ACL revision (6/7/2010)

[vinnic]

Hey Vicky - not sure if you started a new thread or not, but finally have some time off and catching up on the boards...  Looks like some time has passed since the last update on this thread, so hope you're coming along or at least trying to enjoy the summer months.  Post when you can and sending well wishes your way! 

[clarky_vl]

Hi,

Not posted on here for a while so have lots to update.

Picking up from where I left it Last time, starting physio was a great support, that first session was pretty easy, he was very surprised that I had full ROM a couple of weeks after the op, apparently the Truro man had told him that ROM is the hardest to regain after this op, and pretty much had that down as my goal until the next surgery, so I was done with that before I had even started. I think he was a little disappointed at not getting to torture me with the ROM, I just don’t usually have an issue with it. So pretty much we are back doing the basic things we were doing, and checking every month or so that my leg hasn't dropped off or something  I am not too sure what will happen with physio once I move away for uni (in a month!!!)

Oh I forgot to say I had some problems with my hip wound as well as the knee one, which eventually closed up. The hip one however, the top half of it opened up again and looked really awful, you could see right into the wound beneath the skin, it stayed like that for about 6 weeks. Now it looks ok, but like my other ones has sort of stretched out so it is quite wide and is still dark, but hey, it's at least closed now!

Saw the surgeon at 8 weeks, he was pleased with recovery i think. it is hard to tell what he actually knows about the instability I have and how bad it is, I know he has seen it do some pretty horrible things, and he can tell it’s bad from his own examination, and in letters he has written to me or for the notes I can tell he knows it’s bad for me, but I always think back to my old surgeon just not believing me and having unreasonable expectations of the knee. Overall i am still soooo pleased with the new surgeon, though I think my physio is finding it impossible to get in contact with him. He wants to make sure he knows all about the kind of things it does before operating but can't seem to get hold of him!

He had up an image from the fluoroscope thing he used during the surgery when he was removing the screws. It was such an amazing picture, and they really did look huge compared to the size of the bones, I can see why they had to come out.

He also said he wanted me to wear the brace all the time! At the time it was really annoying me and I wanted it off, but it really hasn’t been that bad, I guess I am used to it. I don’t think it helps the instability, but it certainly makes it feel better when it is hurting or injured, which it seems to be all the time. At the beginning of this last surgery I couldn’t imagine having to go on like this for 6-9 months, but now 5 and ½ months have gone by somehow.  I can’t wait to get the surgery over with, but I think I have adjusted to the knee as it is for now. I am obviously just hoping it is a lot better after the surgery.

My physio said the brace would need parts replacing fairly regularly, but it has lasted all this time and has only just started to break (straps and side padded bits) I am trying to get in contact with the people that fitted it but they are being a bit difficult at the moment, may take a while longer on the phone I think!

Some other important things that have happened in the last few months:
• The Truro man said when I saw him at 8 weeks that Mr Webb (henceforth known as the Bristol man) would be coming down to Truro for the second stage surgery to perform it with him. I was already comfortable with my surgeon doing it, but now this is brilliant having one of the only surgeons around who has actually performed the anterolateral extra articular procedure before, and one so well regarded. It is unbelievably nice him travelling so far to do it as well, my physio was quite excited by this too, he says it is because my leg is ‘interesting’ and I was once again warned about the scar size…
• I rang up the secretary as I hadn’t had a date for the CT scan (supposed to be September) the next day I received a copy of a letter send to the MRI department by the Truro man, asking them to arrange it for early-mid November. Not sure why the change, gives it more time I suppose. Will have to return home especially for that though
• At the 8 week follow up, I gave the Truro man a list of dates I could do for surgery, obviously 6 months would have been a stretch to fit it in before uni, so he said December. When I rang up about the CT I also found out that it had already been booked in for 21st December, with that being the only date the Bristol man can do. It’s pretty good, but will still have to take some time out of uni I think, we’ll see. Anyway, glad I have a date, it will be an interesting Christmas this year!!
• My GP referred me to a rheumatologist because my body is literally falling to pieces! Pretty much every major joint is unstable/painful now, not in the same way as the knee and with no actual cause. The final straw was when I started getting severe back pain. Anyway, I obviously knew from all the knee stuff that I was hypermobile, but apparently I have Ehlers-Danlos. It is weird how I pretty much have all the joint/skin/bruising symptoms. Am waiting for an echo for my heart and another appointment with the geneticist, they think it’s either the hypermobility type or the classical type. I sort of figured something would be diagnosed if I pursued it, it’s not going to interfere with my plans for my knee though, I need to try everything I can to make it better and this seems to be the last thing.

