lululocket's TTT, 8th March 2012

[captainruss]

Lulu,

Keep up the good work!  I am amazed at all of your progress.  I had a question so I was sending you a PM.  I just returned from the third OS to see my 14 year old daughter.  We are making progress....as we have moved beyond the Chondromalcea and Lateral Release recommendation.  OS#3 was a partner to OS#2 and he was very clear that a LR would do my daughter great harm.  He did the rotational examination and says she is Rotational and Angular Deformity, closed dislocation of the patella, and a Genu Varum.  He recommends she have involved CT scans to measure the hip and knee rotation and eventually a Patellafemoral Osteotomy.  I actually could not believe the first two...as OS#2 practices one door down from OS#3 and if I had taken my daughter to either of these guys six months ago, I would have agreed to the LR and minimally invasive surgery. 

Thanks to KG, I am learning what to ask.  I so badly want to take her to see one of the Giants....but despite scoping out several local banks, I have not discovered one that a one legged chubby guy has a snow balls chance in Florida weather of robbing with success!!!  If any of you hear about a Florida bank being robbed by a guy with a severe limp....disregard...it was not me!!

I think I have my jet skiis sold and will plan a trip in the next couple of weeks. 

Anyway...sounds like you are doing well.  Keep working hard at PT!

Russ

[lululocket]

Russ's PM was just asking who my surgeon was, which I'm happy to be public.
My OS is Mr Andrew Davies in London, who works in the NHS at Guy's and Thomas' in London, plus some of the HTA private hospitals in London (Lister, London Bridge). If there is anyone looking at OS's in London who wants to chat about my experience, just send me a private message.

Russ, I am sorry to hear about your daughter's mix of OS's. If it makes you feel better, at least she is getting help young because of YOUR fight for her. I started dislocating age 16, and didn't get a diagnosis until I was 22. I'd seen plenty of NHS doctors, and A&E staff, and physiotherapists, and every time I dislocated they just patched me up until I could walk again and then sent me on my way with no advice, and every chance of it happening again (which it did). That damage really builds up, and it is great that you are looking after your daughter now, rather than after more damage happens. It was only when I saw Mr Davies aged 22 that he started talking about WHY I dislocated. The trigger for going back to my GP (privately through work) was a day when I had to stop halfway down a flight of stairs to the tube because of the pain, and I thought "this is not right, I can't keep going like this".

I've come a long way from that point. Although my knee is pretty sore right now, I can already feel that the fundamentals (i.e. ignoring what I can tell are bruise and swelling pain), are feeling less painful. The grit and energy and grinding are going away! Hooray!

This morning I am just feeling so thankful for the treatment I have had access to. Although I worked hard for many years to join a great company with (as my OS put it) 'gold-plated health insurance' (and worked very hard for that firm in a tough climate), I have been truly blessed with access to care. I am grateful to live in a developed country where I can be treated, to have got a diagnosis after 6 years, and treatment that so far seems to be appropriate. My insurers have also been fantastic. To give you an idea of my experience, I spent less than 10 minutes on the phone to them this time, and got pre-approval for 'anything Mr Davies wants', and (because I already knew his protocol), I got specific approval for a pre-op MRI, another visit to Mr Davies, the operation, up to 2 nights in hospital, 10 sessions of PT, the follow up appointments with Mr Davies, and the 6 week xray. No paperwork required, I just rang them for 10 minutes, AMAZING! The guy on the phone was very sympathetic yet still professional, explained all of the policies and procedures, what paperwork I'd be sent, and wished me luck. When the hospital called me with some confusion over something the day before my op, I rang my insurers to just double check my approvals and actually got the same guy who reconfirmed and offered to call the hospital for me if necessary. (Aviva for the curious).

Although there have been some personal costs (LOTS of taxis getting to work, plus some trigger point massage and craniosacral therapy), we're talking hundreds of pounds, not thousands, so I have not had to limp into any florida banks!

Russ, you and your daughter are in my thoughts and prayers. Until I found my OS I was so worried all the time, and not having a diagnosis and plan was really tough to deal with. Keep going! You're doing the right thing.

For those after inspiration, at the moment, this is cheering me up and making me feel optimistic about life
http://tenlap.com/

[lululocket]

Day 17 Update

Yesterday I had two friends over and my parents did a BBQ which was so nice. I felt more like myself again, and much less of a patient. I gave myself a bit more rest and only did 2 PT sessions instead of 4, partly because of visitors and partly because I was so tired by the time they went home!

