KNEE ARTHRITIS - Autologous chondrocyte implantation (A.C.I.) :

Follow my ACI, start to finish, starts 18/10/04. - - Posted by Jules (Jules), 15 October 2004

Hi to all those about to have ACI and those who have already been through it, thought I might lead you through my experiences through the ACI treaments/rehabilitation and how things work out for me.
So I start with my date of admission to Oswestry is going to be on the 18th October at 2pm (three days from now... yikes!) for my first stage ACI, the harvesting of the cells..... wish me luck and watch this space.....
Jules.
Posted by Stan_Greenwood (Stan Greenwood), 20 October 2004

Hi Jules

Hope your scope went ok?
I went to the pre-op assesment yesterday myself as I'm booked in for the first stage on 17th November in Basingstoke.
Who's your surgeon? I've got a guy called Neil Thomas, who is supposed to be one of the best Knee surgeons in the country. So I hope you get someone as good.

Let me know how your getting on.

Stan.
Posted by brattkids2 (brattkids2), 20 October 2004

Hope your proceedure went well. Please keep us posted. If I find out the OATS has failed this proceedure is next. Would love to know how it goes.
thank you
Paulette
Posted by Jules (Jules), 21 October 2004

Hi all,
Well back in the land of the living. Got back from oswestry yesturday (wed). All went well.
On admission I had to have 16 tubes of blood taken, this is to help the growth process of the cells harvested. Took them 3 attempts, but it was fine.
Went down to theatre at 10:45am, was 2nd on the theatre list. Was back on the ward by midday.
I had bi-lateral arthroscopies and harvesting from the right knee.
I was up and tottering about after 2 hours post op. Was very sore and right knee was stiff, but nothing too unbearable.
On discharge yesturday, spoke to the docs, said that my patellas didn't need realigning which was good news, but that the patellas were definately bone rubbing on bone, and that my leisions were large, but didn't give me a measurement. Also meantioned total knee replacements, but due to me being only 38 years old it wasn't an option at this stage, therefore ACI was my only chance of improvement at this point.
In my research I have found that the larger the lesion the less chance of a full improved success, but I am hoping even if its not fully successful, there will be a dramatic improvement in my reduction in pain and mobility, anything is better than nothing as I am at the moment.... so fingers crossed.
My left knee this morning (Thurs) post arthroscopy is not painfull at all, but is a little squiggy due to the fluid, but that will reabsorb in time.... though it sounds awful when I walk!
The right knee post arthroscopy and harvest is still very sore and stiff, and woke up 4 times in the night with the aching, but again nothing too unbearable. It is very swollen, but I am using ice packs and anti-inflammatories to help this. I have been given light exercises to do, which is easy on the left leg, but a little harder on the right.
I can bend and straighten the left leg ok, but the right one is not quite there, but with the exercises I invisage to be able to do it within a week.
I am also keeping a full journal and pics of my process in the hope it will help others when they are waiting for this op, as I have heard good and bad stories but thought it would be good to actually see and read the facts as they happen.
Well I am due to go back into oswestry on the 8th November, with the second op on the 9th November, where I will be in hospital for about 5 days.
But I will keep you informed as to my progress, in the next few days.
Stan, my surgeon is Professor Richardson, who is also named to be a very good surgeon, keep me informed of your progress as I am very interested in comparing notes. And I will be 8 days post second op when you go in.
Paulette, thanks for your email, let me know how you are getting on.
Best regards
Jules
Posted by Stan_Greenwood (Stan Greenwood), 21 October 2004

Jules,

Isn't this site fantastic!!

I look forward to hearing how you get on, and what to expect ect.

How will we see the pics?

Stan
Posted by Jules (Jules), 21 October 2004

Hi Stan,
I'm looking into putting it on a web site, so anyone can access the journal. Its very much in lay terms, so that people can see and understand it at basic level. Let you know once it is set up.
Best regards
Jules
Posted by blue_ezzie (blue_ezzie), 22 October 2004

Hi Jules,

Good to hear that the harvesting seems to have gone well for you. Best of luck for the next little while. It's a nerve-racking time between the two ops! Keep the muscle building exercises up though, I really wish that I had worked harder before the 2nd op - maybe my left leg wouldn't still be so skinny if I had!

I'll be really interested in seeing your website, let us know when it's up and running!

ezzie

Posted by JulianUK (JulianUK), 22 October 2004

Jules,

Glad to hear the first stage has gone well and they are proceeding.

I've got pics of my left leg that was done last year, pre and post op. So if anyone wants to see them, just send me a private message with your e-mail address and I'll send them to you.

I'm in on Tuesday 26/10/04 for the second stage of my right leg. Not looking forward to is, but having been there once I know it can work.

Just remember folks that Rome wasn't built in a day. This takes time and patience, but the tortoise will win this race everytime.

take care and will keep in touch,

Jules.
Posted by Jules (Jules), 22 October 2004

Hi all,
Will try and get the web page set up today, never done it before so may take me a few days.
Ezzie, I am not so worried about the second op now, as when I was in there was a young girl who had harvest from her knee and was in there for her second op to implant into her ankle, and she said the pain was not as bad as she thought it would be. She was getting around really well post second op.
Julian, what part are you not looking forward to? I know its slow and I know its my first time, but I just hold onto the thought of it making some kind of difference, and what I have to go through doesn't matter if it works. I think you need to think positive about a lengthy process like this, or else it would get you down a great deal..... but thats me saying when I don't really know isn't it?
Let me know how you get on, because as your coming home I will be going in... 9th November, if the cells take that is.
Well didn't sleep to well again last night, woke up after a heavy sleep and I think I hadn't moved my leg for a couple of hours, it was so stiff and aching, this is one of the things I'm hoping will go when the ACI is complete.
Tottering about ok, knee still swollen, after doing excersises twice yesterday, found I couldn't do them so well the third time. But will keep with it.
Best regards
Jules
Posted by Jules (Jules), 22 October 2004

HI,
Just spent an hour and a half looking for setting up a web site, and due to the complexity and the cost, I will not be posting my journal this way, which is a shame, but if you would like to see pics, then send me your email by private message and I will send them to you.
But if any one knows how I get a web site set up easily and free, please let me know, as I think my journal would benefit others awaiting ACI.
Best regards
Jules
Posted by Jules (Jules), 24 October 2004

Hi All,
Went out and about today, managing with one crutch just to steady myself, don't need it in the house.
But found that i wasn't over the arthroscopy and harvesting as I felt I was, just a simple task as getting off the loo, as I put weight on my right leg to stand, I had an horrific pain above the patella, it seems to be in the muscle, but I think it is where the scope was placed to get the harvest, maybe it is scar tissue, but it felt very tight, when trying to stand, full weight bearing, brought tears to my eyes, but has made me more determined to correct it prior to the second stage taking place. Just proves that although we may think we are more recovered than we think we are, must remember this during the rehabilitation from the second op.
Best regards
Jules.

Posted by Jules (Jules), 1 November 2004

Hi All,
Just to up date you, found out today that the havesting of the cells have taken, and it's all going to plan for the implantation on the 9th November (Tuesday). Have to go into Oswestry the day before and will be in till Friday. Will have to be on the CPM for 36-48 hours post op, and looking at 3-6 weeks non weight bearing, and maybe being fitted with a brace.
Still having a few problems with the right knee since harvesting, it just feels like a continuous bad day with my knee to what I was experiencing before. having a lot of pain under the patella and around the harvest site (muscle or scar tissue).
Hope all is well with you all. Will post just before I go in on Monday.
Best regards
Jules
Posted by brattkids2 (brattkids2), 1 November 2004

hope all goes well thoughts and prayers are with you!!!!

keep us posted

Paulette
Posted by dhalem (QBknee), 2 November 2004

Good luck with the second phase of the ACI procedure.  I made a bad decision going with my OS who was inexperienced with the ACI procedure.  I had the cartilage harvested but after this "simple" arthroscopic procedure, my knee went to hell.  I developed severe scar tisssue/arthrofibrosis just from the harvesting procedure.  It didnt help I had to go on a business trip exactly one week after the harvesting procedure, but after returning my knee got worse.    10 months later I finally got to the right OS who pinpointed my problems and operated to fix the defect and remove the scar tissue.  

Today, I have had two operations since the carticel harvesting and ended up having a similar procedure to the ACI implant except without the cells being injected.  I had an open incision bone graft with the plug taken from the top of my tibia.  For those that have defects deep with subchondral bone showing, it is recommended to have this done prior to having the cells implanted.  Currently the bone graft has worked just fine and I will not need the cells implanted.  My scar tissue was also removed, but is still within my knee and I am looking at another scar tissue procedure early next year.  

I am just starting to regain some quad strength and re-developing my VMO area.  I would be further along but the scar tissue really restricts your rehab.  Good luck and be sure to use the CPM and have an experienced PT work with you post op.
Posted by Jules (Jules), 2 November 2004

Thanks paulette and QBKnee for your best wishes, I will keep you informed of my experience and progress.
QBKnee, I'm sorry to hear you have had a lot of bad experiences with your surgery, I know that due to the large lesion and where it is, there is a reduction in the success rate, but I'm keeping my fingers crossed, I too have some problems with scar tissure, not as extensive as yours though, I have found that regular massaging the scar tissue that you can feel, does break it down a little, and makes mobility improve quicker, though it is painful to do this, it has improved and reduced the pain slightly I was feeling around the harvest site, but I appreciate everyone is different and heals differently.
But I hope you continue to improve and hope you don't have a repeat experience like your last one when you have your next op next year.
Best regards
Jules
Posted by Jules (Jules), 7 November 2004

Hi all,
Its now Sunday 7th November, and I'm due to go into Oswestry tomorrow with my implantation ACI on Tuesday, must say up until now I've felt ok about it, but woke this morning to butterflies in my stomach, so guess I'm a little nervous about this open knee surgery.
Recovered well as I can from the harvest and arthroscopies. Knee is still aching at night and keeping me awake. But hope that will all change soon.
Well I'm expected to stay in up to 7 days but hoping I will be home by Friday afternoon... so wish me luck and I will be keeping a diary all week to relay back to you when I get back home.
Best to all.
Jules
xx
Posted by blue_ezzie (blue_ezzie), 8 November 2004

Hi Jules,

Best of luck for the op! I'll be thinking of you. When you get through the next week you'll really be able to start focussing on your rehabiliation and full recovery  

ezzie
Posted by Jules (Jules), 13 November 2004

HI all back in the land of the living, I have typed out my diary for the week, had to do it in a few posts as it was too long to put into one, I know its a bit lengthy but I hope it will be of interest to others having/had ACI. Please post any coments or views you may have....... happy reading.....

Monday 8th November 2004, 21;00, Been seen by Professor Richardson, he told me my knees were bald! and on the right knee have a large lesion and a small lesion. They will be repaired with a graft and implantation of the cells tomorrow. I will have to be on the continuous pressure machine (CPM) for 3 days! Maybe home by Saturday if I'm lucky. Also will have to non-weight bearing but not sure how long as yet. Due to go to theatre at 10:30 am. Have managed to get my own room, which was a bonus. Instead of Ted stockings (prevention of deep vein thrombosis (DVT)), they use foot pads (which cover the feet) that every few seconds blow up and place pressure on the bottom of your foot to help the circulation. I will have a total leg block, which will give me total pain relief up to 12-15 hours. Also will have a diamorphine patient controlled analgesia (PCA) for when the block wears off. So PCA pump, feet pads, CPM, fluid drip, I will be well wired for sound!! Nil by mouth from midnight.

Tuesday 9th November 2004, 11:20am, still waiting to go to theatre, been sick this morning, put it down nerves, had no pre-med. I've been sitting in my theatre gown since 09:45am! Finally went to theatre at 11:35am. 15:34pm. Came back from theatre, my right leg and part of my right bum cheek is totally numb. Got the feet pads on my feet to prevent DVT, block is brilliant as a total pain relief. But can't say I really like the feeling of being totally numb. Leg is also bandaged and I have a knee brace on. I have a drain coming from the knee to drain of any blood and serous fluid from around the knee.
18:10, Registrar came to see me, said I had 3 grafts in total, for the three lesions I had, 27mm square'ish behind the patella on the trochlea and two on the femoral articular 25mm square'ish on both lesions, that's a total of 77mm or 7.7cm square, which is a big lesion site in total. I've had one graft from the shine bone for the patella lesion and 2 collagen grafts used for the other two lesions on the joint. Had co-codamol, as I'm very disappointed in not having the PCA I was told I would have. 20:00pm I've had the first of 2 doses of prophylactic IV antibiotics and also had Ibuprofen as having a slight aching in my knee, although the rest of my leg is totally numb. Having to use a bed pan, as not able/allowed out of bed. Feeling a little nauseous too. Eating and drinking ok. Feel tired as not slept well the past two nights, hope to feel better tomorrow and I hope I get some sleep tonight, although I doubt it as have to start CPM machine at 22:00, and the feet pads are slightly irritation and noisy. 23:10 I was put on the CPM machine, set at 0-45degree bend and set at a snails pace for the movement. This is ok; better that my leg staying still. 00:10pm trying to sleep! But the feet pump is keeping me awake don't envisage any sleep tonight. 00:35pm numbness from right bum buttock has gone and I can move my big toe! Hurray!
Read next post to continue reading my diary...
Posted by Jules (Jules), 13 November 2004

...........Wednesday 10th November 2004, 01:30am getting pins and needles in my right foot can move all my toes and my ankle, feels funny Ha Ha! Getting some mild pain behind the knee. Due for second dose of IV antibiotics and Ibuprofen at 04:30am. 04:00am Came off the bed pan, and 5 minutes later I felt real intense pain in my right knee, not felt anything like it before, I'm crying, tense and pulling at my hair!! Even foot pump making the pain worse, cannot tolerate CPM machine. 04:30am Taken off CPM machine and 4mgs diamorphine injection given. 04:45am extremely bad pain, but not as intense, still can't relax enough to allow me to rest or sleep. 05:00am pain now a heavy dull painful ache, not tense anymore, but still cannot sleep. That was really a tough hour! 05:15am intense pain returning, given 4mgs Ibuprofen. 05:45am Really intolerable intense pain again! I'm crying, tense and pulling at my hair again! 06:10am can't take this anymore! 06:15am Tramadol 100mgs given. THEY SHOULD HAVE GIVEN ME THE DAMN PCA!!! Asked for the doctor to review my pain relief regime. Can't handle this much longer, apart from about 40 minutes slight relief, it's been a horrible distressing 2 hours. Hope this Tramadol works!!! 07:10am 4mgs of diamorphine injection given. 08:30am the pain relief has helped slightly, still not enough to relax me so I can sleep. 08:40am Co-codamol given, diamorphine has worn off now, and I am so tired. Waiting for the doctor to review my pain relief, hopefully my diamorphine dose, as when women have a caesarean section they get 10-15mgs of morphine 2-3 hourly, I got diamorphine 4mgs 3hourly! 12:10pm still no doctor, tried to sleep, pain slightly better, but still not enough to sleep. Had a bed bath and hair washed, feel fresher, pain increased after moving around and another diamorphine injection given. Still feel so tired. Physiotherapist popped into see me, as in too much pain, will return tomorrow, left with information and exercise sheet. 12:20pm foot pumps put back on. 15:20pm seen by doctor, decision made for me to have a diamorphine PCA, it works by me being able to administer 1mg every 4 minutes intravenously if and when I feel I need it. Drain removed, extremely painful, hit the ceiling when it was removed, made me distressed and cry! Dressing also changed, I have dissolvable subcuticular stitches on the shine graft site and 24 staples on the operation site, knee extremely swollen. 16:00pm had 100mgs of Tramadol whilst waiting for PCA. 16:20pm PCA up and running. Hurray!!! Amazing after 3 doses good instant pain relief, I'm fully relaxed and have very little pain. 16:30pm Physio returned and was put back on the CPM machine at 0 - 30 degree bend, which was changed to 0 - 45 degree bend at 19:30pm. Feeling more positive now, although still unable to sleep, but resting and relaxing well.
Overnight, PCA was wonderful, slept for at least 3 hours solid, then heavily dosed for the rest of the night.

