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Author Topic: LOA & MUA round 2  (Read 16681 times)

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Offline Rennschnecke

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Re: LOA & MUA round 2
« Reply #45 on: September 26, 2011, 02:16:25 PM »
Hi Stasha

Hope you are currently well and that the pain has gone down a bit.  Sorry I haven't been in touch earlier.  I haven't been on visiting KG because I became overwhelmed by work and now have no Internet at home so just picking it up wherever I can.

It's good to hear that you're managing to get a break through baking – and then you're treated to the finished products! ;)

I just wanted to say that I think you ought to have more frequent physio in your early days.  They should be concentrating on mobilising the patella, helping you to achieve full extension and checking you are working on ROM appropriately.  There are things they can do to help you get the swelling down, e.g. pulsed shortwave therapy.  Focus more on icing to relieve not only swelling but also pain (doesn't apply to Lottie with RSD).  Ensure you elevate frequently enough and for long enough – must be above hip and heart levels.  My OS and PTs have always said that people often don't elevate high enough; don't know if it applies to you after all the expertise you've picked up.

I think the basics are quad sets with your leg straight and also turned in and out to get to medial and lateral muscles.  Until you can get your leg straight with quads set and can hold for a count of 5 or so, it's not worth try for a straight leg raise.  I didn't bother with straight leg raises for months because I was working hard enough with quad sets.  Now (1 y on) quad sets are not enough so I do SLRs.  Just think quality not quantity so that you can save time and have a bit of a life.

FYI Lidocaine plasters are available on the NHS – I've been using them since December 2009, although now it is only every now and then.  I like the cooling effect they have.  It is helpful for some situations, but I'm sure there will be some pain situations for which the plasters aren't suitable.

Don't know what dosage of fentanyl patches you're using, Stasha, but if you're not getting sufficient relief then they need to be reviewed.  I'm quite small so I'm on 25 mcg, which is fine as long as I don't overdo things and I don't set off my neuromas.  I have morphine sulphate (Oramorph) for breakthrough pain.  You'll need to experiment with your medications and activity levels to find out when you are pain-free.  If you can't be pain-free under any circumstances then you must talk to a pain relief specialist in case there is some underlying condition to your pain that hasn't been diagnosed.

I'm now going to put in a good word on behalf of the NHS.  I would have had physio three times a week had I been local to my OS's hospital.  As it was, he negotiated twice a week with my physio (she couldn't do three times a week because of her various clinics and she wasn't available on Wednesdays so we could have a Monday, Wednesday, Friday routine.  I had two sessions a week for maybe 8 weeks or so and when my condition was stable I was reduced to once a week but it increased to twice a week again when my condition was not improving.  I was finally just going once a week at around 3 months post-op.  I was going maybe once every two weeks from 5 months post-op and was discharged at around 9 months post-op (possibly because my physio was going on maternity leave).

I think that 'AF' isn't always a term they use in the hospital.  However, they will all know about a 'stiff knee syndrome' and will be aware of 'cyclops lesions'.  The lower limb specialists will be more experienced with knee and ankle issues.  I have to say my best treatment has been by these specialists (but there are not many of them).

I have also been subjected to the 'hands off' sessions and objected to be 'talked at' by someone who knew I already knew more than she did.  However, I have been treated by those who like the 'hands on approach' as well.  I had an in-depth discussion with my OS and his mates on one occasion and it seems that 'hands on/off' is a personal style and not necessarily an NHS approach.  However, that won't help you as an individual going through the NHS.

To get the appropriate hands on mobilisation therapy you need on the NHS you may find it useful to ask your OS to direct therapy more closely.

Mouk:  the main objective of the CPM is to mobilise to knee to reduce the likelihood of it stiffening.  It's not necessary to go through the full range of movement (see HeatherM for her experiences with Steadman Hawkins).  Besides, it gets really uncomfortable beyond 100 degrees as the leg gets pushed into your chest and some CPMs don't go above 105 degrees.  In summary, don't fret too much about the angles on the CPM.  Just follow your OS's instructions.

Must go now.  Hope everyone stays well and I'll check in again later!

:)
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 Stasha83

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Re: LOA & MUA round 2
« Reply #46 on: September 27, 2011, 03:40:23 PM »
Hey Jigs

Welcome back!  ;) I'm glad to hear that things are going well for you, lets hope that they stay that way and you'll keep making improvements. As you'll have read that's not quite the case for me but I hope that I'll get there eventually. Third time lucky maybe?!