So yeah, everything is in place, it’s still just a case of waiting. My knee hurts and is unstable, and I am worried about moving away from my family and being away from home with all this going on and how I will manage, but I will have to, and I am still excited about moving away for university.

I think that is everything. Sorry it is so long, I guess it has been while. Hope everyone else still on here is doing better!

Vinnic, how are you doing these days??

Vicky

[tez27]

Hi Vicky so pleased to hear from you and even though your still going through a hard time with the knee your still as positive as ever, all I can say is good luck with the move and heading off to Uni, make sure you look after yourself and keep in touch and let us know how things are going for you, it wont be that long till 21st Dec and the next stage of the knee surgery, and with any luck it wont interfere too much with Uni.
Take care Tez   

[vinnic]

Hey Vicky!  Like Tez, so sorry to hear all you've been through but so glad to see your post.  Please let us know how your upcoming appointments go, knee-wise and Ehlers-Danlos-wise.  It's good to hear that you'll have both the Bristol and Truro doctors working on you!!  Nice to see that physio is coming along for you as well.  As far as moving away, you've got some exciting times ahead of you!  Even though you'll be a bit away from your family, take advantage of everything your university has to offer for support if you need it.  And, if it ever gets to be too much, take some time off if you're able to and recoop at home with family and friends and don't worry or feel bad about it either.  I had to do this for one term during my third year of college, and it was all for the better!  (And as far as how things are going now, they are much, much better this year compared to last - switched school districts and was fortunate to land in a GREAT place - and knee continues to hold up).  Take it easy, enjoy university, and hang in there!  Keep us posted on how things go.  Sending lots of positive vibes your way!   

[clarky_vl]

Hey,

Tez, I hear you are having a scope soon? Hopefully that will go well for you and can give you some relief! I will make sure I am around to wish you good luck around the 24th, I believe? You deserve to be able to put this knee stuff behind you even just a bit, I know it’s been making your life more difficult having to deal with the instability and now the pain and that isn’t fair 

Vinnic, so glad to hear that you are still around and your knee is still going strong, that’s excellent news! Good advice with the uni stuff, I know it’s very exciting and I am excited (accommodation contract received and signed, online enrolment done, and freshers party tickets purchased!) but also very nervous and know it will be hard! Planning on taking some trips home maybe after a couple of weeks, and will have to return at some point for CT and other appointments but those will be good I think. And hopefully I won’t be missing home too much, it’s quite far to travel though!! Only 13 days now… Also yes, I am sooo  happy the Bristol and Truro man will be doing it together, I mean I love my surgeon and am so grateful to him and of course trust in him completely, but the Bristol man has the experience and the reputation too, it’s all just great news for me (plus I am sure they are looking forward to working together) I am so lucky that they are both such nice guys arranging this for me, what with all the travel the Bristol man will have to do and the fact he is only a private surgeon and I am NHS, I can’t believe how awesome they are and how lucky I am!

So as it is now less than 2 weeks I am trying desperately to get appointments and tests sorted and done before I leave so I don’t have to return for something silly or put it off, so I seem to have looooads of appointments so thought I’d keep this diary up to date, or try to!

