manipulation for arthrofibrosis

[Treeburn]

Hey Treeburn,

I hear and feel your frustration!  Mine all started with a simple meniscus tear from doing a gym class.  I was very fit and active and was told I'd be back on my feet in a couple of days and back to running/jumping in 6 weeks.  6 months and 6 procedures later I'm stuck in bed with severe pain and a knee that's continuing to lose ROM.  It should have been easy!!!! 

It will be interesting to see what they find when they have a look in your knee.  Hopefully it is something simple to fix (compared to what you've gone through) and your rehabilitation goes smoothly and quickly.  I haven't got any suggestions for you, sorry.

I had a big rehab day yesterday with physio and hydro.  With lots of help my ROM was 28-77.  My pain was incredible!  Also feeling sick and doped from meds. 

Really struggling today.....  I can't even get my knee to 70.  I'm working so hard, living with pain and sickness and my ROM is going backwards.  HELP!  any ideas?

The one positive is that I'm getting really good at sudukos while I'm on the CPM machine.
 

Better go do some wall slides andmirror work
Kaddydee

Hi! Man I feel like we are in the same body! I had my surgery last wek and my knee was a mess! 2 hours of surgery. The scar tissue was wrapped around my acl and all my joints. The OS still does not have an answer for the severe,I mean severe pain in my medial side. I have the PCM and a dyna splint. I am in more pain the. Ever. I swear nothing works anymore. I would luv to chat as it seems we are going through the same thing. I have lost everything because of this and as I said the worst part is my other knee was the bad one and has a third torn acl. So far, thank goodness, it is holding up. I made the dumbest mistake and went to store without crutches. Almost fell on my face.

[Kaddydee]

Hey Treeburn

WOW!  A 2 hour operation for scar removal - that's impressive.  It will be interesting to see how long mine takes if the OS ever decides to risk it.  I'm sure I've got scar tissue wrapped around all sorts of ligaments and tendons as well.  Even the slightest knee bend feels like I'm pulling against a tight rubber band. 

Sorry to hear about the continued pain.  One thing I've discovered during this process is there are many different types of pain - burning pain, stabbing pains, shooting pain, screaming pain, dull aches etc.  At the moment I have a continual burning pain below my patella and then occassional shooting pains starting on the medial side.  I'm used to the burning pain but the shooting medial pain is a new one.  Nothing seems to set it off - sometimes I'll be sitting, sometimes walking - different every time.  It can last between 5- 30 minutes and then disappears. What sort of pain is your medial pain?

What sort of rehab are you doing now?  I know you mentioned PCM/CPM and dyna splint - how long?  what other physio exercises?  are you seeing a physio?

My knee continues to go backwards.  I can't wait to see the OS on Monday and discuss the next plans. I know that nothing will happen until the new year but it's just nice to know there is a plan - somthing new to hope for.

Take it easy - you've had a big surgery so be kind to yourself.  Work hard with the CPM and dynasplint and hopefully you will see a big improvement.  And, if you ever need to vent, you know that there are lots of people on KG's that are willing to listen.

One more thing - who did your surgery?

Kaddydee

[Treeburn]

Hi! I am in califonia, so we are a bit of a distance from one another. They seem to take better care of you over ther. They do not keep us in a hospital at all. I went home that same day. My pain is everything you can imagine! I start pt tomorrow. Three times a week. I have to sleep with this splint on and it is really uncomfortable. This is so frustrating. I have been right every time with my knee issues. I am also a woman's basketball coach simi know a lot about knees aside from. Y nine surgeries on my other knee. Everybtime I have told them something g is wrong they don't believe me because it makes them look bad and then they go in and my knee is a mess. I had a dr. Tell me that OS don't like to believe you are in pain because then they feel like they failed. I thought that was really interesting. OS are usually athletes and have healthy egos in my experience. I am typing on my iPad so sorry for any typos. Ttyl

[Decruz]

Dear Kaddydee,
for what you posted here I feel your getting wrong treatments from the very begin.
As far as I know a manipulation itself is non sensed, you first scope the knee removing scar tissues and, if necessary, you get a manipulation AFTER it (not necessarily immediately after the arthroscopy but even weeks later).
It's a enormous risk a manipulation itself: first in terms of possible fractures, then in terms of capsule stress and thickening/fibrotic reaction that lead to further ROM restriction.
If you've scar tissues they have to be surgically removed, at least it worth to try - then if your body will keep reforming them, well, it's a big problem.
Forcing a knee manipulation under anesthesia itself it's almost suicidal, IMHO.
Bye

[nwc07]

I agree with Decruz.  I did not develop AF until I had a MUA.  Instead of scope followed by a "gentle" MUA,  I was given a MUA followed by scope.   Big mistake..  This was my first ever "procedure" on my knee.

[Kaddydee]

I totally agree with you both!