Hi Renn

It's great to hear from you, I was wondering where you had gone. I think in a way its good that you have been busy and not on here so much, it shows that you are able to get on with your life and not have to think about knees all the time which is great.

I am having physio 3 times a week at the moment, going once a week only lasted for about a week or 2 and I soon realised that it wasn't enough. My mum has also been trained by my physio to do some basic work with me at home, she's getting very good at mobes! I am happy staying with my private physio. Although it is costly, I feel that I have a better chance of recovery as they have worked with me for a year now and know me and my knee pretty well. My physio also sees my OS in London twice a week when he is lecturing so they are able to keep a close eye on my progress as such.

We are going to start hydrotherapy soon too hopefully (if it can all be arranged at the local gym etc), I think this could be really helpful for my walking and weight bearing.

I have been told that I can't have the Lidocaine plasters on an NHS prescription by my GP. I guess this is down to the local PCT? I am also not able to have Pregabalin for the same reasons. The PCT round here seem to be a bit rubbish for some reason.

At the moment I have the 25 mcg patches too. I am always in some pain, although the levels do increase throughout the day and depend on what I have done. Sometimes icing seems to make the pain worse which I don't quite understand? I have asked my GP for a referral to the NHS pain clinic, I just can't afford to see my private pain specialist anymore, my SSP doesn't quite cover it!

My CPM is going back at the end of this week so it'll be interesting to see how the knee copes without it. I am also hoping to go back to work on the 17th of October so fingers crossed it will all be ok.

How is your knee now? Are you able to do the activities that you want to do or are you still restricted? Fingers crossed for good news!  :)
June 2010 - R knee TPF & Hoffa removal
Dec 2010 - R knee- Arthrofibrosis
Dec 2010 - L knee Myxoid degeneration of meniscus
Jan 2011 - R Knee 11 steroid injections & Synvisc1
Feb 11 - MUA & LOA
June 11- Steroid inj, EMG & nerve tests
Aug 11 - MUA & LOA
Feb 12 - R Knee denervation

Juneau

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Re: LOA & MUA round 2
« Reply #47 on: September 28, 2011, 03:46:49 AM »
Hi Stasha,
I hope that you will be able to start hydrotherapy soon. I have started to go to the pool last week and have been 3 times so far. My PT wants me to go there every 3rd day and then later every 2nd day and really hopes that it will help me with strengthening. The first time I went, I was very worried about slipping but the pool shoes that I have really help with getting through the locker room and also walking in the pool. Last time I went, I was already much more confident and felt comfortable to increase my exercise program a little.

When you have to give up your CPM, maybe you could try a stationary bike at home. If you can't make it around yet, you can do half circles until you can. That will still help with bringing motion into the knee. I have a regular street bike but I got a stand for it so I can use it as a stationary bike with no or very little resistance and use it a few times a day for 5 - 15 minutes.

Good luck!

Offline Stasha83

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Re: LOA & MUA round 2
« Reply #48 on: September 28, 2011, 11:11:10 AM »
Hi Juneau

I'm glad to hear that your experiences with hydro have been ok so far. I think the first time will be daunting but it seems to be a pretty safe way of taking the next steps with my knee.

I don't have a bike at home but my Physio will let me use the one in his gym everyday so I'm planning on doing that. I can manage to cycle almost normally now as long as the seat is extra high.

How would you say your knee is now? Do you still have much pain?
June 2010 - R knee TPF & Hoffa removal
Dec 2010 - R knee- Arthrofibrosis
Dec 2010 - L knee Myxoid degeneration of meniscus
Jan 2011 - R Knee 11 steroid injections & Synvisc1
Feb 11 - MUA & LOA
June 11- Steroid inj, EMG & nerve tests
Aug 11 - MUA & LOA
Feb 12 - R Knee denervation

Offline Rennschnecke

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Re: LOA & MUA round 2
« Reply #49 on: September 28, 2011, 02:38:42 PM »
Hi Stasha

There's no need to change physio if you're getting the treatment you need.  I just wanted to highlight that the appropriate treatment is available through the NHS.  However, like any huge service organisation, opinions on their service is shaped by the individuals you meet and like any profession, there is a variety of abilities.  And yes, you may have to go through a large number of individuals to get to the person you need.  I know I've been working my way up the hierarchy. ;)

Hydro can be very good for you, but monitor how much you do because it's easy to overdo things.  I found that it was easier to avoid irritating my scar tissue on dry land, so ended up stopping the hydro.  Besides, it seemed that the effort of having 5 minutes in the pool wasn't worthwhile (i.e. showering, drying off and drying my hair).  Others have found hydro an invaluable therapy to return them to full function.

