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Author Topic: New member - 3 weeks post MACI and struggling...!!  (Read 17109 times)

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Offline mlashmar

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #15 on: November 16, 2010, 08:15:38 AM »
Renn -  you should be renamed Oracle!!!  Think everyone on here appreciates your support!

CR - How are things going with you?  Have things calmed down a little?  Like Renn, no practical experience myself of jarring the knee, but have had a few occasions when it felt like it had all gone wrong for various reasons and it is easy for those thoughts to dominate.  So far, things seemed to have turned out to be OK despite the anxiety and Mr Skinner seems to be positive with you too, so that is good news.

My only similar experience was the day after I was discharged from hospital, my other half managed to stand directly on my knee (full bodyweight).  I felt in pain as a result, but things calmed down and no harm was done from what I can tell 12 weeks later.
Left knee
Full thickness defect (20mm x 20mm), Trochlea
Arthroscopy x 3 (1997 - 2006 NHS) - lose body removal, lavage and debridement
Microfracture 2008 Spire Southampton - diagnosis of trochlea defect
MACI Stanmore 2010

Offline CR_UK

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #16 on: November 16, 2010, 08:51:58 AM »
Hi M
Thanks for the post. I'm feeling a bit calmer today. The twinges in graft area seem to be settling and physio thought possibly it's more soft tissue that has been yanked. Fingers crossed she is right. This post op period is such an emotional roller coaster, something I never anticipated, especially the fear & paranoia that it might fail, or being worse off than preop (as my unfortunate experience after the microfracture procedure) I now get anxiety palpitations when doing the stairs as thats where I fell)
My ROM is steadily improving (passively about 120) and quads are getting stronger. Managed SLR with the brace x5 this morning.  ;D This is great as did no SLR until the last few days as it was always a problem preop. Ive only done static quads and had to assist it by pushing the patella medially as it wouldnt track properly and cause severe pain. Did the SLR this morning in brace locked in extension(saw this advice on post from Renn) and was able to do it. First had to help initiate it by pulling the leg up on the brace and could hold. Now I can lift. ;D ;D  All these tips and info on postings has been really helpul in overcoming obstacles. My pain seems to be settling too, although still on all my analgesics. At least no significant breakthrough pain. If this trend persists I will try and wean myself off meds slowly.When did you stop your analgesics?
Is Mr Skinner your consultant too? At 12 weeks do you think you would be abe to work? Im due to RTW on 3 Jan. Have a job that entails a lot of up and down and walking about and lots of change of direction in walking. After my microfracture procedure I had very poor support at work despite letters from occupational health department advising re support required.
Worried that I wont be ready or that things will fail due to the pressures. What do you think ? What job do you do ?
Still not heard from the insurance company(Aviva) but have not had a bill from the hospital so hoping all OK.

Offline Rennschnecke

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #17 on: November 16, 2010, 01:18:32 PM »
CR, You're a doctor, right?  In that case, talk things through with your OS and he'll advise on when you should return to work.  With 120 passive flexion you're doing really well (I wasn't allowed to go that far as I had two really large grafts),but we can't tell how you will be at the 12 week point.  The great thing is that your OS will have a really good understanding of what is involved in your work.

My own experience is not relevant to you as I needed further surgery as I couldn't bend to 90.

Mike, thanks for your endorsement.  I think it shows just how much time I've spent here obsessing about my knee (SAD  :'().  Looking forward to the time when I can go back and 'get a life'!  ;)
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 #18 on: November 16, 2010, 03:50:24 PM »
Renn,
I second mlashmar's comment about what a great resource and what great support you provide for others on this board.  It's unfortunate of what you are going through with your knee; however, you take the time to use your knowledge to help others with their knee problems.  So...thanks for that!  Your comments are also always so positive!

Offline CR_UK

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #19 on: November 16, 2010, 04:17:09 PM »
I could'nt agree more. Thank you Renn!!
Wish I could reciprocate , but not as knowledgable as you are.
Hope that you are making progress. How are things with your knee going at the moment?

Offline Rennschnecke

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #20 on: November 16, 2010, 04:35:35 PM »
Aw, shucks!  Thanks for the comments!  :-[ :-[

Making slow progress myself but think there will be a better end point than last time.  The prevailing pattern seems to be 2 good ops, 1 bad op ...

I have learned a lot through my own experiences and research, which still continues.  Like some others, I'm cross about the fact that the professional support was lacking in sufficient knowledge and don't want others to suffer in the same way.  However, I also hope I don't overstate some things from my own prejudice so that each person can find the optimal way through their own recoveries.

I'm really glad that you're all doing so well. 

