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Author Topic: New member - 3 weeks post MACI and struggling...!!  (Read 17108 times)

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Offline CR_UK

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New member - 3 weeks post MACI and struggling...!!
« on: October 27, 2010, 05:56:58 PM »
Hello,
I have spent much time reading on this forum and do hope someone out there can advise and hopefully reassure me. Had MACI L knee for femoral condyle defect on 7/10 and am day 20. After coming home( 3 nights in hospital) really started struggling with pain management mainly at night which started around day 5 and coincided with swelling and trying to reduce anagesia due to side effects. GP came to see me at home and analgesia addressed. Started taking every 2 hours alternating paracetamol, diclofenac and dihidrocodeine at max doses.
However although ROM improving, less pain on maneuvering in out car ,chair, bed, dressing etc I have significant background pain(severe at night) especially if knee been still for about 30 minutes. I wake up every 1-2 hours and only manage to settle again after getting up a bit and then icing. The latter is the best but almost needs to be done continually. Not had much sleep and same happens in day if nap...wake up after about 30 minuts because of pain. Im getting alarmed as from posts it appears that things should at least have started to settle a bit. Has anyone had a similiar experience and importantly did it go away ?? :'(
« Last Edit: October 04, 2011, 12:37:42 PM by CR_UK »

Offline Rennschnecke

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #1 on: October 27, 2010, 08:05:36 PM »
Hi CR

You'll keep hearing this pain is very individual and could be from various reasons.

If icing helps with pain control consider getting a system to enable continuous icing overnight so you can sleep.  The new Aircast system can be had with an automatic pump but I think you also need the power supply as well.  This is cheaper than GameReady which I think is a better system from what I've read, but GameReady is much more expensive and hasn't been readily available in the UK.  I think they've got agents in the UK now though so some research on the Internet may reveal who to contact.

If the current pain meds aren't sufficient ask you GP about whether you could try tramadol (sometimes works better than dohydrocodeine depending on the dose you get), morphine sulphate or oxycodone.  The last two are strong narcotics and you may not be prescribed these.  Let your GP know that you are not sleeping and the current meds aren't helping.  They may then prescribe amitriptyline or a sleeping tablet.

Your pain may be higher owing to sleep deprivation, so you really need to get this sorted out. 

If immobility is the problem go back to your surgeon and ask whether they think a CPM would help.  You can hire them in the UK, but your OS may be able to make arrangements with the physio department or the physio department may be able to make recommendations on whom to contact and possibly do a deal.

I didn't have the problems you report, but I had a CPM for about 7 weeks and had a different lot of meds.  My problems set in later.

I hope you get sorted quickly otherwise it'll affect your rehab and PT exercises.

Take care!
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 #2 on: October 27, 2010, 08:42:03 PM »
You need a stronger pain killers, I'm on Tramadol which I was given on discharge but didn't have enough and ran out after first week. I had a fair amount of dihydrocodine which I was taking before the operation and so switched to that but it really didn't work. I got an emergency gp apointment and got more tramadol which settled things down.

If your taking maximum doses of anything then your on the wrong analgesics, try something stronger, its ok in the early days to need a fiar amount just be sure to ease off them as soon as you can. I take paracetamol & Tramadol together, apparently the paracetamol helps the tramadol to work better, I was on five or six a day but now am down to two at nine weeks.

You can't be in pain, I believe that mental state is an important part of recovery and constant pain doesn't help. If the side-effects are stomach/ toilet related then change of medication could also help, I found dihydrocodine/ dichlorofenac to really effect me, tramadol is much better although you may also need something like Movicol which you can talk to your gp about.
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 #3 on: October 27, 2010, 11:51:38 PM »
In reading a lot of the posts on pain mangement and meds, it seems to me that in the UK, they don't  as readily prescribe narcotic pain meds as they do here in the US.  I do think they are way over prescribed here (example is my husband went to the Dr. for a sore throat and was given an rx for Vicodin), but afer an operation like this, I would think that narcotics for a period of time would be indicated.  I know that after my ACI/AMZ next week, I'll have long acting Oxycontin with Norco inbetween....both narcotic pain meds.  It seems that a lot of people in UK seem to get Tramadol, which is a non narcotic pain medication. 

