I want your arthrofibrosis success story please!!!

[Jaci]

Ditto on the thermal underwear!!

Several of my surgeries in CO occurred in the fall or early spring. I always tried to time it so I could avoid the cold weather if at all possible. It never quite worked out though. I wore CuddlDuds or silk long underwear and knee high wool snow boarder socks all the time even when the only time I was out in the weather was to get to and from the car for doctor's appt and PT. I live in Southern CA for a reason!

Jaci

[starpolisher]

Heather,
Guess what? I'm originally from Plymouth, Michigan and went to the University of Michigan. I have a brother living in Howell and another in Farmington Hills so I could always stay with one of them if I decide to consult with an OS at U of M since we'll be in Indiana. I hear there is a good OS in Indianapolis and also Bloomington, Indiana ( where Indiana U is and my son is going there...he didn't want to go to U of M!) isn't too far from Cincinatti....maybe 2 hours at most...have to check it out but I believe that Dr. Noyes is there. I am going to keep on doing exercising and not stop like Jaci suggests. I just wonder if I should use a physical therapist as well. Not sure about this. I would want to consult with one of these doctors in these areas since they have been talked about and recommended for people with arthrofibrosis. While I have a brilliant OS, he is not terribly familiar with arthrofibrosis and neither is any doctor in NYC I am convinced!!!!! I actually don't like hot weather and hibernate in the summer but Bloomington is in southern Indiana and hotter....not like the Great Lakes area. I never knew until Jaci told me that you don't really get over arthrofibrosis....you just have to treat it after surgery continually with exercise. I have had a lot of pain. One of the women mentioned about having so many allergies.....my son and I have the same darn thing. Also at the hospital I first went to does no testing before implants just as HSS as does not either. Hospital for Special Surgery (HSS) is usually chosen as the #1 hospital in US for orthopedics but they are behind in arthrofibrosis compared to the Midwest it would seem!

[heather_rae]

Star:
So, you know ALL about the winter wind off the lakes and damp humidity! If you're in the area, look me up. I am a human barometer, but I love this state. Go Blue! We do end up getting all the nasty Canadian and Chicago stuff! I do promise to sled with my kids and snowmoble again someday! This winter may be it. I will probably end up retiring someday in a warmer state, though. My dad lives in Georgia and I absolutely love it there. NYC gets hit pretty hard too sometimes. We live in the country, though so, it's double frigid. Also, Lenawee county is tornado alley.

Good luck with your search for midwest AF docs. I would continue using a PT because they can guide/direct you and monitor progress as needed. You can also have the benefits of their equipment like ultrasound and so on.

My PT works hand in hand with the OS. He is the one who found and advocated to the OS in treatment for patellar maltracking ( I have a J-brace now), foot inversion, patella baja, tendonitis, and restarting the E-stim for my atrophied quads. Bob is the bomb! I just love him! He is working very hard to prevent any further inflammation, thus keeping the scar tissue down. It's inevitable that I do have it, though. I had some major damage and 2 surgeries. The first one was very long as the OS had to go fishing around the knee to find the patella fragments and put it together like a 20 piece puzzle. Scar tissue makes it so tight and rigid that it drives me crazy. It just plain HURTS! Let me know how you do. I'll let you know if Bowen massage therapy helps when I start.

Heather

[ziggy]

Hi

I had a scare last night and ended up having to spend the night in hospital. Has anyone had vascular blockages below knee caused by AF.? My foot went ice cold and could not be warmed up for over 3 hours then the blockage improved and my leg become very hot and red with incredible burning sensation for the next 4 hours and a numbness (more than usual) spread across the inside of my knee which has remained. I have to see a vascular specialist on Monday and they will do various scans to see what is going on.

Just when you think it is as bad as it can get you get another curve ball.(although all the info from all of you is really heart warming and encouraging) I will just have to see what impact this will have on trying to get OS to consider revision instead of arthrodesis. I am really scared to let him know at this stage because I have been working on him to change his mind and dont want to go backwards.

[starpolisher]

Ziggy and Heather, up for pain pill but must go back to bed. Oh my gosh, Ziggy, you poor thing! That sounds HORRIBLE. No Inever heard of what you experienced. The worst I've had is numbness on bottom of foot on bad days or in the AM if I stood much the day before. I sure hope they are researching this darned condition but it being rare doesn't help. Still with more implants being done, I would imagine they see more of this and hope to God they are really seeking answers.

Ziggy.....let us know how you are today! I'll fall asleep praying for you....I seem to fall asleep lately having conversations with God or I should say begging Him to help us.