Read the post to follow my diary....
Posted by Jules (Jules), 13 November 2004

........ Thursday 11th November 2004. 07:00am feel a lot better; venflon is sore (needle in my hand) and bleeding, may need re-siting. 07:30am feel really sick, may be due to not eating hardly anything over the past couple of days, so forced myself to eat breakfast, then was physically sick, so had to have yet another injection to stop me from feeling/being sick. Can't use PCA until the doctor checks my venflon, had Ibuprofen. Right knee feels a lot better since using PCA. Knee very swollen, physiotherapist is bringing an ice pack today. Most of the leg block has gone now, still feels numb on the outer side of the knee and edges of the bone graft site. These maybe due to the op and not the block, have been told this could be permanent. Feels hard and hurts to lift the leg, feels very heavy. Hoping to get back on the CPM machine this morning and increase the degree of bend in the knee. 09:15am Venflon re-sited and now back on the CPM machine. 10:30am Professor Richardson came to see me, and told me that I had two collagen grafts and one graft from my shine bone to use for the three lesion areas. He said to go on the exercise bike as soon as possible and when I can tolerate it, and be on it for at least half an hour a day. I have to be non-weight bearing for a solid six weeks and he also wants me to try and lie on my front, if not on my side, to help the grafts take better as they are all in different areas. Also he wants me to go to 0 - 95 degree bend on the CPM machine prior to discharge, preferably whilst I still have the use of the PCA. I'll see what the physiotherapist says today. 11:20am Physiotherapist brought the ice pack, which I used for 20 minutes.
I was now put up to 0 - 50 degree bend on the CPM machine, and that feels fine, I think at this stage I could actually go to 0 - 55/60 degree bend. 15:30pm I asked to come off the feet pump and CPM machine for a while, they said yes, and I tried to sleep but loads of kids screaming and a woman cheering, so couldn't sleep. 17:00pm gave up trying to sleep, so I asked the nurse, and she put me back on the feet pumps and CPM machine, now at 0 - 57 degree bend. Still no problem at this degree. The only thing is that due to the swelling when the CPM machine is on the straight leg, the back of the knee is not quite flat against the leg strap. 17:45pm CPM machine is now up to 0 - 65 degree bend. This feels ok too; just feel very slight aching on my shin where the graft was taken from. 20:00pm have had a new PCA syringe and CPM now put up to 0 - 70 degree bend. 20:30pm Going past 0 - 70 degree bend is going to hard, 70 degree bend is at the point where it seems to be the start of stretching muscle/scars. I will work on increasing it tomorrow and stay at 70 degree bend tonight. 21:30pm changed my mind, now on 0 - 80 degree bend on CPM machine, not painful at all, just slightly stretching. 22:00pm now had a total of 10 hours on the CPM machine. 22:30pm now off the CPM machine.

Keep reading the next post, almost finished....
Posted by Jules (Jules), 13 November 2004

........ Friday 12th November 2004, 01:30am I can't sleep, these feet pads are so annoying keeping me awake, as I try to drop off to sleep, they will inflated noisily and makes me jump. Overnight, slept for very short periods of time, just wish I could have some solid hours sleep continuously. 08:45am PCA capped off, I will only use it if I need to when on the CPM machine. I feel much better, only had co-codamol and Ibuprofen this morning. I'm not in much pain at all. I feel a bit muggy headed, this is due to all the diamorphine I have had. After a wash 09:15am I got up for the first time since my operation on Tuesday, went to the toilet using my crutches, being non-weight bearing on the right leg, it felt really great to be up and moving around. Going to be changing my dressing today and all is looking good for going home sometime over the weekend I think. Walked to the bathroom where the nursing auxiliary washed my hair. The physiotherapist came to see me again with an ice pack, also she will arrange for me to have a commode as my toilet is down stairs making it difficult to use as night. She will get the occupational therapist (OT) to see how I can manage the stairs. She has explained the exercises I have to do and is happy for me to go home when I am ready. That was it, I want to go home today! Asked to speak to the doctor about me going home. 14:00pm Saw the OT, found it difficult to hop up the stairs on my left leg, due to the osteoarthritis in that knee, I made only three steps and said that I didn't feel safe doing that way, and would go up the stairs on my bottom, had no problem coming down the stairs. She spoke to the physiotherapist, who was happy for me to do the stairs this way. Got given my commode. 14:30pm went back on the CPM machine, straight up to 0 - 95 degree bend (was determined to go home today!). 15:00pm spoke to the nurse, she said she would go to find the Professor and tell him, the physiotherapist was happy to let me home, and that I was at 95 degree bend on the CPM machine and could I go home. 15:25pm YES!! Going home. Dressing changed, also a change of dressing, tablets given and letter for the district nurse to remove my staples on the 14th day post op (23/11/04) and also my sick note for the next four months. I will get an appointment to see Professor Richardson in 8 weeks for a post op review and my local physiotherapist department will phone me to arrange my appointment with them. 16:55pm left Oswestry, on my way home. 18:40pm arrived home, not the most comfortable journey, knee was aching all the way, glad to be home though. Overnight, went to bed at 21:30pm fell asleep not long after that, and woke for the first time at 05:30am, went back to sleep and woke again at about 08:00am, great nights sleep!

Saturday 13th November 2004, 15:20 had a relaxing morning in bed, sleeping, watching TV, doing my exercises, and writing up my diary, been having my pain relief, but the pain is not too bad at all, just a lot of aching. Knee still very swollen and bruising starting to come out, knee feels slightly warm to the touch, but no redness or oozing. 16:00pm got some cooled boiled water and some sterile gauze to clean the wound sites.
The right knee is not sore as such, it aches a lot today, and they is a lot of numbness still especially around the staples and around the patella, I just hope in time this returns, as it has around the graft site.
Finally thats it so far to date. Hope everyone else are well, update things as they happen.
Best regards
Jules
Posted by heather_k (heather k from wales), 14 November 2004

Hi Jules,
I sat and read your entire post, what an ordeal you are going through! .  Sounds like you are improving day by day pretty well though.
I was in Gobowen earlier this week to see my OS, and yes, I did think of you, how you were getting on and so on.

Keep improving and stick by your Quacks strict instructions, Im sure you will though!.

Take care,

Heather

Posted by dhalem (QBknee), 14 November 2004

Jules,

I know what your are going through, hang in there! I had a similar procedure last year but certainly not as big as your lesions.  Those first few days are the worst after your operation. I wish you could have had the stronger pain killers right away.  I remember I had a morphine pump which I used alot and was on epidural for 3 days post-op.  It's good you are pushing yourself on the CPM.   I had to go back in for a scope 6 weeks after my procedure.  Scar tissue came back with avengance.  I also did not have my cells implanted and most likely will not have to as the graft has filled in nicely.   Hopefully you will get your flexion and extension back quickly without scar tissue and then you will be in great shape.  My graft which was 20mm long, 15 mm wide, 8mm deep in the lat femoral/partial trochlear and one year post-op is doing great.  I was not allowed to do any leg extension, leg press for about 7 or 8 months.  You will see down the line you have to work the weights slowly or the knee will stay very sore.   I recommend getting a TENS unit for muscle stim.  This will help get your VMO/Quads firing and help with ROM.  

Dan  

I wil
Posted by Jules (Jules), 14 November 2004

Thanks Heather and Dan for your emails.
Yes certainly has been a tough few days, and I wasn't expecting the severe pain I experienced, but I have moved on now, and I have just a heavy dull aching, obviously it is worse after exercising, but I'm able to straighten my leg fully now, and I can sit on a chair and place my foot flat on the floor, as a normal sitting position. I can also raise my leg now, though not many times in one go, as this is the most painful exercise of them all. I haven't started the bike yet, thought I would give it till next week, build on the exercises I'm doing now, and then hopefully will feel up to going on the bike. Have to do half an hour a day.
Didn't have a very good night, didn't sleep much, so tired and still in a bit of pain today, using ice packs after exercises, which does help.
Dan why didn't they use the cells? Made me think, I hope they have used mine, didn't cross my mind that they wouldn't have used them, but I would have thought that they would have told me, wouldn't they?
Heather hope you got on ok with seeing your OS, have to go back in 8 weeks time, which I will only have been partial weight bearing for two weeks by then.
Something I would like to know from ACI patients, after the second stage, when you went to put your foot with your operation leg, on the floor, did anyone experience pins and needles sensation, I am getting this by just using my toes to balance not bearing any weight, it is worrying me a little. Any advice....
Best regards
Jules  
Posted by dhalem (QBknee), 14 November 2004

Jules,

My cells were not used because the OS first wanted to fix my subchondral bone.  I knew this going in.  The OS would use the cells down the line if the graft he did started giving me problems.  My defect was pretty deep and a good OS first would want to fix the bone before implating the cells.  I think my defect was small enough to first try and see if the bone graft will fix the problem.  So far the graft has been ok.  I can't recall having pins and needles, but I would think it it should subside in the weeks to come.  I had extreme pain with my IT band and scar tissue coming up into the quad after my procedure.  It looks like your motion is coming back as well as extension.   My case was complicated with Arthrofibrosis so my recovery is taking much longer.  I am just starting regain some quad strength at 14 months.

Dan
Posted by mayme (mayme), 14 November 2004

Jules,

Not to worry about the pins & needles feeling you get when touching your toes to the floor. I just had a paste graft procedure done where I was NWB for four weeks and PWB for two weeks after that. My foot/lower leg felt the exact same way - felt like I had slept on it funny & cut off circulation to it. More than anything, I think this is just from the NWB status. As soon as you start to put weight on the leg again it will go away - for me the pins & needles sensation was totally gone after I was weight-bearing for two days. Best of luck to you, sweetie!
Posted by Jules (Jules), 14 November 2004

Thanks both for your replies, it has put my mind at rest about the pins and needles.
Dan I too feel that the most of the tightness is above the patella going into the quad muscle, and also the graft under the patella is the most painful when trying to lift the leg. But I am hoping the continuation of exercises will improved this.
Best regards
Jules
Posted by Jules (Jules), 16 November 2004

Hi all,
Thought I would update you in my new findings.
Managing to do my exercises 3 times a day now, doing each exercise 20 times. Knee aches quite badly at the end of the day. Cannot hop around, because the impact hurts the patella graft site. So have to make sure I use the crutches to move around.
Noticed last night that I could only bend my knee so far, thought it was the tight dressing that was stopping me bending it further, so took off dressing to change it, and bent my knee whilst dressing was off, and found that above the knee on the inside of my quad muscle, there was an intent when the knee was bent, looks like something is attached on the inside to the skin and is pulling it in when I bend my knee, and is stopping me bending my knee any further, it feels very tight. I will have to wait to see what the physio says, still waiting for an appointment though, will phone them today.
I just hope that there is not major problem. Knee reducing in size every day, as still using the ice packs, which is good.
Hope everyone is fine.
Best regards
Jules
Posted by Jules (Jules), 17 November 2004

Hi all,
After phoning the physio dept yesterday, I went to see them today, said they couldn't do much more than I was doing already with my exercises, till I am weight bearing, but the good news is that they are starting me on hydrotherapy, not next week but the week after, after I have had my staples removed. I have a lot of waste in my VMO, and there needs alot of building up in that area. So I will work on that at the moment. Exercises over the past couple of days has been hard and painful.
She also said that the indent by my quad muscle is down to the wastage of the muscle and should be ok once its built up again.
so all in all slow progress but getting there.
Keep you informed.
Best regards
Jules

Posted by brattkids2 (brattkids2), 17 November 2004

Jules,

hope you are getting better day by day. Before you know it you will be able to weight bear again. Thoughts and prayers are with you!!!!

Keep up the great job on exercizes for recovery.

Paulette
Posted by dhalem (QBknee), 18 November 2004

http://users.erols.com/equinox/aci_rehab.html

Jules,

Have you seen this website from a patient who had the ACI procedure several years back. He documented his Post-Op rehab.  I refer to it every so often to compare what activities I am doing and at what stage.

Although my rehab is complicated due to scar tissue, I like to benchmark the various exercises people are doing.  I am over the 1 year mark, and my focus is starting to shift more towards muscle strength.  I continue to do little or no resistance on the bike and elliptical, and walk backwards on the treadmill.

I actually did a light jog tonight after leaving the gym.  I went for about 1 minute, the first jog in over two years. The leg feels pretty weak, but I think with additional quad strength I can improve.  

My OS was very protective of the graft for about 9 months.  No leg extension or leg press.  

