Interpreting new medical information

How do we find reliable information and not freak out when given a new diagnosis?For those of us with multi-systemic conditions new diagnoses are pretty much par for the course, but our laid back attitude to new conditions is won from experience.

Weirder still is how we also have to deal with no clear diagnosis as this often means the continuation of confusion in the medical practitioners working with us.

This year I’ve experienced both!

I’ve been to see the UK’s top autonomic dude and been told I have POTSy stuff going on but not enough to be diagnosed with POTS. This is confirmation of autonomic dysfunction and how in my body it is also wreaking extra havoc with near-fainting (near syncope). Not that less specialist practitioners really know what to do with ‘autonomic dysfunction’ or what array of ‘interestingness’ that can result in.

I’ve also been to see one of the team at the UK’s top department for hypermobility and been told that I have partial hypermobility. After all my years working hard on my legs (for example I no longer have to work my kneecaps until they loudly *bang* back into place)! I am still very hypermobile in my core, though. This explains why even my breastbone has been subluxing in recent months. (Subluxing is a patient shorthand for sub-luxation which is when joints pop out and back into place, it’s a partial dislocation rather than full-on dislocation/luxation). So I received some instructions to get referred to physio’ rather than any diagnosis which would be clear to other medical practitioners.

Frustratingly the hypermobility expert noted that she didn’t see any signs of CRPS in my skin at all. I wrote to her asking for this to be amended in her report as although a CRPS expert would know that whether any ‘signs’ of CRPS are present or not at any given moment in time has no bearing on whether that patient has CRPS or not, she sadly did not deign to a) respond or b) amend her report. So her report effectively includes what looks like a query over my CRPS diagnosis which only experts would realise was unfounded and any other medical practitioner would actually take that questioning of the diagnosis on board. *sigh*

The latest info’ arrived long after the hypermobility appointment as a result of an x-ray which was requested by the expert to ascertain whether I had shallow hips. I’m going to use the resulting letter to show how I choose to filter search information online.

First rule of searching online: searching individual terms is handy for a clearer understanding. I don’t want to find lots of vaguely or potentially related information, I would have no idea whether what I was reading would be related to my personal situation or not, so first of all I only want to find the exact meaning for my body.

Second rule: use a reliable source with a clear explanation. Once again.. I want a direct translation, not a load of vaguely related gumph that might not even relate to my own personal situation. So no wikipedia, no tangents into something that includes the terms I’m searching, simply a good medical dictionary or medically grounded information website.

So, here’s the info’ from the consultant’s letter..

Letter, hip x-ray, part 3

 

Essentially I want to translate this key bit of a sentence:

“…minor dysplastic changes with minor degenerative changes in her hips.”

First of all – note that “minor” is used in both cases. Long-term chronically ill folk usually don’t panic anyway, I mean, what’s the point right? I wrote a post a while ago about the time I visited a cardio’ doc’ and he said he could think of nothing that would make my permanent near-fainting anywhere near bearable or functional except for a pacemaker. Even in a situation like that it’s a case of allowing the emotions to pass and then getting back to life. We don’t do our thinking when we’re emotional because we recognise (from that bumpy old road of experience) that our thinking is pretty poor under those circumstances. It’s just the way the human body works so don’t worry about that happening, it’s just the way it is. And anyone with autonomic issues knows that when the ‘fight or flight’ kicks in then we’re not to even bother thinking at all, coz that mechanism means we don’t have full access to our higher functions anyway. So, even if you receive a shock diagnosis…. allow yourself time to calm your nervous system down. Stop, sit, have a cuppa and don’t try to figure out what it might ‘mean’ because our brain is not equipped to do that until we get calm again.

So yes, back to looking at how to decipher medical info’, which we only do when we’re feeling calm…

“Minor” sounds positive, “degenerative” can sound scary. It would be quite natural to skip past the “minor” and focus on the “degenerative” but it’s unhelpful and inaccurate to do so. Once we allow our emotional response to choose the focal point then our imaginations start getting involved. Our imaginations are amazing things, that’s why some of the scariest horror films are the ones that don’t show you what is actually happening to a character at the time – because it’s way scarier to let our our imaginations do what they do. So leave the imagination out of it. We simply want facts. Just a translation. Keep focused on that because it is key to dealing with medical information in a manner which is most helpful to our health (both mental/emotional and long-term physical).

The initial question is: “what does dysplastic mean?”

