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Author Topic: New member - 3 weeks post MACI and struggling...!!  (Read 17110 times)

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Offline CR_UK

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #30 on: November 24, 2010, 10:15:47 AM »
Hi Cricket
Thanks for that. What type of unloader brace have you got. As I also have a med femoral condyle lesion that info would be useful. Thanks again! I emailed the Ossur site and had email back recommending "The Unloader One OTS (off the shelf)" but also said better to attend for a fitting. This would again be in London, a long trip for me as hubby needs to take off work. Did you have yours especially fitted?

Offline Cricket

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #31 on: November 24, 2010, 02:13:31 PM »
I did have it custom fit, but I am in the US, so our experiences would likely differ. I have the Donjoy Defiance.
http://www.donjoy.com/index.asp/fuseaction/products.detail/cat/3/id/59

It took a month or so to get used to it, but now I find it pretty comfortable. My doctor ordered it for me and a sales rep came to my house to do the measurements and to pick out which of two possible braces and which color I wanted. I got it in metallic red.  :D Then after it arrived, the rep returned to show me how to wear it.

I actually got it before my ACI to try to help manage the pain, for I was in really bad shape before. I think it actually helped my OS feel more comfortable with going forward with the ACI because the brace did help significantly with the pain, therefore identifying the source of the pain more definitively.
Jan 2009 - OCD diagnosis in femoral articular cartilage of R. knee
Mar 2009 - Microfracture
Sept 2009 - Arthroscopy and cartilage harvest
March 24th 2010 - ACI part 2

http://allisonsaci.blogspot.com/

Offline Rennschnecke

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #32 on: November 24, 2010, 03:36:08 PM »
Hi CR_UK

I know that Donjoy also make home calls sometimes, but I don't know if there are limits on the areas they will travel to.

You can find the contact details of the UK office through the Internet – they're based in Guildford.  If you phone them up have a chat to them about what you're looking for.  Their reps are often very helpful with queries and some are also physios I think.

Best of luck with your appointment tomorrow.
1/05 Ski accident: 5/05 ACLr LK; 10/06 Scope – debridement, trochlear cartilage lesion (Gr4); 12/08 Scope – chondroplasty, hematoma; 5 & 6/09 MACI patella & trochlea 'kissing lesions', ROM 0 to 80; 9/09 Scope – LOA, IPCS & patella infera; 9/10 Scope – AIR & LR.

Offline CR_UK

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #33 on: November 25, 2010, 05:49:23 PM »
Hi guys
Went to see Mr Skinner earlier today for 6 week check at 7 weeks.
Luckily not the anticipated snow on the M25 but certainly freezing today...brrr!!
He is happy with me  ;D and thinks it appears unlikely that I damaged the graft ;D ;D as he feels that flexion is nice and smooth and would be bumpy otherwise. I can now lose the brace  :)and start PWB working towards FWB with both crutches and then proceeding to one crutch. Although my quads are improved, they are still too weak and need to work on it more. As mentioned before, I've had a setback for a week , and consequently  avoided SLR etc until things more settled again.
He has said I wont be ready to return to work at 12 weeks and it's been pushed to Feb which is a great relief. 8)
Discussed unloader brace, he said that he has no personal experience of anyone using one post MACI but did think that it would be of benefit to try this for specific activities known to be a problem for me. I should let him know how I get on. In terms of the timing he felt to wait a bit until muscles are stronger,  as if wearing a brace it may limit or slow strengthning.
Bit nervous about sleeping without the brace :-\ its  friend and enemy alike!
 

Offline Rennschnecke

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #34 on: November 25, 2010, 06:19:23 PM »
Good to hear your news CR_UK.  It's reassuring that Mr Skinner doesn't think your graft is damaged and I hope you feel relieved that your return to work date has been delayed.  At least your OS has a good understanding of your job needs.

I know that some braces act by inhibiting muscle movement through a particular range (e.g. I can walk pretty much all day with a brace, but can't cope for very far without).  In such instances it can hinder recovery.

If you do get a brace, have a good long talk with those fitting or providing the brace.

I know recovery may take a bit longer without a brace, so you need to work out for yourself what is necessary for your own circumstances.  Perhaps you could go without a brace for now and only use a brace if necessary for work.

I know that discarding the brace at night-time can be a concern, but you may find you adapt after a few nights without and the quality of sleep you'll get will be wonderful!!! 8)
1/05 Ski accident: 5/05 ACLr LK; 10/06 Scope – debridement, trochlear cartilage lesion (Gr4); 12/08 Scope – chondroplasty, hematoma; 5 & 6/09 MACI patella & trochlea 'kissing lesions', ROM 0 to 80; 9/09 Scope – LOA, IPCS & patella infera; 9/10 Scope – AIR & LR.

cdubb

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #35 on: November 25, 2010, 07:10:34 PM »
CR_UK, Glad to hear that all is going well at this point.  As for ditching the brace at nighttime, I was given the go ahead at 9 days post op, which seemed crazy to me based upon other ACI and other tibial tuburcle osteotomy (I had both) posters experiences on when they were given the okay to ditch it at night. I waited until about 12 days post op to do it though.  Now that I've been sleeping no brace for over a week, it's fine.  I happen to be a back sleeper anyway, which helped with my comfort level going braceless at night since with or without the brace, my leg just lays out in front of me.