Heather.....I would love to meet you! My son chose the Midwest because in visiting my family he likes the "wide open spaces" and the "friendly people." Indiana just has the specialties he wants and it's a pretty town too.....though I think Ann Arbor is a great college town. Those were wonderful years. Go Blue is right! You can visit me in the winter where it might be a little warmer! I appreciate this site and your help and just moral support. Back to bed....therapy at noon. Patty (Star is okay too!)

[heather_rae]

Ziggy:

Oh good gracious! It surely waited kind of late in the game to happen. What did the hospital do for you? Blood clots can happen with any surgeries. I've seen it happen quite a bit with hip and knee replacements. Mainly because of the surgery itself, then immobility compounds it. Trying to figure out when your last surgery was. I'm wondering if it was there all along and went undetected. Surely you were monitored closely and circulations checks frequently in post-op. Our patients take post-operative blood thinners and wear anti-embolism hose for a while as a preventative. Did you have any of them? Did they do doppler studies? If you've had numbness, tingling, pallor, pain, weak pulses etc., etc. those are signs of poor circulation. The area that the clot is lodged in becomes swollen, hot and red. AKA thrombophlebitis. Maybe that's been part of the pain problem? If you have any trouble breathing, please go to the hospital immediately. Let us know what they say on Monday. Just be careful, ok?

Star:

I had to go to the torture clinic (ha-ha) today, too. Good news! The hard work is paying off. Left knee officially has flexion at 135 still feels very tight and rigid, though. Right knee is 155, actually 5 degrees more than I thought. I'll start with the new massage therapist on Monday. The OS actually ordered it 3x week. Guess it goes along with PT. Those will be some long days. Massage is 1 hour, then PT about 3. Trying everything I can to ditch scar tissue. Why does your foot go numb? What did you study at U of M and can you eventually return to work? I think they have top-notch programs for almost every career.Your son is smart about Indiana. It's a beautiful place, too. What is he studying? My sis-in-law loved Indiana U. I recently applied for a position at U of M, but I think they want to see a little better functional capacity scores before hiring me. I was kindly told that the light-duty (where I'm at with progress now) positons they have are reserved for employees already working there. I'll get there pretty soon, hopefully. Great tuition reimbursement and lots of other benefits for employees. When are you moving? We live near the Adrian/Blissfield area. I can get to the Indiana border in a little over an hour. My grandma-in-law lives in Reading, MI. Lots of friendly Amish folks out there. The simplicity in their way of life just amazes me.Their hand-made furniture is exquisite! Maybe we can meet up when you move.

Heather!

[starpolisher]

My gosh, Heather, your numbers astound me! the best I ever did with my first operation was 70 for ROM! Then it was downhill. Since I had revisions in both knees, the best I've been for the knee that is healingi is 110 (Feb. surgery) but don't know the latest and don't have a figure for the May knee. 110 is far better than 70! I am amazed that you still have such problems with numbers like that! Why do you think that is? Nerve pain? It hurts me a lot to stand or sit for any lenght of time but it is much better than it was before these revisions. I was allergic to the cement in the first double TKR. Going back to work put a crimp in my progress because I had to sit so long. My scar tissue came back with a vengeance.

I majored in history and journalism and minored in English. I am 60 and graduated in 1971. I didn't want to teach (back then so little was still open to women) but wanted to travel! So I did get a sales job selling industrial plastics and did that for about 13 years and then met my husband moved to NYC. I then worked on editorial staffs of several magazines and really enjoyed it. When I had my son, I quit work and stayed home and took care of him until he was in 6th grade. He has severe food allergies (needs an epi pen) and asthma and I didn't trust anyone to take care of him! I had planned on going back to work about a year earlier but my husband then was diagnosed with a very rare cancer (he is fine now, thank God) and I stayed home longer. I now put together marriage annulment cases for the Catholic Church and find it fascinating and calming. It payed the least amount of money of any of my jobs, but I enjoyed it the most. I am on disability now. I know I need much more physical therapy (according to my surgeon) and I don't have the strength. We will be moving at some point and my son is going into remission with an illness he's had a long time! We had to wait for him to get better and then I got arthrofibrosis in both knees after the double TKR. It has been awfully stressful on our family and mine is mostly in the Midwest and my husband's is very small. All I can say is I have had to rely on God to get me through some very difficult times. I know He has given me the strenth. I had my therapy and am very tired due to the increased pain meds today. I have a wonderful therapist too. He said "you will have this condition but we will do all we can to keep increasing your rom. My Feb. knee is pretty straight but the one done in May has a ways to go. I have a very good pain mgt. doctor. Otherwise I couldn't stand the bending, stretching, pushing, pulling, etc. Until the May knee catches up more to the Feb. knee, he said I am not ready for bicycling, etc. I do have weights on my ankles and he puts those electrodes on my muscles just above the knees and zaps them like crazy and and I raise and lower the knee and squeeze the muscle as tight as I can. Well I better get some coffee and some dinner! My husband and son are at a baseball game right now.

