Treatment of arthrofibrosis UK-style

[Rennschnecke]

Saw my chiro yesterday after posting.  He had researched neuromas after I mentioned my neuroma diagnosis.  He suggested I do some homework (which I did into the wee small hours yesterday!).  His homework led him to perform Active Release Technique on the area above the patella.  OUCH!

That area is now softer and the lumps that existed before have diminished.  It's feeling tender though and I need to reduce some of my activity because of its sensitivity.  I've been asked to leave it for a week or two before phoning to discuss and we can then make a follow-up appointment then.  Fine for me.  Think this will work for the suprapatellar pouch adhesions, but wonder about my adhesions below the patella.  The patella is a little contracted and is a little tilted, but I don't think my OS will consider further surgery until I can get the pain under better control.

Ah well!  Bed calls! 

[missmyknee]

Hi Renn

The neuromas multiply from scar tissue snaking around and wrapping around the nerves. That prickly sensation is all part of it. My prickly pain developed into constant needle sticks plus burning, burning flares ups, sensitivity, intense throbbing. Nerve pain takes many forms.  Jaci tried the capscacin cream.

If you ever get to the surgery point, ( I hope not !) makes sure you see a peripheral nerve surgeon. They are skilled in the small nerves of the extremities.

Pam

[Rennschnecke]

Hi Pam

Thanks for explaining the neuroma proliferation.

I'm reliant on the NHS system in the UK as I can't cover the costs of surgery.  (All my problems began when I was in a gap in employment and health insurance cover.)  So I'm reliant on my pain dr and OS to make the right decisions re. referral.

My experience with the pain dept locally has been pretty shabby and I don't have much confidence in them.  It's hard to feel loyalty to them when they keep changing.  It's been far easier to get treatment 150 miles away!  Ahh bless! 

I have confidence in my current OS and feel reassured that he is prepared to look after me for the long term (around 3 years now).  I am prepared to follow his advice on whom to see next if not him.  This is because I have had good experiences of referrals so far. 

I started by asking a colleague who works at the English Institute of Sport who he'd recommend for my knee injury after being discharged locally.  I then got my GP to refer me to him as he was out of area (upset another GP at the practice).  This person was a sports physician so no vested interest in surgery.  He spent around 1.5 h examining me said I seemed fine – had torn my ACL but the knee was more stable than some who had not torn theirs.  Nevertheless he took my films and wanted to discuss my case with others.

About 2 weeks later he emailed me and we discussed the state of my knee and my options for the future.  Basically, he advised surgery based on his discussions with a radiologist and an OS.  He then referred me to an OS.  We discussed this as he wasn't a 'name' at that time.  In the end I decided it was a choice between following my opinion of a person based on paper or trusting my physician and indirectly my colleague.  I decided to trust the people otherwise why did I bother asking?  Turned out the OS had done the physician's own knee.  Trust!

The OS was excellent.  He always spent a lot of time with me and I can recall him getting calls chivvying him up as his patients were all lining up.  Later he even saw me pro bono (he just never charged me ).  As I got beyond his area of core competency (he did microfracture but no other cartilage repair procedures) he referred me on.  Curiously, despite say he wanted me to be closer to home (he was almost 200 miles away), he didn't send me to the closest cartilage repair centre to me which is Stanmore.

Hence I was referred to my current OS.  He has been good to me again.  Consults in clinic have always been thorough (apart from one with his fellow) and he's taken time and care over me.  Again, there has been one time when I was inadvertently called up for surgery but he was uncomfortable about this.  He examined my knee from all angles and in different modes to assess patella baja.  He decided not to operate.  In the meantime the nurses kept hassling him about prepping the next patient for surgery and he kept dismissing them.  In all my examination took over 1.5h and then he decided to try an injection.

I feel that my team have proven themselves to be trustworthy.  I also feel that my trust in my current OS's decisions also reflect indirect trust in all the others who have led to me being treated by him.  This doesn't mean that I don't challenge – I'm a challenging person.  However, I've had a good experince so far and think I'm linked in to a network of people who all know each other and may well have similar approaches to patients.  I've certainly had better treatment by the pain people around my OS than locally.