Dan
Posted by Jules (Jules), 18 November 2004

Thanks Paulette and Dan for your posts,
thank you for your best wishes, things are slowly improving, the swelling is going down really well and I still progressing with the exercises, though I am looking forward to having the staples out and starting hydrotherapy.
Thanks for the web link Dan I will have a look at that, and congratulations on your short jog, sounds like a long time coming, before you know it you will be in the marathon!! Well may not quite, but you know what I mean. Best of luck.
Jules
Posted by Jules (Jules), 19 November 2004

Hi All,

Well thought I was being clever, last couple of days managed to get up the stairs using both crutches, took less time than going up on my bottom!
I shouldn't have got too confident, as last night I managed two steps and fell backwards, and because both hands were in the crutches, I couldn't grab the banister, so I put my foot down of my bad leg on the step down behind me, tried to regain balance on my good leg, but didn't manage it and put the foot down of my bad leg again on the next step down behind me, and fell against the wall. I must have put full weight bearing on my bad leg for about 10 seconds both times!
Oh the shooting pain in my knee, made me hot, dizzy and feel sick, also the long term aching afterwards put me in tears, and I didn't sleep at all. I've well and truley learnt by that mistake!!. Put ice on it afterwards, to stop any further swelling, but the knee feels very sore and a little stiff today. Don't think I did any major damage, else I think it would have hurt alot more for longer. Fingers crossed any way.
Stan I hope things went well for your 1st stage ACI, and your not in too much pain.
Best regards
Jules
Posted by mayme (mayme), 20 November 2004

Dear Jules,

Try not to worry too much about yesterday's mishap (easier said than done, I know). I think we've all been there and it generally seems that a one time boo-boo isn't detrimental.

I fell onto my operated leg two weeks after surgery. My Mom had passed away and I was traveling and moving about more than I had ever planned. Needless to say, I lost my balance getting into a chair - bumped the side of it hard I try to pay attention - and fell full forward onto my graft site. Yeah, it hurt. Not just the knee itself but the pins and needles feeling in my lower leg. I felt weak with fear. Some soreness the next day, too. Scared to death but found out later that I hadn't damaged the graft. But PLEASE do not attempt the stairs again - I think sometimes God gives us a freebie - so probably a good idea to sit up and take notice.  

Best to you in your successful recovery
Posted by Jules (Jules), 20 November 2004

Thanks Mayme for your post,

I know I have read before others having falls post op. And your fall and feelings you felt are the same as mine, so thankyou it does put my mind at ease a little. I'm so sorry you lost your mum at a difficult time, how long ago did you have your op?
Today the knee is not too bad, and I am going to try and cut down on the pain relief today and see how I get on. Must admit not getting board as such, but just a little fed up. Can't wait to have the staples out tuesday so I can have a bath!!
Well thanks again for reasuring words, I have to be thankful I wasn't at the top of the stairs, else it would have been a lot worse! Thanks again.
Best regards
Jules
Posted by mayme (mayme), 20 November 2004

Hi Jules,

I can tell you're still a little worried about your misstep of the other day and I had another thought. I'm not sure where your graft sites are or how many, but my OS explained & demonstrated to me in his office what kind of fall could actually hurt my graft site. He said mine would be the equivalent of stepping straight-legged off a curb (onto the operated leg) and falling full forward onto the knee with no bend in the knee.

Perhaps, next time you see your OS you could show him exactly what happened. I bet he'd know exactly how those forces affected your knee.  

Continued good luck!
Posted by Jules (Jules), 20 November 2004

Hi Mayme,
I won't see my OS untill after xmas. but really I'm not so worried now, but I will ask him.
I've not taken as many pain killers today, and the knee has been a little sorer, but I'm coping with it.
Been a bit fed up today, so I thought sod it, I'm going to have a bath, managed resonably well on my own to get in and out of the bath, with my leg constantly out of the bath, funny to see, fly on the wall and all that!
I have had three grafts in total, one from my shin bone and place under the patella, two collegen grafts placed on the trochloea, in total measuring about 8cm sqaure, so quite a lot of damage. Thats why I have to non weight bear for so long.
To have damaged your knee straight legged and falling onto it forward keeping it straight legged would take some doing, its natural to bend it when falling isn't it?
Well thanks again.
Best regards
Jules
Posted by Jules (Jules), 23 November 2004

Hi All, just a little update:-

Tuesday 23rd November 2004. Nurse came today to take out my staples and because there was a very tiny gape, she had to put some butterfly sutures on, just to hold it in place. Less than half of them were really painful when they were removed, so overall not too bad. I have been keeping up with my exercises, and started with my bike yesterday. Managed only three lots of two and half minutes yesterday, but managed a terrific nine and a half minutes this morning, but have been told by the nurse to leave off the bending the knee exercises today and tomorrow, to aid further healing with the staples coming out. Still having some strong pain when trying to lift the leg up and down off the settee or bed, and getting the painful tight stretching feeling when doing the bending exercises, to the point when on the bike, it starts to sting, so I stop at that point. The reduction in swelling seems to have stopped, have seen no further improvement for a few days. Going to see the physio Thursday with the hope of starting hydrotherapy next week. Been told I can finally have a proper bath Friday, can't wait!
Hope all well with you.
Best regards
Jules
Posted by Stan_Greenwood (Stan Greenwood), 24 November 2004

Hi Jules

I just came back to work today (have no e-mail at home). Sorry to hear about your absailing incident!! Glad you didn't ruin all the hard work though.

My Knee is a little sore still, but on the outside of the joint it is completely numb??  I'm actually looking forward to the next stage now as I want it all over and done with!

My OS has said that I will definately be in Plaster-cast for at least 8weeks, so not much partying over xmas/new year!!

Hows your leg looking with the staples out, send a pic if you can. My OS said that he is going to cut straight across my knee rather than around the patella as you have had.

Speak to you soon

Stan  
Posted by Jules (Jules), 24 November 2004

Hi Stan,
Welcome back, your back at work quickly, mine was so sore I didn't go back to work, but then again my job makes me walk up and down wards all day and I did have both knees scoped and one knee harvested.
Whats your date for your 2nd stage?
Why plaster for 8 weeks!? Thats a long time. It a bit strange for you to have numbness after a scope and harvest, but my knee is totally numb on the right and top of the knee, and have been told it may not return.
I know how you feel about looking forward and wanting to get the second stage done, but now I'm here, theres a lot more to go through, the op is nothing really to the rehabilitation.
At least I have the partial-weightbearing 3 days before xmas. so hopefully get about a little better.
I will send you a pic of my knee now, but attachments playing up at the moment, but will try and work round it.
How come they are opening the knee straight across? Are they taking the graft from the shin?
Email you soon with the pic if I can get it to work.
Best regards
Jules
Posted by Stan_Greenwood (Stan Greenwood), 24 November 2004

Hi Jules,

I'm going back on the 8th December.
My OS said that every body makes the incision differently and he prefers to cut straight across.  I think he is putting me in the cast for so long as I've been going to him for nearly 10yrs now, and everytime after the op's he tells me I do to much to soon, so I presume its just for damage limitation!

Look forward to seeing your pics (sounds morbid, but you know what I mean!)

TTFN

Stan  
Posted by blue_ezzie (blue_ezzie), 25 November 2004

Hi,

How much are you able to bend your leg Jules? I really struggled with the leg bending after the op... you aren't supposed to push it further when you are in pain but it's a bit of a Catch 22 because I have lost the full flexion in my knee. Made it to 120 degrees flexion yesterday in physio though, which was SUCH an exciting milestone!

Stan, the left side of my left knee was totally numb for a few weeks after the second stage of the operation but the sensation came back very gradually in the following months. I don't have full sensation but I barely notice that now. I also lost feeling in my little finger for a week after the op and every now and again that goes again. Weird!!!!

Betcha looking forward to that bath Jules. Showering on a plastic chair with my leg wrapped in plastic drove me crazy!! Get in that pool as soon as they clear you as well!! It's so exciting to actually be walking, even if it is in water  

ezzie


Posted by Jules (Jules), 25 November 2004

Hi Ezzie,
Good to hear from you again.
I can only bend my knee 80-85 degrees at the moment, because of the pulling and the indent on the inside of my quad muscle, it's painful and stings inside, also on relaxing the knee, it continues to sting for a while afterwards. I don't push it too much when I reach that painful bit, but I do slightly, as I can't see how it will get past how far you've gotten if you don't push past it  a little, if you know what I mean... no pain and no gain and all that!
Well done getting to 120 degrees flexion, seems along way for me to get to that with this tightness and stinging in the quad muscle, but I'm sure I will get there eventually.
Most of my knee is numb, I hope mine is like yours and comes back to a certain degree, its not nice having it totally numb, but thought it was odd that Stans was numb after the first stage. But maybe Stan yours will return before your second stage.
Really am looking forward to a bath, i haven't managed to have a shower, as I haven't got a seat, so its just been a strip wash whilst sitting on the loo seat, but did try a bath twice with my leg out of the bath, but not the same and is very uncomfortable, just want to get my leg in and have a proper one!
Yes I really want to get in the pool, hopefully next week, will find out today, as going to the physio. The gape in my wound is closing nicely now, so fingers crossed.
Keep feeling a bit up and down at the moment, stuck in the house, hope to go out in my wheelchair this weekend. But my leg aches if I leave it down for a length of time, and when I put it down off the settee, it changes to a funny red/purple mottled colour. Looks odd.
Well glad to hear things are going well. I will do a quick post later after I have been to the physio at 15:45pm.
Best Regards
Jules
x
Posted by JulianUK (JulianUK), 26 November 2004

Hi All,

I've not posted for a while because my computer was broke.

Good to read all your posts and see that you seem to be progressing nicely.

I'm now 4.5 wks down the line with my right leg having had the left done last year, but most of you now that by now. The second has gone far easier as the defect wasn't as big and I didn't need my patella grafting. I can bend to 110 degrees now and have started work in the pool. That's such a good feeling, can't wait to start walking in it in 2 wks when I can partial weight bear.

I've also got numbness above the knee. My PT says it's partly from the harvest site and also the swelling. It took a while to get my quads working because of it.

Changed some exercises at PT this morning, now able to do leg raises with weights in three directions. Helps get the muscles working a bit more.

Just to say that my left leg is holding up well under the increased strees which bodes well for next year.

Hope you all keep progressing well and will catch up with you next week.

Take care,

Jules.
Posted by Jules (Jules), 26 November 2004

Hi All.......Friday 26th November 2004. Having a real distressing morning, the indent on the inside of my quad muscle and the stinging I am getting on bending the knee and when using the bike, is getting extremely painful, only managed one and half minutes on the bike and can't bend my knee as far as I was doing. Feel really down, my hands hurt from using the crutches, my bum hurts from sitting on the bike seat, and my left knee (which also has osteoarthritis grade 4) is aching and finding it difficult to get up and down on it!! I'm sure its because I haven't been out and how ristricted I am that's why the slightest thing seems a lot worse, but had a good cry this morning, can't say I feel that much better. I saw the physio yesterday, she says I have a highly sensitive scar and I have stroke it and gently tap it for a minute, ten times a day to try and de-sensitise it. She still says the indent, is due to the quad muscle as needs to be strengthened. I tend to not agree with this, it just doesn't feel right, and its getting worse. I've tried riding through the pain, I've tried resting it, nothing works, it's like 20 bee stings inside the start of the quad muscle and the indent is really tight. I phoned the OS at Oswestry, waiting for him to get back to me, I phone my OS at my local hospital, he's not there and no one can help me, spoke to the on call registrar, who knew nothing about ACI to help me. Have to phone back Monday if get no joy from Oswestry. I'm probably over reacting but I feel there may be an adhesion causing the indent and the pain. Waiting for appointment to start hydrotherapy, hopefully next week, they have put through as urgent. So I will have to wait and see.
Julian, glad to hear your recovery is going well, I too can't wait to go onto partial-weight bearing, got another 3.5 weeks yet.
Well will update as things happen.
Best to all.
Jules.
Posted by Stan_Greenwood (Stan Greenwood), 26 November 2004

Hi Jules,

I'm really sorry to here your having to go through so much pain at the moment!

I hope everything sorts it self out quickly, it must be awful!

My leg is still numb on the outside and it feels like its never going to have any feeling again!  I keep getting tempted to smack it one with a hammer to see if I'll feel anything!

Anyway, hope you manage to get back some kind of comfort and pain-relief and have a good weekend (well as best you can).

Speak soon

Stan.
Posted by Jules (Jules), 27 November 2004

Hi Stan,
Thanks for your kind words, had a really bad day yesterday, the worst yet. Feeling slightly better this morning after a couple vodka and cokes last night!
My OS from Oswestry finally phoned me last night at 18:20pm, I asked him if there could be an adhesion there, he said yes, that was a possiblility, he said it wasn't uncommon to have teething problems post major knee surgery, and I have to go and see him on Wednesday first thing, if there has been no improvement over the next few days, which I can't see happening really. I am going to still do the exercises as much as I can, I don't want to stop completely for four days, as I think this would cause even more problems.
The worry is now though, that if it is a adhesion, will it mean a small operation to free it? Something I can do without! So its another 4 hour round trip to find out!
Stan, put that hammer down now!! It won't make any difference, I pinched my knee where it was numb, didn't feel anything, just left a little bruise. Try tapping around the harvest scar and the area it is numb, as I'm doing that to try and desensitise the scar, I also do it on the numb area, and there is a slight tingling sensation inside, so maybe it will return in time.
Well big day today, going out in my wheelchair I got off ebay! WOW!! Sad arn't I?? Easily pleased me!
Well hope everyone is well.
Best regards
Jules.
x
Posted by Jules (Jules), 27 November 2004

Well big day today, went out in the wheelchair, went into town and did a little shopping and had a pub lunch, it was great to get out for a couple of hours. Although my partner was a little tired and hot after pushing me round for 2 hours!! I'm worth it though!
Managed to do 7 minutes this morning on the bike, but tried this afternoon and only managed 45 seconds! I will keep trying though.
But can't tell you how much better I feel just to get out.
Thats it now, I will be getting the kids to take me out at every chance!
Well catch you later.
Jules
x
Posted by richie (richie), 27 November 2004

Hi Jules

Hope the pain and mobility gets better soon.

I went for my 12 month arthroscopy last week and the patch is working well, they were supposed to take a biopsy for the trial,  but lost the needle!!! I also asked them to look at my knee inflexion and they found an old meniscal tear which they think is the underlying cause of my locking knee problem.

Joined a gym propoerly today, so can start the proper fitness work now, well when the niggling pain from arthros has gone.

Keep working at the flexion, it will get a lot better when doing hydrotheraphy although you may not feel it is.

Richie
Posted by Jules (Jules), 27 November 2004

Hi Richie,
Thanks for your post, I happy to hear things are going well for you. What use in your part in the trial, if they won't have the full findings now?
Will they need to repair the damage to your old meniscal tear, or are they going to leave it for now?
Had a better day today, tried the bike again tonight, but only managed less than a minute. Couldn't do my knee bend exercises properly either.
I am hoping the hydrotherapy will improve things too. I will have to wait and see.
Best wishes.
Jules
Posted by brattkids2 (brattkids2), 27 November 2004

Jules,
Just a quick hello and a word to say I hope you start feeling better soon. Everyday is one day closer to getting better!!!!!