Offline KartBoy

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #36 on: November 28, 2010, 01:46:57 PM »
CR

Its good to hear pain has eased and that OS isn 't concerned as to damage to graft but like you I too recently had some unusual pain when doing SLR's (which were one of my standard exercises) which may have been caused by some local inflammation, caused by ..who knows but it has now settled down after a few days of rest, physio though told me that if it didn't I needed to get in touch with Stanmore which doesn't now seem necessary.

Lesson learned

Regards

Andrew
7th Mar 08 - Pedestrian hit by car
10th Mar 08 - TPF (Plate + 6 screws)
12th Mar 08 - TPF Revision
Feb 09: Hardware removed + scope
Jun 10: ACI Stage I
Aug 10: ACI II (Stanmore)
Oct  11 - MRI + Scope (In pain)
Aug 12 - MRI + Scope (In more pain)
Sep 12 - TKR ruled out :(

Offline CR_UK

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #37 on: December 06, 2010, 12:33:20 PM »
Hi all!
Things are still improving albeit sooo...slowly. It's in the little milestones one realizes that there is change for the better.

I'm now 8.5 weeks post MACI and started after my visit to my consultant at 7 weeks, to try and put more weight through my leg. Has been really difficult as full extension with loading, which is an action needed for walking, causes a sharp pain in the graft site. There is an element of the tibia rotating when you release the knee from locked in extension, eg as you walk or initiate flexion, which affects the graft. I just dont know how to get around it.
Missed my hydrotherapy last week in view of the masses of snow we had.However, I have been doing other quad strengthning exercises instead of SLR and  started on a static bike and that has been going really well with no discomfort or problems. I have a small inflated exercise cushion on which I push down in a foot pumping action whilst seated and this seems to also work for my quads in that I can avoid full extension. I can FWB if I stand in a knee bent position say as in skiing position with no discomfort , but cannot straighten in view of the graft catching.

On the pain front there is also improvement.I'm off NSAID's  for over a week and started to forget the occasional paracetamol

I Have managed 3 nights without the brace now ,although I tend to have more discomfort when I wake up without than with the brace ,but, it's improving. I started off by leaving it off from about 4am initially. Still having Tramadol at night, one at 10pm and another usually at 4 am. Also I need to ice it about 2x at night but my days are reasonably OK. The knee doesnt appear swollen anymore although still feels bit warmer to touch and my foot much colder than my normal leg.
I have made an appointment in London with "Technology in Motion by össur, for a unloader brace fitting later this month. They have recommended the Unloader One -CTM brace. http://www.ossur.co.uk/Pages/10163  which is an off the shelf brace, which I can try for a month. If that does not work they also make custom braces, however these are more expensive. I will let you know how I get on.

I really am chomping at the bits to get to the point of being able to use one crutch. How have others managed this transition? How do you know when you are ready? How can I practice without shearing my graft?
Regards

cdubb

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #38 on: December 06, 2010, 02:24:32 PM »
Good luck CR,
I can't direct you too much on the transition to one crutch, as my ACI is a patalla ACI alongside a tibial tuburcle osteotomy, so completely different location with different shearing forces.  for example, you have difficulty loading in full extention , but can FWB in a slightly bend position.  I can't do any loading in flexion and absolutely no loading extension without puting shearing forces on my graft.  My WB protection was only due to allowing the bone to heal, as patella ACI's otherwise can FWB.  I'll be 5 weeks on Wednesday and now that I am permitted 50% WB, I have been crutching around the house only with one crutch.  Out and about, I still use 2.  Others on here I'm sure can direct you more appropriately though. 

Offline Rennschnecke

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #39 on: December 06, 2010, 04:33:44 PM »
Hi CR_UK

You sound really positive and it seems as though you're doing really well pain, heat and swelling wise.

I had grafts in my PFJ so was able to walk straight but not with flexion.  Your graft is probably still immature for the shear forces in walking with full extension.  Some people walk with protected angles for up to 12 weeks before discarding brace.  You probably know that it's important to maintain full extension.  If you can't do this when walking, then you could go for full extension with quad sets only.  Alternatively, you could do some terminal knee extensions where you put your knee through the motion without weight.  This can be done prone or standing. 