We can type “dysplastic” into our search engine, but then we also have to remember that we need a reliable source with a straight-forward translation in medical terms so adding the words “medical dictionary” or “medical terminology” or something like that might help us. But even then the search will still find case studies, specific types of dysplasia, maybe even hip dysplasia which sounds so appropriate that it would be tempting to follow one of those links, but I just want a meaning for “dysplastic”. That’s all. I don’t want to read stuff which may be medically relevant to the subject but not actually relevant to my health or my body.
I can read around the subject after I have a basic understanding.

It is important to notice here that the information that we choose not to explore is at least as important as the information that we do choose to read. Restricting our initial reading reduces that chance of reading things which don’t actually directly relate to us and which might make us worry unecessarily. Choosing to look after our mental health and emotions at this stage is as important as finding out how to look after the physical health issue we are looking into. We deserve to be able to work through new information in a manner which is informative without adding extra layers of potential distress.

So I ignored pretty much everything that the search brought up because it wasn’t specific enough. What I did take on board was that it is a very vague term. “Dysplasia” bascially means that something is not entirely ‘normal’. It simply means that there is a standardised ‘norm’ for things and we do not fit that norm exactly. So in that letter I’ve basically been told that there are changes which have resulted in my hips no longer being described as ‘normal’. That is all I need to know at this stage – it is vague, and my hips are just different. But vague is better than wrong, so my careful filtering out of lots of info’ has done it’s job…

Many of the links included references to moles and cancer, imagine what could have been taken away from a search on “dysplastic” if I hadn’t been so determined to simply find a translation. Anyone in this situation could have started worrying that the changes are really scary, it would have been all too easy to make assumptions about what that letter meant, about what’s happening inside the body, what it might mean to future health etc. So yep, translation only – avoid all round-the-subject information until you are sure what exactly has been reported about your own personal body.

So, “minor dysplastic changes” meant that my hips had developed something different from the norm. The next bit says there’s some minor degenerative changes, too. But that’s it. There is no other info’ there to make it any clearer. And when you live with a complex condition where many possibilities exist then there’s no point worrying about anything unecessarily. Whatever is, just is. So all I want is some more info’ to clarify what I’m dealing with because key to working with this is to know what I’m working with, of course!

So I asked my GP for more information. She’s used to me asking for more info’ and she knows that I ask simply because I want to understand how to do the best I can for my long-term health. I live in the now, but that doesn’t mean that I don’t look after my body for my future.

The extra info’ the GP gave me is from the radiologist and is less of a potential emotional minefield as it simply requires translations of terms for parts of the body…

Letter, hip x-ray, part 2

The “femoral heads” are simply the top of the thigh bone (femur), and “acetabula” is the rounded bit of the hip joint that is part of the pelvis (plural of acetabulum so it refers to both hips in this case). Simple searches can uncover this information as long as you continue to refuse to get led astray. ‘Just the facts, ma’am, just the facts!’

“There is minor uncovering of the femoral heads but the
acetabula appear well formed”

So, interestingly my hip joint is not too small, which is what usually happens with dysplastic hips (see how easy it would have been to read information which is relevant to the words used, and even to the condition in general, but incorrect for my own body). So as the tops of the thigh bones are not fully covered by the joint sockets then I guess they must be too big, or is that another assumption?! See how easy it is! As my fabulous fellow blogger Isy Aweigh pointed out it could alternatively be as a result of my ligaments being too stretchy to keep things where they should be (totally viable in my partially hypermobile body), or it could be that I have a strangely chunky amount of cartilage in the mix, or even a mix of all three of these things. I don’t know because the information doesn’t specify. Whatever it is, whether it is a result of the changes over time, or whether the changes are something else and I’ve always had abnormal femurs/ligaments/cartilage is not something which is explained here. So that is unknown because you can’t assume anything when it comes to your health! Though the hypermobility expert has interpreted them as “dysplastic changes” in her letter so maybe she was privvy to more information than the GP and I, or maybe she made an assumption, who knows?!

The last bit of the radiologist report reads:

“Minor degenerative change noted with some sclerosis. Joint space is preserved.”

It doesn’t answer the questions I would have as a non-medically trained patient… ‘degenerative change to which bit?’ Don’t be afraid to ask your GP to explain things to you. And don’t be afraid to ask them to get more information from the expert in question if the issues are not fully explained.