Keep us posted
Paulette
Posted by Jules (Jules), 28 November 2004

Thanks Paulette.
Hi All,
Must have been that day out yesterday.......
Had a rather long morning in bed, got up at nearly midday! Thought I'd better catch up on my exercises, as usually on my second course of the day by now, so I thought I'd do two sessions together if I could..... and WOW!!! 40 straight leg lifts, not too much of a problem, 40 back of the knee presses to the floor, no problem and wait for it......... 17 minutes on the bike, no problem!!! Hope this is the turning point and won't need that appointment at Oswestry after all!! Fingers crossed guys and girls. Hope it carrys on throughout the day.
hope alls well with everyone.
Best wishes
Happy Jules.
Posted by blue_ezzie (blue_ezzie), 29 November 2004

Hi Jules,

Your leg raises and bike ride today are fantastic!! I could barely manage 10 raises when I was at your stage, so well done!! It's all about keeping up the motivation to keep doing the exercises, even when it is exhausting and painful and there seems to be no improvement. Someone (I think from this board!) gave me some great advice about this operation, which was that the recovery is measured in weeks (and months), not days, and if a few days are hard, that means there are a good few days coming. I've found that to be the case the whole way through my rehabilitation and it's got me to where I am now, which is a virtually pain-free existence (although a little slower) and a life which is not dictated by my knee!! Keep up your good work, the exercises are so important. And so is that little bit of TLC, including pub lunches  

All the best
ezzie
Posted by Jules (Jules), 29 November 2004

Thanks Ezzie,
Yes your so right, and today, difficulty in doing the knee bends and couldn't do the bike because of the tightness and stinging. Think I will have to go to Oswestry wednesday either for another op, or just to reasure me and put my mind at rest, I need to get it sorted out in my own mind.
Had a bad time with a parcel man this morning, I was in bed, the door bell went, I shouted twice very loudly (he would have heard me) told him I was on crutches and would get to the door. He didn't even wait 30 seconds. Got to the door after stumbling and putting weight on my leg for a few seconds which hurt! opened the door and heard he was turning his van round, so got down the entry and and waved at him as he was coming back down the road and passing my house and he totally ignored me! I was so angry I was crying, didn't notice my knee aching until I had calmed down. Phoned up the parcel place and complained!
Any way, I know what your saying, I know the rehabilitation is long and slow, but I do feel I would be doing even better if I didn't have this restriction from this tightness and stinging in the quad muscle.
Well hope you are well, and I will keep you informed after my visit to Oswestry.
Best regards
Jules
Posted by JulianUK (JulianUK), 29 November 2004

Hi Jules,

Just to let you know that I have tightness above my knee and sore quads, particularly the day after exercise. My PT puts it down to the inflamation, I had a haematoma after my op and he says it can take a while for the bruising and blood clot to go away. Massage and ice are the best two remedies.
He also says that my quad will be attached to my femur close to the harvest site and that could be causing the pain, also it was cut through a bit.

I haven't considered bike work yet as I've been told to leave it until 6 week stage when I can start partial weight bearing. I am however up to 80 leg raises with a 5kg weight placed above my knee.

See your OS but not sure you need an op. I had similar problems with my left leg and can remember the ups and downs. It used to do my head in, but having been though it once I'm a lot calmer about it. I know that this takes time and just when you think you're doing well you over exercise, strees the graft and have to reat for 3-4 days.

Hope this info helps.

regards,

Jules.
Posted by Jules (Jules), 29 November 2004

Hi Julian,
Thanks for your post, there are a few questions I would like to ask you.
Did you have an indent when bending the knee as well?
Was the pain like an excessive stinging pain?
I've seen haematomas in other areas, and don't think thats what it is, as it can be better in the morning but alot worse at the day goes on, but today its been bad all day. I can feel some scar tissue near the area, thats why I think it may have adhered to the quad muscle. Yes your probably right I'm thinking worse case senario, with an op. It may just work itself out. I'll find out when I see my OS Wednesday. Being in the professional occupation, I tend to think more medical.
Isn't it vastly different how the OS's have their rehabilitation programmes, as mine wanted me on the bike asap, for half an hour a day, but not managed it yet, I know, still early days.
But thanks for letting me know, especially knowing from previous experience. I will keep it in mind. Let you know what my OS says.
Sounds like you are getting on ok though. Its nice to hear the positives, don't seem to be having many myself at the moment, but I know that sooner or later, there will be more for me, I will work on that!
Best regards
Jules
Posted by JulianUK (JulianUK), 1 December 2004

Hi Jules,

Still getting pain above my knee from the haematoma, can't seem to do anything to ease it. Particularly bad first thing in the morning. Once I get my knee a bit mobile it seems to ease off.
Have no indent when bending my knee that you talk about, you may well have some adhesion going on but your OS will probably have the answer.
Other than that it's going quite well, I'm sure when the swelling goes down it will make it so much more comfortable.

Off to the gym to do my routine and get in the pool. Won't start bike work for another 10 days.

Just remember that my left leg took a lot longer to recover than this one is doing, so just be patient. I know it's hard but this op has a long rehab program. As blue_ezzie says think in terms of weeks and months not days.

take care,

Jules.
Posted by Jules (Jules), 1 December 2004

Hi Julian,
Thanks for your post.
Hi All,
Went to Oswestry this morning, took just under 2 hours, got there at 08:50am and saw Prof. Richardson's registrar at 09:30. He put some lignocaine (local anaesthetic) close to the top part of the scar and then in the indent, well when he put it in the indent I yelled out, and everyone heard me in the waiting room (as my partner was in there waiting for me), he got me to bend my knee again, once it took effect, but still the stinging and pain was there, so this ruled out a trapped nerve. He spoke to the prof. and they agreed that more than likely there is a stitch which is stuck on something and is pulling, or an adhesion. So the plan is to have me back in 2-3 weeks to open the top of the scar again and sort it out, unless there is improvement I have to phone and cancel the operation. Like me they are concerned about it slowing down my rehabilitation.
I have hydrotherapy for the first time on Friday and am looking forward to that, I'm hoping that the stitch will dissolve and the hydro will help, so I won't need the operation, not good in christmas week, to have another op. Still have to keep up with the exercises I'm doing at the moment and keep trying the bike, and still have to keep non weight-bearing for a further 3 weeks.
So at least now I know whats going on and what may happen, so it has put my mind at ease, and I won't get so upset when I can't do any of my exercises.
Hope all well with everyone.
Best regards
Jules
x
Posted by Jules (Jules), 2 December 2004

Hi All,
Thursday 2nd December 2004. Well what a turn around!!!
18:10pm feel really pleased with myself today, managed to do in total 120 straight leg lifts, 120 back of knee presses to floor and 120 knee bends and 30 minutes on the bike!
Its like the pain I had from the injection into the indent as released or done something, as I've had no stinging at all today. Lets hope that this is the turning point I have been waiting for and I won't need that op now! Hydro tomorrow at 11:45am.

Best regards
Jules
x
Posted by Jules (Jules), 3 December 2004

Hi All,
Went to hydrotherapy today, bit of a waste of time, the physio was unsure with what to do with me, as she didn't understand the surgery and they had lost my rehabilitation program I had given them. So I had to phone Oswestry to send me another one. So I spent 15-20 minutes doing a cycling motion in the water and that was it. They changed my crutches to long wooden ones, and said I shouldn't have the arm ones, although I've been to physio the last two weeks and no one said anything to me! I am to go next week, but there will be a different physio then, which I will have to go through the whole thing again, but they want to try and get me to see someone who knows a little bit more about this surgery, but she is fully booked at the moment.
The physio I saw in the past two weeks was a student and I shouldn't have been assigned to her in the first place and assigned to a more senior physio.
So don't hold out much hope for next weeks session!
Still going great guns with the exercises at home and the bike. So I'm pleased with that.
Hope everyone is ok.
Best regards
Jules
Posted by brattkids2 (brattkids2), 3 December 2004

Hi Jules,

That sucks that you get so hyped up over something and it turns out to be such a dissappointment. Hopefully next week will be better with your hydro therapy!!!

You are doing awsome on your home exercises keep up the great work.

Have a great day
Paulette


Posted by Stan_Greenwood (Stan Greenwood), 3 December 2004

Hi all,

Getting closer to my 'Big' day, and I will let you know how I get on.  

I havn't slept properly for the last few nights, so I'm going to go out this weekend and have to much to drink for the last time in a while!

It seems through talking and reading to a few of the chats on here, that there really must be quite a lot of different ways of going about the rehabilitation process and after care.  I know that Jules for instance is doing very well after 3 weeks post op at her exercises, but I have been told I'm in a full length plaster cast for at least a month!!  I cant help thinking that I have drawn the short straw!

Anyway, hope everyone is well and has a great weekend!

Stan.
Posted by brattkids2 (brattkids2), 3 December 2004

Keep you chin up Stan before you know it you will be better.

Best of luck to you on your upcoming surgery and keep us posted.

Paulette
Posted by Jules (Jules), 7 December 2004

Hi Paulette and Stan.  
I went out over the weekend in my wheelchair and managed to negociate the disabled toilets with it!
I know I was disappointed in my hydro, but you never know it may be better this week. Though I still haven't received my new rehabilitation program from Oswestry yet, but have a few more days yet.
I won't need the op now, as since that injection in the indent (that was extemely painful) I haven't had any stinging. The knee still aches a lot, and with the knee bending exercises, I just have tightness on top of the patella where the scar is, which is expected.
The only other thing is, I can't believe how tired I feel all the time, especially around 3pm. I get up around 9am, do a few little jobs that I can just manage to do, like putting washing in and out of the washing machine and the dryer, and loading and emptying the dishwasher, making cups of tea and a sarnie, and doing my 120 leg lifts, 120 back of the knee presses to the floor, 120 knee bends and then 30 minutes on the bike (which is aggrevating my left knee more than my right operation knee!). I think I'm up to about 90 degree bend now, I will have to get the physio to check it.
Stan I have sent you an email, but again best of luck for tomorrow, I'm sure you will be fine. I'm here if you need to chat to someone. As for sleeping, you probably won't sleep properly untill your back out of hospital and at home again, thats how it worked for me. Hope you had a good session at the weekend, as you won't want to be drunk and in charge of a plastered leg as well!!  
It will be harder for you in plaster, its hard enough non-weight bearing for six weeks and without the plaster! I know easier said than done, but try to stay positive and up beat.  
Well hope all is well with everyone else, going to one of my works do on tomorrow evening, might be fun, a couple of drinks and me on one leg and using crutches!!
Best regards
Jules
x





Posted by Stan_Greenwood (Stan Greenwood), 7 December 2004

Hi All,

Yes Jules I did get completely plastered at the weekend!!!

Hope your Hydro' goes ok this week.

I will let Jules know by text how I get on 2moro, and if she could be a sweetie and let everyone else know on here I would be eternily grateful.

I don't have access to e-mail until I come back to work, so this is last post for me for a while, I look forward to speaking to you all again soon.

Fingers crossed!

Stan  
Posted by blue_ezzie (blue_ezzie), 8 December 2004

Best of luck Stan!! Will be thinking of you!

JulianUK, how are you doing? Hopefully not still in pain from the haematoma?

Jules (and Julian!) your regime is amazing, I am so impressed by how diligent you are with your exercises. This will all pay off over the next few months I assure you! I am just at a point right now where I find it sooo hard to get motivated doing anything and my quads are *still* wasted. But no wonder you are tired. Don't be too concerned, remember the massive trauma your body has gone through with this operation and work on building up your stamina gradually.

Re disability toilets, and wheelchair/crutches in general: my experience this year, although only months and not years off my feet, was hard enough...I've decided to study Disability Law as a summer elective in my degree and am going to use this experience as a positive to change some stuff in this world!!!

Jules, let us know how you get on with the Hydro second time around. Are you allowed to weight bear in the water? And please update us with Stan's situ.

All the best
ezzie
Posted by JulianUK (JulianUK), 8 December 2004

Hi All,

First of all good luck Stan, you know where to come for advice!

Now at 6 weeks post-op and can start partial weight bearing with crutches. Will be starting to walk in the pool first as I found this so beneficial last time. The haematoma has started to subside (at last) and can now bend the knee 115-120 degree. Also started on the bike this week and thats already had a positive effect on the bending.

Ezzie - I know it's hard but my motivation for walking again is so I can take my kids to the park and walk my dog. When your daughter says it's over 2 years since she played outside with you, it's then you realise it's worth the pain and patience. I know from having the left done that by next summer the right should be pretty good.

Anyway good to see everyone is still going forwards, although remember you will go back sometimes for upto a week before you can progress again.

Jules - Just remember the patella graft is far more delicate than any other. My left had a patella graft and my PT made sure my rehab was a lot slower than this time around. I wouldn't worry about bike work so soon as I didn't start unil 6-7 weeks stage with my left, and even then it was only 100 revolutions at 40rpm to start.

bye for now,

Jules.
Posted by Jules (Jules), 8 December 2004

Hi Ezzie and Jules,

Good to hear from you again, not heard from you in a while.
Let me take this opportunity to say thank you to everyone for keeping this post going, its proven to be very successful and one of the best on here, so thanks to all.
Ezzie, I wouldn't say I was diligent in doing my exercises, like Julian says, it can be hard getting the motivation to keep doing them, especially when feeling so tired (and not really doing anything), but I try and keep it into a routine and do them about the same time every day, and I try to get up about 9am, before everyone goes out, so I get a cup of tea made for me, and so that I don't end up spending all day in bed, which some days I could very easily do! I can't get over how my right leg is so wasted, it's not just the quad muscle but my calf muscle too, and it looks so thin! I've taken a pic to keep my journal up to date.
That's great you looking into disability, its not just the toilets and I've been into two different ones so far, and one was absolutely disgusting! (Water all over the floor). I've also noticed that people talk to my partner and not me in the chair, yet wheeling through town, they look at me then! I was surprised how uncomfortable sitting in the chair really is, the paths are uneven (keeps jolting my knee, so I place the right foot over the left to cushion the blows) and I get bum and leg ache after about two hours in it. I hold my hat off to those who have to be in one long term or permanently. But at the end of the day, it gets me out (my life line), and it was well worth paying £40 on ebay for it!
So you go for it and make those changes!!
No I don't weight bear in the water, my first session was only doing cycling motion in the water for the whole 20 minutes, as they didn't know what to do with me! I hope they have more of an idea this Friday.
Jules, how is it being able to put some weight on your leg? Great I bet, how long are you partial weight bearing for? I won't be able to do my first partial weight bearing in the pool, unless I do it a few days early, as they are closed the week I should start, due to xmas. WOW! Well done 115-120 degree bend, seems along way off for me, but working on it. I find the bike quite easy, it affects the left knee worse than the operation right knee, and it's the knee bending and leg lifting exercises that hurt more for me.
It's also good to have something positive, to keep you motivated and what better than taking your daughter to the park, keep up the good work!
I have to keep saying to myself, that I have three grafts, so I have to be extra careful; it just worries me that the physio doesn't know what to do with me, when it should be a specific rehabilitation regime. Its odd that my OS wanted me on the bike ASAP, and yours was 6-7 weeks; they can be so different can't they?
Well off out tonight, only to Italian restaurant round the corner from me, so my partner is wheeling me round, and then I'll use my crutches inside, then when I've had enough, I'm calling him to wheel me back. Can't get on with the long wooden crutches very well, may ask for my elbow ones back on Friday. Well I'll have a drink for you all tonight, and for Stan.
I will let you know how Stan is doing, when he texts me, he said he would let me know post op today, if he feels up to it.
Best to all.