Offline Rennschnecke

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #4 on: October 28, 2010, 01:32:26 AM »
The standard medication for OS patients on discharge in the UK tends to be a combination of paracetamol with ibuprofen and/or a codeine-based drug which could be dihydrocodeine or tramadol.  I think with AMZ the oxycodone will be a real blessing.

The restrictions on prescribing narcotics may be a cost-based issue (i.e. they cost more than the standard items for the NHS) and there may be some issues about expertise in assessing pain levels.  I have been assessed by a pain consultant as someone who can be prescribed the full-range of pain meds as requested (they decided I was sensible!!!).  Certainly, the Drs in hospital got very jittery when they heard about my pain medication regime and wanted to consult the pain department.  Didn't get any visits so assume (bad idea  :-X) that I was rubber-stamped by my anesthetist.

I discussed post-op pain management with my physio who said there was an issue about this and there is a study into this at my local hospital results not yet out.

The major difference to bear in mind is that in the US many more ops are done on an outpatient basis i.e. you're in and out.  In the UK more patients will be kept in and all patients should be kept in until their pain is managed sufficiently by the medications they will be discharged with.  If morphine is required or IV paracetamol etc., then they will be kept in until they can come off it.  Unfortunately, this doesn't take into account the possibility that a patient can have increased pain on discharge.

I do envy the meds you get in the US and I think it would have saved me from spending 5 months with very severe pain until I was given access to more comprehensive treatment through the pain clinic.  I'm now in a very lucky position of being able to request a wide range of meds and learned the hard way about keeping on top of pain.

CR if you don't get any relief from the GP try to go to A&E at the nearest hospital to get some help.  That way you may get to see a pain clinician who can pave the way to stronger meds.
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 #5 on: October 28, 2010, 02:35:27 AM »
Thanks Renn, You're always a wealth of information!  You are correct in that there are a lot of outpatient ops here...as mine will also be.  It is a bit scary knowing that so many people are kept for several nights following this, but at the same time...so many people fare just fine at home  and actually prefer being at home, so I'm sure I'll do just fine as well.  Not that it won't be miserable...but I think I should be okay.  It's just so interesting to see the differences between healthcare systems and medication management. 

Offline CR_UK

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #6 on: October 28, 2010, 08:56:03 AM »
Hi all
Thank you soo.. much for your replies and advice. Have come over all emotional and had a cry, did not expect a response so quickly and am really grateful. I will phone the physio department at the hospital in London where I had the surgery re a CPM machine today. Have my first follow up with Mr Skinner tomorrow and will be better placed to discuss my pain management and a CPM machine.
I will let you know how I get on.
I will also try Tramadol instead, but will wait until I've seen OS tomorrow.
Thank you again!!

Offline Youthist

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #7 on: October 28, 2010, 09:48:12 AM »
Sounds like we are really close together in terms of our experiences - we both had Doctor Skinner, and mine was just under two weeks ago !  I am seeing him a week today for my 3 week check.

Hope all goes well - let me know what he says.

Offline mlashmar

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #8 on: October 28, 2010, 03:17:48 PM »
Hi

Hope the pain is easing now.  Thoroughly recommend the ice option, the aircast and cuff works really really well, often doing the job when the meds aren't quite up to it.  You should be able to get one for about 100 online, worth a search around.  Ice needs filling in the morning and can last all day (most likely will need a refill in the afternoon through).