My ROM is no better in total, still maxing out around 80 degrees, but 0-70 are getting much much easier, and I can do 70 with an unassisted heel slide now! Unfortunately at 80 the limit is pain at the surgery site, rather than tightness in the quads, so I’m backing off there.

My quad sets are not much better. I managed to make the knee click earlier from a quad contraction which led to me ending that little session early, but I’m trying to keep it going a little and often in between my main sessions. I think I need a bit of brain work as well as muscle work now, so I’m trying to keep my hands on both legs just above the knee to really understand and visualise what is firing and what I want to fire!

I tried sleeping without the brace for the first time, but I think the improvement in comfort was offset by the general sense of instability, so last night I went back to the brace. I am back in bed today instead of downstairs, and can see a guy in the park with a knee brace just like mine and crutches, slowly making his way around the park - I’ll talk to my physiotherapist tomorrow but I suspect he’ll want me to aim for that soon!

The scar is looking ok, although I’m looking forward to a few days time when I can start putting lotion on it. My bruises are coming out for spring in plenty of colours, as you can see below, and the worst one is on the back of the knee which you can’t see - a really solid bloody purple colour, about 7cm diameter! Thankfully not painful though. The swelling is also doing a good job of coming down slowly but surely, with ice once or twice a day, and elevation for at least a few hours. Slow but steady is how it all feels right now. Picture time! The stripes all along my leg are from the TED stockings by the way, not bad picture taking!






Also, to give some light relief from those rather bruised pictures, here is picture of one of my cats. My own cat, Coco, I am enjoying seeing at my parents’ house, but this is Lionel who lives with me normally (he belongs to my housemate). I miss you Lionel! Don’t visit though, Coco couldn’t cope!


Bye for now,
Lulu

[lululocket]

Day 22 update

Yes, that's right, now over three weeks since surgery! As so often when we are in an unusual situation, it seems simultaneously to have passed very quickly, and also feels like a very long time since I was going about my 'normal' life. The garden has moved on apae, the daffodils have come out and disappeared again since surgery!

I'm reminded of someone else's comment - my IV mark has still not totally healed, so it's not a surprise that my knee still has a long way to go. However, there have been a few little breakthroughs.

Firstly, I am now allowed to sleep without a brace, and have suddenly leapt from getting 8 hours sleep to 10, which I guess demonstrates how much it was bugging me by the morning. I'm grateful for those two days of getting a few extra hours in, and hopefully it will continue.

I also took the TED stockings off yesterday, and it feels like my legs are breathing again. There is plenty of dry skin on my legs as there hasn't been as much sloughed off in the shower as normal, but I'm cracking out the vitamin E cream to help matters.

I'm also allowed to mobilise the scar now. There is a hair which seems to be growing through the middle which I might manoever out with tweezers later, I haven't decided yet. One of the keyhole wounds and the top of the main scar are a bit stuck underneath and my physio has asked me to try and wriggle them free, but it's still pretty weird. I'm also covering it in vitamin E cream (after my last surgery my OS said I could put it on 2mm thick!). My bruises are also getting plenty of arnica.

ROM is going really well! The pain is all at the surgery site which I still find alarming, and it is very sharp as we try to stretch through, but my physiotherapist is really encouraging. Today we finally cracked 90 degrees! He measured 91 with the goniometer (new word!), and then later we got up to about 95 (by eye). It hurt a lot though, there was lots of deep breathing and a few tears.

Quad strength on the other hand is a bit more of a problem. I'm really trying to be positive - I know that I have rebuilt this leg before. However, I'm also feeling pretty tired. My physio has suggested a few tricks like really visualising the muscles, squeezing the muscle with my hand (so that it naturally pushes out against the pressure), and today he suggested actually slapping the leg to get the muscle to realise it's there! Oh dear. Has anybody out there got some of their best tricks?

Back to work (from home) next week - I need to sharpen up my brain!
Lulu

[lululocket]

Day 29 update

So yesterday I passed the 4 week mark. Week 3-4 has not really seen a lot of change, although I'm clearly getting more comfortable moving my leg around - instead of sleeping with it like a dead weight, I'm waking repeatedly as I move it! Slightly annoying really!

I started working from home again on Wednesday and Thursday. I was only meant to be doing 10-4, and on the first day, at 4.10 I went to sleep for over an hour! All I did was sort out all of the emails I'd missed, I was not very productive and yet completely destroyed by the day. Thursday was a bit better, I managed 10-5, and spent at least half of that time being vaguely useful. I've got lots to catch up on though, it's difficult to know where to start. I mainly work with just one other person, so he's been really busy!