Jules
x
Posted by Slater (Slater), 9 December 2004

Hi there jules (and friends)

just thought id say well done on this post...i think its awesome...im down in melbourne australia and having my scope and harvest on 20/12/04 then hopefully implantation on 17/01/05.  

Well done, keep up the good work.....this is one the best things on the net for knee sufferers and ACI in particular....and  i found yours extremely useful and informative.....

Best of luck....Slater (melbourne australia)
Posted by Jules (Jules), 9 December 2004

Hi Slater,
Thanks for your complementary post.
We will always welcome new comers to this post, the more the merrier!
How common is ACI in Australia?
Please keep in touch with your proceure as it will be interesting to hear how it is done and how the rehabilitation works in other countries.
Its great to hear that people are finding this post I started useful and informative, which is what I had planned for this.
Well I went to one of my works do last night, managed just over two hours before I needed to come home when my knee started to ache. So not too bad.
Going to my second hydrotherapy tomorrow, so let you all know how I get on.
I haven't heard any news from Stan as yet, hope hes ok, maybe he forgot to take his phone, or it wasn't charged. I'm sure he will be in touch soon.
I sent him your best Julian and Ezzie, so he knows we are thinking of him.
Best to you all.
Jules.

Posted by Jules (Jules), 10 December 2004

Hi All,

Just got back from hydro, well it was better than last week. A new physio, but seems ok, they actually found my rehabilitation programme which they lost last week.
I did some different exercises this time, with a arm band on my ankle and foot and did some resistance exercises.
But the best news is, I got the physio to measure the degree of my knee bend and guess what, I've reached a massive 117 degree bend!! WOW! I'm really pleased with that, from 80 to 117 degrees in just over 4 weeks since the operation. So the exercises are paying off.
Well hope everyone is ok, I text Stan again, but still haven't heard anything as yet, will keep you informed.
Best Regards
Jules
x
Posted by Jules (Jules), 11 December 2004

Hi All,
Just got off the phone to Stan....
Hes doing really well, they did a collegen graft under the patella and also a realignment and fixing (he will never get through customs quietly again!), hes in plaster for at least two weeks, and has to go back on the 21st to have his plaster removed and stapels taken out. He is also allowed to weight bear, which he says is not that painful, just stings a little when he does it.
Sounds like he had a couple of rough moments, but I will let him tell you about them when he gets back on here. He says he may have to stay in for a couple of days when he goes in on the 21st, to get on the CPM machine, to get his knee starting to bend again after it being straight in plaster for two weeks, then he may be in half plaster or just a brace. And he got his PCA post op!! (no leg block though). But he did get some morphine tablets to take home. All in all he sounds very cheerful and is getting about better than me! Good luck to him.
As for me, did my usual saturday trip into town in my wheelchair, and had a couple of drinks and lunch, also did a bit of xmas shopping. Another good couple of hours out of these four walls.
Hope everyone is doing well. I will keep you posted. Any messages for Stan, and I will pass them on for you.
Best regards
Jules
x
Posted by Jules (Jules), 13 December 2004

Hi All,
A little up date, sites, I'm to start partial weight bearing next Wednesday (after 6 weeks non weight bearing), and I thought I should confirm from the physio in Oswestry, just how much weight I should actually put on my leg and for how many weeks. I did this as my local hospital is not sure of what to do and when to do it, and I did not want to do anything that would jeopardise my grafts. The physio I spoke to said that I should put weight on that was comfortable to my knee, without too much bend on it, and no more than half my body weight, also that I should stay partial weight bearing for four weeks, until I see the professor on the 19th January. I'm glad I did this as I was unsure, it seemed a bit of a grey area, and as everyone is different in there graft sites, so it's better to confirm my actual rehabilitation specifically to me. so it's better to confirm your actual rehabilitation specifically to you.
Hope everyone is doing well.
Best regards
Jules
Posted by Stan_Greenwood (Stan Greenwood), 15 December 2004

Hi All,

Back in to work today, but not sure how long for (legs stinging!).

As Jules has told you I am doing ok post op, just a little sore.  I am dreading having the cast off though as I think it will be difficult to stand up without it!

Hope everyone is ok

Speak again soon, lots of work to catch up on!

Stan x
Posted by Jules (Jules), 15 December 2004

Hi Stan,
Are you a nutter or something! What are you doing back at work! You only had the op a week ago!!
No seriously, please take it easy, else you will find yourself having major problems. Was going to text you today to see how you were getting on, obviously really really well. Well good for you, but Im worried your doing things far too soon.
A physio phoned me from Oswestry yesturday, to say I should partial weight bear and build it up to full weight bearing within two weeks. So I'll let you know how I get on.
Stan please take it easy!
Kind regards
Jules
Posted by Nick_Knack (Nick_Knack), 15 December 2004

Is there anyone here with long term 3-5 years experience with ACI?  Anyone with a positive experience? Negative outcomes?

Thanks,

Nick
Posted by Jules (Jules), 15 December 2004

Hi Nick,
Not me as I'm only 5 weeks post ACI, have you had it done if so when? I have read on here that someones ACI was a success for 7 years. But everyone is different and everyone has differents sites for their lesions. Hope this helps.
Best regards
Jules  
Posted by Jules (Jules), 18 December 2004

Hi All,
Hydro went ok this week, I was the only one in the pool this week. The physio said I may have to try climbing the stairs in the pool if I can't manage to do it at home over the next couple of weeks. As I have no hydro for the next two weeks.
The only thing is I'm having a lot of aching in the back of my knee that goes down to my ankle. Its not nice. Had trouble doing my knee bends this morning. I got my half crutches from the hospital for wednesday when I start my partial weight bearing.
Good luck to Stan next week, when you have your plaster removed and staples removed.
Hope every one has a lovely xmas and a happy new year!!
Jules
x
Posted by blue_ezzie (blue_ezzie), 21 December 2004

Hi Jules,

How are you managing your stairs at home right now? I bet you are looking forward to being able to partial weight-bear this week...it will make the stairs much less perilous!

I found it really hard to work out how much "20%" of body weight was when I first started weight bearing, but I started off really gingerly putting my foot on the ground and just took more weight through the leg in the following weeks as I felt more comfortable and my physio advised. I never did work out how to exactly gauge "20%" though!!  How much longer are you on crutches? How long has it been now?

Stan, how are you motoring?

A merry festive season to all!

ezzie


Posted by Stan_Greenwood (Stan Greenwood), 21 December 2004

Hi all,

Just got back from hospital after having Cast off and Staples out. Looks hideous, and I have no muscles left!!

Start phisio 2moro so hopefully be able to bend my knee a bit, as at the moment it just wont budge!

I have been told by my surgeon to get some movement back before trying to wheight-gain, I wish I had some support for my leg though over xmas at least as I was hoping to go out.

At the moment I wish I still had the cast on, as its even more difficult to get about as I was full weight bearing with it on!

Anyway, I hope everyone is doing well and pain free??

Have a good xmas all, and I will speak to you again in the new year (no e-mail at home!).

Best wishes and thanks to everyone for your support, especially Jules for starting this page; I think you should give yourself a big pat on the back for such a great success!!

Stan x

P.s excuse the spelling today, but I have taken rather a few pain killers this morning (including Morphine) in case having staples out hurt (wich it didn't really to much).
Posted by Jules (Jules), 21 December 2004

Hi All,

Ezzie, I still go up and down the stairs on my bum, I actually started partial weight bearing today for the first time, not putting too much weight on at all, not much pain with it, but feels great to have both feet on the ground, get a bit of tingling in the foot though. I think it will be a while before walking up the stairs on both legs, a bit scarred to try really. I have to gradually work up to full weight bearing within the next two weeks, which is not a lot of time, considering I have been non-weight bearing for six weeks! I bet its hard judging 20% I don't know how long I will be on cruthches for (its been six weeks so far), I really think I will need at least one crutch for the next 6 to 8 weeks, but we will see. I'm still getting a lot of aching in the back of the knee, especially on waking in the morning when I straighten it, and doing my knee bend exercises. Merry xmas to you too and have a good new year!  
 
Hi Stan, How many staples did you have, don't worry about how it looks, after the sweling goes down it won't look too bad, I call my scar my war wound, and am proud to show it off, just to get the reaction! I know I'm weird!! Get great reactions though!! The muscle will take alot of work and time to come back, and the thing is you will have to be motivated to get it back to normal.
Are they not going to get you on the CPM  machine? Even though its painful to move, try and move the knee as your physio tells you, every little helps more than you realise. Look at me went from 80 degrees to 117 degree bend in only 4 weeks!
Why don't you ask the physio for a brace support for over xmas, as for going out, I think it may be a bit soon, and you may do damge if you push yourself to go out, get the mates round, and party in, its just as good, and you don't have to stagger/hop home!!
You may find it useful to borrow/hire/buy of ebay, a wheelchair, mine has been a god send to get me out and about.... mainly to the pub!!
Still needing one lot of pain releif per day, but trying not to take them really, but i'm not going to suffer!
I hope things get easier for you soon Stan. Try and have a great xmas and an even better new year.
And thanks for your compliment about this page, but it wouldn't have been a success without everyone who looks at it and especially all of you that reply to all the post, so thanks to everyone..... please keep it going.

MERRY CHRISTMAS TO ALL, AND HAVE A GREAT NEW YEAR.
LOVE JULES.
XXXX




Posted by Stan_Greenwood (Stan Greenwood), 21 December 2004

Hi Jules,

Its funny you should mention the brace, as I have just put the phone down on the phsio department.  I asked if I would be able to get a brace 2moro when I see them, but I will need to wait until then to find out!  I definately need one though!

As for the staples - 37!  I don't really care that it looks bad, as you said it is nice to show off as a talking point if your bored of the usual conversation in the pub!  Although they had to put some ster-strips across the bottom this morning as it has healed wrong and also since coming back from the hospital right in the middle of my patella is near enough hanging open about an inch & 1/2 long so will get that stuck together again 2moro if its not to late!

Speak again soon, if you want to say hello over xmas or just chin-wag ring my mobile.

Bye now

Stan x
Posted by Nick_Knack (Nick_Knack), 21 December 2004

hi,

where was all of yours pain? I have grade 3 medial femoral condyle changes and grade 3/4 trochlea changes and my cartilage under patella is shot.  Anyone else with this diagnosis who had ACI?

I really appreciate everyone's feedback.


Nick
Posted by Stan_Greenwood (Stan Greenwood), 22 December 2004

Hi guys,

Just been to phsio for the first time, I managed to get 50% bending which I thought was quiet good for only one day out of plaster-cast??

Couldn't get a brace though as they didn't have them there, wich is slightly annoying to say the least!

Anyway, hope all is well with everyone.

Merry xmas

Stan x
Posted by Jules (Jules), 22 December 2004

Hi All,

Wow!! Stan, 37 staples, I suppose I would have had about that many if they had use staples to close the shin graft site as well, but I'm glad they just stitched it from the inside. Just keep the gaping areas clean, the last thing you want is an infection. I used cooled boiled water and sterile gauze to clean it and then clean/sterile mepore dressings every other day. I too had to have the steri-strips over the patella part of the scar, as it opened about 2 inches in length, from doing the knee bend exercises. You can get all of it from the chemist and your steri strips, as the hospital don't give you many extras!
Sure thing I will give you a ring later.
Nick, yours sound near enough exactly like mine, your knee must be bald too of cartilidge! I had pain all over the knee, and it was different at different times and days. But mainly underneath the bottom of the patella, aching at the back of the knee. Also at the top of the shin bone, that ached extemely bad and it went down through my shin to my ankle. On the outer and inner side of the knee, just about every where, but not usually all at the same time, then the last few months it just kept on giving way. I had the three grafts in total to cover the three leisions, so I hope that out of three I should get some decent improvement. Hope that helps Nick, any further questions, please ask.
Stan, well done for bending your that far for the first time, keep up the good work!
Did you enquire if they could get you a brace? Did they say you could do with one?
Well my news today is that I WALKED UP THE STAIRS LAST NIGHT ON BOTH LEGS!! It wasn't too bad either, I used one crutch and used the banister to get up. So alls well here.
All have a good time over christmas and new year.
Jules
x
Posted by blackbeltgirl (blackbeltgirl), 22 December 2004

I have to say thank you to everyone, for this post.  I was just told that ACI is my best option, and the information on the genzyme site makes it sound like it's a big deal, but not the kind of thing that puts your life completely on hold.  I can see that's not necesarily the case, at least for a while.

I have a few questions, that some of you may be able to answer.  (You can answer me directly at jhbeckva@aol.com, if it's not really appropriate to this thread.)  My dr. told me my lesion is 3cm x 6cm.  And I do mean CM.  Does a larger lesion make the recovery more difficult?  I also need to lose a bunch of weight before I'm eligible for the procedure.  Frankly, I don't think I was in enough pain before my last surgery to consider something as drastic as this.  Were you in debilitating pain before surgery?  And why did you choose ACI over OATS?  I'm in the early stages of research, but so far, I'm inclined to live with the pain.

Good luck to everyone to continue healing well.
Posted by Jules (Jules), 22 December 2004

Hi Blackbeltgirl,

Thank you for your kind words on this post. It has done exactly what I set out to do. And proud of everyone for making it happen.

There is a lot of negative words going around on here for ACI, but in my research and reading what others have gone through, there are a lot more positive and more successful stories now.