When prone, place some cushions just above the knee, then straighten out your leg from the relaxed bent position then relax.  Aim to repeat 10 times around 3 to 4 times a day.  If it hurts, just do enough that avoids pain and build up.  You could add on a straight leg raise backwards if you also want to work out your glutes.

To do terminal knee extensions when standing use something like a table for support.  Stand with your weight on your good leg and let your operated leg relax so it is slightly flexed with heel up.  Straighten your leg by pushing your heel down to the floor and push the knee back as far as possible to extend the joint.  Aim for 10 reps and 3-4 sets a day.  When you want more of a challenge you can aim to increase the hold up to 5s.

Shifting from 2 to 1 crutch is tricky I've found.  Some PTs encourage you to do this, but I think the problem is that you may end up shifting your weight and straining your lower back.  I know the principles of shifting to no crutches, but doing it in reality has been problematic.

1.  Shifting from 2 crutches to crutch-free: gradually increase the amount of weight going through your operated leg, e.g. 25%, 50%, 75%.  I think it's very difficult to know the percentages when you're walking, but you could just walk and put as much weight as you feel comfortable and check it on the scales occasionally.  By continuing in this way until you feel able to walk without crutches, you'll then be ready to just discard the crutches.  The downside is that you could develop a psychological dependence on them over time, but you may also find that you discard them more naturally much as you have been forgetting the paracetamol at times.  The benefit of this approach is that you will let your body dictate what you do and you can maintain a balanced gait more easily (apart from the problems with fully extending in walking!).

2.  Shifting from 2 to 1 to no crutches:  I personally don't like this as if you force this it's too easy to develop a limp, compensate by favoring one leg more than the other, and lead to lower back problems.  However, if you feel you could walk crutch-free that might be the time to shift to 1 crutch to reduce the psychological shock. 

How do you know whether you're ready?  I don't know that I'm the best one to advise on this as I've had such a chequered experience with this.  This time round, I've been doing some weight-shifting from my good to my operated leg.  I started with simply shifting from one to the other ten times as part of my PT session.  Then I started holding them, e.g. 2s, 3s and so on.  I had to give up at 5s this time, but I could walk for short distances.  I shall re-introduce these later to develop balance and proprioception.

The way I have approached things this time round is to stay on 2 crutches and gradually increase my weight on my operated leg.  When it was mostly there, I checked how robust it was by doing weight shifts and then increased the duration for standing on one leg.  At some point I just started walking crutch-free within the room, but still used two crutches between rooms as one crutch wasn't enough.  I kept trying to go onto one crutch, but found myself compensating so I returned to two.  Eventually I was able to be consistently FWB with 2 crutches and use only 1 crutch around the home without compensating.  I first went onto 1 crutch around 7 weeks ago and it's taken around 6 weeks before I could use just one.  I am now able to walk crutch-free for short distances around the home and am now monitoring how long it takes before I tire.  I do take 1 crutch along with me for insurance in the home, but I need two or a wheel chair when I am outside.

This approach has been highly structured and gradual, but it's taken me a long time to improve in this department.  I've been using crutches on and off (mostly on) since December 2008, so it's probably going to take me a long time to get off them.  I'm just pleased that I no longer have severe pain attacks after just making the bed.  I can walk for 1 or 2 minutes FWB without much discomfort and I hit the wall at around 5 minutes so not enough to go outside unaided.  Most people here will progress much faster than me, and the likelihood is that you will also progress much faster.

Don't know if this helps.
1/05 Ski accident: 5/05 ACLr LK; 10/06 Scope – debridement, trochlear cartilage lesion (Gr4); 12/08 Scope – chondroplasty, hematoma; 5 & 6/09 MACI patella & trochlea 'kissing lesions', ROM 0 to 80; 9/09 Scope – LOA, IPCS & patella infera; 9/10 Scope – AIR & LR.

Offline CR_UK

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #40 on: December 07, 2010, 08:41:17 AM »
Hi Renn

Thanks, that is really useful information and I will put it into practice, especially to just continue with 2 crutches and not try and force the issue of graduating to one. I have always had a dodgy back and my good knee is currently starting to complain.

I have been trying to do passive extension by putting a rolled up towel under my ankle  a few times a day, but the extension achieved is always very temporary. I've had to sleep with my heels over the edge of the mattress at night and this made a huge difference to my pain (apart from the Tramadol) Last night was the first night I was able to sleep "normally" on my back... another small milestone!
I will try the active terminal extension exercises you recommended, starting this morning.

Went to see the Occupational Health Physician yesterday, so that proper support can be arranged for my return to work. (had a disastrous experience returning after my MFX, with no support contrary to OH advice. I need to ensure this time that it's different, as the consequence of graft failure is just too awful to even contemplate.

Renn, are you medically trained by any chance. You have a wealth of superb information and provide such excellent support. I was just telling my husband this morning, that I find this board the only useful support in this journey. All my other "helpers" (GP, OH Physician, physio) have to be educated by me re the MACI, as most have not even heard of it (including an OS friend(specialises in hands though) I recently spoke to socially.

