Can surgery help when pain is hugely exaggerated?

[jenny1000]

Hi (sorry this is going to be long),

I have had knee pain for 9 years which has worsened, very quickly the last couple of years, so much that I can now only stand for about 5 minutes and sit with my knees bent for about 45 minutes.  I have maltracking, patella alta (not severe), misplaced tibial tubercles, flat feet, rotated bones although again not severe and my fat pads are pinched between the bones causing inflammation.  I take painkillers 4 times a day, either 100mg tramadol or 60mg codeine.  I have reduced the tramadol so now take more codeine than tramadol.  The rheumatologist thought it might be nerve pain (although amitriptyline a while back didn't help), so I'm now on an increasing dose of 1800mg gabapentin per day which has done nothing.  I use a TENS machine most days which helps, but I still need medication.

I have tried loads of conservative methods including physiotherapy (last few months have really strengthened my legs but pain continued to worsen), acupuncture, taping, steroid injections, orthotics, even hypnosis...nothing has helped at all.  I've just started seeing a chiropractor too.  I had a LR, not knowing better, in 2009 and at the time my cartilage was smooth.

My OS initially recommended a TTT and said that I had to strengthen up for this, but now will not operate due to the exaggerated pain.  He said that if he operates then the pain would continue because it has now got 'a life of its own', which a rheumatologist also said.  I have spoken to drmark on here and he reckons he can help - I need to go to Texas to see what he would suggest, but obviously the travelling is a huge problem.

What I'm wondering, is did anyone have pain like mine which has been helped by surgery?  Everyone on here talks about coming off all painkillers however long after surgery, but even if it helped I would still need at least codeine for the unoperated leg.  People also talk about exercise bikes etc after surgery - I can't use an exercise bike, cross trainer, leg press, or leg extension machine - instant agony!  I don't want to completely go against what my OS has said because he is good (Mr. El-Shazly) but I can't keep going on like this - I can't do anything now.  Obviously going to Texas will be a huge deal with lots of time/money/planning/pain involved so I want to get an idea first about surgery when the pain is this bad (if anyone read all of this!).

Thanks,

Jenny.

[lisa424]

What does your OS recommend right now? Does he think there's a way to get the pain down so you can have surgery? What does he think is the cause of the pain? Since your OS already evaluated you for deformities, would a TTT be the only surgery you need?

[Kaputt_Knee]

See if you can get a pain management referral and maybe a second opinion in the UK. Professor Simon Donnell is recognised as being a specialist in the area of Patello-Femoral problems. Here's a link to his profile on KG:

http://www.kneeguru.co.uk/KNEEsurgeon/donnell01/contact.php

Before you do anything you have to get the pain under control, so the first priority is a pain specialist.

[Vickster]

A second opinion in the UK seems sensible before spending many thousands going to the US.

Adrian Wilson is very highly regarded too http://www.kneeguru.co.uk/KNEEsurgeon/wilson02/contact.php

Pain management certainly seems a wise place to start

[jenny1000]

Thanks for the replies.  I actually e-mailed Adrian Wilson just after I posted this - there was a link to the osteotomy page of the hampshire clinic website on here a while ago, which I bookmarked for if I ever needed it.

I have a pain management appointment in March so wondering how that will go.  I don't know what else there is to try to be honest, other than CBT.  I saw a pain management person a few months ago (I posted on here about it because she was terrible) - she suggested that all of my pain was due to depression in my teens, and didn't mention medication/TENS/injections etc, just said that I needed counselling.  She asked my GP to refer me for CBT, which I have been trying to chase up for ages, but I don't think they even read the letter as they claimed that they never received it, then suddenly found it the other day.

Thanks, I'll have a look at Simon Donnell too.

I haven't seen my OS for a couple of months, I'm phoning him next week.  When I last saw him, he just told me to strengthen up and try and get off the tramadol (not possible if I do anything other than lie down all day).  He thought the pain would reduce and that in a year I won't be on any painkillers (I wish!).  I have no idea how I'm supposed to get the pain down.  He thinks the cause was originally the deformities that I have, but the pain has now become exaggerated although he didn't say why.  Reading stuff online it seems like when the pain becomes chronic different nerves change to transmit pain signals when they didn't originally, and other mechanisms like that, sounds like me.  My OS originally recommended a TTT to correct the patella alta and misplaced tibial tubercles.  He said that my rotation is near the threshold but nowhere near horrendous so he won't derotate.