Ziggy, you are in my prayers. Please keep in touch and let us know how you are doing!!!!!!!!!!!!!!!!!Please!!!!!!!!!!!!!!!!!! God bless you and take care of you. Hugs, Patty

[starpolisher]

P.S. Heather, I forgot....you had asked what my son was studying......he also loves history and is a very talented writer. He wants to be a historian and is also going to major in journalism! The difference is he is highly gifted. I studied like a maniac to get into U of M but he is naturally brilliant and mine was hard work! He chose Indiana because they have the largest language dept. in the country....really obscure languages....he has a gift for language. He was studying the Boer Wars and wanted to read some books that were never tranlated from the Cape Dutch and Indiana actually teaches that language. He needs to learn some obscure languages in order to read and research if he's going to be a historian. Also, he believes that a lot of history has been so politically correct now that when he saw his High School history book there was very little on WWII and so much emphasis on areas of history that really were not as important. Indiana has a very good history dept. and I remember how liberal U of M was when I went there. The profs were still teaching history in the more traditional way but I am sure history is an area where you don't want to be penalized if your research and papers are not written as liberally as some of the profs would like.....he just wants to go to a University with an open mind and his research indicated that Indiana was like this in their history dept. I know he did a lot of research on colleges. I was not thrilled when I saw my son's HS history books.....I know this is a sensitive topic and hope I don't offend anyone. I struggled to get traditional male jobs and then did not receive equal pay so I am very sensitive to prejudice.....but I think there is a middle ground and rewriting history does not serve any useful purpose. All of the truth should be taught....including prejudice but I believe his HS went overboard and don't want him to deal with this in his college major. Freedom of ideas and expressing them should be open to everyone and not limited to one side. Boy I got off on a tangent!!!

[heather_rae]

Star:
Where is Ziggy? She hasn't posted back and I'm worried about that blood clot. Hope she's ok! Glad to hear your son's in remission. U of M has always been great in caring for my son's asthma. He sees the director of pediatric pulmonary medicine. How much better can you do!!

I'm quite impressed by your son's dilligence and determination in doing what comes naturally for him. I'm so glad my profession welcomes both genders nowadays. My mother is your age. The 70's were difficult times for women in terms of liberation and equality. I still believe there are hidden inequalities in regards to pay, higher level positions, etc. etc. Fortunately, you have found your calling in working for the church. I feel I am being discriminated against in this "disability" making me unemployable. I bombed my FCE last month. So, I will just keep rehabbing away. My mother says "God sat you down for a reason and don't ask why. He will let you return to your beloved profession when he feels it's time." By the way, people did strange things in the 70's. The PT assistant was talking today about eating raw goldfish back then. WHAT?!?

You may not know this but, you can have good ROM and arthrofibrosis, too. With my injury/surgeries, it's inevitable. You wouldn't think the knee would feel tight/rigid with this much ROM, but it does. End-range pain is still lethal!! The difference is that I still have my own knee. TKR's won't usually get as much. The knee is still larger than the other and feels quite full. To explain it simply, it doesn't move as fluidly as it should like it's caught in an animal trap. I have mild baja (scar tissue) that's pulling the patella down, lateral maltracking/subluxation, a very tight patellar tendon and IT band with tendonitis, and pre-patellar bogginess that the PT associates with scar tissue there as well as behind the knee. The massage therapist can feel it everywhere.

I was forewarned from the beginning about the extent of scar tissue and I would be "dealing with it". My knee was basically cut apart to search for patellar fragments last May. I had a MUA with hardware removal in Sept. 07 (flexion was stuck around 60 degrees) my OR reports mention extensive scar tissue. I have had to work very dilligently and through LOTS of pain to get here, though. Maybe I am stretching it out? Nonetheless, I still have increased pain with walking, sitting for extended time, and especially standing still. It makes me so mad because I can't even get through grocery shopping without having pain and need to sit down. My husband always has to finish it. What's even more nerve wrecking is pain from carrying a gallon of milk. I have pain while standing at the sink doing the dishes! It jacks up when I am standing there brushing my hair and teeth. It keeps me awake at night if I over-do it, too. Sorry, I had to vent there for a minute. Maybe it's my stubborness that forces me to move that leg when I stretch it to bend SOO hard. I say come on, get going. The ROM has to come before you can really do much for strength. I am on my 3rd round of russian E-stim at PT, too. The horse fence jolts that leaves creepy crawlies under your skin. YUP! that's it. The animal trap claws really get the pain going when I tighten those atrophied quads. A little quiver of muscle today, though! Very good, it's gonna work this time! Hope your does, too.