Anyway, enough of this blurb.  I appreciate the info on the type of surgeon who needs to attend to surgical excision of neuromas and will use this to quiz my OS/Pain dr in the first instance.

TTFN

[Juneau]

Pam's description about Neuroma pain feeling like prickly sensation and stabbing pain, or sometimes throbbing sounds familiar. I have an area close to the medial meniscus which is sometimes very sensitive. I even have to be careful when I ice that I don't irritate it. Nobody has ever been able to tell me what that could be. Wonder if there are some nerves there that are irritated. The general area is always the same but it's not always in exactly the same spot. I am planning to ask my OS when I see him the next time.

One thing that I have found that helps is applying the little Titanium discs by Phiten. I stick one onto where it feels most sensitive and it can stay on for up to a week. They come in packages of 70 discs and that lasts me usually a while. I used to buy them directly from Phiten but it looks like other places including Amazon are selling them now as well.

[missmyknee]

Hi Juneau

Neuromas are often overlooked as a cause of medial and anterior knee pain. Here is an article on neuromatas knee pain. The author cites the technique developed for this procedure by Dr Dellon. Dr Dellon is my peripheral nerve surgeon. Dr Noyes referred me to hiim.

http://www.springerlink.com/content/t0g406883v777736/fulltext.pdf?page=1

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1296949/pdf/jrsocmed00019-0017.pdf

Pam

[Rennschnecke]

I had the opportunity to go skiing at an indoor snow slope on Sunday and perhaps foolishly I did so.  My OS said I could try some easy stuff last year and thought it would be really good for my emotional health.

I'd fumbled around among my old ski boots to find a really soft pair, but after more than 2.5 years they still felt very hard.  I'd decided to go for beginners hire skis and have them set really low (e.g. DIN 3) to ensure they would come off really easily.  The ski tech tried to persuade me to have them set higher as he said they released really easily, but I reassured him that I wasn't going to do anything crazy.  Didn't have any problems in that department.

I started right back at the beginning of the progression.  I did fine until I began to turn.  I found it hard work to keep slowing down and eventually went on to ski on the main slope.  This was easier in that it meant I could use a button drag lift to ascend rather than hang onto a rope tow – never did like those lifts.  I was concerned about the jumps that had been built up, but with half of the slope width taken up by these it was going to be difficult not to feel corralled into a busy area.  As it felt like hard work to slow down, I decided to let the skis run.  That left me with the problem of making sure I could manage my direction.  My colleagues who were doing a course were on hand to witness my first sliding session since 8 December 2008 and they cheered my attempts loudly (the other skiers must have wondered what was up).  However, I'm pretty sure that what I was doing wasn't what my OS had in mind when he said I could do some pottering around.

It was good to be back on skis although I'm concerned I might pay for it in due course.  My knee was aching from the lower half on, affecting the patella tendon and the infrapatellar fat pad region.  I've been icing and working to loosen everything off since then.  There hasn't been any other changes to the knee.  It always did have a tendency to be warm at times.  I certainly haven't had a severe pain reaction which seems good.  I'll just fret about my MACI graft for a while until the bruised feeing dies down.  Ah well, one more step back to normality and probably a major one too.

BTW, still tackling steps one at a time rather than one over the other.  I could do it normally if they are shallow, e.g. less than 4 inches and not too many of them.

Hope others are finding some encouraging things taking place in their lives.

[Rennschnecke]

OK, so it's one year and almost one month since my AIR and LR on my left knee.  I now have to say that all threats of AF are gone.

I've been away for a while partly because I didn't have much to say, but also because I was snowed under with work.   I was so busy that I couldn't even spare time for rehab and had to survive on the minimum of patella mobes for about 1 or 2 weeks.   Despite that I did not lose any mobility.  I think I can safely say that my knee is stable.