[BoboCat]

Hi Jenny,

I can second any recommendations for Adrian Wilson!  He is considering surgery for potential miserable mal-alignment, patella alta and maltracking even though he accepts that I am in much more pain that my structural problems alone would suggest. Luckily I know what the cause of my "extra" pain is. I have Lyme Disease (and a host of other linked beasties) that set up home in my knees after a tick bite. The bony issues have always been there bothering me infrequently but it wasn't until I got Lyme that they went mental! Apparently they little buggers make for the weakest part of you...ah well.

This is not my way of saying I think you have Lyme...you have certainly not posted any symptoms that are exclusive to the disease (though very few are) but I just want to offer hope that there will be a cause and if you keep pushing you should be able to find it. Do not rely on the doctors to do this for you. Sorry if that sounds harsh but specialists have that title because of their extensive knowledge in a single area...if you want other options it's best to research for yourself (like you have done about the nerve damage) and find someone who works in that area. I went and saw a Naturopath (don't scoff!) and she was the only person who didn't put me into a little "this is your 1 problem" box straight away. She investigated a number of options before giving me a direction to follow, without that I wouldn't be able to walk.

The pain management response that you received sounds pretty generic to me. The people that you deal with there have a limited bag of tricks - which can work exceptionally well for some when applicable - and if you don't fit into their mould you are just sent to a psychologist. I would recommend going through the CBT but please don't feel that if it doesn't work there is no more light at the end of the tunnel. Hopefully the new team will be slightly more constructive. Pain management basically said nothing could be done for me...hmmmm. So I went elsewhere (hence the diagnosis of Lyme).

I have also been told by a Rheumatologist that my "excessive" pain is probably linked to the IBS I supposedly suffered with for 12 years as any long term pain situation makes you more likely to experience an "abnormal pain response". It wasn't actually IBS, I had a serious parasitic infection that the G.I. docs never bothered to test for. Go figure. Again it was the Naturopath who identified a potential other cause for my crippling symptoms.

Has your Rheumatologist tried you on pre-gabalin instead of the gabapentin? I didn't do well on gabapentin but found a little relief when switching to the other...there are also other anti-depressants that help for pain. Citalopram has a fairly good track record if you are thinking of trying another pain modifying medication. Please bear in mind that I'm not a doctor, just someone who has tried a lot of drugs for a number of painful conditions over the years. There are a lot more drug options out there but unfortunately I haven't tried those. 

You may have tried it already but hydrotherapy can be brilliant in these situations. You get to move and loosen any tissue impinged between bones but without the nasty weight bearing pain. If you are going to the Hampshire Clinic do you live anywhere near there? My parents live in Basingstoke so I know of a really good hydrotherapist fairly close (Southampton)

Sorry if this has sounded like a rant against the NHS...it's not. I have issues with private doctors as well 


Hope that Dr Wilson or your current OS can offer you some help! Good luck with the second lot of pain people if you haven't seen them already. Let us know how it goes.

x x x

[jenny1000]

Hi, thanks for your reply, it's very helpful.  I'm seeing Adrian Wilson on 28th of this month so looking forward to seeing what he has to say I've never even heard of Lyme disease, what a nightmare.  I definitely agree with that...I know private ones can be just as bad, the 'knee specialist' at Addenbrooke's that couldn't find what was wrong and very kindly (cough) offered to remove my kneecaps also works for Spire.

My pain management appointment was supposed to be on Wednesday but they rang and cancelled it the day before, good old NHS.  So waiting to hear about that.

That's terrible!  I also got told I had IBS, turns out it was the side effects of being on diclofenac for 3 1/2 years with no omeprazole to protect my stomach.  Also got told that the breathing side effects from them and other NSAIDs was me hyperventilating but anyway!

The rheumatologist only saw me once and referred me to the pain clinic, I'm not seeing him again.  I'll go up to 3600mg of gabapentin in a couple of weeks, if that doesn't help then maybe I should try the pregabalin.  I didn't know citalopram was used for pain, I thought it was just the tricyclic antidepressants.  I was on varying doses of citalopram between 20mg-60mg for depression a while ago and that didn't affect my knees.  I also tried amitriptyline but that didn't help either.

