Symptom Free 9 Years After HIP OA diagnosis

ITLSusan
ITLSusan Member Posts: 74
edited 25. Sep 2015, 13:06 in Say Hello Archive
Hi,

My name is Susan. I'm 52 years old and was diagnosed with what was described as a classic case of Hip OA in 2006. The diagnosis was made by a leading specialist and was confirmed by umpteen health professionals over the years. In 2012 a physiotherapist estimated that I had at most a year left before needing a total hip replacement. This was based upon her examination - the hard end feel that suggested severe bone spurs and loss of cartilage.

Over the years I developed a host of issues - severe shoulder impingement, neck pain and stiffness, bunions/toe joint OA, 6 months of chronic, uncontrollable sciatic type pain - to name a few.

Fast forwards to 2015 and I am 100% symptom free. I no doubt still have degenerative changes in my joints but they aren't an issue. I run, weight train, do martial arts - I'm fitter and healthier than I've ever been.

All of this was achieved through physical therapy - correcting muscle imbalances. I ALWAYS suspected muscle imbalance but no therapist could figure it out and always insisted the problem was OA.

Did I cure OA? Was I misdiagnosed? Either way, my case was said to be classic so if they got either diagnosis or prognosis wrong with me they may have got it wrong with you too.

I'm trying to spread the word. We're browbeaten into thinking we can't be cured but maybe some of us can - my classic case WAS cured. Happy to share more details with anyone that's interested.

Susan

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi Susan welcome to the forum, we are a friendly bunch here and we hope you will enjoy browsing all forums,we are here to help and encourage you and each other.
    all the best Modonfriday
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Hello Susan and welcome to our forum :) It's lovely to hear you have regained your health following your THR and thank you for sharing it with us.

    It doesn't surprise me that other aches and pains have disappeared following your THR and exercise programme. When one joint is out of kilter we hold ourselves differently in order to 'spare' it, we walk differently and stress very many of our other joints and muscles as a result. You have taken the time and trouble to correct all this and it's worked :D

    I doubt you 'cured OA' or were mis-diagnosed though I do wonder if you are from outside the UK as, over here, they are unlikely to operate until it is bone on bone – or worse :roll:

    You have shown that it's easy to assume things cannot be improved. A defeatist attitude usually makes everything worse whereas a positive one can make life a whole lot better. That's not the same as a cure but it's a big help.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I'm pleased to hear that you are sorted, that must be a lovely experience and I hope it lasts. I have OA as a result of the joint damage caused by my auto-immune arthritis - of the two I prefer the OA because it is far more honest in what it does and doesn't muck my life up as much the other! My arthritis is a year-round treat, the PsA dislikes the hot and humid weather, the OA the cold and damp so it's a lose-lose. :wink:

    There's no doubt that keeping our muscles as strong and flexible as possible is good for supporting the joints so keep up your good work and I hope you never have to join us when in distress. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Thanks for your inspiring story, and, thank you for posting it even though you are doing well. I always wish people doing well would post a story also!
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hello Susan and thanks for sharing this, I always believe that we cant give in to this disease..I had a brilliant physiotherapy that sort of gave up on me because of this back..I have had the foot tracking many years ago and that helped. but my hips were to far gone..so I have had one THR...but never say die..I do wish you well for the future
    Love
    Barbara
  • ITLSusan
    ITLSusan Member Posts: 74
    edited 30. Nov -1, 00:00
    Thanks all!

    Stickywicket, I am indeed in the UK. You'd be surprised at how unreliable an OA diagnosis is over here.

    My case was diagnosed in 2006 by a leading UK specialist. He used accepted diagnostic criteria that is used throughout the uk. It was said to be classic. So whether he missdiagnosed or whether that it's simply not true that OA can't be cured - if they got it wrong with me it's possible they got it wrong with many others.

    I'm trying to share my story in the hope I find the people with similar stories to me so that my experience can help them. Hopefully BEFORE they go through 9 years of being told they have an incurable disease!