In this case my GP translates the radiologist’s report as the tops of my thigh bones having the degenerative issues and my joint sockets as being a-ok. My wonderful nurse friend has also said that if it doesn’t specify where the degeneration is then it means that it’s in the joint space (which includes the cartilage and the ends of the bits of the bones that help to form the joint), but as patients there’s not really any way we’d have of knowing so asking medical practitioners for more information can be very helpful.

Whereas a quick search on “sclerosis” wasn’t actually very helpful. *sigh* The various links advise that it is a thickening or hardening of tissue and then go off on various different specifics which may not relate to my personal situation. Once again the handy Nurse Isy crops up to advise that sclerosis is basically scarring – tissue that has been damaged and repaired, but the repairing tissue is different to the original tissue, it’s thicker and denser – hence the thickening and hardening effect.

Knowing that the joint space is still good is great news as it means that the bones are not grinding on each other, which would involve further issues to be looked at if they were.

As it turns out, I’ve been taking high strength glucosamine with chondroitin for, oooh, about 12ish years now I guess, maybe more. It’s a good combi’ for cartilage repair (not regrowth) and even repair to some small fissures which can occur in the ends of the bones at the joints; or at least that’s what the research said years ago! It’s still said to sometimes help with joint pain anyway. So who knows… maybe that’s part of the reason the issues are still noted as “minor”. Either way, it’s been no bad thing for my body to keep taking the combo’, which is rather nice to know. 🙂

So, if this was your medical info’ would you be champing at the bit to find out more yet? Okay, okay!

Now that we’ve checked out the terms one by one and got a clearer understanding of the basic issues as they relate to the specific patient’s body, let’s see what wider reading on the degenerative issue can tell us…

A search on “degenerative hip joint” basically brings up Degenerative Joint Disease and advises that it is also known as Osteoarthritis. Oh. Right. That seems pretty clear then! Except it’s not – it turns out that they are not the same thing in diagnostic terms at all, and each have very specific criteria which at this early stage I would not meet. So I had figured that I had early onset osteoarthritis, and yet it was not the case at all. I am predisposed towards it yes, I have early signs of hip degeneration yes, but at this moment in time I am a patient experiencing issues with my hips, but I am not a patient with a diagnosable hip condition. Again, another example of how tricky it is to find truly accurate and reliable information online, and another whopping great example of how important it is not to over-interpret what we find. Keep it specific to you and your body, don’t expand the information to broader health issues because they may have nothing to do with your current situation.

I would always advise the same filtering system to be in place when you search anything on the internet, especially anything health related because the impact of false or even just tangential info’ can be so problematic for our understanding and current health as well as how we are to assess any changes to our lifestyle for long-term health.

Rule of thumb: look for a medically sound website which is not pushing one aspect or another. We want to know what works, or not. Not what sells. Remember… ‘Just the facts, ma’am!’, and just relating to your body.

I found a link when I originally searched which noted all sorts of different treatments from cortisol injections to surgery, and I loved the information in that link because it was also noted that many of the treatments enabled a short-term improvement at the expense of worse long-term issues. I immediately knew that I’d not be opting for any of those and that my existing approach of exercise (including strengthening), good nutrition, and medical/fitness support on hand if I need it would be my way of working with this development. I have just searched again and haven’t found that link. That just goes to show why our self-imposed filter system is so important in these kinds of searches.

As far as me having hip problems goes, it’s no biggie. Many people get joint issues developing from middle-age onwards regardless of any pre-existing health issues. I’m just starting somewhat earlier that’s all. And it’s not like I don’t know how to manage pain, or how important both physio-exercise and recuperation-rest is. So this is easy to take in my metaphorical stride (even though I’ve been stuck on the sofa for several hours recovering and resting after my morning physio’ earlier today, I can still metaphorically stride, right? 😉 )!

But my letter that I’m using as an example could easily have been perceived as scarier. In fact this example could have been scarier simply by handling the learning process differently and failing to filter out the excess of information which may not even be relevant.

So if you’re going to search medical info’ (and I recognise any ‘expert patient’ is going to do that at some point because we’re the centre of our health web and need to know what’s what).. be aware of the importance of how to search medical information, and of the importance of keeping the info’ specific to your body. Most especially be aware of the huge importance of how to filter out the less reliable information and that which is less specific to your body. And never forget to allow yourself time for the emotions first – medical searches are not helpful when we’re feeling emotional in any way. Allow yourself time first, then if you’re going to search for something only do so when you are feeling calm because that means that our brain is in a better state to filter and work through the information accordingly.