Ehlers Danlos wise (they seem to think of other people to send me too all the time, its taken ages to get it sorted…) I finally had an appointment for what I thought was the heart echo, but was actually EVERY other test ECG/BP/listening to my heart in every possible way lol, and a repeat of what I had done before referred there FOR THE SCAN. So I was pretty annoyed. The cardiologist knew I was moving away soon as he had asked about that stuff, and he was really interested in my joints, made me show him all my subluxing/dislocating joints, stretched my skin, asked me to do things and was suitably horrified. I assumed he was being thorough and going over the diagnosis, but then he goes “I will make you a deal, if you do something for me, I’ll do something for you…” and it turns out he wanted me to attend a course for medicine graduates about to undergo their MRCP exams as he was arranging the cardiology example. Soooo I am going to be poked and prodded by a load of junior doctors for 3 hours on Tuesday in return for him literally squeezing me onto his list to do a quick echo on the 28th. 

I also had another appointment with the geneticist who was really good. Last time he did all the family info and gave some advice re, tests that needed doing like the heart stuff and answering questions. He has given me a firm diagnosis on the type of Ehlers Danlos it is, he is confident after hearing everything and examining that it is type 2, Classical Ehlers Danlos, rather than the hypermobility type because I have stretchy delicate soft skin with lots of bruises and stretched scars as well as the joint hypermobility. So that’s all sorted, and he answered loads more questions. He thinks I am probably the first occurrence of this in my family and that I’ll have some genetic mutation causing it.

Now, I would like opinions please (if anyone is still reading this!) because I have kept this Ehlers Danlos stuff well away from my knee surgeon. It sounds silly but as far as I am concerned he has examined my knee, he knows how it is and how the rest of me is, he knows my history, and he has even operated on me, the fact that I have a diagnosis of something shouldn’t change anything as far as he is concerned, and I still need my knee to be better, so this needs doing. But I know there is a lot of bad feeling about operating on people with it because of it failing, therefore I sort of don’t want him to know, I don’t want to give them an excuse to just tell me to just deal with it, and I almost expect people to do that. The geneticist mentioned he’d write to all the dr’s/surgeons involved in my care and ask to be CC’ed into their correspondence, but I asked him not to with the Truro man, which he understood. I feel a bit sneaky but I just really want my knee to be better and this surgery is my best shot. Of course if he ever asked me about anything like this I wouldn’t lie. What do you guys think? I hope I explained myself and my worries with that so you understand.

Knee wise, I got so fed up of ringing the occupational therapy department about the brace and hearing rubbish excuses for why they can’t help me (including the fact that I live in Devon, despite the fact that I am under a consultant at that hospital still and they gave me the brace in the first place!!!!!!) or why they can’t be bothered to help me more likely, and also hearing lots of false promises of people calling me back to answer my questions, that I just called the Truro man’s secretary. She said she was speaking to him in a bit and she’d bring it up. She then rang back saying that he had said that I should get a whole new brace, and dictated the letter then and there, she had typed it straight up and actually hand delivered it to the occupational therapist explaining the situation, then the OT rang me within an hour. Was very annoyed after all my efforts to talk to her, I guess the Truro man and his secretary must have said something, the therapist didn’t sound too happy with me. I got a copy of the letter, he had asked them to send me a new brace in the post but apparently that couldn’t be done because “it’s specialist equipment, you know”…. Yeah I think I can work out the Velcro straps myself…. But it turns out that the Truro man had ordered a different sort of brace which I need to be measured for. I know it will probably be a very similar horror to this one, but I can’t help getting a little excited and drooling over the tiny little functional braces and wondering…. Hahaha I doubt it somehow. Anyway, that’s tomorrow, so I am having a little trip to Cornwall for brace collection and then to lunch and having a little explore of the area and generally spending some time with my mum. Shall let you guys know if it is the brace of my dreams or not!

So attempts to get all of this done before 1st October are going pretty well, I am on target!

Hope everyone is ok, and apologies for the long post, I always underestimate my need to vent everything when I sign onto here, hope you don’t mind.