I'll probably stick with 10-4 or 5 for a while, since I'm not sitting in a chair yet and get uncomfortable quite quickly. Starting a little late means I can do a proper physio session in the morning. Officially, occupational health also said I can take up to two hours for lunch rather than just one hour, since I have PT to get through as well as going for a little walk and having lunch and a rest.

I also had another PT visit, with a different physio as my usual one is on holiday. We unlocked the brace to 60 degrees, hooray! I haven't quite managed an SLR yet although it is feeling much closer, and I'm hopeful. I could just sleep for hours though - I had 10 hours last night, and I'm now on a sofa and could drift off again. I'm also getting a bit bored of PT, I'm doing loads and it doesn't seem to get much easier. My whole leg has been shaking with the effort of trying to lift it for the past few days of attempts, but the muscle just doesn't seem to respond!

Slowly slowly.

On the bright side, with my partial weight bearing (20kg) and brace unlocked to 60 degrees, the past two days have meant some much better attempts at walking with my crutches. Although I'm much slower than when it was braced straight, I'm getting a more normal gait, and I can put weight through as I bend, which is perhaps why I'm so tired. Hopefully it will wake up a few more muscles so I can get that SLR soon!

Happy Easter all.

Lulu

[lululocket]

Day 30

Well today I kept my brace off all day (didn't really go anywhere). I should probably put it back on tomorrow and do some walking with my partial weight bearing to practice.

But right now I just want to say ARGH I AM BORED OF PHYSIOTHERAPY WHY WON'T MY LEG LIFT GET EVEN WHEN I PULL A SILLY FACE

Ahem. Well, my physio did say I needed to get angry. One more session left today why oh why.

[captainruss]

Well, the last PT person that told me to get angry then asked me not to come back!!  He kept saying he felt my pain.....finally he did feel my pain....bad Russ!!

Keep going Lulu...you are doing great.  If you find anyone out there with a 31 inch inseam right leg they want to donate....I am willing to pay good money!!!

Russ

[momof436]

Hi! Hello, Now I stumbled across your diary too.I did yesterday but I hadn't really time to comment. Sorry I did not see it before I have been preoccupied with my own thoughts I guess.Your Leg is looking good! Your scar is not like mine, mine has that old fashioned lace look, I wonder why? Also you seem to be ahead of me  movement wise although you had your surgery a bit later, I wonder if that has something to do with hospital cultures in different countries perhaps, or perhaps you had a different operation, I have not been allowed to put weight on or go to work for a whole 6 weeks, and I was not supposed to go over the 60 deg mark the first 6 weeks either.

I have also been so ridiculously tired  after the operation, not sure it has anything to do with the operation, but the day after tomorrow I will have to be getting up at 6 again to get the kids ready for school and then go to work, I don't know how I'll manage that to be honest, I will be so tired! Today I got the kids up and made them ready, then went back to bed : / but I guess I did not sleep very well last night. 

Lovely cat b.t.w.   We also have a cat a stripy house cat
Good luck with lifting your leg up! 
M

[captainruss]

mom,

The fatigue is a standard complication.  Has your OS prescribed any supplements for you?  You must take those supplements to counteract the inflammation and complications from the pain medication.

Pain is your enemy so do what you need to so as to survive.

Russ

[momof436]

mom,

The fatigue is a standard complication.  Has your OS prescribed any supplements for you?  You must take those supplements to counteract the inflammation and complications from the pain medication.

Pain is your enemy so do what you need to so as to survive.

Russ

Hello Russ and Lulu. Good morning to you. Hope you don't mind me replying to Russ just quickly. OK. thanks I did not know that, no I have not had any supplements prescribed. I stopped taking the pain meds weeks ago cause they were causing me very much fatigue and making me dizzy. I have felt fatigued before my surgery as well though I think it is my recently discovered dust allergy, I am plagued with it's symptoms and me being "out of order" this house became even more dusty. I take a vitamin supplement  on a daily basis. Of course the surgery can have something to do with it, just in my case I had put my fatigue down to my allergy, which is why I have been desperate to clean here

What kind of supplements do you get a prescription for in the UK? Vitamins, hemoglobin? I left the hospital with strong painkillers and a handful of blood thinning injection needles that's all. 

M

[captainruss]

Mom,

I am not from the UK but here in the South of North America we typically are given B-12 complex, multiple vitamins, testosterone for the males, alll depending on your blood analysis.  I did get hemoglobin supplements because I lost so much blood each time and refused blood transfusions the last 4 surgeries.

A normal blood screen should tell your doctor what you are short on.  The pain medication causes us to retain water, exhaustion, fatigue, constipation, and the surgery is so hard on your body that you need B-12 and other supplements.

