Could this be Arthrofibrosis?

[khughes1981]

Hi
I have had 3 ops on my right knee.I have had an LR and 2 osteophyte removals.After i got the LR i had a host of problems that started almost immediately after I got it.

I had heavy bleeding into the joint(when the nurse saw it a week later said she had never seen anybody's knee look like that).I was on crutches for a month and was in severe pain with no ROM.After around a month i could walk with difficulty but it was obvious to me there was something moving around stopping me from having any ROM,i was sent for physio.She agreed there was something but managed to move it and eventually i got some ROM.She next wanted to get the quad muscle built up and despite following her instruction to the letter i was feeling absolutely nothing in the quad and the muscle as far as i was concerned was not working.

After her telling me it had to be working as it was impossible for it to be just not working i was sent back to the OS.The knee was a little better but was still giving way and locking.The OS said there was nothing at all wrong with me and told me i didn't have to come back.I wasn't happy with this and went for a second opinion,this OS agreed with me and told me i needed surgery.I told this OS about my quad muscle not working and he told me to see how it was after he operated.

I had a large portion of bone removed that was left in from the first surgery and an osteophyte removed,which has since been done again.My knee no longer gives way or locks and i have almost full ROM although it is painfull from about 90.

Thats the good points,my knee is constantly swollen,especially under the kneecap.It is hot to the touch,any weight bearing exercises make it painful in 3 different points around my kneecap.The other thing which frustrates me the most is the fact my quad muscle just will not work.I have complained to 2 OS and 6 physios about this in the last 2 years and they don't seem to have a clue what i am talking about.

I have done as much research as i can about this and from what i have read bleeding into the joint and immobility are the main reasons for arthrofibrosis.Coupled with the fact that the constant instruction from physios to push through the pain that just gets steadily worse with weight bearing exercise and the fact arthrofibrosis has caused other people on this boards quad not to work i think this is what's wrong.

I only know what i have read on the net and on these boards as any person i speak to who should know better than me doesn't seem to understand these problems.I know you can't say for definite but if anyone reads this who might be able to tell me more or give any advice i would be grateful.

I live in the Scotland and from what i can find out there doesn't seem to be any arthrofibrosis surgeons in the UK never mind Scotland.

Thanks
Kevin

[Lissa]

Hi Kevin,

I don't know if you have AF or not, however, a person's quad muscle will not work when there is a certain amount of swelling around the knee.  It is the body's defensive mechanism to protect the knee from further damage.   You see, when there is swelling around the knee it sends a signal to the rest of the leg to say, "don't push me to do things that will hurt me".   That signal goes to the quad muscle which will shut itself down until the swelling goes down.   I am surprised that your doctor or the Physical Therapist did not tell you this.   Before I was even diagnosed with AF I had problems with my Quad muscle.   Same thing as you...it just does not work.   

It is the strangest thing when that happens.   I know that when I try to contract my Quad muscle it doesn't work BUT, my "Butt Muscle" will contract instead.   

Good luck getting a good OS to help you with your problem.  I too am still trying to get treated for this horrible condition.

Melissa

[Nick_Knack]

At this point Kevin (a point which many on this site have reached), it is time to relinquish surgeon number one and surgeon number two and pay for a trip to visit to one of the arthrofibrosis 'big dogs' located around the country.  I went from NYC to Indianapolis to be treated by Dr. Shelbourne after seeing many, many surgeons up and down the East. 

Shelbourne understands something more clearly than any other surgeon I have ever  met: That the single most important factor in the long term success and health of your knee is achieving full range of motion or as close to it as possible   Without full range of motion (particulary extension), you will NEVER, NEVER regain full strength or a normally functioning knee.  I say this to you to save you a lot of time w/ aggressive PT and off-putting, arrogant orthos (of which there are plenty).

So, HottupPam has compiled an excellent list of surgeons who have proven experrience in dealing w/ Range Of Motion issues (i.e. arthrofibrosis).  I would not waste too much time and book a trip to go see one of them.  I went to Shelbourne and would go there again in a heartbeat.  The guy is excellent for arthrofibrosis and helping you regain a normally functioning knee. 

I am giving you advice I wished someone had given me years ago.