After all my AF reading I urged my surgeon to do the scope first but he was too scared because I have reacted badly to surgery in the past.  Last time, after a simple scope, I had a month in hospital with CRPS symptoms - severe pain and sensitivity.  My physio, parents and husband all agreed with the OS that they'd rather try the manipulation than risk having me react so badly again.  I was the only one that wanted the LOA.

So, here I am, disappointed but not suprised by the results of the manipulation - pain and continued restricted movement.  I just feel like I've wasted my time, energy and gone through lots of pain for no results.  I'm really frustrated!  Bring on procedure no 7!

On another topic, have any of you had BOTOX treatment for arthrofibrosis?  I have lots of scar tissue but I also have very tight muscles and my physio is looking into Botox treatment.  We have read a couple of articles about botox and arthrofibrosis but wondered if anyone had experienced it.

That's all from me,

Kaddydee

[Kaddydee]

I did an interesting thing with my physio today that I wanted to share....

While I was doing squats I put one leg on some scales and the other foot on a telephone book (the same height).  I squatted as I normally do, feeling even weight through both feet and was shocked to discover that my bad leg was only pushing down 10kg on the scales.  That means that my good leg was pushing 45kg (Yes, I'm 55kg).  My physio challenged me to even it up by putting 25kg of weight on the scales with my bad leg.  To do this I felt like I was having to push 10 times as hard through that leg as my good leg.  It was a really strange feeling - I felt so lopsided but the scales don't lie.  After a while I got used to pushing down but it was even harder standing up keeping the 25kg in my bad leg.  My legs fatigued very quickly. 

We then tried the same thing going from a seated position to standing up trying to keep the weight even.  Once again I was shocked at how I am favouring my good leg without even being aware of it. Even standing still with weight evenly distrubuted, I found that my right had 15 kg more than my left leg.


So this is my new homework - I'll start with 5 sets of 5 a day and slowly increase. Hope this is useful to some of you

Kaddydee

[Kaddydee]

Augghhhhhh!!!!!!  Grumble grumble!!!!!

I've just come home from my hospital visit and I'm feeling pretty down and frustrated.  My surgeon was away so I only saw the registrar (no suprises).  He's a lovely guy but with a knee as bad as this I really need to see the OS.

I showed him the letter from my PT saying that physio isn't making a difference and that more aggressive treatment is needed.  When he asked me what 'aggressive' meant I said that I think she meant surgery.  Well, straight away he said "We can't do that.  That wouldn't work.  You react too badly" etc.  I tried nicely (I'm a very quiet and calm person) to question him and got the same response so then I started my speech....sometimes forceful, sometimes crying (hopeless).  I told him that I think I have infrapatellar contracture syndrome and patella infera (hopefully, only early stages), I gave him the reasons I think that, I told him why I need surgery and that I'm scared that if we wait too long my patella tendon will be permanently shortened and the back of my patella will be damaged. 
He didn't disagree but he said "debridement is a huge operation and you reacted so badly to a small operation, you're likely to be worse off.  I just don't think it's a good idea.  You're just a really tricky case".  Once again I was as forceful as I could be and replied that I'd rather risk surgery and the possible complications than live like this with the risk of permanent patella and patella tendon damage.
So, finally he did an examination and found my knee to be extremely stiff for him to move (no pain just an end point) and he found my patella didn't move at all when I bent and straightened my knee.  Finally, he started taking me seriously.  He said that he has seen one other case like this with another surgeon and they did an open debridement which worked.   He said that I'll come back in January and we'll look at surgery in the New Year.  My surgeon will be at the next appointment.

So, not feeling very confident at all.  I'm thankful that he listened to me, that he examined my knee and would consider surgery but not confident that he's only seen one before!  It may be different with my surgeon but I doubt it.  I would love to see another OS but I've got no idea who to try here in Brisbane.  I've researched  but not coming up with any names.

So, that's my morning....I'm glad I'd done all the research and that I was prepared otherwise nothing would of happened.  As it is I've got to sit around until the 21 Jan and then hopefully my surgeon will commit to surgery.

Hope you are all doing OK,

Kaddydee

[Decruz]

Are u seeing a knee AF specialist?

[Kaddydee]

No - I wish!
We are struggling to find AF specialists here is Australia.  Merv Cross (Sydney) has retired and there are no other names recommended.  There is another KG trying to locate AF specialists here and we have a couple of names to try - people who have presented papers on AF. 
I have looked up over 30 OS's here in Brisbane and can't find any with an interest in AF.

It would be nice to be in America or England and have those specialist nearby.
I will start phoning/emailing around and see what I come up with.

K

[missmyknee]

Kaddydee

Even though he is retired, you might give Dr Cross's office a call. They have other doctors in the practice who might know how to treat AF or they might be able to recommend someone. Sometimes when an AF doc has other Drs in the practice, one of them might know how to treat AF.

It's worth a try.