So, I see the OS next week. He has approved a trial of deep tissue massage therapy. I just love this guy. He lets me do whatever I think will help so, we get insurance coverage. How many traditional docs do you know that will write orders for homeopathic medicine! I was injured for 4 days by the first one on the 2nd visit. PT was frazzled by it. We'll see how this one does. The OS said he knows he may end up scoping it to remove that nasty stuff anyway but, is patiently letting me try my way first. What really scares me is that large defect on the articular surface!!! I'm petrified by what can happen because of that...and my future.

love and prayers to Ziggy wherever you are!! Get better soon!

Heather

[starpolisher]

Heather,
I was thinking that Ziggy might have to remain in the hospital for a few days or even more to dissolve this clot. My friend's mother had a clot form from a TKR and was in the hospital for at least a week....maybe more. I was going through one of my surgeries at the same time and honestly can't remember but they won't send you home with a clot! I hope Ziggy is doing okay and she'll be writing us! She could be exhausted and needs to sleep....I'm sure her nerves are shot. I was so lucky to have all those operations, never got off my hormone replacement therapy (it would have triggered my neurological disorder and I would have been very sick for several years!). Never got a clot.....thank God! My surgeons didn't want to have to deal with all that.

U of M hospital has improved. They were always good but I think they are far better now than when I was going there. I got Graves Disease in my senior year of college (autoimmune hyperthyroid condition) and the doctor had me on a huge dose of thyroid medication (unknown to me how dangerous a dose I was on). I had radioactive iodine, was still sick and kept asking him why? Back then, they didn't know about this rare disorder my son and I have (many doctors still don't!) I changed doctors and went to see the top thyroid specialist in Michigan. When I told him how much medication I was on he was sure I was mistaken. Lucky I brought the bottle with me....I think he almost fainted.....he was furious! A few years later I found out from a friend who went into nuclear med. technician that my doctor had his license to practice revoked based on me. That doctor (the outstanding one) was a graduate of Indiana U Medical School. I think the Midwest has some darn good doctors. New York does too but I also believe they sometimes rest on their laurels.

Your mom sounds like a real character....your quotes from her made me laugh! I know there is still definitely prejudice....a long uphill struggle. But things are getting better fortunately. Life in general is unfair.......look at us!

Well I hope dear Ziggy will contact us very, very soon and let us know how she is doing. You sound as crippled as I am! I can't walk, stand, sit without pain. I hate it! Some days it just gets to me so bad! Then I say "I'm taking a pain vacation" and take an extra morphine pill and generally nap. Pain is hard to live with. I hope we will see some strides made in the not too too distant future.

[ziggy]

Hi

Sorry to have worried you I am ok and taking things a little slower for a day or two. I will see the Vascular surgeon on Monday and he will do doppler and dye scans. I am out of hospital thank goodness. They not sure if there was a clot probably could also be scar tissue has started to constrict the vessels. I have a lot of scar tissue outside the joint as well as inside. That is how the peroneal nerve got destroyed the scar tissue basically infiltrated the nerve sheath and strangled 10cm of the nerve fibres. I really hope this is not happening to my blood vessels.

It is almost 4 years since my last surgery on my left leg had a right knee arthroscopy about 2 months ago but that knee is doing ok no AF. My stiffness is still progressing and will probably take the last 15 degrees I have within the next couple of months.

I am impressed with both of you forgetting such good ROM. Are you able to fully extend you legs to 0 as well? I am down to a liittle under 30 Degrees but cannot straighten my leg either. short about 15 degrees. I really take heart at how well you are both doing and am planning to show my OS how well you are doing as proof that there is life after AF and that arthrodesis is not necessarily the only way to go.

[heather_rae]

Ziggy:

Glad you are o.k. and at home. Sometimes you will be released to follow up with a specialist if in no real imminent danger. Please do be careful! Hope they can get to the root of the problem on Monday.

Arthrofibrosis can grow like wild weeds. Several people on this site have had multiple surgeries for it until they finally had relief. Lots of proof for your OS. The skill is in the hands of the OS and your ability to stop mass producing it. A good PT that is familiar in working with AF is crucial. Wish it were dissolvable from the outside. Laser surgery has helped some folks in that it causes less bleeding, thus less "scarring".