Vicky

[tez27]

Hey Vicky you sound like a very busy lady these days, good luck with the brace I hope its a decent one this time and considering the need for it you would think the OT would have been a little more eager to help, I hate when people promis to call you back the dont bother. As for the whole Ehlers Danlos diagnoses and whether to tell the Truro man or not, I can understand your reasons not to tell him, the only thing that would worry me is if the ED would cause him to do anything differently to make sure the op was a success, I dont know anything about the condition so am not the best person to offer any advice but wonder if it could make a difference to your treatment, could you have a chat to one of your other doctors who knows all about the ED and just make sure your doing the right thing by not telling them everything, sorry I'm not any help and I hope someone with a bit more knowledge pops up to give you some advice.
Take care Tez       

[clarky_vl]

Hey,

Tez thanks for replying, as far as I know the only real issue is to probably avoid using my own tissue for a graft, and I am having an allograft anyway, and perhaps some consideration for the wounds, but he knows that the knee and hip ones reopened after the last surgery anyway, and i'll bring that up myself without mentioning the EDS specifically pre op to see if anything can be done about preventing that because it is very inconvenient and happened often with the knee wounds iin particular, so I don't think any benefit would actually come from telling him without being asked. The geneticist and rheumatologist don't have a problem with me having surgery with all things considered as this last one is worth a shot to really improve things for me. I have checked it out and stuff, I just feel a bit bad..... but I can really see the "official" name putting surgeons off even though in reality it changes nothing for me from the previous experiences he knows about (except hopefully the end result!!).

How are you feeling about your scope? When exactly is it again? Really hope it makes things better for you. 

What a day I have had!! I had planned on the brace fitting and then a nice day out with my mum doing something nice. In the end we got to the hospital with not much time to spare due to traffic, so mum dropped me off at the entrance before going to park, except I slammed the  car door shut on my thumb across the bottom of the nail. When mum came back I was in tears but had run it under water and wrapped it in tissues, and we were looking around for the OT department for ages, apparently it moves a lot, eventually finding 'occupational health' or something, which was of course the wrong place, but I was not happy by then, late just about, struggling to find somewhere poorly signed with no letter actually telling me where, and a very sore thumb, that luckily the woman there rang the OT department and sorted it all out, and they were really good when I actually got to them. They got me some ice too

Turns out I am actually getting a good brace! I am sooooo happy. They had an example one there though I didn’t get to see the make, but it does look lovely. They literally just did the measurement today which was annoying travelling so far for, and I have to go back on Tuesday to collect it (next week) I am very excited about it after wearing this huge Breg T-scope for so long. He also gave me a replacement T-scope for the until next week. Wow you know your knee takes over your life when you get excited over braces!

Then of course we went straight to A&E which was luckily next door, and completely empty, however, the x-ray department was not, it took 2 hours in the end and I have one incredibly sore, throbbing, bruised, crack-nailed, but thankfully unbroken thumb. Just one hell of a soft tissue injury, which should be fun for my body to try to heal. As my mum says- only I could end up in the casualty department on my way to another appointment there. Don’t I look good with my thumb dressed and elevated and my whopper knee brace, all ready for the mass of junior doctors tomorrow afternoon.

Painkillers, then bed methinks….

Vicky

[tez27]

Oh poor Vicky as if you dont have enough to deal with without slamming your thumb in the car door, you dont believe in being kind to yourself do you.. It sounds like you have put lots of thought into whether or not to tell the Truro man about the EDs and as you said why give him an excuse for the surgery to fail before he has even done it.
I am not sure exactly what my OS is doing this time he thinks I have a meniscis tear that he will trim up and also wants to shave somewhere on the kneecap apart from that its a matter of what he finds when he goes in there, so its kinda hard to plan anything cos I aint got a clue what I will end up having done I am  going to tell him to go ahead and do whatever he thinks needs done rather than do it at another date as this is a good time for me to be off work as its coming into our quiet time plus i want this over with once and for all.
I hope the thumb feels better soon and excellent news on the good brace
take care Tez

