been told not to put any weight on his leg at all and has been given a pair of crutches, but is a wheelchair better?
It may seem a silly question but I would like to get fitter - take up running - in my fifties and just wondered does exercise help with DD or make it worse? Anyone out there exercises avidly? I feel so depressed since my diagnosis - like my life is over! I suppose this is a bit dramatic but anyone got advise on exercise?
My grandfather is taking one and he is becoming way worse and just lays in bed all day and doesn't eat anything at all. And looks like he''s going to die soon. Only reason why I'm asking this question here too is because he has Alzheimer's too.
View 1 RepliesI have had perthes disease since i was 6 i was on the bed rest i am now 24 years old and i still have it.
i also have arthritis too in my hip and i also need a hip replacement now all because of perthes it has made my live very hard.
The other day (Sunday) I did something stupid and had a few beers (about 2 pints). Yesterday and today I noticed my symptoms have gotten a bit worse. Does alcohol make anemia symptoms worse?
View 1 RepliesI have been off work since the end of May and Cervical Spondylosis was diagnosed by the Occupational Health doctor via the Local Authority for whom I work. This discomfort and pain started and deteriorated whilst working on the computer at work. The OH doctor says it is age related and will not attribute this problem to the fact that I spend most of my working life in front of a computer. I have had physio and acupuncture and they say it is to do with posture. This treatment has not resolved the problem and I have now been referred to the Orthopedic Service. I am fighting this with the help of Unison. Has anyone out there had a similar experience.
View 16 RepliesI'm so used to having a couple of cups of coffee a day but since i started withdrawing it seems to make my symptoms worse...especially the buzzing in my brain. Has anyone else found this? Any tips?
View 24 RepliesI am 39 years old and was diagnosed with Perthes when I was 5. My treatment started with going into hospital and having casts put on my legs so that I could have a set of splints made which kept my legs apart with a bar in the middle, I wore these for 22 hours of the day for about 18 months, I think (it was a long time ago). Little bit awkward for walking but great if you pivot around on your good leg and get your older brother in the shins with the bar! The splints didn't work so they tried traction and that didn't work so I ended up having five ops from about the age of 7 through to the last one at 19. I must admit that I do get a lot of pain with it (by the indication given in the information on this site, I think my case was quite bad)and movement restriction, but I have worked my lifestyle around it and there are things you can do if you don't want to go for more treatment. I have decided that I'm not, so I do yoga which keeps my joints supple and helps me sleep, hot baths with lavender essential oil is very good also, keep your legs warm and don't let your feet get cold because I find that also causes more pain. I've had me fill of hospitals and ops, so I'm going to do my thing and let my hip(s) get on with theirs. My regards and best wishes to my fellow sufferers. Don't let other folk tell you what they think you should do (when they haven't got perthes) deal with it anyway you want to, after all it is your pain.
View 1 RepliesMy Son is now 21 yrs of age and has been battling with perthes since the age of 5yrs. He has bilateral perthes. the left leg was the first and this was treated with non weight bearing, callipers and restricted activity and is now near normal, at the age of 8 it appeared in his right hip which he had a surgery ( varus osteotomy) with further surgery to remove plate and pins. He still struggled with pain and had hinged abduction and leg discrepancy. He was then given a valgus osteotomy as a salvage operation and further surgery to remove plate and pins at the age of 14. He struggled on through school still in pain. He has now grown to 6 ft and this has produced more problems as his thigh muscles do not work probably due to the position of the femur that the valgus placed it in. The ball of the femur is mushroom shaped and the main pain is directed through the knee which gives way unpredictably causing him to fall. He has been told by a specialist that he is too young for a hip replacement and to grin and bear with pain management for as long as he can. He has been able to do office work part time, but even this is painful do to the sitting position.His left leg does give him trouble from time to time. Nobody actually follows perthes up into adulthood as once you reach 18yrs you are discharged from the children's hospital and left to the care of your GP. There should be a call back system for check ups even if it was to help doctors to understand the disease. I don't know if surgery benefitted my son or if treatment with callipers was better, all I know was I could not bear to put him back in them for another 3 years and did what I thought was right at the time. Has anybody around this age experiencing similar problems ?
View 4 RepliesMy GP gave me cerazette, and after taking it for a while I broke out in acne so stopped. But the pain then got miles worse. Last night I had an ultrasound which showed my left ovary has moved to the back of my uterus, causing me awful pain.
I am wondering now was it the Cerazette that caused this, or was it going to happen anyway and should I have persevered with the pill.
I have read so much conflicting information so I wondered if anyone knows?
Also, I have been told by 2 doctors that laparoscopy makes the problem worse, but one told me it doesn't. I am so confused.
Lastly, has anyone tried the estrogen metabolism tablet DIM Plus? I read the reviews and it sounds good but I am so nervous to try any other tablets.
i had my last period at the beginning of the year and although I'm happy to see the back of them I have since had numerous flare ups and the itching has been ridiculous, it has me demented through the night. Has anyone else had the same experience.