    I hope it's ok to share links to a couple of my blog posts? This is entirely a site telling my story and sharing what I learned - not a business site?

    This one will give you a bit of food for thought as to whether your diagnosis is reliable. I'm not saying this to worry anyone - rather to give hope if the diagnosis just isn't sitting well with you (it never did with me):

    http://www.impossible-takes-longer.com/blog/2015/09/15/are-you-sure-youve-got-osteoarthritis-think-again/

    This one describes my symptoms - pretty much all of which would have been put down to OA under current diagnostic guidelines. All were in fact the results of a single, complex muscle imbalance.

    I am NOT saying everyone can be cured. But it stands to reason that if my case was classic then others can get the same outcome as me. It's just a matter of finding them!
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    It wasn't the diagnosis that surprised me: it was the idea that someone might be offered a THR simply because a physio could feel bone spurs and loss of cartilege.

    Unfortunately, my own OA diagnosis is spot on. As is my RA one. Some of us are just wedded to arthritis :wink:

    Keep on exercising :)
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • ITLSusan
    ITLSusan Member Posts: 74
    edited 30. Nov -1, 00:00
    I'm not saying that surgeons would have operated on her say so - rather that physios, doctors etc aren't as knowledgeable as we think. You really do need to take their opinions and findings with a pinch of salt.

    I guess my point here was that GP's, Physios and surgeons are considered the experts when it comes to OA. They tell us we have OA so of course we believe them.

    This was a highly recommended physio - her prognosis could have had a hugely negative impact on my life. If I had listened to her I would be in a bad way now I suspect. I'd heard enough nonsense from physios, GP's, specialists by this time to take it with a pinch of salt. I'd already dis-proven most of what they told me. But someone not knowing how unreliable an OA diagnosis or a health pro's exam findings/prognosis really are might take it as gospel. It could stop them from searching for the real cause of their symptoms.

    The leading orthopedic surgeon, GP and a host of other physios were proven equally wrong. The xrays were proven to be meaningless. There is no test for OA - it's a diagnosis of exclusion. What is perhaps more important is to find out what they actually excluded in order to come up with your diagnosis. Have they really done all that's possible to rule out other causes?

    So who can you trust? How do you find out that your diagnosis is correct?

    The doctors and researchers can't even answer this question. They know they're failing badly but the best they can do is label your condition OA if you have joint pain with any morning stiffness lasting less than 30 mins.

    That's the reality.
  • OliverT
    OliverT Member Posts: 26
    edited 30. Nov -1, 00:00
    My understanding is that a lot of OA seems to respond well to changes in diet. We all have our own balance of what is right for us and what is toxic. For me - Grapefruit and red wine are kryptonite. Turmeric on the other hand is food of the gods. Well at least as far as my OA symptoms are concerned.

    Exercise is the other thing, and plenty of it. Not too easy to achieve when dealing with the pain and tiredness issues of chronic OA.

    Susan - you seem to have found a balance that works 100% well for you, I'd very much like to hear more! Pm or otherwise.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    I don't think docs, researchers etc are 'failing badly'. They're not omnipotent. Medicine isn't an exact science. They can't make us live forever. They do their best with the tools they have.

    You've clearly had a frightening experience and have spent a lot of money trying to get the best treatment and advice you could. But OA is an awkward beast. There are no specialists in OA. The treatment is lifestyle changes, diet and exercise, pain relief and, where and when necessary, surgery.

    It's possible you didn't have OA. It's not clear whether you even had an x-ray. X-rays can be misread so it's important to trust the judgements only of those qualified to read them. Physios have certain expertise but I've found the best work in tandem with the docs and don't go diagnosing off their own bat.