Nick

[khughes1981]

Thanks Nick

The problem is i live in Scotland in the UK and have no idea how much a trip would cost,i could get a flight no problem but its the costs after that.Scans,surgery etc.Any idea how i would find this out.Should i phone or write a letter,don't know how this works in the US.I'm getting treated by the NHS and we don't get health insurance or anything like that here.If i knew the costs i could get a loan.

Any ideas how i go about finding out the costs?.

[Nick_Knack]

Oh sorry.  Didn't realize you were out of the country.   In that case, I would try contacting/ writing to these guys and seeing who they would recommend in U.K. 

The ortho world is pretty incestuous.  So these guys all know each other internationally.   Shelbourne's website is www.aclmd.com.  And most of the guys on hottuppam's list are available if you do a goodle search.  Write them, email them asking 1) UK recommendations 2) pricing if you would consider coming from out of the country.


Best of Luck,

Nick

[favouritesearcher]

Hi Kevin,

I agree with Nick's suggestion about writing to them (or emailing) to see if they know someone in the UK.

The cost seems to be about $US20,000 (up to $30,000) but it would vary a lot depending on the surgeon, hospital, amount of rehab required, and how many procedures you needed.  The airfare is on top of that, but the $US20,000 should cover accommodation but not scans and equipment hire.  Other things to consider are where the hospital, physio and hotel are situated; if they are a long way apart, you may need to catch taxis or hire a car.  Also the absence of insurance and support if something goes wrong, and the length of the flight home.  And you might spend all that money and still not have the knee you want.

There is also an arthrofibrosis expert in Germany from memory (try searching for "germany" + "arthrofibrosis" and you should find the post(s) which mentioned him.

I live in Australia and went up to visit one of the specialists and got the costs and that sort of thing.  They may get you to contact each of the parties involved to get the costs (eg physio, hospital, surgeon, anaesthetist, etc).

Good luck with finding someone local.

John

[Jaci]

Hello,

John, is it Dr. P Lobenhoffer in Hannover that you are thinking of? I've seen his name in some medical journal articles on arthrofibrosis.

Here's a link to a website with some info on Dr. Lobenhoffer:

http://www.uch-henriettenstiftung.de/en/main.shtml

Jaci

[khughes1981]

Thanks for all the help,i'll e-mail some of them to try and find one in the UK.I've had a look on the net and although there are plenty of surgeons in the UK none seem to have expertise in this.Had a look at the german website(seems promising).

I know the costs are high but as you all probably realise money doesn't mean much to you when you can't do the things you enjoy.

[jeanie]

Hello Kevin,
Sorry you are having a tough time with your knee . There are surgeons in the UK who know a lot about  knees and  arthrofibrosis - it's just difficult to access them because of the way the NHS system is  run.... great in some ways as everyone gets some sort of treatment....... not so great in others ! Anyway I'm in Scotl;and too -  and as it is more than four years since my original injury I have had plenty time to try to track down specialists . Like you I have given serious consideration to going abroad for treatment - and may well do so infuture if necessary - however it is very expensive to go down that road and there are good surgeons closer to home who may be able to help you . Send me a message if you would like some further info 
In the meantime best wishes   

Jeanie

[khughes1981]

Hi Jeanie
I tried sending u a personal message,could you please get in touch if u could help me out with a surgeon nearer to home.If u click on my user name u will get my e-mail address
Thanks
Kevin

[Sore knee for now]

Hi I realise this is a very old post however I'm desperate for some advice. I'm currently living in scotland and suspect I have arthrofibrosis in my right knee following a patellar dislocation 7 months ago my rom is stuck at 90. I would like to get a second opinion from a dr specialising in in knee  arthrofibrosis. I've been searching for a while but have been unsuccessful to locate a surgeon with such expertise in scotland. Please could you give me an idea of the surgeons who ended up helping you.

[missmyknee]

I live in the U.S., but here are 2 names of Drs in the UK.