My total size of my three lesions all together was 8cm square, yes CM! I don't believe the larger the lesion makes recovery more difficult as such, for me its just a more personal rehabilitation programme, for instance, my OS said that routinely ACI patients are non-weight bearing for 3 weeks, but mine was six weeks (due to the large areas for the three grafts). Then routinely they partial weight bear leading to full weight bearing over the next three weeks, but mine is now two weeks to do this. So for the extra size lesion, they have added on a further 2 weeks overall, but with longer non-weight bearing. Also I have read others that have had one smaller lesion, compare to my three larger lesions, and I'm sailing through it, have had my moments though, as everyone does, but on the whole, I feel things are going as they should.
As for your weight, I had to loose weight, not for my ACI, but decided it wasn't helping my condition, so lost it after my third bi-lateral arthroscopy. I lost 4 stone on the Atkins diet in nine months. Its does make a difference, wish I had done it sooner, as it may have slowed the conditions progressiveness.
Even though your not in that much pain, you need to get your lesion sorted before it gets any bigger, as there is a slight reduction in the success rate the larger the lesions are.
I was never offered OATS, so therefore went for the ACI, if I would have been offered a TKR, I would have gone for that, but they wouldn't do that because of my age.
But in the end you have to go with how you feel, if you loose the weight, this may reduce the pain and the progession of the cartilidge loss further, so I think thats where you should start whilst your researching.
Hope this helps.
Kind regars
Jules  
Posted by blackbeltgirl (blackbeltgirl), 23 December 2004

Thanks Jules.  My dr. didn't mention OATS either.  Since my lesion is more than double the size of your 3 combined (18 square CM) I may not be a good candidate for OATS.  And at 30, I'm also not a candidate for TKR.  I'll tell you one thing.  I've lost about 30 pounds so far just because, with about 70 to go before I'm considered eligible for ACI.  I think I'm scared enough - both of the ACI and of the possible pain that may eventually arrive - that I will do everything in my power to drop the weight.  As you said, hopefully that will keep the knee healthier and I won't need the surgery.  But at least if I get to the point when I need it I'll be able to have it.

Have a merry Christmas, good luck with the continued recovery, and again, thanks.  I'm hoping you've helped me prevent, or at least postpone this surgery.  And at least I feel more educated now.
Posted by Jules (Jules), 23 December 2004

Hi Blackbeltgirl,

My three lesions individually were 2.5cm squareish and 2.5cm squarish and 2.7cm squareish. Thats roughly 7.7cm x 7.7 cm, So in all was a little larger than yours in total, but I'm not saying this as a 'mines bigger than yours' thing, but just to say that you could be considered even though your one lesion is more uncommonly bigger for a single lesion, if you are not happy with your OS, ask to be referred to another OS for a second opinion, don't settle for one persons diagnosis.
Well done for loosing the weight, keep up the good work, and I know how hard it is, especially at this time of year.
I hope it does help you to prevent surgery just yet, I amd 38 years old, and I wished I would have been diagnosed a lot earlier, so I could have delayed it a little by loosing the weight, and then may be having a TKR later on, instead of all these ops!
I'm glad the information you are reading about is helping, keep up the good work. Merry xmas.
Jules
Posted by JulianUK (JulianUK), 27 December 2004

Hi All,

Just wanted to wish you a Merry Christmas and hope you all have a happy New Year.

I'm now 8 wks down the line on my second MACI and so far it's been going OK. However I've developed a hamstring abductor problem in my other leg. At first I thought it was the cartilage playing up again until my physio identified it. Must say I was relieved but I'm supposed to rest it , which is difficult when it's the only leg you can walk on.

Been keeping up the weights and pool walking and can know bend it to 135 degree. Couldn't get that much bend in my other leg until about 3 month stage.

Blackbeltgirl - Just to say I lost over 1.5 stone before my op and have kept it off this year. It doesn't sound a lot but when your muscles are used to carrying a certain weight it makes a big difference when you lose some. I opted for this procedure because OATS wouldn't have filled all of the defect area, plus I had my patella grafted. I suspect you won't be able to have OATS due to the size of your defects as well.

Stan -  Glad to see you're doing well, any probs just ask.

Jules - keep up the physio and remember not to push it too hard to soon.

kind regards,

Jules.
Posted by Jules (Jules), 27 December 2004

Hi Julian,
Great to hear from you, and well done!! 135 degree bend, thats fantastic! At the moment, I don't feel as if my knee will bend any more, due to the scar tissue and the pain on bending. I was out last night, just to a party at my sisters, its the longest time I've had my leg constantly down, paying the price for it today, its been aching and I've got a little fluid on the outer side under the patella. So kept off the bike today, just did my usual exercises. Well I have had a week partial weight bearing, now over this week, I'm to build up to total weight bearing, I think I can do this if I don't bend my knee whilst trying to walk, but feels to weak to put all the weight on it when slightly bent. Still managing the stairs well, and with the support of one crutch and the banister I can actually walk up one foot one step each, rather than the one step and to put both feet on, before trying the next step, if you can understand that! Its hard to explain in words.
Well keep up the good work.
Have a good new year.
Jules.
Posted by Slater (Slater), 28 December 2004

Hey Jules.....

well down in australia it appears only a couple of OS's actually doing ACI's - but seem to specialise in these procedures...(whichi issgood - also my OS has done them in the US as well - which made me a little more relieved)

anyway had the arthroscope and harvest on the 21st(a week ago)....feels fine slightyly swollen but dont have much bend yet approx 46-60 degress...is this normal after arthroscopedue to swelling.....OS did remove bone from OCD lesion about 3mm square which required incision...(##@also had reaction to anaethetic which caused major nausea-not fun!!)

otherwise all going as planned...starting to get a little apprehensive about the arthrotomy...(not looking forward)....

well best wishes for the season out there.....hope everyone going along as planned and happy!!

Slater - Melb/Australia
Posted by Jules (Jules), 28 December 2004

Hi Slater,
Thats good sounds like you had someone experienced.
Thats normal to have swelling and not be able to bend it too much, especially having it harvested and bone removed. Try to improve on it, in the next couple of weeks before your second stage. Also keep working on your quad mucsle exercises, as that really wastes away quickly, and takes a long time to regain it.
As for your reaction to the anaesthetic, make sure next time you ask them to give you a anti-hymetic (anti sickness) injection, that should ease it more.
Have you read my diary over the week I had in hospital during the second stage ACI (on page 2), this may help you to ask for PCA (patient controlled analgesia) and/or a leg block, so that you don't experience too much pain. Its on this site, Its about 4 long posts from me, its an interesting read, and helped Stan to ask for the PCA before his op.
Best wishes to you too, and good luck if we don't hear from you before, and let us know how you are getting on when you get back home.
Happy new year.
Jules


Posted by blue_ezzie (blue_ezzie), 30 December 2004

Hi everyone,

Jules, good to hear the update! You must be almost total weight bearing by now! Just remember to take it easy and don't be too distressed if you get swelling/pain after a big event like your sister's party...it can be so frustrating though, when you feel well enough to do something and then you feel the ramifications of it the next day. I still get it...last week I moved house and that, along with Christmas and work, meant that I am feeling very sorry for myself this week  

Also - have you tried lymphatic massage for the swelling? I had a wonderful massage when I was still on crutches and it really helped so much with the swelling, both in my calf/ankle and my knee. Apparently the lymph nodes don't do an awful lot unless they are being stimulated by walking etc, so that's why massage can help.

Julian UK, wow tremendous work on the bending!!!! Am feeling green with envy over here!! You poor thing with the other leg though ...I sometimes feel some creaks and cracks in my other knee and I have often felt how terrible it would be if I wasn't able to use my other leg. So I hope your abductor prob sorts itself out soon.

Stan, how are you going with everything?

Slater, good to have another Aussie buddy on here. Keep us updated on your progress before the next op. I had such an awful reaction to the anaesthetic and morphine in the first op I think that was the reason why I was dreading the second one....make sure that you *stress* to the anaesthestist how sick you were, even call the hospital before you go back in, and they can change the formula as well as giving you anti-nausea stuff before, during and after the operation. I also requested a pethadine drip/button thingie that I controlled after the operation which worked a dream. Jules is right about the nerve block - the pain is absolutely manageable that way and by the time it wears off you are feeling less fragile after the anaesthetic.

Jules is also right about getting your muscles back between the two ops - I thought there wasn't much point in doing so and am still paying the price for it, with a very wasted leg. Even though it hurts do focus on those quads!!!

Hope everyone had a wonderful Christmas and is lookign forward to the New Year, whatever it may bring for our knees....

ezzie  
Posted by Jules (Jules), 30 December 2004

Hi Ezzie,
Good to hear from you.
I have this week to total weight bear, must admit, its going reasonably well, I have tottered about without the crutches around the living room and kitchen, its not too bad at all, I'm a little worried about the pain I'm feeling down on the inside of the knee, I don't know if its a weak ligament or something, but if I didn't have that, I think I would be well on the way. Did my exercises this morning, and I think I'm bending my knee further, will get the physio to check it next friday.
A tip for those a few weeks post op and a having hypersensitive scar, I've been finding that the scar feels sore on the outside, and the top layer of scar tissue flakes, I've been using savlon and then at night especially (as the rubbing of the sheets makes it more sore) to put a tubigrip on the leg, not a tight one, but this stops the rubbing.
I was also having some tiny oozing from a stitch that was at the end of the graft site scar, it was deep in and just wouldn't heal. Managed to get that out the other day and its healing lovely now.
Managing the stairs great, haven't tried yet, will next week, but I really think I could do it without the use of a crutch, and can do it properly now and not like a two year old child!
The fluid is just about gone now, it wasn't anything drastic. But I'm having a small party new year, but at home, so it should be easier.
I know what you mean about feeling that sometimes you think in your brain, that you could just get up and walk normally, but then reality sets in when you take the first few steps!
Sorry to hear your feeling sorry for yourself, I'm sure if you take it easy, you will be ok for new year, are you doing anything?
I have never heard of the lymphatic massage, which lymph nodes do they massage? As I'm quite ticklish. But would definately try it if I can find someone who does it?  
I spoke to Stan boxing day, and I have to say he's being naughty! Not following the rules of rehab, I told him off! (not really that bad). But hes getting frustrated with non weight bearing, so is tottering about on the bad leg, without crutches some of the time. But he is in good spirits and seems fine.
Well I hope everyone has a good new year.
Jules.
x

Posted by blue_ezzie (blue_ezzie), 31 December 2004

Hey Jules,

Wow, fab work on the total weight bearing!! Those first few steps around the house are so scary!  Are you using a walking stick? I found that was so useful when I first started tottering around, not just for my own benefit but because when you are off crutches other people seem to bump into you and walk dangerously close, thinking that you can leap out of the way!

Just had a very little new years gathering...have been so exhausted by 2004 that I am hoping to start 2005 on the other foot, so to speak   I hope your gathering goes well! Watch out for that Dutch courage and doing a little bit too much too soon though...take those stairs slowly, particularly coming down!!!

With lymphatic massage - a foot to thigh leg massage, but it is really really light. It's a layer lighter than the muscle and a layer deeper than the skin. A bit of a weird sensation. They don't usually actually spend much time massaging the lymph nodes themselves, it's more to get the fluid going through your whole leg. It's bizarre - so relaxing that I fell asleep during it (so couldn't have been tooo ticklish!), and my masseuse said that happens all the time. Worthwhile checking out though, I found it really benefited that last little bit of swelling.

Stan, pleeeease be careful!! I know it's frustrating right now but you'll be kicking yourself if you have to go through all the pain and anticipation and rehab again. Please take care of yourself and don't push it!

ezzie
Posted by Jules (Jules), 1 January 2005

Hi Ezzie,
I'm still using one crutch at least, now and again I don't use anything around the house. I'm still a bit way off from walking any distance, so if I go out I will still use the wheelchair. Did walk round a shop the other day, and that was just about all I could do. I think I will need a crutch for quite a while yet.
Well the news years gathering went well, but yes I did too much, thats the trouble with having to be the hostess, my knee has swollen quite a lot, so its a day of total rest and ice packs today! It aches a bit, but not too bad.
The stairs are going well, can walk up them great now, still with the aid of one crutch, walking down is a little more difficult, and I'm taking my time with that.
I will look into that lymphatic massage, I will also ask my physio on Friday.
I will pass on your warning to Stan when I next speak to him, I did tell him to slow down though.
Well happy new year to everyone, and lets hope we all get new improved and painless knees this year!!
Best wishes to all.
Jules.
x


Posted by JulianUK (JulianUK), 2 January 2005

Hi Jules,

Happy New Year everyone,

Glad to see the weight bearing is going Ok Jules. I start on Friday with my PT on the treadmill, been building up the partial weight bearing and increased the lengths I walk in the pool.

Do be careful on stairs, my PT restricted my step work until 5 months with my left leg. Please let Stan know that I think he's mad weight bearing, even in the house. It is so easy to damage the graft sites with this treatment. So many people I've spoken to where it's failed have had some very slight traumas and ruined the graft completely, and they were being careful. I can't believe he would jeopardise this op so soon. To me it was my last hope and there was no way I was  going to mess it up.

I suppose I may be over cautious, but I've had one success with my left and want my other to go as well.

Still have abductor problems with my hamstring in the good leg, but hope that will settle down once I can weight bear more on my right leg.

Hoping for a good year and put all these knee problems behind me for once and for all.

regards,

Jules.
Posted by Jules (Jules), 3 January 2005

Hi Jules,

Sounds like your doing really well too. Good luck for Friday, I too start to build up my weight bearing exercises in hydro on Friday.
The stairs are really no problem, its surprised me really, how little pain there is when climbing the stairs, its probably as bad as prior to the op, so things can only get better now!
I will pass on your message to Stan today, although I have told him, I too hope he will not damage the grafts.
I am over cautious too, as if this does not work for me, my career as a midwife is at stake, and I may not be able to work on the wards for much longer, so it is so important to me.
Still having pain which I think is ligament pain, and the really bad aching in the back of the knee when straightening after sleeping, and also this hypersensitive scar is doing my head in! I continue to touch it to try and desensitise it, but not happening fast.
Well nice to hear from you again.
Best regards
Jules.
Posted by Stan_Greenwood (Stan Greenwood), 4 January 2005

Hi all,

Glad to see everyone is doing well, good start to the new year!!

Thanks for being concerned everyone, I am being a lot more careful now.

Phisio 2moro, so I will see how much she wants or doesn't want me to weight bear noing that I can.

Speak to you all again soon!

Stan.

P.s  Happy new year all!!
Posted by Stan_Greenwood (Stan Greenwood), 6 January 2005

Hi All,

Had Phsio yesterday, went very well!  I told her that I was able to walk around the house ok, and she said it would be ok for me now to fully weight bear but only with crutches still for the moment just incase!

I am also starting to use an exercise bike on minumum tension setting, just to get the joint going through the motions. It is near enough full range now.

All in all it is starting to get better very quickly, most of the graft area is behind the Pattella so she said that is why I am able to weight bear without much risk.  But only walking and not whilst bending, and still will obviously have to be very careful!

Pain is now basicully down to an aching in the joint through the night, wich is rather unpleasant.  And the top of my Shin bone is very saw at times where they split the cartalidge and put the meccano set in (I can see the bracket poking out above the skin, which is weird!).

Anyway, hope all are doing as well as I am?