    In all my years on here I've never come across anyone else complaining of being misdiagnosed with OA. More usually people are desperate for a diagnosis, usually of inflammatory arthritis. I'm pleased you appear to have triumphed over yours. My gut feeling is that it will be temporary though I hope I'm wrong.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Tiswas
    Tiswas Member Posts: 21
    edited 30. Nov -1, 00:00
    Hi Susan
    I'm a little confused.
    In your 1st post you said:
    In 2012 a physiotherapist estimated that I had at most a year left before needing a total hip replacement.
    You don't actually say that had the operation and I am under the impression that you cured yourself without it.
    So my question is:
    Did you actually have a Total Hip Replacement?

    Regards
    64yo Male - Gout (at the mo!)
  • ITLSusan
    ITLSusan Member Posts: 74
    edited 30. Nov -1, 00:00
    Tiswas - sorry for the ambiguity. No - I didn't have a THR.

    The point I was trying to illustrate is that when we go to a professional for help we tend to take what they tell us as gospel. This particular phsyio was probably around the 10th that I'd been to see - each had a different tale to tell. She'd been highly recommended so I decided to give her a chance. By the time I went to see her I'd got several years of intensive research under my belt. I knew what she was saying was b*llocks and took it with a pinch of salt. I simply carried on searching for a cure - with my purse £50 lighter!! LOL

    But what if I'd gone to see her without any background knowledge or other opinions? Her prognosis could have altered the course of my life for the worse and I'd never find out that she was talking rubbish.

    I think a lot of people - if they really look into HOW their diagnosis was made - might discover that it's not quite a reliable as they think.

    Even the specialist that diagnosed me (a LEADING specialist in the UK) did nothing more than apply the diagnostic criteria that was valid in 2006. I could have done those tests myself for nothing and the results would be just as reliable (or unreliable) - instead I paid him £160 to do it. Because of his reputation, his findings carried tremendous weight. But in actual fact there was no real thought or logic behind is diagnosis. He simply cranked the handle and sent me on my way with a false diagnosis. £160 to spend 5 minutes doing a tiny fraction of the tests that the physio had already done for £30.

    It's tricky. I know a lot of people have come to terms with their diagnosis and they're settled into a happy life. But for those that have doubts - for those that WANT to fight it. Well, there's huge hope. The picture isn't as black and the future not as certain as has been painted.
  • Tiswas
    Tiswas Member Posts: 21
    edited 30. Nov -1, 00:00
    Hi Susan
    No you wasn't being ambiguous. You did state that it was a 'physiotherapists estimate'.
    It was some of the replies that confused me :?

    I know that you are a few quid out of pocket. But, what a result! Well Done You and thanks for recalling such an interesting story.

    Regards
    64yo Male - Gout (at the mo!)
  • Jen
    Jen Member Posts: 155
    edited 30. Nov -1, 00:00
    So pleased you are now pain free, fit and healthy ITLSusan. Its great news. Thank you for sharing with us here. :D


    I got a bit confused like Tiswas reading the replies. So do I understand this right?

    You didn't have a hip replacement. Your recovery was from working with a Physiotherapist?


    Its great if that can work for some people. :D

    A shame it may not for everyone though.
    flower2520paars.gif~c200
  • ITLSusan
    ITLSusan Member Posts: 74
    edited 30. Nov -1, 00:00
    Hi Jen,

    I didn't have a THR - my recovery was through corrective exercise.

    However, I got nowhere working with physios. I ALWAYS suspected muscle imbalance was the true cause of my symptoms (and I now 'believe' this is the case for many hip OA sufferers). I practiced karate for 20 years and all those years of one sided practice left me with an imbalance. I tried to tell the doctors this but they wouldn't listen. Insisted it was OA. I was always sure they were wrong but couldn't get anyone to believe me - except for private practitioners who had a vested interest in embarking on lengthily treatment sessions! LOL

    6 sessions with physio 1;
    36 sessions with a chiropractor,
    4 or 5 sessions with an osteopath,
    6 sessions with physio 2;
    1 session with physio 3;
    1 session with physio 4;
    6 months of weekly or fortnightly sessions with physio 5;
    10 sessions with a personal trainer that specialised in muscle imbalance;
    5 sessions with physio 6.