CR, as a clinician yourself, has there ever been any debate about getting patient feedback to help develop the healthcare system on a continuing basis?  I realise the risk is that some people just offload complaints and moan, but there may also be people who can give a patient perspective on what they would have liked to happen to help reduce the risks of complications etc.  I know that there are sampling surveys, but presume complications are a minority outcome, in which case representative sampling won't reveal areas that might be easily adjusted.  Just a thought and nothing any one individual can correct.

Be good and keep doing the rehab!  ;)
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 #21 on: November 17, 2010, 12:35:47 PM »
Hi Renn
Wish I had the answer to the problems in health system here. I think it is too big and cumbersome. Patient feed back is obtained as part of audit and also as part of appraisal and revalidation for doctors , but thats where it ends. It's a tick box exercise in my opinion as things don't seem to change and as an individual you are up against the mighty system. Generally most issues I think are due to system failures and is a problem for clinicians as well as patients .Being on the receiving end though really highlights the problem of the poor aftercare for me, especially on reading these postings.
I could have had the surgery on the NHS with Mr Skinner, but I opted to go privately so that I could ensure I definitely had my chosen OS perform the surgery as well as follow up. I wanted to avoid the pitfalls of the NHS (as has happened for summerfun)Despite that there were difficulties re the nursing care, but it boiled down to poor communication and a different face every time.
On a different note I have been trying to research use of unloader braces post MACI but not found much. My physio today mentioned that she thought it might be useful during the rehab period especially if there is increased activity(every day living) that one cannot avoid and that one knows  from pre op experience would aggravate my problem  due to shearing force. Does anyone have any experience of this? I will ask the OS next week but thought it useful to have further input if possible.


Offline Rennschnecke

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #22 on: November 17, 2010, 03:46:40 PM »
Hi CR

I know that no one individual can sort out the NHS system.  There are some deeply embedded cultural issues to change and research shows that true attitude changes take around 30 years or so.  But this is a depressing subject.

I've been quite lucky with the NHS as my OS has always attended my case – something to do with me being awkward/tricky! ;)

I can't recall if you have a condyle defect, but I didn't have an unloader brace.  I'm not sure whether it would really help, but I'm sure your OS will know.  As far as I am aware you need to tread a fine line between compressing the cartilage graft and not shearing it off.  Wearing a brace may reduce the risk of shearing, but it may also prolong the recovery time which relies on having sufficient forces on the graft for it to mature.

Hope you let us know about this once you find out.
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 #23 on: November 19, 2010, 05:04:43 PM »
 :)Reached the 6 week mark yesterday but feeling a bit low today :( after actually having had a much better week before taking a step back again. I cannot complain about my ROM which is excellent and quads are getting stronger and sleep is less interrupted. Still on diclofenac,paracetamol and tramadol, the latter at night only. As the SLR appeared to be working with the brace locked in extension and I was readily able to do it, I increased it to 10 4x day yesterday. At the beginning of the day I had been excited as I managed to stand for about a minute FWB (as a trial but with crutches in case) without any obvious discomfort. By late afternoon my knee started aching and minor rotation (leaning to pick up a cup of tea from the table) with leg in brace ,supported on couch and extended, elicited a very sharp pain in graft area.Later when I tried to stand with PWB as a trial again had immediate very sharp pain in graft area. Today my knee aches and get pain in graft area that was not there before. I always had problems with SLR prior to surgery and physio and I think that due to the location of the chondral defect that the compression of tibia against femoral condyle on SLR is too strong and causes problems. Worse still if there is a bit of lag as this would lead to a shearing force. I certainly managed to do the SLR without any lag, found it not too uncomfortable, and would hold for count of 10. I'm not sure if I should stop the SLR . Is this a temporary setback ie too many or will I cause harm (given my previous history)
Received a copy of the consultants notes yesterday, my defect 10x15mm on medial femoral codyle as well as a 25x10 mm defect on medial facets of patella. The latter were treated with thermal coblation rather than cartilage transplantation.
At 3 weeks review he described my ROM as unusually good but complete wasting of quads.
Has anyone also had problems with SLR and what alternatives helped.

Offline Rennschnecke

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #24 on: November 19, 2010, 06:42:18 PM »
Sorry you're having a bad patch at the moment, CR, I'm sure you'll pick up as soon as the pain dies down again.

I didn't have problems with SLRs ever, just pain with quad sets lately.  However, others have reported difficulties with SLRs and they seemed to report not being able to do it one day and then suddenly on another it just went easily.  They couldn't attribute it to anything specific.  I guess that if you keep up with the quads work, the whole muscle group will suddenly wake up again.  An alternative you could try is raising the leg with assistance, holding it for a short count then assisting it down.  I'm not entirely comfortable with this as it may over-stress your symptoms.  I know it doesn't feel like it, but you are still at an early stage in your recovery.  I think at this stage you feel like its been going on forever ...  :-\

Re. pain: I'd suggest scaling activity back to the basics.  This is based on my research on arthrofibrosis and what the PTs do at the Steadman Clinic.  You may just have irritated your knee, but if you pull back you can get it to settle more quickly – usual treatment RI(c)E.