My extension has been far better and quicker to improve than the flexion. During the MUA in surgery #2, a 14 degree contracture was also improved. I restarted PT the next day (you have to move quickly on these things) and the inflammation was targeted head on. They key to my returning to 0 was lying face down with the lower leg over the edge of the table while wearing ankle weights. It was also gently pushed down by heavy ice packs during E-stim.

Here are some words for encouagement! I spent the entire last summer in a a thigh to ankle hinged leg brace while on crutches. I thought I was going to die when the OS first unlocked it to 15 degrees!!! I was unable to do a straight leg raise or really get past partial weight bearing until winter. My leg shrunk to the size of my arm. I only had skin hanging around the bones from the glutes to the ankle. It made my mother cry!! I am now doing work hardening exercises in PT. Strength is coming little by little. It is mostly the pain that stops me before I can get to the point of fatiguing the leg. Really trying to work around that. I asked for a magic potion the other day. They just laugh and say you know these thing take time. I have been in PT for one year offically and still faithfully going. Afraid not to! Keep up the good fight there. It's a daily job and regimen for me to stay on the upside. Let us know about Monday. Good luck!

Star:
Do you still have your thyroid? Had a patient once with thyrotoxicosis aka Thyroid Storm. Nasty business! Glad your med errors were corrected before anything serious. Any problems with pregnancy? Mine was slighty overactive when pregnant with my daughter (normal). I had trouble gaining weight and always had ketones in my urine from burning my own fat stores to support her. My vital signs stayed a little elevated. I did o.k., though.

I wish pain meds didn't have the side effect of DROWSINESS! I try to avoid them like the plague as they don't help this kind of pain anyway. Don't really like anything that blocks my mental abilities, but sometimes I do take them if pain is keeping me awake at night. I take alot of hot baths and live with ice packs. Keeps the severe edge off and I try to live with it as best as possible.

Heather

[Janet]

Ziggy: So glad you're okay. What a scare! I hope your vascular doctor says you're in the clear now.

Heather and Patty: I live in Farmington Hills, too, and go to U of M for my OS. It's a small world. I've met with a couple of other people I've "met" on this board. If you ever want to set something up, it's interesting to share stories in person.

Janet

[heather_rae]

Janet:

How are you? Haven't chatted in a while. Did you get my e-mail? I've been gathering my medical records and OR reports. I am waiting for a message back fom Dr. Carpenter? director at UMHS. I may need cartilage repair, as well. If so, I want Regennex injections. I asked what treatment options they offer. U of M won't hire me right now, either. I applied and was shot down because of my silly FCE results! I wanted that job so bad. It was in endoscopy! How much easier could that be?

Finally got brave enough to ask my OS about the damage path in there. He's been saying he can't "fix" the cartilage all along, but did mention a procedure that could be an option with someone else. Guess he was waiting for me to ask how bad it was. Now, I really wish I didn't know. My OR reports from surgery #2 mention extensive scar tissue. I see him again next week so, my next question is whether or not I should do anything with it. He mentioned doing scar tissue debridement, but is letting me try my way first. My flexion is offically... ready... 135!!! kinda makes me question how bad the scar tissue could be. The pain, tightness, pulling/pressure is just the same, though. You're right! PT with a focus on AF prevention is the trick. Don't know how much deep massage therapy will help the other problems, but he wrote the order. Pretty generous! Also, if additional surgery is needed, I want to do it all at once. Sometimes, the more you mess with it, the more you aggravate things. E-stim (restarted 3 weeks ago) is working a little now. 3rd time is a charm. Saw a quiver of contraction and a golf ball sized bump of muscle above the knee returning! YES!!

The River Raisin festival in Blissfield is this weekend. I would ask if you'd like to come with us, but the weather is cruddy. There is a concert somewhere in Toledo tonight, too. I'm just trying to finish the housework. Sometimes it takes me 10 hours to do 3 hours of work!! I've been trying to swim with a kickboard, too. Doing water exercises is much less painful, too. If you're up to it, maybe we can go. There's some great spots out this way. Where's Silver Lake? I have PT and massage M/W/F and am usually free most other days. Can't remember, do you have kids? If you'd like to go, get in touch. See ya!

Heather

[ziggy]

I saw Vascular surgeon today. Seems that all is ok, either a blood clot that broke off (not that likely) or a new development of existing nerve damage (more likely). They did a doppler scan and bllod vessels look ok. I am really glad.

Star - hope you are still showing improvement and that you are coping with the pain.