    That's the ones I remember. It got me nowhere. Some started out agreeing that it sounded like a muscle imbalance but all fell back on the OA diagnosis when their attempts to correct it failed.

    My point being that these imbalances are EXTREMELY difficult to diagnose and treat. Which explains why the NHS doesn't rule out muscle imbalance before diagnosing OA. I finally figured it out for myself.

    The physio I worked with for 6 months told me (when he learned that I'd finally fixed it) that physios aren't trained to identify and treat highly complex muscle imbalances. He also told me that treatment that requires patient compliance typically won't get funding for research or physio training because it's likely to fail. They want solutions where they can get fast results whether the patient does what is required of them or not.

    I tried very hard to get health professionals, researchers etc to look at my case so they could learn from it and use that info to help others. I was up against a brick wall. I was met with complete apathy. So now I'm trying to share my story (and details of what was really wrong with me and the cure) in the hope that I can help others that want to take the same path and try and help themselves.

    More info on my website here: http://www.impossible-takes-longer.com
  • Jen
    Jen Member Posts: 155
    edited 30. Nov -1, 00:00
    Its great you sorted things out for yourself ITLSusan.
    flower2520paars.gif~c200
  • ITLSusan
    ITLSusan Member Posts: 74
    edited 30. Nov -1, 00:00
    Thank you Jen. Hopefully not just for myself though. The mission now is to spread the word and find others that can be helped in the same way.

    No complete cures to boast of yet, but this from a 70 year old lady that's been following my website:

    "Dear Susan,

    The last time I was here, in Cyprus, in June this year, I had great stiffness and pain walking from the car park into the centre of Kyrenia, a walk of around 10 minutes. I was longing to get the THR op over and done with, so that I could be free of this suffering.

    But that was pre- Susan Westlake!

    Today I did the same walk, and was bounding along, overjoyed with what I could now do. No pain and a freedom of movement that I thought had gone forever.

    I have found that in practising Trigger Point Therapy it is a matter of trial and error. I am making precise notes of what works. The Cat and Dog poses in Yoga are helping me, I think.

    Do you think I am ready to start your specific exercises?

    Many, many thanks, Susan,

    Claire"

    The main thing for most people that share my approach to things seems to be the sense of empowerment. Knowing that they CAN do a lot to help themselves. When given an OA diagnosis we're browbeaten into thinking there's nothing that can be done. We just have to sit back and accept our lot. Very many people HATE to do that. It's the sense of helplessness that's far worse than any symptoms.
  • Jen
    Jen Member Posts: 155
    edited 30. Nov -1, 00:00
    That is interesting about the 70 year old

    Was the lady following the exercise programme you did for yourself or did she find her own way too?

    I think you have said a lot on this but not any description of the self help method or safe exercise routine that helped you or the 70 year old.

    If there is one ? What is it?

    Just the testing moves and much of what you have already said here repeated on your website which doesn't really enlighten people on the method. Nothing seems really clear. Only that you say you had a muscle imbalance and when you figured that out you cured yourself.

    I wouldn't want to give you my email address to access more details if that is your requirement. (mentioned on your website) I suspect many here wouldn't either.

    So it seems pointless posting this information here if you are not willing to share up front without requiring anything from anyone in return, its similar to an unknown sales site setting up tid bits of information and if you want to know more you have to give something in return.

    I do think many people find their own way in what is helpful to them.
    And for those that are helped through your website I am glad for them.

    People with muscle imbalance won't necessarily have OA or have a diagnosis of OA, I am sure with adjustments to a muscle imbalance people can find their way back to improved, pain free movement. Bowen technique and shiatsu do that very well. Where such methods aid recovery can only be a good thing.
    flower2520paars.gif~c200
  • ITLSusan
    ITLSusan Member Posts: 74
    edited 30. Nov -1, 00:00
    Every muscle imbalance will be different. You can't expect to follow a generic program and get results. The challenge is in reliably identifying what is wrong. The 70 year old lady I am working one to one with - along with several others that i've got to know via discussion forums. She's an absolute joy to be around - positive, proactive - just needing pointers from someone that's walked the same path before her. She got pain relief without any correction of muscle imbalance. The information that helped her is freely available on my website and has already been shared here.