Speak soon

Stan.

P.s Nice pic Jules!!
Posted by Jules (Jules), 6 January 2005

Hi Stan,
Congratulations, you beat me to the 100th post on here. I think a good acheivement!
Glad to hear everything is going well, I have hydro tomorrow, should be more interesting now I can weight bear. I'm also on full weight bearing now, but the knee feels very weak to walk on, and feels it could give way at anytime.
I know what you mean about the aching at night, the last three nights I've been woken constantly because of it.
I'm a bit concerned with what you said about with your graft being behind the patella and not being able to weight bear up the stairs, as I've been doing it over a week now? Also still getting the grinding, but as I go to see my OS on the 19th January, I hope I will be reasured of this then.
Well hope alls well with everyone.
Jules.

P.S. Stan, nice pic too!!
Posted by AlexJ (AlexJ), 6 January 2005

Hi Jules, all,

I have a valgus knee deformity of the right leg and I've been booked in for an Osteotomy plus microfracture in March in preparation for an ACI later in the year.  
I'm 28 and realise that I need to go for the ACI and fix the knee before it is beyond repair but....  I would like to get a second opinion on whether the Osteotomy is truly necessary as it appears to be the difference between 4 months of recovery or 8/9 months (Osteotomy + ACI).
Can you or anyone else recommend an experienced knee surgeon?  Who is the best available?  Who has conducted a lot of ACI's?  I'm living in Wiltshire but I've had an operation in Oswestry before and I'm more than willing to travel.

Thanks and regards

Alex
Posted by Jules (Jules), 6 January 2005

Hi Alex,
In my experience, I had arthroscopy (one of eight times) and microfracture and it did nothing for me, the idea of microfracture is that they drill microscopic holes at the back of the patella, this is to hopfully to grow a replacement (from the bleeding and scaring) for the cartilidge. This didn't do anything for me apart from 2 months off work! I had this done at my local hospital in Nuneaton.
I had my ACI at Oswestry by Professor Richardson, and I was and am more than happy with his service and my procedure so far (I am 8 weeks post op now). But I have also heard that Stanmore is good for ACI also.
You have to make your own mind up, but in my experience, I would go straight for the ACI, if I had the opportunity all over again, I would not have had all the 8 arthroscopies before going for ACI, this would have saved me 4 years of failure in the procedures I've had done.
Hope this helps.
Good luck.
Jules
Posted by AlexJ (AlexJ), 6 January 2005

Hi Jules,

Ditto.... 5 arthroscopies with 1 microfracture that did nothing.  Just spoke with my consultant and he's more than happy to refer me to Prof Richardson, so I'll let you know the verdict!

I'm being told that an Osteotomy (a wedge of bone graft into the femur in order to realign the leg) is required in order to create a larger gap between knee so that an ACI will work/take.  Was this ever mentioned to you?

Cheers,

Alex
Posted by Jules (Jules), 6 January 2005

Hi Alex,
I'm a little confused to your.....
"I'm being told that an Osteotomy (a wedge of bone graft into the femur in order to realign the leg) is required in order to create a larger gap between knee so that an ACI will work/take".  
...... I'm woundering if they mean a realignment and fixing, if your patella is not in alignment.
The graft I had was from the shin bone to place under the patella, then the cartilidge cells put under the graft.
But Prof. will get new xrays and will decide for himself, its a bit of a long wait. I had to wait a few months for an appointment to see him and then 15 months for the op. As they have only the funding for one per week as they told me. But I complained and I'm sure that helped if you know what to say.
Try to find out more what your actual problem is, you may be able to find out the correct solution for it then.
Best regards.
Jules
Posted by brattkids2 (brattkids2), 6 January 2005

An osteotomy is used when you are bone on bone or really close on one side. The osteotomy off loads from bad side to the other side in hopes of taking pressure off the bad parts of your joint. It is often used in combo with OATS or ACI. It is an actual wedge that is taken from your bone and a plate put in to realign the bones.

Hubby had osteotmy in May 2004 and was back to work full throttle no restrictions in August he did not, however, have to have the OATS or ACI with is as he had not worn away too much cartilage yet.

hope all goes well If you have any questions please let me know I will be happy to answer if I can.

Paulette
Posted by sherry34 (sherry34), 7 January 2005

Hi everyone,
I had ACI and a high tibial osteotomy done on Nov. 29,2004,  the pain is alot better now, but I am having alot of problems sleeping at night, my legs ache so bad it makes it  impossible to sleep, I think I got alittle to dependent on pain meds. so now I'm only taking advil for pain. I haven't had prescription pain meds for 2 wks now and thats really when I began having problems sleeping.  I have been told I will need something strong for pain when I begin therpy , hopefully the advil will do..... I feel like  I need something for depression, this surgery really drains you emotionally, I'm just trying to look ahead at spring and summer, at least I will be up and around good by then.  I wish I had found this site sooner,  I don't know of anyone around here who has had this surgery done, and although everyone thinks they know how you feel , they really don't unless they been there!!  Well gotta go for now,  I wish everyone well.......Sherry34
Posted by Jules (Jules), 8 January 2005

Hi Sherry,
I know exactly what you mean about the aching at night! Last night I had hardly any sleep due to the aching, as I've only been fully weight bearing for nearly two weeks now, and I'm trying to do a little more, it makes the aching worse. I did quite a bit yesturday, I went to the local college to give a talk to potential student midwives and then had hydrothereapy, so last night the knee was really aching. But I find that if I take co-codamol it makes me constipated, so I try not to take it, Voltrol doesn't help, and I have ran out of Tamadol. So I may ask the doctor to give me something to help me sleep, rather than having to take the pain killers, as like you, I want to stop taking them. What is this Advil?
When I went to hydro yesturday, my physio is getting me to go in twice next Friday, once for hydro then once to introduce new exercises and maybe start in the gym to build up the quad mucsles. I know this will make the aching worse, but I know it has to be done, to make improvements. As I thought I'm still at 117 degree bend, I must admit I haven't been continous in my exercises over xmas and the new year, and have to get motivated again to get into a routine again. My left knee is 140 degree bend, and I would be happy if I can match my right leg with this.
Sherry please do not get anything for depression, they are addictive and do not help in the long run. You have to get your mind into gear, and find other thing to hel with the pain etc. Like warm baths is very good, aromatherapy - lavender is very relaxing, try some in a boiling hot bowl in your bedroom with the door shut, half an hour before going to bed, it stinks a bit, but will be calming and relaxing. Listen to some soothing music on headphones in bed, read a book, do anything that will take your mind off the pain and relax you before dropping off to sleep.
I agree this surgery does drain you emotionally, and I've had more than my fair share of tears from pain and frustration, but it really is mind over matter and trying to feel positive.
Well you have found this site now, its better late than never, and we are here to help and support if we can.
Also I definately agree, no one really know how you are feeling unless you have been there and done it. You can say to people, my knees are really hurting today, and they just say, oh are they?! They have no idea!
Well I hope this helps you, I am only a couple of weeks in front of you with my rehab, so feel free to ask anything, or if you want to send me a private message.
Hope alls well with everyone else.
Jules.
x
Posted by sherry34 (sherry34), 9 January 2005

Hi Jules,
Thanks for the advice, I really appreciate it.  When I go see my os tomorrow, hopefully I can get something to help sleep, I just don't want to start taking pain meds again.........Maybe he will begin my therpy soon, I know its going to be painful , but I'm ready for this leg to work better.  Have you had this on both knees?  I was told I may have to have this later on my right knee as well, I'm not sure about doing this again..  I really didn't plan to have this surgery this soon anyway, I thought I had several months after my harvest , which was done August 26, 2004,  I only had 3 months to wait.  I even went and got a second opinion before having this done, and he told me the exact same thing, so I figured they knew what they were talking about..I'm glad it's over though, maybe we'll be good for summer,  our family likes to camp alot and ride jet skis at the lake, my os has already told me no jet ski riding for me this summer
that stinks!!   but oh well........
Oh yea Advil is an over the counter pain relief that you can get at the store or Wal-Mart, its really good, and not addictive , its good for headaches and any kind of pain, it has worked really well, it probably woudn't have right after surgery, but it is helping now. Well I gotta go get ready for church and get everybody out of bed, talk to ya later and thanks again..............
Sherry
Posted by blackbeltgirl (blackbeltgirl), 10 January 2005

Jules - Advil is a brand name for ibuprofen.  I'm not sure if that goes by other names in the uk, but you can check webMD.

Sherry - what part of the US are you in?  I am considering ACI in the next year or so, and would be interested in meeting someone who's had the procedure.

Jess
Posted by sherry34 (sherry34), 10 January 2005

Hi Jess,
I live in Tennessee, just right above Huntsville Alabama, that's where I had my surgery done, I just got back from the doctor and everything is looking fine so far, still cannot bear any weight for another 4wks though, thats the hardest part I think, after you get over the first 3or4 wks.........What part of the US are you in?? well gotta go for now......................
Sherry
Posted by Jules (Jules), 11 January 2005

Hi Sherry, no probs for the advice, hope it helped. I read on the other post how you got on with your OS, progress is always slow, but hang on in there.
Doing the workouts does make it ache alittle, but not as bad as the night pain, I don't think any way.
I have had ACI on the right knee, but I have to have left knee done in about 12 months time, but I will only have it done, if this one has helped at all. Its alot to go through if there is little improvement, but only time will tell me if it has worked. Really I need a total knee replacement, but they won't do it as I'm too young. I'm 38 and they won't do it until I'm at least 55!
You will just have to watch the jet ski this year, take a good book and a nice bottle of wine, and have your own party, whilst your watching. HA!
Jess, yes I do have Ibuprofen, and I find that works better than the Voltrol I have had, but I use it mainly for an anti-inflammatory. I find if I take it too long, and regularly, I bruise really easily, as it affects the blood, if take for a long period of time. This is one reason it is not to be taken about 2 weeks prior to surgery.
Well I hope everyone is fine.... and Stan you are behaving yourself!
Best to all.
Jules.




Posted by blackbeltgirl (blackbeltgirl), 11 January 2005

Sherry - I'm in Richmond, VA.

Jules - I was surprised to hear about the bruising from ibuprofen.  I've taken it since I was a kid, for headaches, etc. with no trouble.  They just tell you not to add aspirin to your routine if you're taking ibuprofen.

Anyway...
I have my 2nd post-op from December surgery in February, and I am going in with a list of questions about the ACI, and my need for it.  My lesion is at 18 sq cm already, and the evidence supports ACI for lesions up to 20cm.  I keep debating the issue - am I in enough pain to warrant this surgery vs. losing the option if my lesion grows.  Hopefully my dr. will assist.  I don't think there are a lot of alternatives with a large lesion, so I don't want to risk postponing, and end up with agonizing pain till I'm old enough for TKR.

Once again, thanks to everyone who posts on this thread.  It has really helped me to understand this procedure from the patient's perspective.  Still scary, but with real potential to return function.

Jess
Posted by sherry34 (sherry34), 11 January 2005

Hi everyone,
I didn't think to mention this earlier, Jules did they use the GPS when they did your surgery it stands for gravitational platelet seperation system, it is suppose to help you heal faster and speed up your recovery time, my os did this during my surgery. If you want to read more about it go to www.visittoc.com and click on TOC news at the top of the page, go down to where it says Dr. Greco and Dr. Davis featured on channel 19 news, it tells all about it.  Dr. Davis is the  os I go to.
 Jess- this is something you may want to check into before having this surgery, they have only been doing this here for a few months, its very interesting.
Good Luck.......................
Sherry
Posted by Jules (Jules), 11 January 2005

Hi Sherry,
No they didn't, I've never heard of that before. But it sounds good in theory, let me know if it works in practice.
Jules.
Posted by sherry34 (sherry34), 11 January 2005

Jules, did you check out that website, it tells how it works and explains it pretty good....
Sherry
Posted by Jules (Jules), 11 January 2005

Hi Sherry,
I've just looked at it, it sounds great, I wonder if anyone else over here is doing it?
If anyone knows in the UK, please let me know, I could look into it for the next time.
Jules.
Posted by sherry34 (sherry34), 11 January 2005

Hi Jules,
They say, this works, I don't have anything to compare it to, as this was the first serious knee surgery I have had, other than the scope........My knee is feeling better, still aching though, but I don't take anything for pain until I go to bed, I think most of my pain may be from the osteotomy.  Hope someone over there does this,,maybe your next one won't be so bad........
Ask you os if he has heard of this
Talk later, Sherry

ps--my surgical scars do not look bad at all, this is suppose to improve them, make them just a fine line........
Posted by sherry34 (sherry34), 11 January 2005

Hi Jules,
I'm not sure how to do that, but my daughter knows how, when she gets home from her ballgame, I'll get her to show me........
Sherry
Posted by Jules (Jules), 12 January 2005

Hi Sherry,
Give me your email, and I will send you some of mine. send it privately if you want to.
Jules
Posted by sherry34 (sherry34), 12 January 2005

Hey Jules,
Oh my gosh, I can't believe how far the cut your knee. ..........I feel like I shouldn't even complain, my incision where they did the ACI is only about 3inches long and just below it is the incision where they did the osteotomy, and its only about 3 inches or so long, don't get me wrong it hurt like ....  but I can't even imagine what you felt like.  How many staples did you have?  I had 27 all together.   My doc told me they use to do the longer incisions, but I was lucky that they improved it to where they could do it with smaller incisions, I see now I was very lucky!  Hopefully my daughter will be able to show me soon how to do pictures, she has a digital camera and is pretty smart...........she got home late from the game last night, and now she's gone to school then going to Nashville to film some video, their cheerleading squad won some competition and got to do this...............When did you say you were doing your other leg?  
Well take it easy, talk to ya later..................
Sherry
Posted by Jules (Jules), 12 January 2005

Hi Sherry,
The long scar measures 7.5 inches long and the small one near the shin is just over 2 inches long. Your staples must have been very close together, as I had 24 in the long scar, and the small scar was sutured.
The harvest scar is about 1 inch long also.
I have never known them to do ACI inside such a small incision, maybe when I have the next one done in about 12-18 months time, they will do it smaller.
I suppose its down to how you cope with pain and how you heal, everyone is different, so whats bad to one person, is not too bad to another.
It's the worse one yet for me out of all the ops I've had; 4 arthroscopies on both knees (8 in total), bunions done on both feet, and a wisdom tooth removed in theatre.
Congratulations to your daughters cheerleading squad.
Had yet another really rough night last night. Went to bed about 12:30pm, leg was aching, couldn't keep it still, so got up at 1am, took some pain relief, had a cup of tea, to let the pain relief kick in. Went to bed again at 1:30am. I felt more relaxed, but still couldn't sleep. By about 2:30pm, my partner was snoring his head off! About 3:30am, he finally stopped snoring, but then I kept getting a stabbing pain in my knee and my shin and ankle was aching. So I took some different pain relief again. Just about to drop off, and he's off again with his snoring. No matter how much prodding, I can't shut him up. 5:45am, and I'm still awake!! I think I finally dropped off for just an hour about 6:30am. So I'm pretty tired today. But won't have a nap, as I don't want to not sleep again tonight. Well hope alls well with you.
Jules.
Posted by sherry34 (sherry34), 12 January 2005

Hi Jules,
I know what you mean about the aching and the snoring, my husband was in rare form last night, I think I kicked him about a dozen times with my good leg, but it didn't help. I think I finally fell off to sleep  somewhere between 3:30 or 4:00 am......I'll be glad when my daughter gets home tonight,  my scars are alot smaller...when they did my aci surgery, there were actually 12  staples in  it and they were pretty close togeather.. the osteotomy scar had 13 staples  . They also scoped my knee right before they did the aci  and each place had a staple(only 2 places)  ....When they did my harvest back in August they did it through a scope.  They actually did the scope to find out what was going on in there, once they got in  he said he knew I would be a good canidate for aci..........so he did the harvest at that time, which I was glad he did, although I never expected to have anything major done, but at least its over now.............