Pam

[Decruz]

Kaddydee

Even though he is retired, you might give Dr Cross's office a call. They have other doctors in the practice who might know how to treat AF or they might be able to recommend someone. Sometimes when an AF doc has other Drs in the practice, one of them might know how to treat AF.

It's worth a try.

Pam

I agree with Pam - and you should also consider to e-mail/mail recent x-rays + MRI + medical history to some of the most famous knee AF experts in USA (here's the list: http://www.kneeguru.co.uk/KNEEnotes/node/427).
You just e-mail their assistants first, then mail them the CD's copies and they'll let you know in a couple of weeks what they think about the whole thing, and if they suggest a visit in person...well, it's an idea you could consider.
I know it sounds crazy, expensive, etc. - it did to me too in the 1st place - but your knee is priceless, and above all the more you delay consulting a real expert (or 2-3, even better) the more it'll cost you in terms of disability, impossibility to resume work, money for wrong treatments, etc. anyway.
No guarantess they can help you, but it's the best and only possible choice.
Trust me, I know the matter very well.
Bye

[Kaddydee]

Thanks Pam and Decruz,

You have given me the push I needed to be more proactive.  I have emailed 3 surgeons in Australia that have had some experience in AF.  They all work a fair way away but I am willing to travel to make this knee better.  My husband said today that if someone said they could heal my knee for $50 000 then that would be a great investment for the future.  Hopefully, we don't have to spend anywhere near that amount of money but it is good to know that he is willing to spend that amount of money on getting me back to being semi-normal/normal.

Now, I play the waiting game......see how the OS's respond.  I'm fully aware that this is the time of year that most OS's have holidays so everything could get delayed.  If I don't hear anything positive then I will try the American specialists.

Kaddydee

[Decruz]

I don't think you've a clear idea of the surgeries cost, at least in U.S.
$ 50.000 (U.S. dollars) is way over the cost of a surgery + PT for long time there.
I know directly about prices, I can tell you they all have special prices for patient coming from abroad without insurance.
I was proposed by many different surgeons offices/facilities estimated for AF surgery starting from $ 7000 up to $ 28000.
I know for sure you can stay in the middle of the above indicated range of price with the very top care of top experts.
PT could vary a lot from $ 40-50 per session up to $ 300 per session; again it depends facility to facility

So, flying to see a a couple of top U.S. specialists could cost you around to $ 2500 (flights, hotel, visits, connections, eating out, etc.) per person (staying there for the days that are necessary, like 3-4) but then you'll have a complete overview.
It's easy planning a visit one day with a specialist and the day after with another one just taking a connecting flight in the meantime - I've done it myself.

Then in case of surgery there with top experts in top facilities with PT dept. aggregated you could spend around additional $15000 + $ XXXX for the PT there for weeks before leaving (you can't leave few days after the surgery, not even 1-2 weeks later, the flight is too long and you need PT specifically trained in dealing with AF as well, or you'll screw the surgery performed by a surgeon skilled in dealing with AF).
It's realistic considering a period of 4-6 weeks there post-op, then if everything goes very well you could anticipate your flight back home (but you have to arrange a PT solution on your town prior to the surgery, as usually no PT kows how to deal with AF, so you've to find a PT facility in your town with PTs ready to follow the istructions you'll be given post-op, in case you unfdergo surgery in U.S. or wherever else).
You see yourself it's not close to $ 50000, even including the hotel/apartment for rent for the whole period of staying.
I've experience in U.S. only with surgeries for AF so I can't tell about surgeries' cost in EU coutries, I just know there're few expert in Germany and U.K. too.

There are 2 main streams: the conservative approach and the more aggressive one, you should see 2 experts one from each side to get the best overview (I STRONGLY recommend the conservative approach).
Hope this helps.
Bye

PS: no guarantees this will fix your knee, NOBODY can guarantee this, the surgeon who said the opposite is a liar or an incompetent. NO money can guarantee you to recover. U can just put yourself in the hands of an experts, possibly on the conservative side to avoid disasters and worsening

[Kaddydee]

You read my mind, Decruz.  I had been thinking it would be good to have an estimate from someone who had travelled - so thanks!
My greatest concern with travelling overseas for sugery is that if I react badly to surgery then I may have many more weeks in hospital/recovery than budgeted for.  For my 1st surgery I was told I would be walking in 2 days - I reacted with severe pain and could only limp by 3 weeks.  For my 2nd surgery (scope) I had 4 weeks in hospital and 3 weeks of hospital care at home.  If that happened O/S I'd be in big trouble!!! 
I'm not dismissing the overseas option but I will have to think long and hard about it.  I've got a young family to care for and I have already spent many thousands on the knee.  I'll see what happens in the next month with OS's here in Australia but in the meantime I'll put together a bit of a plan for USA.

Today I booked an appointment for mid Feb with an OS who did his Fellowship with Merv Cross.  I'm still waiting to hear from the other surgeons I contacted.

Who would you say are the conservative American AF specialists?

Fun and games!
Kaddydee