Dr Glynn Evans has arthrofibrosis experience and it states that in his Bio. A former poster called, Dynamite, used him and had very good results. Here is his link:

http://www.kneeguru.co.uk/KNEEnotes/specialists/knee-surgeon/dr-glyn-evans

Another name to consider is Dr James Hutchinson. He moved to the UK after living in Australia and practicing with Dr Mervin Cross, an arthrofibrosis doc, who has since retired. Here is his website:

http://www.jameshutchinson.info/about.php

It is more difficult to find Drs experienced in treating AF in other parts of the world than the U.S. and getting feedback from patients receiving treatment. Often times all one can go by are, the arthrofibrosis articles published, looking up the Drs who authored the articles, then using one of them. That is how the list of AF Drs in the U.S. started. Posters about 10 yrs ago sought out these Drs, had treatment by them and reported good results or at least someone who knew what and how to treat difficult cases. Using a Dr experienced in treating AF does not automatically guarantee success. AF is not a cookie cutter condition. There are so many factors that go in to each individual case of AF.

I was treated by an AF expert, only by the time I saw that Dr, I was a salvage case. I shattered my leg in a horse back accident. My first OS did not recognize I had AF and thought my knee problem was from a torn meniscus. He did a scope, noted scar tissue on the patella tendon and did NOTHING, he did not remove any scar tissue. It took 1 yr of dealing with all the fractures, which included having to surgically rebreak my leg, to correct my leg from being set crooked, by first OS before I was referred to a local knee specialist. He diagnosed me with the worst condition one can have from AF, patella baja and infrapatellar contracture syndrome. He also knew the correct surgery I needed for that condition and performed it.( At that time, I did not know an AF doctor existed) It improved my ROM greatly, but over the next several months, I redeveloped AF. He did another surgery, a LOA, removed fibrotic fat pad and chondroplasty to patella, from the damage caused by patella baja. After another couple months, I redeveloped it again and that's when I found out about and went to an AF specialist. However, I was a salvage case, by the time I went to the AF expert. I rehabbed along side other AF patients, during each of my surgeries and we all had different elements of treatment and rehab from one another. Some only required one surgery , did the the rehab for it and fully recovered. Some required 2 surgeries and others like myself, have required several surgeries, because of our genetic make up causes excessive amounts of scar tissue to form.

However, an AF Dr gives your knee the best chance to achieve success.

Here is a link discussing possible AF Drs in Europe.

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=56744.0

These are the names I'm aware of , perhaps someone else will see this and post information on a Dr, who could help you.

Pam

[Florencia85]

Hi
I have had 3 ops on my right knee.I have had an LR and 2 osteophyte removals.After i got the LR i had a host of problems that started almost immediately after I got it.

I had heavy bleeding into the joint(when the nurse saw it a week later said she had never seen anybody's knee look like that).I was on crutches for a month and was in severe pain with no ROM.After around a month i could walk with difficulty but it was obvious to me there was something moving around stopping me from having any ROM,i was sent for physio.She agreed there was something but managed to move it and eventually i got some ROM.She next wanted to get the quad muscle built up and despite following her instruction to the letter i was feeling absolutely nothing in the quad and the muscle as far as i was concerned was not working.

After her telling me it had to be working as it was impossible for it to be just not working i was sent back to the OS.The knee was a little better but was still giving way and locking.The OS said there was nothing at all wrong with me and told me i didn't have to come back.I wasn't happy with this and went for a second opinion,this OS agreed with me and told me i needed surgery.I told this OS about my quad muscle not working and he told me to see how it was after he operated.

I had a large portion of bone removed that was left in from the first surgery and an osteophyte removed,which has since been done again.My knee no longer gives way or locks and i have almost full ROM although it is painfull from about 90.

Thats the good points,my knee is constantly swollen,especially under the kneecap.It is hot to the touch,any weight bearing exercises make it painful in 3 different points around my kneecap.The other thing which frustrates me the most is the fact my quad muscle just will not work.I have complained to 2 OS and 6 physios about this in the last 2 years and they don't seem to have a clue what i am talking about.

I have done as much research as i can about this and from what i have read bleeding into the joint and immobility are the main reasons for arthrofibrosis.Coupled with the fact that the constant instruction from physios to push through the pain that just gets steadily worse with weight bearing exercise and the fact arthrofibrosis has caused other people on this boards quad not to work i think this is what's wrong.

I only know what i have read on the net and on these boards as any person i speak to who should know better than me doesn't seem to understand these problems.I know you can't say for definite but if anyone reads this who might be able to tell me more or give any advice i would be grateful.

I live in the Scotland and from what i can find out there doesn't seem to be any arthrofibrosis surgeons in the UK never mind Scotland.

Thanks
Kevin

Hi Kevin. I'm also in Scotland, desperate to find help.