Arthrofibrosis - great threads on the bulletin board

[The_KNEEguru]

Editor note 2023: missmyknee maintained a great blog for many years, pulling together the best of the posts about arthrofibrosis. Now with the change to the new forum these urls have all changed and it is a massive job to find them all, so I have closed that blog and refer you to:

/KNEEnotes/knee-dictionary/arthrofibrosis
/forum/viewforum.php?f=9

KNEEguru

[carolelinda]

I have suffered from arthrofibrosis for 5 years now with NO relief. I find it difficult to believe doctors have not yet come up with some treatment for this daunting problem. Even after an arthroscopy 3 months post op and then a second surgery a year later, the scar tissue returned, even worse than before, despite extended physical therapy, which pretty much proves that further surgery usually does not help if one is prone to scarring. The incision (same incision used 2nd time around) healed up beautifully but inside, another story. I would love to know what's being done to help patients like us.

[starpolisher]

I was referred to a woman who has a Ph.D. in physical therapy by a new friend with scar tissue and lots of arthritis. She uses massage, Astym and "other" equipment. When I called, I spoke with another therapist and she said yes, the doctor has had success with arthrofibrosis. I asked "in the knees?" "Yes" "With implants?" "Yes" She was expecting my call and looking forward to seeing me. Fortunately she takes Medicare (my friend has Medicare). The therapist on the phone was sooooo unusually nice! They go by first names. I asked some other doctors I go to about this group and only heard rave reviews. It is hard to get excited after having this in both knees since 2005 and always getting my hopes up.....Shelbourne did help me straightening my knee with his elite seat. But I have such a hard time bending it! Still on morphine. I told them I was on morphine and would love to get to the point where I don't need it.....want to get off it! Am getting a scooter (through my pain doctor) just for my mental well being so I can get around better and not be so confined. But the very next day (this Wed) I will see the new therapist and will let everyone know how it goes.

[hobsiscool]

I'm on the arthrofibrosis bandwagon...what a horrible disease I guess you'd say. It's essentially ended my athletic career. Prayers to all.

[starpolisher]

I lived with it for 6 years and it's only now....that my pain is greatly reduced and the stiffness is easing. My knees are smaller and the skin, instead of being pulled tightly is loosening up over my knees. Astym is the only thing that has helped me.....I was so disabled...spent much of my time in bed, icing and taking pain meds. It was horrible. I was at the point where no doctor would touch me, afraid of infection, making it worse (more scar tissue) or loosening my revisions. I am just turned 63 and didn't want to live the rest of my life this way. The doctors/therapists who haven't tried Astym on AF without the guidance of Dr. Sevier (who developed it) can be pessimistic, but it's my life and my knees and not one of them could help me. It's been a very long time since I've felt this good. They key is, as Dr. Sevier said to my therapist "Less is more!" I will plateau at some point and then I may need to go once a week every 2 to 3 weeks to stay on top if it...but I don't care.....it beats laying in bed.

[captainruss]

Star,

I hope it goes as well for me as it did for you. I am pushing forward, but must concentrate on my daughter's Kiani's condition primarily. I am arranging to meet Dr. Mark Sanders at his clinic in Dallas. I have not been back to Dallas in 20 years since the wife and I went there following a Elk's Convention. What a find time we all enjoyed!

Looking forward to ASTYM. I sent my CPM back and Fedexing the Dynasplint back tomorrow. I pay weekly rental to be for these pieces.

Must get back to my Government and Psychology homework...learning about memory or the lack thereof....which defines my fried brain pan!

Russ

[starpolisher]

Russ, I had a CPM for a year after my revisions and I never got the ROM I needed and still had so much pain from the scar tissue. I hope with all my heart that your daughter will be fine and you will experience as much pain reduction as I have!!!!!!

[captainruss]

Star,

I am out in front of my daughter's condition. I am NOT saying I know anything, just that I am getting all of the different options discussed prior to an implementation. I have ruined my knee through a lack of knowledge. I am so much worse that if I had no surgery I would be physically better.'

Russ

[MalDad123]

It's going on 4 years now and I think I'm ready to talk about it. I'm the father who was witness to his daughter's career ending surgery. I was her shadow during this whole ordeal, which is still on-going. Our personal experience with AF is something that needs to be shared with ALL. I'm in the process of writing a story about our experience, which should help not only the patient but the doctors, pt's, etc. We have seen four (4) of the top OS in the country regarding our case and have a lot to share. In summary, don't let anyone tell you that AF is in your genes, that you're a 'fibrotic healer'! Sure, there are those who made be prone to scar a little more than others...but AF is something totally different than that scenario. What is AF? It is the body's response to something gone wrong....it's a defensive mechanism that the body uses to speak to the ignorant. So, what can go wrong? A number of things of which I will go into later. What's miraculous is that the body in most cases can overcome the ignorant and still achieve a positive result. However, there are the exceptions that when there's too much for the body to handle and the ignorant can't see or hear what the body is saying, the body does what it has to do: 'releases the Kracken' (AF). At this point, most of the AF cases sound the same; the ignorant get frustrated and blame the patient. Does that sound familiar? Here's where ignorance enters the realm of stupidity. The ignorant's reaction is to work against the body's response, which is the worse thing you can do. You see, the human body is a marvelous machine but has its limitations. When it can't perform all that is going on, it responds in a way that will hopefully slow the ignorant down. If that doesn't work, it amplifies its sympathetic nervous system in hopes to exaggerate the pain so that you'll back off. Have you have heard of RSD (Reflex Sympathetic Dystrophy) or what is now called Complex Regional Pain Syndrome? I'll get into that later as well. What is now taking place is what one would call desperation coupled with frustration. You are now going down the path of no return....