I think my knee has joined yours in sympathy.  Felt really good FWB, so cautiously went down to one crutch on Wednesday.  Although quite uncomfortable on Thursday and advised by PT to rest one day on one day off, I thought it felt OK and so carried on.  You'd think I'd know better by now, but I didn't and sure enough my knee told me so in no uncertain terms this morning – increased pain and heat.  I think the swelling is also worse as I can't bend it as much today.

I was going to start standing for a count of up to 10 (maybe less e.g. 3 or 5), a few times a day.  As I have had a bad history of over-sensitivity, I will only increase activity once every 3 to 7 days as long as there is no change in pain etc.  I don't know if this will work and I'm still trying to work out a way to get to walking FWB.  Just going from 2 to 1 to 0 crutches whilst simple has never worked since the MUA last year.

I understand fully the frustration of needing crutches – can't do much with hot drinks can you?  I've thought about getting a flask for tea only as coffee flasks always seems to taint tea.  But I've been thinking about it for a while now. ::)

If you find a walk to transition to walking let me know.
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 KartBoy

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #25 on: November 19, 2010, 09:50:13 PM »
CR, You seem to be in one heck of a rush, I understand this but my knee cartilage was wrecked by a TPF (Tibial Plateau Fracture) and the incredibly useful aspect of this forum was telling me what had happened, how serious it was and how long recovery could take. I had my MACI twelve weeks ago, and was non/ partial weight bearing for first six, I worked up to FWB over two weeks!

My understanding is that graft takes three to four months to stabilize and up to a year before its gets strong enough to beat up. You need to back off a bit on the exercises, at least in my opinion. You may have damaged the graft, hopefully you haven't but you risk completing the job properly if you overdo it.

Maybe i'm too cautious but so far my recovery has been better than expected, my physio has told me off genetly a few times for being a bit too cautious and nervous but also makes it clear that low risk is the way to go. What by the way is SLR? I'm sure I should know but brain foggy tonight, although not foggy enough to stop me putting in my 5c.

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 :(

cdubb

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #26 on: November 20, 2010, 02:45:31 AM »
SLR = Straight Leg Raise

Offline Cricket

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #27 on: November 22, 2010, 06:25:06 PM »
Just thought I would chime in because I also have had great difficulty doing SLRs and tried two different exercises with my PT that also worked the quad, but weren't so painful. Maybe you can discuss them with your PT as an option for the bad days?

The first, and most obvious, is to do a standing SLR. It is basically the same exercise, but you are standing instead of laying down. Since you aren't working against gravity, it is much easier. It is also less effective of course, but better than nothing.

Second, and less obvious, is something my PT called marching. Sit on the edge of the bed with your legs at 90 degrees and then raise the knee of the bad leg straight up. So, it is a little like a high march movement, only seated. When SLRs were at their worst for me (after my MFX failed) I was still able to do these.

But yes, there are alternatives to SLRs that are better than nothing. It's worth talking to your PT.
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 #28 on: November 23, 2010, 07:26:44 PM »
Hi Cricket
Thanks for that info. I shall try it and will discuss with my PT tomorrow. I have rested my knee since last week and fortunately it is now settling down after complete backing off and avoiding full extension except passively on CPM. Seeing OS on Thursday and hopefully have a few answers to questions and reassurance about that nagging fear of having damaged the graft. Unfortunately weather report predicting snow...(thinking to maybe to drive up to London tomorrow instead and stay in a hotel in case in view of the possible chaos that one could experience on the M25... never good even at best of times!) Although wouldnt be happy to stay outside my comfort zone but mentally just couldnt cope with missing the appointment.

Kart Boy thanks for your comments.. I think after reading mlashmar post on practicalities this morning I realise that my return to work date is causing some stress and pressure on my rehabilitation , much like his booked holiday. Although I arranged 6 weeks extra ie 12 weeks , at moment I just cannot see myself back at that time and getting stressed about my waiting list. I would need to let work know at this stage if I will be back but have no way of knowing now how I will be in another month. I think it would take some pressure off if I extended my time off and returned earlier if OK. Certainly it would take some of the pressure off re my progress and rehab. Will discuss this with OS when I see him.

Renn
Also due to discuss unloader brace with OS, but found post op posting of Nikki (link on crickets blog) where she wore one for increased activities for about a year. That's all I could find at the moment.I will report back what he says.

Offline Cricket

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #29 on: November 23, 2010, 09:40:44 PM »
I do have an unloader brace (defect was medial femoral condyle) and my OS has me wearing it all the time until one year post-op (though he is being very conservative with my guidance due to my previous failed MFX and size of defect). I've gotten rather used to it. It does help the knee feel more stable and prevents any twisting motion.
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/