I''m very proud of my daughter, she's worked hard to be a cheerleader, she's a junior in high school, I hope she will cheer her senior year, my son plays  football he's in jr. high, and my youngest daughter plays basketball and softball so they keep me pretty busy, but I love it..........Well Take Care , Talk later..........
Sherry
Posted by Jules (Jules), 13 January 2005

Hi Sherry,
Well fantastic! I had the best nights sleep I've had in a long time, slept all night, didn't wake once, my partner said I was snoring, but don't believe it for one minute!!
Your harvest date to your 2nd stage ACI was quite a few weeks, mine was only 3 weeks in between?
I have 3 daughters, twins nearly 18 years old and the youngest who is 14 years old. One of the twins is at college doing an art and design course and the other is working in retail. The youngest is just a moody teenager at the moment! But I too am proud of all of them.

Hi All,
Can't believe the letter I have just received in the post today. A letter from Oswestry saying I am on the list for my left knee for ACI, the waiting list is 9 months, BUT they have put me down as a clinical priority, so it could be less than 9 months. How scarry is that!!
Not sure if that will be too soon - physically. Has anyone else had ACI on both knees at that short time apart?,
But really I have to be back at work for 12 months to build up my sick time allowance again - to 6 months full pay.
Well hope everyone is ok.
Jules.


Posted by sherry34 (sherry34), 14 January 2005

Hi Jules,
Glad you finally got a good nights sleep, I'm sleeping better, still wake up 3 or 4 times during the night.  
I lost my balance this morning and cought myself on my bad leg, hurts some, but I don't think its anything to worry about, I've had problems  all morning with my balance  

I can't believe you may be having this done again so soon,  your a brave lady..............Better to have it fixed than hurt though......

Thats great about your daughter doing art and design, and I know what you mean about a moody teenager,  my son isn't so bad, but the girls "oh my gosh"  I don't remember being that moody..........

Well good luck........Talk to ya later.............
Sherry
Posted by Jules (Jules), 14 January 2005

Hi Sherry,
Take it easy on the tipple!! My balance is not too bad, have the occasional wobble though.
Went to hydro this morning, was jumping up and down in the pool and did a few more resistance exercises. Then went into town in my wheelchair. Then went back for physio at 4:30pm to introduce some more exercises, which really hurt, not forward to doing them tomorrow. I have to do leg lifts whilst sitting on a chair, and then whilst lying on my front, leg bends. It is very painful.
Can't wait to see my OS Wednesday, to see if I can start to drive. The only pain in the neck is that it is a four hour round trip!
Well going to put the leg up and rest now as its a little swollen and sore.
Speak soon.
Jules.
Posted by Jules (Jules), 15 January 2005

Hi All,
All I have to say today is that after my busy day yesturday, I only got 2 hours sleep, even with the help of two lots of meds, and two large glasses of wine (before you say it, I know I shouldn't mix them)!
Jules.
Posted by Cid (Cid), 16 January 2005

Jules, you don't know me but I have been lurking and reading your posts.  I am so glad you decedided to do a comprehensive diary.  I am looking at a act transplant in the next 9 months and wanted to get an idea of what others have been thorugh.  Your diary has helped remind me of the ups and downs of major knee surgery.  I had a TTT 7 years ago and it was a total nightmare.  It sounds like the rehab for this is simliar and I want to be up to the challenge.  Good thing on this one is I have an excellent Ortho this time.  He really wants to try in on my left knee and he just scoped it and did some cartlige and tendon repair last week to try and get me in shape for the cell harvesting and transplant to come.  It is a scary thing to think about after my TTT disaster but I trust him to do what it takes to make me better.  You are right to push your phiso that is what got me back together each time.  The desire to be able to do what I love dancing.  I work for a govt. office and dancing is my hobby.  I am down for the count for a few weeks but ready to get back to building the leg and dancing for the fun of it.  I hope to get to know some of you on here and I will be happy to share my experiences with you and be here for your ups and downs.  I live in the USA and have a beautiful 17 year old daughter, 3 doggie daughters, and on lovely kitty oh cant forget the hubby who has bravely stuck around all these years with a pegleg wife.  I will be waiting for your posts and stories of positive outcome.

Cid
Posted by Jules (Jules), 16 January 2005

Hi Cid,
Nice to hear from someone new. I'm glad my diary has helped, that was my aim. Please bear in mind that everyone is different, and heals differently and over a different period of time, but it gives you an idea.
Yes the rehab is long and slow, and there are many up and downs along the way, but hopefully
all worth it.
Sounds like you have been through the mill yourself too. I'm glad you have an OS that you have faith in now, it helps to get a good OS, it makes all the difference. I know its hard but try not to think of the past, a new OS and a new start, and hopefully a good outcome this time.
I too used to love going out and having a good dance, but haven't been able to do it for a long time, not without having a really painful few days after any way. You will get back to it I'm sure, but it will take time. My biggest fear is not being able to carry on my job as a midwife, all that walking up and down wards! So its very important to me that this works!
Well keep in touch, we are here to help and support you and to get to know you too.  
Sounds like you have a lovely family unit around you, and its so important to have a supportive partner, my fiance has been a god send throughout all of this.
Well keep us updated.
Jules.
Posted by Lizzie (Lizzie - UK), 16 January 2005

Well it has taken me some time to read the entire thread and I must hand it to you that you have been wonderful for doing this.  You are FANTASTIC!  Well done.

Your thread has been really interesting to read.  You've not only be truthful, but you have been very informative.

I wish you well with your recovery and hope that everyone else who has posted on here are doing well to with their ops and recovery.

Keep up with this brilliant thread

BTW - I'm waiting to see whether or not I will have the ACI as well as the HTO.  I've got to wait for an MRI.  I have defintely got to have the HTO, but it all depends on the results from the MRI.  I might have too much damage.  I hope that I will be able to have this procedure, even though it sounds like it is really major surgergy, but even more major rehabilitation.  And let's face it, this is a very long and hard rehabilitation.

Good luck Lizzie x


Posted by Jules (Jules), 17 January 2005

Thank Liz for your kind words,
It makes this all worth while and very proud when I know I have helped someone else, by doing this post. It must have taken you ages to read from start to finish!
They may do your ACI, I thought mine was too damaged, but they have done it any way. It has a reduction in the success rate, but fingers crossed it has worked and I will go on to get the left one done also.
Please let us know how your MRI scan goes, and best of luck to you too.
Well it is 4am and as you have guessed not sleeping well again, thought I would get up and have a cuppa then try and sleep again. Hope everyone is doing well.
Jules.
Posted by blackbeltgirl (blackbeltgirl), 17 January 2005

Jules et. all:

I come to you as my "resident experts" on ACI.  (I don't see my dr. again till Feb. 3, and had some more questions...)

I just got a copy of my surgical report, and I'm trying to figure out if I am in a situation where, if I postpone the ACI too long, I will lose eligibility.  The studies I've read say it works for areas up to 20 sq. cm, and I'm pushing that now.  So here's the post-op diagnosis, and what they've done so far.

Grade IV chndromalacia lateral femoral condoyle, 6cm x 3cm
Grade IV chondromalacia lesion of half of the lateral tibial plateau
3cm x 1cm defect of the trochlea

So far they did:
left knee abrasion arthroplast of the trochlea (59 modifier)
Abrasain arthroplasty and lateral tibial plateau and lateral femoral condoyle
Partial mensicectomy (what we knew about in advance)
And the genzyme biopsy

So is this not that bad, or have I just been really lucky that I wasn't in more pain?  I've had knee problems since I was 12 (I'm 30 now), so maybe I was just used to some of the pain?  I've got myself all worked up - I'm not sure I'm in enough pain to sign up for an 18-month recovery, but I'm afraid if I don't do it soon, I have few options later.

Thanks in advance.
Posted by JulianUK (JulianUK), 17 January 2005

Blackbeltgirl,

As you know I'm on my second MACI rehab.

I wouldn't leave it too much longer. I was in a lot of pain with my left leg and had to wait over a year to get this operation. I didn't want to wait that long with my right and was so glad they scoped it at the same time as the year follow-up op on my left. I say glad but I had to push them to look at it, having had microfracture on it 4 years ago I knew it was getting bad again like the left.

The rehab is long enough and I think having my right leg done whilst my muscles were still strong has definitely helped my recovery.

The last 4-5 years has been hard on me and my family, but as I speak to you now I walk without crutches and virtually pain free. Still got to build up my muscles but that will only take time. I can definitely see the advantages of getting it done sooner than later.

kind regards to you, Jules and the rest of the ACI gang,

Jules.
Posted by Jules (Jules), 17 January 2005

Hi Blackbeltgirl,
I definately agree with Julian, you should get it done sooner rather than later. Even though you may not be in so much pain now, the condition will only get worse, and then ? whether they will do it? And also you will start to experience more pain and will have to wait who knows how long. My left knee is not as bad as my right, but I will have it done in 12 mths time, I would have had it done sooner than that, but I need to build up my sick pay allowance before I have the time off again.
So go for it when you can.
Jules.
Posted by Lizzie (Lizzie - UK), 17 January 2005

Hi Blackbelt


I agree with what the guys have said before.

I believe that some people who have to have the ACI only had to do it because it showed up on an x-ray.  They did not experience any pain whatsover, other than from the injury that they had endured, which left them having to have an x-ray.

I would definitely go ahead and have the ACI before any further damage is caused within your knee and also before there is too much damage for you to have an ACI.

Hope this helps you.  
Posted by blackbeltgirl (blackbeltgirl), 18 January 2005

Thanks everyone.  It sounds like I was just lucky I wasn't in more pain.  I've got a bunch of weight to lose before I can have the surgery, but you've confirmed my fear.  If I don't do it soon, I may not be able to do it.  Joy.  At least I like my dr.  I'll let you know if he confirms your response after my Feb 3 appt.
Posted by Jules (Jules), 18 January 2005

Hi All,
Blackbeltgirl, glad we could be of help, and good luck with the weight loss. YOU CAN DO IT!!

Well I did it! I went out on my own, WITHOUT THE WHEELCHAIR! Just down to the local post office, I'm not a good judge of distance, but it was about a street length of 50 terraced houses and back. I was ok, used both crutches, but it started to hurt as I got back near home. Its aches a bit this afternoon, but another milestone taken!

Go to Oswestry tomorrow morning, let you know how I get on.

Hope everyone is ok.

Jules.
Posted by blue_ezzie (blue_ezzie), 19 January 2005

Way to go Jules!! YAY!!!  
Posted by Stan_Greenwood (Stan Greenwood), 19 January 2005

Hi all,

Sorry no posts for a while but I've been so busy at work!!

Jules - well done, your doing really well!!  Did you see your OS yesterday??

I Saw my Surgeon yesterday and he said it is going very well and over the next two weeks to try and come off my crutches alltogether!  

I'm still in a bit of pain at times but nothing severe, its more to do with the area were they messed around with tendons to help track my knee and bolted into my shin bone.

Well I hope every one else is doing well and anyone waiting for the op can be re-assured that its not as bad as it seems, I'm now exactly 6 weeks post op and nearly walking normal again!!

Speak to you all soon

Stan  

P.s  Keep up the good work Jules!!!
Posted by Lizzie (Lizzie - UK), 19 January 2005

on 01/18/05 at 13:37:17, Jules wrote:

Hey Jules

I read somewhere - don't know if it was you, or someone else on the kneeguru, or even on another forum - my medication does this to me!!  However, before I go off the point.  The point is that this person had been to the OS with real pain after been injected with  a Cortison injection, at least I think it was.  They went off and thought that it hadn't done any good for the pain they were suffering as well as the weird things going on in their knee.  They went to see their OS and both the OS and themself (grammar?) were totally convinced that another surgery would be in the pipeline.  Well ... there wasn't the need for another surgery, because, in fact, the knee got better all by itself.

You never know, this might happen to you.  

I know that I am being extremely optimistic, but you just don't know what is going to happen in the future.

I think that we are all allowed to have down days, which I think that you are having.  After all the with the law of average, you have been going so well.

I wish you love, care and above all I wish that I could tell you that it will all work out in the end.  If only I had a crystal ball - gee, I could buy myself a lottery ticket and become a millionaire.

I could even know if I am going to win my personal injury case that has been going on since December 2001.

Take care my friend and allow yourself some pampering.  Eat and drink what you want and feel how you want to as well.  There is nowt wrong with that!

Love as always Lizzie the pain geek! LOL  

Jules

Hope that you were able to get a good night's sleep.  I wish you good luck with the hydrotherapy.  Just remember not to overdo it.  It is so easy to do it in the hydrotherapy, I know, I've done it.  Take it easy, as the hydrotherapy can play tricks on you.  And, boy will you know it afterwards and the day after and the day after too.

Take it easy and let us know how you get on.

Lizzie

Hi all (Jules esp),

The chat seems to be getting a much bigger audience which is great!!!

Hope your doing well Jules, sounds like you are.  

I have been going to my phisio to a "Re-Hab" class, wich is really helpful but very hard work!

Jules, did you get any funny spasms or twitches in your knee post op??  My knee keeps almost completly opening when I'm lying down for no reason?   It's really painful when it does and its completley in-voluntary!

Anyway, I'm not doing to bad at 7-weeks post op, but I am starting to have a lot of what I would call growing pains right in the joint wich is more of a nagging thing than exrcuciating pain.

I've only got another 5 days left until according to my OS I should be completley off my crutches and walking ok, so fingers crossed!!

Keep well all.

Stan x

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