Unfortunately, the best way to treat AF is to prevent the very things that trigger it. In other words, don't get it. How is that? I guess the best way to sum it up is to eliminate the word too. Too tight, too loose, too much, too fast, too much hemarthrosis, etc. You can only hope that the technical aspect of the surgery is performed properly and the post-op care is taken very slowly. There is no need to rush anything at his point. Unfortunately, the ignorant, due to their past experience(s) with AF, feel that they'll be proactive and start movement immediately after surgery in an attempt to prevent something (i.e. AF) from occurring, but are actually promoting its response. So, in nearly all of the cases of AF; it's not you, the patient, that is the cause of the problem....IT'S THE IGNORANT!

[missmyknee]

Hi Dad

I am sorry to hear your daughter has been dealing with this very devastating condition for 4 yrs, to the point her career has ended. To be a parent and watch all of this is gut wrenching, because it is something beyond control. As a parent , you do everything in your power to protect your child and see to it, that their dreams come true.

I hope you have read all the information on arthrofibrosis in the information hub. Here is a link to it. Dr Frank Noyes has written an excellent 12 part tutorial on arthrofibrosis.

http://www.kneeguru.co.uk/KNEEnotes/node/2355

Your daughter's story will be a familiar one among all the posters who come to this website, looking for information on this life changing, devastating condition. You might want to start your own thread about your daughter in this section or go to the information hub and start a blog about your daughter's battle with AF.

Welcome to KNEEguru

Pam

[MalDad123]

Pam,

Thanks for your thoughts and info. We actually visited Noyes as well as Shelbourne. Believe it or not, Andrews performed the initial ACL reconstruction and we eventually ended up with Paulos. Paulos was an integral part of the Andrews institute but is no longer. I'll consider the thread.

Dad

[missmyknee]

Hi Dad

We recently found out from another poster, a couple months ago, that Paulos went back to Utah, were he practiced before.

Pam

[starpolisher]

Dad,

I know how you feel! I have a 23 year old son who has had so many health issues......and they are rare. Actually much of what he has, I've had in the past. We both have a type of panic disorder that is very, very stubborn. I want to scream when I read how easy it is to control! NOT SO! There are a number of types and ours is genetic. We are allergic/sensitive to many medications and a Vitamin D3 treatment his doctor gave him to try to help his exhaustion made him so ill with welts all over his body and a total relapse....he had to drop out of college. He's had health problems since birth but the panic disorder (he got hit with it at 13......I was 21 when I had my first bad case triggered by Graves disease.....it is so miserable and life altering. Most meds only make him feel more ill. sometimes I wonder if my AF is connected.....only because when I took part in a study at Columbia, they found several genes that were faulty and a number of people who have panic disorder with a number of symptoms/health problems in common. For years both he and I have been going to specialists for each, individual problem. The head of the study said we had a highly reactive central nervous system. It does run in my family. My brother has Dupuytens Disease and my ortho has speculated there could be a connection with AF. When you or a family member get a rare condition that doctors have no answers for, it is truly heartbreaking and frustrating. I at least seem to finally be under pretty good control with my panic and hope my son is getting there. I feel for you. The main thing is not to give up. It's hard.....you wonder if they will ever have a normal life, but I've managed to conquer a lot of health problems. Just keep looking for answers! I have gotten over some pretty awful health issues and my son is improving. My Astym treatments at least are helping my AF and I know if I hadn't had them (non existent I think in NY) I would not be walking! I wish I had a photo of my knees before and after my treatments! Hang in there......sometimes you want to give up.....I find I get a lot of strength in prayer. I pray for everyone with this nasty condition.

[ken4971]

Heres my situation:

- medial meniscus surgery Jan25
-2 months of excessive swelling, cruthes, then cane
-left quad wasting, 3cm diff than right
-failed 30 day rehab program, could not engage, too painfull
-can get full extension but flexion stops up at 110
-cortisone injection had no effect
-2nd MRI done july21, shows residual medial meniscus tear still present and now patella tendon is short relative to the patella, i have patella baja
-see OS on Aug 28..... btw, he did not want 2nd MRI done, this was requested by my pain specialist which I had to lobby/sell hard to get ??
- in an 'individualized' physio now, trying to get quad bulk and strenght
- i guess my OS is going to have to go back in and re-do menisectomy, and remove scar tissue build up
any thoughts from anyone, or help???

[missmyknee]

Hi Ken

Where do you live (country and/or state)? You will want to see an OS who has experience with arthrofibrosis /excessive scar tissue or AF for short. If your tendon has showed changes, such as shortening, this can become permanent and will pull the patella low in baja /infera position. This will damage the cartilage on the backside of the patella. Early recognition and treatment is key to giving your knee the best possible outcome for success. I suggest you read the info links referenced in earlier posts on this thread.

If you live in the U.S. ,we have a list of doctors who are experts in AF, with positive feedback from patients who used them.... in the U.K and E.U, the list is smaller and not many that posters have had experience with. Here is the doctor link:

http://www.kneeguru.co.uk/KNEEnotes/primers/whos-who-knee-surgery/whos-who-arthrofibrosis-surgery

Pam