I am still working on increasing patella mobility, but I have constraints because of my neuromas.   I saw my OS today, who obligingly gave me another round of injections.  I'd expected to see his pain specialist who is very jolly, but I was intercepted by my OS instead.

He is very optimistic about my recovery.  He thinks I'm right where he'd expect apart from the nerve pain due to neuromas.  I should proceed with my strengthening and also do more skiing as I am able.  What kind of invitation is that! 

I do still get pain from standing for too long (e.g. cooking last night led to pain on waking this morning) and sitting for too long (e.g. in the waiting area at the hospital this morning), but I think it is due mainly to the neuromas rather than the knee.  My OS has said I could have them cut out, but I said I'll be happy to try the injections for a few rounds first.

In the gym (when I get there), I am sliding into the cardio zone on the bike very comfortably.  There is no reaction at the knee so I think I am now ready for strengthening.  I can step on and off a platform of 4 and 1/2 inches, but no proper steps yet.  However, once I'd had my lidocaine injection I could do a one-legged squat of twice the depth of that before the injection, so my inability to do steps may be due to the neuromas.  I am able to bend my legs so that I can sit on the floor etc, so good mobility.

So, in essence I'd say I'm cured of AF.  I really hope that all your others out there will also find a way out of misery. 

[missmyknee]

Hi Renn

Congrats on your 1 yr anniversary and no recurrence of AF.    If you get to the point of having the neuromas resected and decompressed, I highly recommend you have a peripheral nerve surgeon do it, instead of your OS. They have more knowledge of ALL the nerves in the knee and have the surgical techniques. It's like using an AF specialist to treat scar tissue and it's removal over a nonexpert. I had Dr N , who I had the utmost respect for ability, do the work the first time , they came back, even though he cauterized the ends and buried them. When my peripheral nerve surgeon performed surgery, he could see everything Dr N had done and scarred up again.

Just food for thought

Pam

[Rennschnecke]

Hi Pam

I appreciate your thoughts.  I am reliant on the NHS and the constraints that brings.

For the time being I have had good results with injections so far.  I'm also not sure that my OS wants to cut into me again and he may prefer to refer me on (as my first OS did).  I'm one of his special cases so he really wants me to succeed.  He even came in unexpectedly today and scooped up my case when he arrived!

BTW Was Dr S able to improve your outcome?

[missmyknee]

Hi Renn

Dr N got all but one taken care of, then I developed more. The scar tissue continued to wrap around nerves in my knee. I saw Dr Dellon the peripheral nerve surgeon. He took care of many areas. I had areas not only on the medial side from multiple neuromas, but on the lateral side and down near my lateral malleolus, I had compartment syndrome from nerve compression and deep, superficial and common peroneal compressions from other surgeries to the knee and from my leg fractures. He remarked how the nerves were so imbedded by scar tissue. I lived with all that nerve pain too. He said other nerves may need surgery, which they did. Since I had it done in 2008 , I have another branch that needs resecting and I have about 10-12 neuromas that have formed. My PM doc has never seen so many recurrent neuromas.

Currently, I go in every month for 10-12 injections to the neuromas and 2 blocks in the leg.

Pam

[Rennschnecke]

Yikes!  I count myself lucky and am really averse to any more surgery at this point.  I can manage on fewer injections, less frequently and I get bad flare up on a twice weekly basis.  Otherwise, I'm almost fully operational.

Your regime sounds wearing and I really feel for you.

As suggested, I was searching for periperal nerve surgeons in the UK regions I'd be associated with and I came across the website of a pain consultant who had had to give up practise last year because of chronic ill health.  He's the same age as my OS and has Parkinson's disease.  He'd not only completed the requisite training to be an anesthetist, but had also become an osteopath to add further skills to his abilities as a pain management consultant.  It's a sad reminder of our vulnerabilities.

For the time being, I am content with a conservative approach, which I think is right for where I am.  I have 6 months (with the option to bring the appointment forward if I'm in distress) in which to progress.  The way things have gone, I may be back to normal by next year – that's when my disability badge is up for review so that's a goal.

Now to bed...