To be disappointed my scan was normal

[cantdothisanymor]

I saw a physio ages ago and was told I likely had a torn meniscus.

I’ve finally had the scan and the report says all is fine, just a small cyst. It could be a ganglion or a parameniscal. But it’s all fine.

I’ve got an appointment booked in with an orthopaedic consultant to discuss the scan properly but I’m almost sad that I just have to live with this pain now. For the last year I’ve been in agony, every step hurts, and now it turns out it’s just me being a baby.

I could cry, I really thought that I was about to find an answer and a cure. But this is just how I live my life now. I can’t imagine another 70 years of this agony.

I understand you are disappointed that the scan result is not what you were expecting, but you're being quite melodramatic and assuming you won't be treated.

I need a full knee replacement, can't actually straighten the knee. I was hopeful the surgeon could clean up the torn, frayed cartilage mess but he said there's a 30% chance he'd make it worse, so we agreed that wasn't a good idea. I'm too young for a replacement due to how long they last (first replacement 20 yrs, second 10 yrs and rarely can they do a third as they run out of bone). After 2 years I decided we'd do the knee anyway as it was impacting too much. However my hips are shot so need to do those first. Left done in Jan, right will be done in Nov. Hip pain refers to to back and knees so I'm optimistic the knee may be able to keep going for a bit.

I'm not trying to compete with you on pain, just explain where I'm at so you know I understand the pain and the impact it has on your life.

Pain needs to be managed. For knee pain, as noted by other posters, knee braces and the knitted supports actually help more than you think they would. Takes a bit of trial and error to find the ones that work for you and having a selection is good as what gives relief can vary depending on what's feeling aggravated that day.

Other management is a lovely weighted, heating pad I got from Amazon; a tens machine - absolutely amazing relief using that; when sleeping using a pillow between knees or behind the knee if sleeping on my back.

I take diclofenac, which is the generic name for voltaren. It was even used as part of my hip replacement pain management. It's great and makes a noticeable difference. In Australia you can get 25mg over the counter, but it's much cheaper with a script.

Finally, I work with an exercise physiologist. Only thing that keeps me mobile. For me, the pain at the back of the knee is caused by two nasty little ligaments. Hideous to be worked on, but the outcome is worth it. Overall, working on your muscle strength is the best way to suppirt and stabilise the knee.

Don't cancel your consultant appointment. See them, explain the pain is restricting your daily life and you have to stop doing activities because of it. If it impacts your sleep etc, then say that too.

There is nothing worse than that constant, deep unrelenting pain that you cannot get away from. You can't sleep as there is literally no position that is pain free.

I understand I was trying to help. I've had sciatica for years and from how you described it (radiating pain up and down your leg,knee) it sounds nerve related.

I hope you find the cause and can treat this.

I totally get it. I’ve been in bad knee pain now for over 2 years

physio didn’t help
cortisone injections was hell on earth and did nothing

eventually got referred for mri

waiting for results - dreading nothing being wrong - results are with gp whose refused to tell me, I have to wait to see physio which is still over 3 weeks away, been waiting 2 weeks from when they came in already plus waited 3 months for mri results to get to gp

i swear if I’m in this much pain for nothing ….! I really understand op - you want there to be a reason for the pain so it can be fixed!

Hi,
I might be completely barking up the wrong tree here. But reading your updates about cutting off your knee and pain meds not helping sounds like me at the moment. However, this is where we differ.

Mine started in my glutes around end of Feb, went to Chiropractor and it moved to back of calf. It’s a very long story, but the recent pain has been ankle, and foot for 5 weeks so bad that I’ve been bed bound. Like you struggled to get anywhere. A&E 4 times, rang 111 when I went to the bathroom and could not walk back to bedroom. My GP referred me for MRi and xray.
The results showed it is my back! Got a disc bulge on my nerve. I need either injection or operation. MSK team said it’s urgent and marked me as severe the spinal unit in the hospital downgraded it to routine! It’s a mess. I‘m off work, not left my bed for 5 weeks, missed so much in the last 4 months. I’m now paying £2,000 to try an injection private. It’s going on my cc as I’m so desperate.

Please do not give up! I rang my Gp and the hospital weekly. I’ve paid into the NHS since I left school at 16, am now 52! My point was, maybe it’s not the knee, and it’s coming from somewhere else. So go back and keep asking questions. Hope you feel better soon x

From Google:

When a ganglion cyst develops in the knee, its location and size are the main factors that determine if you will feel symptoms. Pain and mechanical symptoms occur when the cyst:
Pinches surrounding tissue: It can compress nerves, tendons, or the lining of the joint, causing localized pain or a feeling of deep joint tenderness.
Interferes with joint mechanics: Cysts situated inside the joint—such as those attached to the ligaments (e.g., the ACL or PCL)—can obstruct normal movement

I’ve had a ganglion removed in the NHS. It took quite a while to get there but it solved the problem. Mine was in my wrist, in the middle of the joint causing pain and restricting movement.
I was looking at a diagnosis of rheumatoid arthritis before the consultant decided he’d better stick me through a MRI scanner just to check as a bit of a lump had developed.
It wasn’t orthopaedics that removed it, I got transferred to plastics

The other thing that has really helped my knee is PRP injection. Very noticeable improvement from that.