And finally, there is a footnote in the letter from the expert, did you notice it?

Letter, hip x-ray, part 3

“Should she continue to have significant problems despite that a referral
to a local orthopaedic surgeon is advisable.”

Would it have worried you?

Remember: this is a footnote for my Doctor. It is not a note for me to worry about. If I go to her at some point in the future to report worsening hip problems it simply gives her a pre-set starting point instead of a new round of referrals to ascertain where it is best to send me first. That’s all. And in addition it also confirms that I’m doing the right things, which is always great to know.

Hoping this helps a little bit,

From your friendly blogger who, medically speaking, might actually be… quite hip?! 😉
(I know, *groan* right? Sorry).

(Not sorry, really. Hehe).

x

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2 thoughts on “Interpreting new medical information

  1. Hey elle! It’s been a while since we spoke but it was great to wake up this morning and read your blog! Unfortunately I have no reports here of anything getting better with my crps, and I am still using my trusty walker and cane to get around. I’m working hard to try to regain strength but now that the crps is in my hip I’m having lots of problems with joint pain and bring able to use it much. One good thing is that I am 4 classes away from obtaining my Masters Degree in international psychology now! Is been really tough, both physically and mentally, but I’m really excited to almost be done! It’s an online program that is part time so I can do everything from home and do my best to work when the pain isn’t too bad and my brain is working (I know you have experience with this!!!)! Just wanted to say I’m so glad you are still putting out important and life changing info for other patients! Thank you for everything you do to help others in our position! We really do have to be our own experts because otherwise we’d often be left in the dark about our health. But wet also need to be careful consumers of information so we don’t increase our tendencies to catastrophize! I am so sorry to hear thatmedical professional refused to amend her report. My thesis is on raising awareness about crps in the medical community and I created a poster of the signs and symptoms of crps that is geared toward medical professionals. One of the pieces on important info on the poster is that the signs and symptoms are variable and can change with time!!! Many patients experience difficulties with doctors because the doctors don’t understand the way crps works! I don’t know how many doctors have said “well your legs look fine right now”. Thankfully mysigns and symptoms have been well documented but I’m always worried when having to see a new doctor that they may not be trained enough to analyze my situation correctly! 🙂 we have ti keep fighting to raise awareness in the medical field and to encourage patients to be their own experts!! I’m glad we are together in this fight!! I wish you all the best and must say I loved your hip joke at the end! I’ve always appreciated your ability to stay positive and funny through all of this! 🙂 you are truly an inspiration!

    • Carly! It’s sooo good to ‘see’ you hon and wow total awesomeness on the nearly complete Masters degree!

      I’m grinning so hugely reading your message. That’s one heck of an achievement on it’s own let alone with CRPS vying for centre stage all the time. I managed to work around the pain most of the time but the killer for me was the near-fainting related brain loss. In the end I couldn’t do any critical thinking at all for three months, and then of course I had waaay too much work to get through before the deadline. I did it, but when we’re this stubborn we just kinda do, eh?! I know how ridiculously hard it can be and you officially totally rock for what you’re achieving! \m/

      If you don’t have anywhere where you can get the info’ from your research out there you can always guest post here if you want to. I’m still working on setting up the international charity so there’s no website for that as yet, but future possibilities and all that, x 😉

      Meanwhile, back in the Batcave, hip pain is a biyatch eh? I now have a smaller hot water bottle (it’s actually in a heart shape posted from a CRPSer bestie! 🙂 ) and I find that it results in less pressure on my hip whilst still getting the warmth to it. Not that warmth is a magical answer of course, just that it’s all I can do really and any help is good. The other thing suggested by the pharmacist as a possible help is the gel ‘Flexiseq’. It’s not cheap, and it’s aimed at osteoarthritis joint pain in the knee rather than joint pain (and no idea if it would affect nerve pain) in the hip, but it’s the only gel on the market (in the UK anyway) which doesn’t have an anti-inflammatory in it (re the anti-inflam’s and their long-term impact). Crikey, what’s with me and all the brackets today?! Anyway I’ve tried it, I experienced some improvement but not much and it could have been coincidence! So for my methodology to be more acceptable I’ll have to try it a few more times, plus look up whether it could help with neuropathy, and let you know 😉

      Go girl! Good luck with all that you are doing. You are awesomeness in human form and I’m cheering you on and grinning like a loon, hehe

      x

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