    My website came about because I made a quick post on an OA forum 18 months ago to say that I'd found the root cause of my 'OA' - that it was muscle imbalance. Over an 18 month period others desperately looking for ways to help themselves found the thread and I've been sharing my approaches etc ever since. People found it uplifting and inspiring, many were helped by approaches I suggested. They requested that I set up a website or wrote a book to share my story. They found it hugely uplifting in a sea of negativity. So a couple of weeks a go I launched a website.

    I'll be honest - I find it therapeutic too. Vindication if you like. The biggest misery during my 8 year battle with OA was the sheer negativity surrounding the condition. I was ridiculed for thinking I could cure myself. Health professionals tried to browbeat me into accepting that I would get worse and had to just accept my lot. I was NOT going to let that happen and that made some people quite hostile. For some people their illness becomes their identity and they don't want to hear talk of cures. I'm not talking about people here - but you come across it a lot. It's a big gripe among the type of people that do gravitate towards my site. There is little support available for people that want to fight back.

    The message that most people find helpful is the idea that you CAN help yourself and cure isn't out of the question *in some cases*. I get lots of good feedback on the posts and material - including from people that have found me through my posts on THIS forum. So whilst you don't get it - some people think that already there is valuable information there. Would you deny them the help they value simply because you don't find it helpful?

    Plenty of people share their tales of woe to let others know what kind of future they could be looking forwards to. Why is it such a big deal that I'm sharing a positive story? I'm sharing the type of information that I was DESPARATE to see. Some will appreciate it - some have said they appreciate it. Others won't.

    Now - with regards to what I'm doing to help others achieve the same resolution as me:

    - I got my cure through relentless trial and error. Just hanging in and refusing to give up. So that's an option for others. My specific cure won't be applicable to all cases so some people will have to do it all for themselves. However, through 18 months of discussion with others looking to pick my brains I started to see patterns and worked out a model that described what I suspect will be the underlying problem in many cases. I think that could prove helpful to many.

    - I'm working hard to get researchers etc to get involved - to look at my case and help validate the model.

    - I'm working with people, volunteers, to try and learn more and refine the model.

    - I'm documenting everything. I'm trying to come up with a way of explaining everything so that people can take a guide and work though it, figuring out for themselves how to resolve their issues. This is explained on the website.

    It's an uphill battle, but I'm winning.

    Meanwhile, I'm constantly putting new info on the website. Sharing things that can help people get out of pain and start claiming their lives back. I'm getting good feedback so i'm not too dented by your view that there's no point in me sharing - or your insinuation that it's a scam!! LOL

    I hope that helps :)
  • Jen
    Jen Member Posts: 155
    edited 30. Nov -1, 00:00
    You seem to arrive at conclusions or assumptions that are derived from your own mental conditioning and judgements Susan.

    Its a pity you interpreted what I said that way. I was asking for clarification, as I was unable to determine precisely what you were getting at.

    What you read into that seems like you thought:-

    1) I didn't believe.
    2) suggesting I would deny others help
    3) Suggesting I was suggesting yours was a scam

    and whatever else

    Not so on all accounts.


    Each time you reply to a query you come up with a piece more information. But this information has to be coaxed out of you, it doesn't appear clearly. I accept this could just be the way I have understood things from what you have said.

    You didn't have a Hip Replacement.
    Nothing helped until you realised your problem was a muscle imbalance.
    You cured yourself by this discovery. Assume you did this by rebalancing your muscles yourself. (still don't know how you did this)
    Every ones muscle imbalance will be different (assuming they have one)
    and not everyone will have the same imbalance as you have so what you did (whatever that was) won't necessarily apply to others)


    From the reams of information you've posted, that's all I understand.