It sounds to me as though your GP is fobbing you off to preserve their budget.  I'm using fentanyl with pregabalin and my OS's pain specialist explained why gabapentin was useless for me.  At least it wasn't my imagination that stopping the gabapentin made no difference.

If icing hurts you then it's worthwhile be rechecked for RSD, or perhaps it's worth going through the treatment to check.  My research seemed to indicate that tests for RSD are not reliable and they tend to go on the classic symptoms and pain with icing is one of these – it's almost definitive.  If you have RSD and the current meds don't provide relief then it may be worth having a nerve-block type treatment from the pain clinic.  As far as I could work out, it's a bit like having your pain system reset. ???

Good luck with your return to work.  Will you have a chat with someone about making suitable adustments for you?  I would advise getting something to elevate your leg whilst sitting.  I have something like th item shown on this page:
http://www.online-ergonomics.co.uk/shop/shop-infopage.php?longref=1242~0
It was provided for me by my Disability Students Allowance and it's absolutely fantastic.  It isn't easy getting it to everywhere I need it, but if you could get this set up at your workplace you'll find working much more comfortable.

I'm progressing slowly.  My knee still has breakthrough pain, but I am doing more now as well.  I can do some tidying up and cleaning around the home as long as I do it in short bursts and sit down as much as possible (little things  ::)).  I have full range of movement, but I'm wary of steps still.  This is because I have had a MACI op (kissing lesions) so I want to test things carefully to avoid messing that up.  I ought to be OK now, but prefer to do things gradually.

I can't do everything I want to as I was an elite skier and have a role as a tutor to return to when fit, which involves skiing.  I can walk on level ground for around 5 minutes or so.  I have to go slowly on inclines and I have to go down stairs one at a time.  I'm now approaching the point where I might manage going up normally but will take it gradually to avoid setting off another pain reaction.  However, I am better than I was this time last year.  I have maintained my ROM but my fat pad is getting irritated with trying to get full extension when walking.

Did I tell you about the terminal knee extension exercise?  When your fat pad area is no longer painful or irritable then talk to your physio about extension when walking.  There is an exercise to do to help regain extension with walking – or maybe you've already tried it.

Anyway, must go.  I'm popping into the gym to do the bike and then I'll be working.  Still have no Internet at home and got a letter telling me to see my email about connecting to the broadband! ::)

'bye, 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.

Juneau

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Re: LOA & MUA round 2
« Reply #50 on: September 29, 2011, 03:58:00 AM »
Stasha,
I don't have a lot of pain but I think that I have also quite a high pain tolerance because I had some other pain issues and learned to do visualizations that  provide pain relief and the Kinesio tape that I am using also helps. On some days, I am sometimes more stiff than other days and then it hurts more. Also there is an area on the medial side of my knee that hurts a lot if I am not careful with my exercises and that also prevents me from pushing my re-hab more. Nobody knows what the cause of that is - either my meniscus that is very thin from 3 surgeries, or scar tissue.

I feel like I am finally getting close to where I was 6 weeks ago when I had that swelling episode that set me back.

Renn,
It's so nice to hear about your progress. It's great that you have your full range of motion.  ;D And it's also so nice that you can do things around the house as well. It's so trying to have to be patient, but better safe than sorry. I am so glad that you are still making progress. That's wonderful!

I agree that if you can spend only 5 minutes in the pool it's not worth while. I am very careful not to add too much at once. Today I made sure to look at the clock, so I didn't stay for longer than 20 minutes even though I felt that I could have done more but I want to be able to go back again on Friday. 

I would be very interested to hear about the terminal knee extension exercise. I have almost full extension when standing and when I put my leg flat but I am lacking quite a bit when I am walking. My PT thinks that's because of my lack of quad strength.

Offline Rennschnecke

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Re: LOA & MUA round 2
« Reply #51 on: September 29, 2011, 10:49:05 AM »
IMHO the terminal knee extension (TKE) exercise is only worth doing when you can get your knee straight and maybe even do an SLR.  At that point, all you will be doing is re-educating your muscles to get your leg to full extension when walking.  The details are thus.

