TIRED!
I nearly fell asleep eating dinner. A weekend of camping & a bad nights sleep last night – oh & not to mention the fact it’s only 2 weeks today since I had my surgery so I’m still healing – has finally caught up with me. Therefore, it’s probably best I don’t try & write anything intelligent.
Ok, so I don’t normally write anything intelligent – leave me alone I’m tired!
I saw my surgeon & she is happy with the wound & my progress. She explained in more detail, & even drew a very bad picture of what she found. Essentially the extra bone growth was not seen on the CT scan she had on the screen while she operated. She kept poking around waiting for something to pop thinking there must be a cyst, but it was all solid. Then she stripped down the tendon & behind was chunk of bone sticking out of the fibula head – so she hacked it off! Obviously it was more precise & skilled than that, & she had to be careful how far down she took it because it was close to where tendons & ligaments insert, & she already had to repair the one that was blocking her view.
At the end of the day it just goes to show you that no matter how fancy the technology is you can’t always trust what you see on the screen, sometimes you have to treat the clinical symptoms & trust your instinct. It has always been a solid lump, & a simple ultrasound scan suggested it was bone growth sometime ago. The question now is; was it an injury that healed badly? Or; Is it disease related? The surgeon is inclined to think that it is the latter & not the former because this is something my disease does, however, it’s supposed to happen in my spine not in my knee.
The main thing is that hopefully now it’s sorted & if anything like this happens again she will have a lower threshold for intervening. Now that everything is looking good I contacted my rheumatologist to ask if I can start my injections again. It will be another 2 weeks before I see him so he agreed that I could, especially as I’m already stiffening up & the drug will take sometime to build up again – sadly not in time for our camping trip this weekend.
We are all packed up, just need to throw the fresh food in the cooler in the morning & we’ll be off into the wilderness to share some funs times with a group of friends… bring on the marshmallows!
I have just had my first painkillers of the day at 8.20pm. I am very uncomfortable. I have rested up a bit this morning & played my guitar, but then I sorted out the camping equipment for the weekend (yes I am going so don’t try & stop me, I found an axe in one of those boxes so be warned). Made lists – of course – then insisted on going with hubby to the store to replace a stove & gas cylinders. After that we went straight to pick up the boys from bike camp. Then I cooked dinner, sorted the boys out for camp tomorrow, which included doing some laundry, & then I collapsed in a bath. Now I hurt – quite a lot actually. Isn’t it good to get back to normal?
I also stripped down my wound dressing last night to expose it to some good old-fashioned air. I can see now that it is about 2½ – 3inches long but looks pretty good, & hopefully it will fade to just a line (wishful thinking I know). It wasn’t quite healed in a couple of places so I dug out some steri-strips (paper stitches) to cover those edges up for another day or two. I’m still not getting it wet, which is awkward, but I’ll do whatever it takes to avoid any risk of infection. My surgeon has also left the two ends of the continuous dissolvable stitch quite long so they are catching on clothing. I did chop one off because it was driving me mad, & hubby said that was ok to do so, & he should kind of know. Hopefully the rain & cooler weather will stay away now until it is properly healed so I can wear shorts/skirts.
Mornings are getting a little challenging now, it’s 5 weeks since my last injection & my body is starting to stiffen up. If the surgeon is happy with my wound & progress on Thursday I think I’ll get in touch with my rheumatologist & beg him to let me start taking them again, otherwise it’s another 2 weeks before I see him again.
Off to see my physio tomorrow, it will be interesting to see what he makes of the knee findings…
I didn’t sleep that well, as you can imagine getting comfortable wasn’t easy. The industrial strength painkillers work well but I stiffen up quite easily so getting out of bed was challenging. They also make me a bit spaced out so doing anything constructive while resting was also difficult. Then there is the issue of not being able to shower because I need my wound to heal for at least 5 days. My BFF ‘acquired’ some thick plastic bags & tape that is used in the OR to cover equipment & keep it sterile so I’ll try one of those tomorrow morning. This morning it was hard enough getting dressed, I think a shower would have required a 2-hour nap afterwards.
While hubby ran around dropping off elder child at camp & attending an appointment we both should have been at, younger child & I snuggled up on the sofa & watched Matilda. We have read the book but had not seen the movie. Then, although I was feeling quite tired, we built his model C3PO. By lunchtime I was done & couldn’t keep my eyes open, so hubby took him out on his new rollerblades before picking elder child up. I crashed out for that 2-hour nap.