Basically they take your blood, give it a twirl and inject the platelet rich plasma (PRP) back into your knee.

This is how I feel. I was so sure there was something - and it’s nothing. It’s basically an incidental finding. I’m just dreading my holiday now because I’ll be in pain, I’m dreading the weather getting colder because it gets so much worse then (I’m in my 20s and saying that! It makes me feel so rubbish!). I can’t wear heels, can’t wear nice shoes, I can’t do much because it’s just always painful.

At least now I know there’s no tear, I can go back to running and just push through the pain

I tore my ACL around 18 months ago and had surgery to repair it, 12 months ago. As far as they could see on my scan my meniscus was intact, but when they did the surgery, I had torn the meniscus too and it needed sewing back together. Sometimes it’s not always visible but I can relate to the pain (although I am pain free now since my surgery!)

I’m happy for you!

I think part of it is just all the trialling now. I don’t want to do all of it, it’s been a year already and I’m so tired of being in pain. It ruins things, it takes so much from day to day life because I constantly have to think about managing my knee. I can’t remember the last time I slept through the night

I give up. You are wilfully ignoring all the good sense and actual information people are giving you, in favour of wallowing in self pity. When it’s not even justified! Whatever kick you’re getting out of this I’m not sure, but you enjoy it. I’m out.

The report is purely a factual report about what they found. It's not the meniscal tear you thought, but that doesn't mean there is nothing to be done.
At the appointment to discuss it, you need to ask "what now?", and make sure that they are clear about the amount of pain you are in. It might be that you need to be referred to someone different, but hopefully they can help with that.

Many cysts do not need operating on, and do not cause any significant pain. However some do. I had a cyst inside my rotator cuff, which was trapping a nerve and causing shooting pains all up my arm. That did need dealing with, and it was operated on.

You seem to have decided that nothing can be done, without any evidence that that is the case.

Op, I feel for you, I really do, but you need to wait to see your consultant. Tell them you’re in terrible pain and ask for next steps to get you pain-free.

DH has had 2 new ACL’s over the years. His knee started becoming very painful again in February. A few weeks ago he went for an MRI. Came back all clear. He asked his consultant what was causing the pain. Consultant said it must be the hip causing him to alter his gait and putting pressure on his knee. He was referred to a hip consultant who did another MRI and confirmed severe osteoarthritis and degradation of the hip and strongly recommended a hip replacement which DH is having in October.

Now I’m not suggesting you have an arthritic hip, I’m just trying to explain that something is causing your pain and you need to keep pushing for answers. It’s not all in your head and you’re not an idiot.

Don’t do anything till you’ve seen the Consultant! A ganglion is painless but what it’s pressing on is not - I’m in Wales, we have the worst NHS in the UK and even they will treat a cyst that is causing pain (the cyst may not be painful but its causing pain due to its location). You have NOT exhausted your options yet, not by a long way

But it’s not painless, because you’re in pain!

so. I understand being disappointed that it’s not what you thought it might be, so there is no straightforward solution (when I had migraines I really hoped I just needed new glasses).
give yourself a couple of days to wallow.
and then pick yourself up, get ready for your appointment with the consultant (make list of questions, Can the cyat be removed , could there be another reason for your pain, can he please prescribe proper painkillers ).

and stop calling yourself a baby - how we talk to ourselves affects us and you’re putting yourself down a lot. Be kind to yourself, being in pain is awful.

My niece had ganglion cysts in both her wrists, they caused her much pain to the point where she has been awarded extra time in exams. She has had them both drained and is now pain free.

A ganglion cysts may not itself be painful but in certain areas it could cause pressure on nerves etc and therefore pain.

Go to your appt, explain about the pain.

I had a tear in my meniscus @cantdothisanymor but the pain went away when I realised one of the heels on my boots had worn more on the inside so I was pressuring the knee in the inside. Went away when I stopped wearing the boots!

Not one single person has said it's nothing or that you should push through the pain.

It was a few (10?) years ago but I had a ganglion cyst removed on the NHS. I was only 35 & it was very painful and restricted my movement and activities. I was on the waiting list for ages though and the surgeon was very dismissive of me but it really has been brilliant. I’ve got a big scar but no pain now and can walk properly again.

I’d push for a referral

Why are you completely invalidating your own experience and shaming yourself for it?

Very true 😕

And while I agree with other posters that it's important to keep advocating for oneself, I know from experience that it will be a hard journey for the OP.

There are few resources allocated to chronic pain. Even less so when a clear cause hasn’t been identified...

💐

I’ve found this book helpful. I’ve got a lot of pain - some explained by connective tissue disorder, but hip pain issue which has gone on for years and intermittent toothache. The premise is that most chronic pain, fatigue, and other persistent physical symptoms are not caused by structural damage, but by learned neural circuits in the brain.

https://www.waterstones.com/book/unlearn-your-pain/howard-schubiner/9781785046759

No, if you are in pain it's not fine. Maybe they haven't found out what's wrong yet, but it's not fine.

But your knee isn't fine,it's got a cyst which is causing you pain and you will go over options with the surgeon at your appt which you haven't even had yet! Seriously,you need to get a grip, have you been drinking because you're making no sense?

Or she.