Yes, being in swimming pools feels good, I can stand up and move around without the pain.  My mobility is generally fine, I'm not stiff or anything - I look 'normal' when walking etc, it's just the pain.  The woman who assessed me for a blue badge thought I was lying because I walk really fast, even though I explained that I do that to reduce the amount of time I have to stand up for.  I live in Cambridgeshire, so not near Hampshire - thank you though!

Thanks for the help, I hope things get better for you too - do let me know if you do have surgery and how it goes xxx

[BoboCat]

How did the appointment with Mr Wilson go??

x

[jenny1000]

Hi, it went really well thanks. He thinks I have a very severe case of tendinopathy.  He's sending me for an ultrasound, and if it confirms this diagnosis, referring me to Mark Wotherspoon, the sports therapist person there, for 3 treatments of shockwave therapy.  If this doesn't help, then he said he can do PRP injections, then I could have dry needling and failing all of that, surgery.  So hopefully something helps!  I'm definitely feeling a lot more optimistic as I actually have a diagnosis and treatment plan, unlike ever before.  He's going to see me again after the shockwave treatment to see where to go from there.  I also want to ask him about anything else contributing to the pain like my maltracking, which he didn't mention.  He's also getting the radiologists to measure my TT-TG, I think more out of interest than anything else.   He wants to compare my right to left and also MRI to CT results.
 
How are you?  Do you know if you're having surgery yet? xx

[BoboCat]

That's fantastic news! Well, not the fact that there's something wrong but the fact that you know what it is! I imagine that's a massive weight off. When is your ultrasound?

I've got no more news as I don't see him until I'm back from Australia (2 weeks) and then I'll let you know. I'll also be getting some steroid injections then as a test for whether surgery could help. I still don't know whether I want him to say surgery is necessary or not...on one hand I've feel like I've tried everything else, on the other I'm terrified of being operated on 

I have actually had a vet friend examine my knees whilst I've been away - people are fascinated by how much movement there is of the kneecaps and want to have a poke around - apparently I have a problem that's pretty common in dogs! Or so she says Not sure how to take that but as it's fixable in canines I'm slightly reassured 

Fingers crossed your diagnosis gets confirmed ASAP 

x

[jenny1000]

Yes, definitely I'm very pleased.  Just hope it helps! I've got my ultrasound scan on the 13th April, then the 3 treatments weekly starting on 19th April...amazing how fast you can get treatment when you pay for it!

Wow, hope Australia's good.  I'm supposed to be there but had to cancel as I couldn't fly there or do anything now hopefully in the not too distant future...

Hopefully the injections give you some relief.  Do you know if there are different ways of doing them or if they can be used for tendinopathy?  I had them by a s*** surgeon at addenbrookes but they didn't help.  Yes its good and bad isn't it, I guess it's the uncertainty that's so scary.  When they decided I needed a TTT I was partly pleased as there was actually a treatment, but also really worried it wouldn't help, glad I got (yet) another opinion - thank you.  If you do need it, do you know which procedure/s it could be?

That's strange! Yes, better than saying it's not fixable! Thanks, hope you get a solution too x

[BoboCat]

Australia is lovely but not very "disabled" friendly  As I can't climb steps I need lifting in and out of shops, restaurants etc which is not particularly dignified and the road surface made for painful trips in the wheelchair. I was lucky enough to fly business class (my first time!) and it meant that I was actually quite comfortable. I don't think 24 hours in economy is recommended for us broken ones... Hopefully you'll make it there soon - where are you hoping to go?

I'm not sure about the various ways of injecting the knees but I would imagine that the site of the syringe point is important. It might be worth posting that as a new thread? From what I can gather an anti-inflammatory has the potential to help problems within tendons but potentially the one used previously wasn't a good match for you. I'll try and ask some extra questions when I get mine done and let you know if I find out anything useful.

The procedures that I think I'm looking at are a TTT or a deepening of the trochlea groove. Though I can't be sure...the OS wanted to get all the CT scans back before he discussed detailed surgical options. I think that there are other options for the potential miserable malalignment but I doubt mine is "serious" enough to warrant it. Counting down the days until I find out!!

Good luck on the 13th x