Stand with your hands resting on a table edge or some other item which you can use for balance and/or to put some of your body weight through.  Have your good foot in front of the 'bad' one with the heel of the rear foot raised and your legs slightly bent – not a squat, more of a relaxed position or as you might be when walking.  You can start with all your body weight going through your good leg and your arms (i.e. virtually no weight through the good foot).  Once you're in position, extend your leg by pushing the rear heel down towards the floor.  I find it useful to hold for a count of 2-3 seconds; aim for 3 sets of 10 reps.  The exercise may be progressed by adding a resistance band which is tied around your knee and the leg of the table.

The alternative is to ensure you extend as fully as you can when walking, but it will be fully weight-bearing and it really slows down the walking.  However, as you're doing pool work, this exercise could probably be attached to one of your existing aqua ones.

HTH  :)
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 Stasha83

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Re: LOA & MUA round 2
« Reply #52 on: September 29, 2011, 10:58:28 AM »
Hi Renn and Juneau

Thank you both for the advice, I will keep a close eye on how much hydro I do and how the knee reacts.

I agree that my GP is fobbing me off. She did say that she  referred it to the PCT but both those drugs are apparently 'blacklisted' in my area. I just heard that I can't see the pain clinic until 18 weeks time. What a joke. I am fuming, I feel like I ask so little of the NHS - I have not used their resources for any of my surgeries or their physio teams and now that I do need a little bit of help I have to wait a ridiculous amount of time. I'm not quite sure how I am meant to cope for that long with the pain that I am in?! I will ring and ask to be put on the cancellation list but other than that I don't what else I can do. I am seeing a friend later who is a nurse so I will also ask her advice. It really does make me so angry.

Thank you for the link to the leg support, I think this could be really helpful for me. I have an extra high foot rest at work but at this stage that wouldn't be much use to me so I will ask if I can have one of these too. Fingers crossed they agree!

I am glad to hear that you are both progressing, slowly but surely seems to be the key. I do wonder with AF knees if we will ever return to where we were before the AF nightmare begun but for me, any improvement would be gratefully received!

I too would be very interested to hear about the terminal extension exercises. I really struggle to straighten my leg whilst walking. As I have no fat pad I think it could take a while for this area to settle, it seems to get irritated very easily. I am also no where near being able to do a SLR so I guess it's probably to soon for me to try?
June 2010 - R knee TPF & Hoffa removal
Dec 2010 - R knee- Arthrofibrosis
Dec 2010 - L knee Myxoid degeneration of meniscus
Jan 2011 - R Knee 11 steroid injections & Synvisc1
Feb 11 - MUA & LOA
June 11- Steroid inj, EMG & nerve tests
Aug 11 - MUA & LOA
Feb 12 - R Knee denervation

Offline Rennschnecke

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Re: LOA & MUA round 2
« Reply #53 on: September 29, 2011, 11:46:22 PM »
Hi Stasha

The 18 week wait is the standard that all NHS trusts (& equivalent) work to for a patient to get their first appointment following joining the waiting list.

I appreciate that you're in a lot of pain, but you'll be competing with all the other chronic pain patients for an appointment.  The pain clinic is very popular.  The pain relief consultants are also anaesthetists so have OR duties which limits their clinic times.  They will see all patients requiring pain relief including cancer patients as well as orthopedic patients.

As you said, other than request you be notified of a cancellation there isn't much else they can do.  It's difficult for them to prioritise you over the other pain patients who will probably also be in severe pain.

In the meantime, I think it is worthwhile you cutting back on your activities to see if that helps you.  I know, it's scarey.  However, I had some episodes when I was just too sick to do anything for a few days.  During that time I just slept so didn't take much medication and yet was pain-free.  That confirmed that my pain was activity-related and means that I know when my pain levels rise that I've done something wrong, either too much activity or the wrong activity.  I hope you can get some rest and that it helps you work out what you can/cannot do.

I think TKEs are too much for you whilst you are still in pain with what you do.  If you can't manage an SLR don't worry.  I took Dirk Kokmeyer's advice to heart and didn't try an SLR until I could hold form.  That meant I didn't even try until I could reliably do a quad set, hold for 5s and maintain hyperextension (would be straight if hyperextension is not a goal/possible).  I only introduced SLRs once the quad sets weren't helping.  I work on dynamic quad strength on the bike.