    I was sort of hoping for a list of techniques, methods, exercises you used posted somewhere including techniques you have shared with others like the 70 years old who have gotten so much benefit.

    Perhaps you have posted this on your website somewhere, I didn't see it, perhaps you have posted this already, perhaps you can provide a link to that particularly page?

    Incidentally I've been helping myself all my life, never give up that's my motto, I've gone from housebound to walking about with another illness, so I'm not exactly incapable of helping myself improve health.

    I enjoy reading about what has helped others, but its like me saying I cured my foot pain and you can too without telling you how I did that, what methods I used etc.

    I have posted here in several places what has helped me, so have many others. I haven't used used the word cured, although I guess I could have if I thought without doubt it would be the case for others who did the same as I did.

    I really am glad you are symptom free after 9 years Susan and I am really pleased for anyone else who can achieve symptom free also

    I always look forward to reading what things have been helpful to others.

    I still think you said a lot just to communicate you have become symptom free by muscle rebalancing. I guess that is the long and short of it.
    flower2520paars.gif~c200
  • Jen
    Jen Member Posts: 155
    edited 30. Nov -1, 00:00
    Just reading your other post OA of the Knee, now I am thinking,

    did you rebalance your own muscles by finding the right trigger point and massaging that to help achieve symptom free?

    How did you determine your trigger point? Was the point more painful or did you study the diagrams to connect where the pain is to the relevant trigger point?

    Its a bit like accupressure, accumassage and accupuncture points, that would be another therapy that some may want to try if they haven't already, again this may work for some an not others.
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  • ITLSusan
    ITLSusan Member Posts: 74
    edited 30. Nov -1, 00:00
    Jen wrote:
    Just reading your other post OA of the Knee, now I am thinking,

    did you rebalance your own muscles by finding the right trigger point and massaging that to help achieve symptom free?

    How did you determine your trigger point? Was the point more painful or did you study the diagrams to connect where the pain is to the relevant trigger point?

    Its a bit like accupressure, accumassage and accupuncture points, that would be another therapy that some may want to try if they haven't already, again this may work for some an not others.

    It's WAY more complicated than that, and that's why it's taking me so long to get everything documented.

    I believe that trigger points will be a significant cause of pain in many people. Regardless of whether the root cause of your problem is joint wear or muscle imbalance you WILL have muscle imbalances. Everyone that has pain, dysfunction or postural problems will have muscle imbalances. Muscle imbalances lead to trigger points. Trigger points lead to pain. Trigger point pain can mimic joint pain (They can also cause headaches, tingling, weakness, nausea and a whole host of other weird and wonderful symptoms). The pain is typically referred (so is felt at a different location from where the trigger point is situated) so this is why when you have hip OA you can end up with every joint in your body hurting - most of the pain *could* be treatable trigger point pain with the cause being treatable muscle imbalance. In other words - even if the hip OA really is coming from the hip it's possible the rest can be cured.

    I practiced martial arts for 20 years prior to being diagnosed with hip OA. I already knew all about trigger points so treated them from day one when I got the diagnoses. It kept me largely pain free and able to keep training hard despite some pretty major dysfunction. Others that I recommend this to all swear by it. It will rarely eliminate all symptoms but it can eliminate your most aggravating symptoms and it will almost always provide some relief.

    It costs nothing; you do it yourself; what's to loose?

    The downside is that 99.9% of the time it will only provide symptomatic relief. You need to keep treating to keep the pain at bay. The reason being that the trigger points are forming because of the underlying muscle imbalance.

    So if you want total cure you have to knuckle down and address the muscle imbalance. The nice thing about treating trigger points though is it gives you confidence that your pain is soft tissue related. When you know that you start to realize - "hey - maybe if I eliminate the muscle imbalance I'll be symptom free". Certainly attempting to achieve that can only do good.

    I'll share a post with more info on trigger points on a new thread.