View 8 RepliesI had a colonoscopy with sedation (midazolam and fentanyl) in Chorley Hospital a few days ago and I still feel as if I had a PTSD. I read the information sheet and expected to be relaxed after sedation, with maybe some discomfort. When I was injected with the drugs (midazolam and fentanyl), I suddenly felt very anxious. I tried to seek reassurance, but the physician was talking to somebody else, busy preparing for gastroscopy. I think it could have helped if somebody asked me how I was at that point. I also had some trouble speaking – I think I was able to speak, but I could not hear myself so it made me feel very strange. Later on I read that difficulty speaking is a side-effect of midazolam. I felt quite intense pain during colonoscopy and the kind student nurse was talking me through it. I recovered well, I think, but I remember the whole procedure (so the amnesia that the leaflet talks about obviously doesn’t happen in every case). Next day I was very irritable and anxious and sick later on.
My main grievance is about lack of information beforehand concerning pain and the nasty side effects of the sedation. The leaflet mentions that you might feel ‘discomfort’. Of course you will feel discomfort – you will have a camera up your bum, what are supposed to feel? There is no ‘may’ about it. However, there is a difference between ‘discomfort’ and ‘pain’ and these words should not be used interchangeably. The leaflet and what you are told by the medical staff makes you believe that you will be drowsy and relaxed while medication works, and then back to normal after. I got quite a shock when I had the anxiety attack after the drug was injected and realized how vulnerable and helpless I was. I was also very unpleasantly surprised at how awful I felt the next day. Had I known this could happen I would have opted for entonox. Unless something changes dramatically in the way they perform colonoscopies, there is no way I’m having another one any time soon.
I would not like to discourage those for whom colonoscopy could be beneficial from having it. However traumatic it is, it is preferable to dying from cancer. However, I think that medical staff are not well trained in empathy (only student nurses seem to have it) and you have to be very assertive with them in order to receive honest information. If you are unlucky enough not to experience post-colonoscopy amnesia, the feeling of being at the mercy of medical people who are inflicting pain on you can be disturbing. It might be preferable to experience the pain whilst being alert and able to speak, and thus having some degree of control.
I know this sounds weird but my chronic sinusitis has me completely bedridden and has been for almost 2 years now and I haven't been able to work etc. anyway, my last CT scan showed massive inflammation and infection on the left side of my head primarily in the maxillary sinus.
It seems since I've been using the Neti bottle every day that I've gotten so much worse and consequentially my fatigue and weakness has been absolutely debilitating. My question is, has anybody ever heard of the Neti bottle or Neti pot making their sinus infection worse?? Thanks for reading.
My son was treated with a distractor on his hip 4 years ago now and it worked great .... unfortunately now he is starting back up with pain, in his hip - is this normal.....
My hip area is aching at it looks like my right leg is smaller than the other
View 2 RepliesI am ten years post a Perthes-related total hip replacement! It really has been a godsend for me.
Briefly- I had Perthes diagnosed aged 8, but they caught it late so hip ball was pretty badly misshapen- cue osteotomy, hip spica etc- followed by 2 more osteotomies before the age of 13. By 15 I'd developed secondary osteoarthritis and the joint deteriorated rapidly (v v painful) and pretty much as soon as I stopped growing my consultant opted for a full hip replacement (I was 19). I had a custom made joint designed after a number of scans, partly due to thickening of the femur from my previous ops, and it is a ceramic plastic composite (ceramic ball onto plastic cup I think).
The initial 3 months post op were fairly hard going, you are not able to move beyond 90 degrees abduction so can only sit of high seats- and need a special raised loo seat! I was in a student house at the time so it was a bit embarrassing but I was kitted out by the Red Cross who lent me all the stuff needed for those 3 months- my housemates got so used to the special loo they said they missed it once it was gone! :oops: But after lots of physio I can honestly say that it made the world of difference...within days of the op my pain levels were far below what they'd been, I was off crutches within 6 weeks, and cycling a bike again at 3 months (after not being able to cycle since 13!!)- and 6 months later I spent 3 months SCUBA diving in Malaysia!
At first I had yearly check-ups (x-rays), then every 2 years, until 2 years ago when I was discharged (at least temporarily) from my consultants care! The hip is still not showing any sign of wear- and I am active- walk a lot, have had 2 children with the new hip etc.- so although the initial prospect had been of it lasting only 10-15 years we're now hoping for 20. Anyway crossing each bridge as we come to it. The pain in my hip is 99% gone, but I do suffer a touch with my back and my "good" leg's knee- but both have had to bear the brunt of a lot as I grew up so it's inevitable really... And I see a good (private admittedly) physio fairly regularly to keep on to of things, and try to swim whenever possible...(but not breast-stroke- that's a big no-no for those with hip replacements!). I do still have a leg length discrepancy (2cm) which is partly what causes my back/knee issues.