I must confess to having had a sneaky look at the wound incision. After learning the final extent of the surgery instinct was telling me that 3cms wasn’t quite big enough for her to do what she did. I was right, it looks to be more like 2, maybe even 3, inches down the outside of my right knee. It’s fine I really don’t care as I can already walk with my foot straight which I haven’t been able to do for about 9 months now. Although, that’s only when I do load up on pain relief, when it wears off I really do feel like someone has taken a hammer & chisel to my knee & walking is not fun – especially when you need the bathroom!
Hubby is showing very little sympathy when I omit doses, which is fair enough, when you are married to a doctor you really do have to be on life support to get any sort of loving care. I’m the same in return mind you, & if the truth be known I hate being fussed over. I have had lots of thoughtful messages, texts & phone calls wishing me well so I know that I can count on some good friends if I need them, even the dog is being more attentive than usual. Hopefully by tomorrow I will not feel so battered & tired, & I can at least sit on my sofa fort & do colouring.
Well, it’s happened before, & it’s happened again. Clinically I have looked worse than my imaging suggests & the surgeon has reluctantly gone in & found it was worth taking the chance. When I saw her right before going into surgery she was taken by surprise to find my knee looked worse again & had changed in shape. When she mentioned that she would try & keep the incision small I stressed to her that a scar was the least of my worries & I would rather she did whatever she felt was necessary to make sure she had the best chance of fixing it. By this point I was starting to feel quite nervous. All credit to the hospital in Richmond they were friendly, efficient, & professional. I can honestly say the whole experience was very positive.
When I woke I was quite sore, I vaguely remember my surgeon asking me to push my foot against her hand – something she had primed me for before I went in so she could make sure she hadn’t damaged the major nerve that runs along the area she was working in. It wasn’t until I was texting hubby afterwards & waiting for him to pick me up that he briefly told me that she did have to take bone away. He then explained it in a bit more detail on the way home that she had found some extra bone formation around the fibula head where the tendons & ligaments insert. This was not something she had seen on any of the scans. She ended up stripping away a part of the tendon to get to the area & then nibbled the bone away until it looked more like it should. She can’t be sure that this will be a complete cure, but had said that it definitely looked better & I would be pretty sore afterwards.
So far I’m not too bad, but I do have some pretty serious pain meds, but I can bend it a little & at rest it feels ok. I’m sure the next few days will be a little challenging but I am relieved it’s over & if I’m honest even more relieved that she actually found something that made it all worthwhile. Fingers crossed it will only get better from now on.
07.45 – Boys wait at the front of the house to be picked up by another mum. I have my appointment with the surgeon at 08.30 so she kindly offered to swing by & scoop them up.
08.25 – I arrive at the doctor’s office feeling quite nauseous & a little scared at what the outcome of this consultation will be.
09.25 – I leave the doctor’s office in tears. Not because there is nothing further to be done, but because I’m to have MORE imaging & a joint injection before she will contemplate putting me under the knife.
09.35 – Hubby is already late for a meeting, but we are driving past the post office & have a envelope to pick up which we know is our eldest new passport. Hubby reverses the car into someone which I feel is my fault – don’t ask long story – There is very little damage, the paintwork will polish up on the other car but the guy is being a complete tosser about the whole thing. I leave them to thrash it out & go to collect the passport.
09.50 – Drop hubby at work with his bike & leg it home because my rheumatologist is calling at 10.
10.05 – Emotional conversation with my doctor about the management of my knee, he is also suggesting that a joint injection is the only thing that hasn’t been done – there has also been some discussion about chopping of the head of my fibula off – I want to throw up at this point because this was also discussed with my surgeon. I suggest that he talks to her so they can agree on what pictures they want & if there will be any chopping at all.
10.20 – I’m in absolute tatters so I call hubby who I know is busy. He is & will call me back as soon as he can.
10.45 – I look like panda while talking to hubby. I am much calmer after coming off the phone.
11.00 – 14.30 – I write another chapter, do laundry, watch the rain fall & practice my guitar – which sounded better today.
14.35 – I leave early for school to pick up a few groceries on the way.
15.10 – I pick up my younger son & his field hockey buddy from the class next door. His mum is a teacher at the school, she gives me his hockey gear and we confirm the arrangements. This is the first night back at practice, I won’t bore you with the details but they changed the location, which has completely screwed up all our plans because the original location is at the end of our street – walking distance.