HTH – must go now!

R. ;)
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 Stasha83

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Re: LOA & MUA round 2
« Reply #54 on: October 31, 2011, 10:39:20 AM »
Hi everyone

I hope you are all well and your knees are behaving!

I haven't posted for about a month so thought it was time for a quick update. I am really struggling to move forwards this time round, after my op in February I had progressed a lot more at this stage. For some reason my knee is very very reactive still which is preventing me from progressing. I am still in constant pain which I just cannot get under control. The pain gets worse throughout the day and night time is horrible. My knee is also going red again at night and becoming warm. During the day I don't have any heat but the knee is a purple/red colour and generally just looks wrong.

I have pretty much retained my ROM, flexion is about 120 and lacking about 5 degress of extension. I am still missing terminal extension and having to walk with a bent knee. I am getting the horrible 'tight' feeling again though which I don't like.

Last Monday I had my usual physio session and my knee reacted very quickly and severly afterwards. I have not been able to calm it down since, and the pain seems to be getting worse rather than easing. I am seeing my physio again tonight so will discuss what to do. I spoke to him on the phone on Friday and I think he may suggest going back to my OS.

I really am beginning to feel that this is as good as it will ever be for me. I just don't know what my physio or OS will be able to do for me. I have a feeling that they will suggest injecting the knee but this has never worked previously. Of course I would be willing to try though.

I wonder if having no fat pad is impacting on my pain levels? I don't know how well a knee can cope without a fat pad? Has anyone else had experience of having no fat pad other than TKR's?

Stasha
June 2010 - R knee TPF & Hoffa removal
Dec 2010 - R knee- Arthrofibrosis
Dec 2010 - L knee Myxoid degeneration of meniscus
Jan 2011 - R Knee 11 steroid injections & Synvisc1
Feb 11 - MUA & LOA
June 11- Steroid inj, EMG & nerve tests
Aug 11 - MUA & LOA
Feb 12 - R Knee denervation

Offline Rennschnecke

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Re: LOA & MUA round 2
« Reply #55 on: October 31, 2011, 10:59:43 AM »
Hi Stasha,

I'm so sorry that you're really suffering – I'd been hoping so much that you would be improving this time round.  What has your physio been doing with you and what have you been advised to do to manage it yourself?

I had a search of the literature on fat pad removal as mine is fibrosed (if there is such a word!).  As far as I can make out the outcomes of fatpad removal are mixed.  My personal take on the situation is that it is akin to removing a meniscus but from the patellar tendon region.  The ideal is to keep it as far as possible.  However, in some instances this is not a viable option (e.g. the fat pad is no longer pliable enough to do its job of cushioning).

As you are still in the early stages of your last op, I wouldn't imagine you doing anything that would require a fat pad.  The benefit of removing the fat pad for you is that it cuts off the blood supply to the scar tissue in your knee allowing time for your body to break it down.

It really does sound like you ought to be in touch with your OS about your problems. :'(
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 Stasha83

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Re: LOA & MUA round 2
« Reply #56 on: October 31, 2011, 01:48:56 PM »
Hi Renn

I was hoping for the same too! I feel a bit like we have lost direction again, my physio said we are clutching at straws as to what to do with me. He did suggest taking a 4-6 week break from rehab and then try again but I'm not sure about doing this, To be honest I don't know what to do anymore, everything just seems to make it worse.

I do worry that the removal of what was left of my fat pad has made my knee worse. My OS did tell me that this op could make me worse but it was a risk I had to take.

I need to remember that it is still early days, it's just frustrating as I know I should be progressing better than this.

We shall see what the physio says tonight. My normal physio is away this week so I'm seeing someone else (who does know my knee well) so perhaps a fresh perspective could be helpful.

June 2010 - R knee TPF & Hoffa removal
Dec 2010 - R knee- Arthrofibrosis
Dec 2010 - L knee Myxoid degeneration of meniscus
Jan 2011 - R Knee 11 steroid injections & Synvisc1
Feb 11 - MUA & LOA
June 11- Steroid inj, EMG & nerve tests
Aug 11 - MUA & LOA
Feb 12 - R Knee denervation

Offline Rennschnecke

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Re: LOA & MUA round 2
« Reply #57 on: October 31, 2011, 06:36:25 PM »
Oh Stasha, you stopped being normal with your first complication!  :( :(

Your knee has shown that it doesn't respond well to 'normal' rehab and it hasn't ever shown a 'normal' progression.  It's unlikely to do so now.  :(

You need to talk to your surgeon about what you need.