[vinnic]

Hey Vicky, so sorry to hear about the thumb too!  I did this once to my pointer finger while on vacation in another country...  I slammed it so hard (accidentally, of course), that it felt like I'd cut it off!  We got x-rays to be safe, and the funny thing was that it was ok other than the numbness.  That lasted SIX MONTHS!  Felt so funny since it's the hand I write with...never thought it'd be quite the same.  One day though, as if magic happened, I had full feeling again! 

Glad to hear you got a good brace.  Good luck with getting ready for school, as well as upcoming appointments.  Keep us posted!! 

[clarky_vl]

Hey,

Tez!!!!! best of luck for tomorrow!! I will be thinking about you tomorrow and will check in to hopefully hear the best possible news whatever that is, hopefully that your surgeon is confident he will have made things better for you. I think that is wise to trust him to use his good judgement to do what he thinks needs to be done, he is the one who is mst experienced in your knee, and yes, also hopefully he wont leave anything to be done at a later dat- hopefully no more knee surgeries for you after this! Fingers crossed anyway.

Vinnic, eurgh hopefully this thumb wont take that long to get better! it feels quite numb but i think thats because it feels so oddly FULL. i know its blood under the nail and around the thumb that hasnt worked its way out but it feels so full and the presure is a bit strange. comparing it to the size of the other is a bit weird too. the nail has gone a weird bluey bruise colour, might have to look for similar shades in nail varnish for until the blue nail grows out!  it's horrendously painful to catch, but much better.

cannot wait to collect my new brace now!!!!! had the junior doctor exam thing the other day. wasnt too bad, a bit awkward being exained by so manypeople and having to be in a gown and in a bed and everything, but quite interesting, or so i thought anyway. hopefully it helped them, and at least i get my test done soon now!


I'll post a pic of the lovely new brace wheni get it! 

Vicky

[vinnic]

Hey Vicky!  Hoping you're off already or soon to university!  Were you able to get all your appointments squared away?  Did you get your brace yet or still waiting?  How's your hand coming along?  Well, take your time posting - hopefully you're out and about enjoying yourself away from home!!  Best of luck and sending positive wishes your way for a great upcoming year in your studies!

[Snowy]

Vicky! I'd completely missed your latest updates. I'm glad that you're making progress toward the final op, although I'm sure it feels like it's taking forever. The Ehlers-Danlo diagnosis must be a relief in some ways as at least now you know why things haven't worked the way they were meant to in the past, although I'm sure it also brings its own concerns for the future.

With regard to telling your surgeon, I would be up front about it. There may be things they need to do differently with the surgery or with rehab as a result, and I think the chances of success are better if they know exactly what they're dealing with. It sounds like the Truro doc in particular isn't afraid to shy away from difficult surgeries and complicated situations, so maybe you could start by sounding him out? Of course it's your decision in the end, but I do know that if I were in your shoes I'd want the surgeons to have all the information possible before going into this new surgery.

You must be very excited about uni now - are you feeling prepared? How's that poor thumb doing? Did you get your brace fitted, and if so how's it feeling? Look forward to seeing the pics!

[clarky_vl]

Hey everyone,

I moved to Warwick on saturday, it was hard at first but have met some great people, still makes me sad thinking of home but had a big catchup with friends/family so feeling better, and lectures start tomorrow. My room and en suite is HUGE, i love my halls. the kitchen is great too, and the people in my corridor are lovely. i have the ground floor room i asked for and an altered bathroom, mostly that is for after the surgery when i get back here after xmas. the campus is HUGE though, and i am really tired and sore after walking about today. Nervous about starting the course, but it might be good getting on with something too. I joined the uni sports facilities, basically include all the gym and sports stuff you can think of for £49 for the year, so thought getting back into the swimming pool might help with the leg.