Thanks again...sooo much appreciated!! :)

Offline Rennschnecke

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #41 on: December 07, 2010, 11:39:58 AM »
No, I'm not medically trained.  I've just been doing rehab for such a long long time, done a lot of research, have a basic background in physiology for sport and fitness as well as a background in science – so a foundation on how to reason through these problems.  I also do a lot of medical desk research at the moment which gives me a knowledge base.

I have depth but not breadth in my knowledge.  I've picked up more knowledge about knees than a non-specialist but I can't necessarily interpret symptoms within a wider context which a medically trained person can do.

But many thanks for your vote of confidence.  :)

1/05 Ski accident: 5/05 ACLr LK; 10/06 Scope – debridement, trochlear cartilage lesion (Gr4); 12/08 Scope – chondroplasty, hematoma; 5 & 6/09 MACI patella & trochlea 'kissing lesions', ROM 0 to 80; 9/09 Scope – LOA, IPCS & patella infera; 9/10 Scope – AIR & LR.

Offline Cricket

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #42 on: December 07, 2010, 05:21:32 PM »
How are you walking with your crutches that it hurts your good knee? (Did I read that right? Now I can't find it again.) Has your physio shown you how to walk with crutches? My PT said that the time to go to one crutch is when you feel like having 2 is getting in your way and slowing you down. The important thing is knowing how to walk with one. The crutch and the bad leg go together on each step, and the crutch is on the opposite side from the bad leg to prevent excessive leaning.

I realized while reading your description of of pain when locked at full extension sounds familiar. I had issues with my knee "locking" and it was very painful to get it out of that straight position. I would actually pick the leg up with my hands to gently coax it out of that position. Is this what you are experiencing?

It hurt so much I started avoiding my prone exercises until my OS "gave me a talking to." I grumbled and stepped up the prone, and the locking pain started to improve significantly. Wrote about it here.

If that's the case, then step up the prone, not down. Hang a bag of books off your ankle. Just be really really careful getting out of the position.
Jan 2009 - OCD diagnosis in femoral articular cartilage of R. knee
Mar 2009 - Microfracture
Sept 2009 - Arthroscopy and cartilage harvest
March 24th 2010 - ACI part 2

http://allisonsaci.blogspot.com/

Offline CR_UK

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #43 on: December 07, 2010, 06:10:53 PM »
Hi Cricket
Thanks for your post. I think I hurt my good knee inadvertently, and with it taking the majority of the weight and often doing things that are not ideal, such as trying to swivel around in the shower to reach behind me for shampoo etc , etc., it was bound to complain at some point. After my injury (fell over backwards in snow plough position coming off a ski lift with bindings staying on as low impact ...someone obstructing) my good leg had also been similarly affected although minimally and settled. When it does all the work, it becomes symptomatic again. I'm sure that in the future (distant I hope) it will require looking into.I know how to use one crutch as spent the last 3 years after my mfx walking with one, was the only thing that helped. Wish I'd known about unloader braces and this forum at that time.

I looked at your site again, have read it several times, but always find something new. Looked at your images today. It's true that by focussing on improving extension, the rest seems easier. I have similar experience of pain on extension and after extending it passively (rolled towel under ankle) I also have difficulty coming out of it and need to coax it like you with my hands. Today I added the terminal knee extension on standing as recommended by Renn and this worked well with no discomfort...yeah! ;D

How were you with SLR?

Offline Cricket

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #44 on: December 08, 2010, 03:11:43 PM »
Glad you are enjoying my site. I found it very therapeutic to write. It is a struggle to keep updating now that things are easier, but it's not like I'm back to normal yet and I imagine the whole story is what is interesting, not just the early days. Let me know if there is anything that you would like more info on. It sounds like we are experiencing some of the same things.

I had a lot of trouble with SLRs. They were painful before the ACI (of course everything was painful before the ACI) and continued to be after. I did them, but it took a lot of mental preparation as the pain was pretty bad. My defect was on the larger side but I have been told by multiple people that I have a high pain tolerance, so I have no idea how my experience ranks with others.

Like I mentioned before, I did the standing SLRs, marching, and quad sets throughout the day to try to keep the quad active. For a while my knee just felt too unsupported and weak to do the SLRs (I was afraid it would bend suddenly out of a locked position. Ow!) so I wore my brace to do them. It helped!

Just keep moving. Anything you can do to activate your quad in between your exercise sessions will help.
Jan 2009 - OCD diagnosis in femoral articular cartilage of R. knee
Mar 2009 - Microfracture
Sept 2009 - Arthroscopy and cartilage harvest
March 24th 2010 - ACI part 2

http://allisonsaci.blogspot.com/















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