I had mobilisations and stretching from my physio for 3 months along with ultrasound and shortwave therapy.  I did most of the other stuff on my own, at my own pace, listening to my knee to decide what I should do.  I wasn't progressing quickly, but at 13 months on, my sports massage therapist (PT as well) has said that I'm further along than he ever expected me to be so couldn't suggest anything more for me to do than I have been.

You may find it better to stop fretting about how behind you are in the rehab and focus on your current day to day needs.  You too may find you can see changes only on the scale of months rather than weeks.  Although there are mixed findings for the removal of the fat pad, I would imagine that applies to FWB.  If you are in pain even without FWB then there may be something else that is causing you problems.

Contact your OS urgently to discuss this.  Prime his secretary about this so that he can maybe discuss this with the Prof beforehand and explore all the options to consider.

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 Lottiefox

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Re: LOA & MUA round 2
« Reply #58 on: October 31, 2011, 07:25:49 PM »
Hi Stasha.

Oh boo. I was SO hoping that the lack of an update meant things had improved. I am SO sorry you're still in such a lot of pain and feel stuck. It is simply vile being the one with the complications. I agree with Renn that you need to see your surgeon and prime the Prof too. I know a few posts back you mentioned about the ice, and Renn commented on being checked for RSD. Did that ever happen? I know I probably bang on a bit too much about it and see it when it isn't there but having dealt with arising in my foot I am probably hyper vigilant. Is ice still making the pain worse or have you stopped icing? Along with the colour changes and heat do you get periods of cold at all? Any weird sweaty events? I know before my meds were stabilised my pain would get worse through the day and by night time it was enough to make me cry. Of course, many other things can be causing the pain but it is just a thought. I know you're on Neurontin but I was reading somewhere that Pregabelin has a much better success rate with RSD type pain. Might be time to start fighting the PCT/pain clinic. It might also be worth trying to see if a nerve block could be scheduled to see if the pain responds. It isn't likely to remove the RSD with one shot, but if the pain abates then your treating team will have a better idea of what to do next and how your rehab should proceed. It is unfortunate that rehab for RSD is quite aggressive but of course with AF that is the worst thing you can do.

It sucks being in pain. I wish you could get some relief and at least start to feel like some gains are being made. I think it is definitely wise advice to consider things in terms of months not weeks and not tell yourself you should be better than you are. You are where you are, and you need some more advice to move you onwards. I now think in months, and even years. I hope that by 12 months my RSD will have continued to reduce (it is gradually slipping out of my toes and side of the foot!) and I can come off my meds. Time will tell. But until your pain is improved you just start to feel so hopeless.

Good luck and keep us posted,

Big hugs xxxxx

Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline Stasha83

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Re: LOA & MUA round 2
« Reply #59 on: November 01, 2011, 11:36:16 AM »
Hi Lottie and Renn

I saw the physio last night and she does not know what to do with me either. She tried to call my OS there and then but didn't have any luck. I have emailed his secretary this morning and asked for him to call either the physio or me. I really do feel that no-one knows what to do with me anymore, I feel like I am stuck with a wrecked knee that no-one really knows how to help.

I have an appointment with the NHS pain clinic at the end of November. I was checked for RSD previously and the verdict then was that I didn't have it. I am not icing at the moment, I think that ice makes my nerve pain worse. I don't get any cold periods or sweaty problems. I was meant to be prescribed Pregabalin instead of the Gabapentin but the NHS here won't let me have it and I can't afford a private prescription for it.

I like the sound of nerve blocks  :) I would quite like a permanent one! I will be asking about this when I go to the pain clinic. I am slightly worried that they won't know what to do with me there either.

I think I just need a plan of some sort to give me some focus rather than the feeling of clutching at straws. I just feel like the vicious circle has started again and once again no-one really knows how to stop it.

On a positive note I am managing to work again and earn some money which is great!  :)
June 2010 - R knee TPF & Hoffa removal
Dec 2010 - R knee- Arthrofibrosis
Dec 2010 - L knee Myxoid degeneration of meniscus
Jan 2011 - R Knee 11 steroid injections & Synvisc1
Feb 11 - MUA & LOA
June 11- Steroid inj, EMG & nerve tests
Aug 11 - MUA & LOA
Feb 12 - R Knee denervation















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