Good luck
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 #9 on: October 30, 2010, 12:41:21 PM »
 :)
Hi all
After your very helpful posts, I telephoned physio dep at hospital day before my FU(yesterday) to try and organize a CPM machine, got some Tramadol from GP, although waited until last night to try the Tramadol. Wonderful!! had first night of what I would call "sleep"Still woke up frequently, with some pain (lower level though) which with quick top up with ice (aircast cryo cuff) allowed me to fall asleep again within minutes.Feel on top of the world and I'm on a high this morning.Dont think I would have been without this forum and your help.
Mr Skinner was pleased with my progress. Ahead of game he said in terms of ROM, but have non existent quads and will therefore have to continue with brace, pwb as comfortable, retain brace at night. He agreed with the recommendations made by you Renn and hence I have a CPM and started the Tramadol. He also felt that the Codeine was not sufficient.
I have to travel to London to see him(live in Canterbury, Kent) so a long day with negotiating the M25 on a Friday. managed to arrange the physio at Bushey Spire Hospital who have experience in treating MACI patients to liase with my local physio, where I am the first patient she has had.
Been out for breakfast this morning, although leg on a chair as still not comfortable sitting normally yet for longer than a few minutes. Its just a return of some "normality" and got me out of the house. Lovely crisp sunny morning which I was able to take in and appreciate.

Offline Rennschnecke

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #10 on: October 30, 2010, 01:40:36 PM »
Really pleased to hear that you're starting to get some sleep in and that you're feeling more positive about things.

Hope things continue to improve for you.
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 #11 on: October 30, 2010, 02:44:37 PM »
CR_UK: Great to hear that you have better meds and are getting some sleep, its really important to rest although equally important to get out in the fresh air and sunlight when you can, does wonders for mental state.

Don't worry about the weakened quads, the MACI rehab is quite long and they will come back in time with the right exercises. I had the physio organised before I went in and passed on the contact details to Stanmore so they could send her everything she needed to know on my discharge. She did have to call them a couple of times to clarify some points and is happy with guidance she got. Its really important to have physio early on, even while nwb there were exercises you can do to start rebuilding the quads. The rebuilding will take longer in my case because I probably have been favouring my good leg for more than a year before the operation as the knee got more painful but am really doing well now even though i've only been weight bearing for less than 4 weeks.

I think it is right to stay in hospital for first few nights until patient and medical team are happy pain is under control, I had an on-demand morphine pump for first 48 hours which I needed, just make sure you get enough pain medication on discharge to last you as I find the hospitals are a bit stingy (probably for cost reasons) and don't give you enough which is crazy for an operation as invasive as the MACI.
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 #12 on: November 13, 2010, 10:27:01 PM »
Hi All
Ater having a lovely pamper day out for my birthday yesterday at a local spa with pedicure and massage and really feeling optimistic as I had coped with a full day out, I am distraught this evening as tripped and fell, instinctively putting my operated leg out to catch myself, and it then buckling and I crashed to the floor. My knee is painful, not hugely more, but its there and over time starting to ache more. My back is also now starting to hurt. This wasn't immediately apparent. I phoned Mr Skinner and although he said 'probably' not sheared the graft, as its usually very painful, swells. He asked if I could do SLR, which I could. However the fear has set in big time and struggling to lighten up. Dont really feel nearest and dearest understand the "angst" if this fails with what this surgery takes out of you. Anyone out there know of trips or slips that were OK and what their symptoms were and advice given. Any reasurance...please :(

Thank you Renn for your reply re the irritability of knee. I had actually slowed things down even more, and felt this was helping until this fiasco this afternoon.
I hope when I wake up in the morning that all feels more "normal" again

Offline Rennschnecke

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #13 on: November 13, 2010, 10:50:51 PM »
Hi CR_UK

Oops!  :-[  At least you had a good day before then.

I think Mr Skinner knows what to look for as he's done a lot of these and will know about the failures he's dealt with.  I think MACI is more robust that we sometimes think and you're around a month or so post-op now IIRC.

I didn't have any accidents such as you've had I was too terrified to take any risks!  But I did read about someone who went out in a golf buggy but ended up toppling it by going too fast and falling out of it hurting his knee.  He shared your angst, but it turned out that he hadn't damaged his graft with that incident.  I've also read about people slipping on puddles of water etc. who were OK.

I think that as long as you don't make a habit of this the chances are you'll be OK.

Have a good night's sleep!
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 #14 on: November 14, 2010, 08:16:10 AM »
Thanks Renn
Night was surprisingly good (a positive sign I hope?) Not got out of bed yet. Have some new twinging but hopefully this will disappear. Unfortunately in graft vicinity  :-\