My doctor had some sort of cocktail of supplements that he put together.  I will try to get exactly what was in it, but I do know I felt much better after taking it for a week.  High amount of Vitamin C and Vitamin D.  That Intractable Pain Patients Handbook Guide you can google talks about all aspects of not just pain medication, but what it does to your body and what helps counteract it.

I know the pain medication really makes me gain weight and retain water.

Russ

[lululocket]

Day 38 (5.5 weeks)

I'd say it's flying by, but it really isn't. Ugh. I've had a week and a bit working from home, wow it is tough! Reflecting this weekend, I realised the work I'm doing at the moment would be very difficult if I was in the office and I'd probably thinking hard and struggling some days, so being out the office and still quite easily tired makes that much much worse, so I'm trying not to worry too much and just fight one day at a time.

However, the scar is healing beautifully now, it seems to have changed very rapidly suddenly. I'm still using lots of Vitamin E cream on it every day which seems to really help, and now I'm massaging it a bit as well.
 
Also, after a good old fight I've finally managed SLRs! Hooray! I actually managed it for the very first time at the physiotherapist's! Clearly I'm a bit scared of him. Also, he taught me that they are easier lying down, so we got one of those going first, but then I managed more sat up, just after a really horrible session of flexion work, which I think surprised even him. It's funny, the first in each set is awful, but then the next 8 or so are ok, followed by a nightmare finish to my set of "10-15".

I've also got an inverted bit of scar tissue which I now think may be keeping my flexion below 95. Looking at the pic below, it is on my right hand side (quite central), and it is stuck down underneath. As I bend it gets tighter and tighter. I've been massaging it on my physio's advice, but on Friday he did some 'work' on it and ARGH it really hurt! But as I'm at maximum flexion, the pain in my knee is relieved when he digs his thumb into that scar tissue, so maybe that is part of the issue; it is definitely the tightest part of the knee. You can feel the hard little tunnel where the keyhole went in! Eww.... You can also see the knee still looks very puffy - it's not very big compared to normal, but there is definitely fluid around still.

It's been tough, but in five weeks I want to be walking to pick up my master's degree, so I've got to keep fighting!

[Lorikeet]

Hi Lulu,

Just popping in on your diary to say thanks again for taking all the time to share the helpful advice on SLRs yesterday on the other board.  And more congratulations on your own success. I'm sure you will make y our goal of walking across that stage in five wakes. That seems like a good motivator to keep working hard on the PT.

[momof436]

Yes many thanks to you Lulu and good luck with your masters  and walking before it

M

[lululocket]

6 weeks and 3 days

Well, a huge amount has changed very quickly. Up until Thursday it was all really about the waiting game - waiting for the bones to fuse back together and trying not to muck anything up in the meantime.

Then on Thursday I had my xray and saw my OS. Man he is just so quick. I find that he pokes and prods my leg so fast that even with questions written down, I get confused.

The good news is that he was happy with the xray. It looks awful to me - I don't have a digital image this time so I'll try and upload it later, but it wasn't what I was expecting. I thought the tibial tuberosity would be cut in a square, with a horizontal cut at the bottom, but it appears to be a wedge type surgery where it has splintered in a long taper towards the ankle and been pivoted. I was so surprised that I didn't even ask him at the time! He is happy though. It has fused at the top, and although there are still some bits healing at the bottom, I'm allowed full weight bearing. He reckons I can be off crutches in 2-3 weeks.

He's also happy with my flexion (95 when I saw him), my SLR (I can raise it a good 2 feet without too much trouble), and quad strength was 'mediocre'. I'll take that!

I left feeling a bit confused (and in pain as I had an hour each way in the car and London roads are so full of potholes). I also thought the xray made my leg look very messy and broken still :-( However, on Friday I want to PT, and explained all of this to him, and how half of me was keen to start walking really fast and work really hard, but the other half of me looked at that xray and just felt scared. He was really great, and talked me through the whole xray carefully, looking at all of the different patches. Then he got me on an exercise bike - that was tough! Being only 5'4 means you need quite a lot of flexion to make a rotation! But I managed it, with 0 resistance.

The rest of the session was just walking with more weight through the leg. He took me down to one crutch but I became quite lopsided, so put me back to two, and said we'd focus on really good quality. I can extend my leg out most of the way, and walk through quite comfortable with maybe 70% body weight, but find it quite hard to bend my leg to finish the step (I am tempted to hitch my hip up instead). We made lots of progress though. I've also been set going on tiptoes in front of a bar, and the teeniest tiniest start of a squat, again in front of a bar. Lots of work to do!