Rang my physio before i left as was supposed to see him in september sometime but that didnt happen, we had a catch up as he didnt know i had a surgery date or a new brace. he actually got a reply from my surgeon, but it only said he wanted us to work on ROM, and 'whatever else the knee can manage' and just that he wants a 'calm' knee (no swelling) for the surgery, so no real guidance. physio advised me too find out the local physio place here, perhaps ring or visit them to explain and ask about knee specialist physios, and get the address for the referal after surgery. he said he will keep me on as a patient, and to let him know if i am about at home in nov, he will squeeze me in. he said he will be able to see me once after the surgery to chack on me, and before i go back to uni, and will then liase with the new physio for me, so that is great, and very nice of him, it has made me feel much better about th post op stuff.


the brace is good as in, more comfortable as it is small, but i am adjusting to it, and unfortunately it has cut me in a few places where there are rough straps or stickey out bits, so i just need to get used to it, and until then, strategically placed sponges and similar things! not great for stability, which i am surprised by, i somehow expected better from a functional brace, i know nowit can never be a decent long term solution alone. It is a Medi M4 if that means anything to anyone, and it has a lot of straps!

Hey Snowy great to hear from you, thanks for the advice, i have no idea what to do about it, i think i will see if at the time i see him it feeels right to say something or not. Hope your knee is doing ok,

Tez, i hear you have graft problems, i am very sorry to hear that how unexpected, but at the same time that it good that it was unexpected, you didnt have any instability which is hopeful. I would seriously question why they werent able to find any instability in the knee pre-op, seems odd to me. Also, why the need for a 2 stager iIF you do a revision, as he has not said the graft was wrongly placed, and you have only had one ACL recon so far, so shouldnt have such large holes in the bone? i am sure you have loads of q's for when you see him though. Hope the knee is feeling ok now.

Vinnic, yup got all the appt's done, dont know when i'll hear about them though! i am sure they will all have gone fine. yes i am quite enjoying freshers but at the same time a little sad at having left home and being so far away from my family. It is a little strange having never been very far from home on my own for any real length of time! Wish me luck for the start of my course....

Vicky

Oh and sorry for no pictures, have not taken any yet, very busy, but will do soon. Also, thumb is getting there, an awful colour though!!

[tez27]

Hey Vicky how are things going now you have had the first couple of weeks away from home? I hope the knee is standing up to all your asking of it without too much pain, how about the new brace, helping? or not helping?
From the sound of things you have most things sorted for going back after your surgery, how long on crutches etc, will you manage being back at uni if your still on them? your so positive about it all I really admire you and how your dealing with all this.
As for me I was shocked to be told that my graft had failed as I had an MRI a couple of months ago and everything looked ok then but saying that the original ACL rupture didnt show up on the MRI either for some reason, I also dont have a clue as to why my OS was talking about doing the 2 stage op if I had any instability, the only thing I can think of is that the tunnels were not in the right place or something, anyway at the moment I dont seem to have any instability I will have a better idea once I'm back at work [which is Wed] and back to doing my normal activities, as for why he didnt suss this out pre op could be that  I tend to really tighten up my muscles when I'm having these tests done, not on purpose but it was a thing that kept happening before my recon, in fact because i ended up having it done by a different surgeon at a different hospital from where the rupture was diagnosed he did the tests the morning of surgery and said he couldnt feel and problem with the acl and i may  just end up with a scope, though I knew he would spot it as soon as he went into the knee, maybe I just have weird knees
Take care and enjoy Uni Tez

[vinnic]

Hey Vicky, congrats on starting university!  Hope things are going well and you're adjusting.  How is the brace working out?  Hopefully it helps more than it hinders.  Keeping my fingers crossed things pan out for you and you're able to enjoy yourself!  Keep us posted on how things go when you have time.  Best of luck with your courses!

Tez - so sorry to hear about your acl failure.  Hope things work out for you as well!