15.30 – Arrive home with hockey boys. They get changed, do homework & eat dinner in less than an hour.
16.45 – We arrive back to school, waiting for us in the parking lot is hubby, elder child, hockey buddy’s sister (who is the same grade as my eldest) & their mum, the teacher. I swop hockey boys for their siblings, hubby puts his bike on the back of our car, I had over school uniform & homework to mum and then drive back home again.
17.00 – 19.00 – I feed, water, & do homework with siblings, listen to guitar practice, wash gym kit after muddy track & field session, feed animals, & sort out lunches. Teacher mum drops off hubby & my younger son, both require defrosting – and they were wondering why I was offering to stay home and do the feeding & ferrying about part.
… & this will now be why I will also be drinking wine on a Tuesday!!
My knee kept me awake for 3 hours last night, throbbing like toothache so I was unable to find a comfortable position. I still have another week to wait before I see the surgeon & I just hope for the sake of those who have to live with me – or just pass me in the street! – that she will just go in there & have a look. I know that surgery is always the last thing any of us want, but this has been going on for 6 months now & I’m at breaking point with it. It’s getting worse again, swelling, protruding, & nagging away at me all the time.
Today was back to school after Spring break, I could see people looking at my leg to see if the brace was still there. I think many have given up asking, they see how much it’s worn me down. When they do ask I don’t have anything different to say. I hope in a week’s time I do…
How does a knee look dislocated, or out of place, & mechanically doesn’t move correctly, & yet 2 x-rays, a CT, and an MRI scan suggest it isn’t?
I’ve known for sometime time that this wasn’t going to be straight forward, my gut told me that. When the MRI suggested inflammation, a shot of intra-muscular steroids worked initially, enough that I could remove my knee brace briefly at Christmas, but it still wasn’t right. Next it was oral steroids, & finally a few weeks ago the joint was injected superficially. I have been wearing an industrial knee brace for 4 months now. I don’t like the knee to bend while being loaded (up or down stairs), especially if it also rotates (getting in or out of the car). It aches most of the time, especially after walking any distance. When I sit with my knees bent at 90 degrees, you can spot the protrusion from across the room, it is that obvious. It wakes me up at night if it’s bent for too long. It doesn’t really respond to painkillers, it prefers rest – which my life does not allow, & ice numbs it temporarily.
It has been a mystery to every professional that has examined it, until today…
The appointment to see a colleague of my own rheumatologist that was scheduled for 7 weeks time was brought forward to today. This particular physician is good at ultrasound, which sounds a bit basic when you consider all the other imaging I’ve had. It was difficult to pack my full history into a 5minute conversation, but he was able to get an idea of where I was regarding my disease. Then he put the probe right on the bony prominence that is also very tender. What he clearly saw was bone, extra bone on the head of my fibula. Nothing was out of place; there wasn’t any obvious inflammation, just unusual bone growth. Lying on top of that bone is tendon, now under tension because it’s being stretched & rubbed on bone that normally wouldn’t be there– he described it as ‘runners knee’ without the running.
He has never seen before, & clearly nobody else had so that’s why it’s been difficult to diagnose.
YAY! Finally, a diagnosis. But what about treatment?
If this was a real runners knee, rest, ice, non-steriodals etc. All the usual things you would expect for a sports injury, but this is not a real runners knee, it’s disease related. The treatment will only help with symptoms, it won’t stop the bone growing. In reality, unless my orthopaedic surgeon has any bright ideas, like shaving the extra bit off, I’m stuck with it! So, if my writing doesn’t make it into the spotlight, my unique knee will! It will be presented to other professionals, hopefully on Friday, at a radiology meeting. Maybe somebody else has seen something similar, or can suggest some other management.
I succeeded in holding back the tears until I left the room. Thankfully my husband was with me. He always tries to stay positive in this situations – one of us has to. I have always had a feeling deep down that this would go under the knife, I don’t know why, I just did. Maybe because of the way everyone looked at it, curiously worried at what they were missing. The thought of someone shaving my bone makes me feel physically sick & very emotional. I can’t begin to describe how upset I am, & overwhelmed with anger at having to deal with more pain and discomfort.
At what point is it decided that I’ve suffered enough?
louiselindley 