Close to suicide

[RLE]

I've been reading this board for a while. I've noticed when someone has a question they're referred to other posts or doctor's notes and they don't help at all. I've been to 5 doctors and they don't say much except that it was a good thing I had PT for my ligament tear rather than surgery then they recommend more physical therapy. I haven't worked since August and have no money left. My mother is helping me and paying for my insurance. I feel as though I've slipped through the cracks. Some days I feel like I don't exist. I'm 49 and have many more years before I can retire.
I can bend my knee to 126 degrees although it takes 3 hours to do so in the morning in  but I've been able to do that since Oct 10 when I had my MUA so there's no progress at all.. The pain is less than before but my accident was August 21 and it is now January 24 and I've gone back to crutches because I still can't walk. The brace irritates my tendon something fierce.
I had an MUA in October and a lot of PT after that. The last 2 months I've been doing PT in the pool but I think next week is my last week.
The problem is that I can't bend my leg actively (i.e. while walking) only while on my bed slowly. I'm handicapped. I can't sit very long and I can't walk much. I have to push my knee to bend it to sit down.
My friends are pretty much gone-they have their own lives and when I didn't heal quickly they stopped calling or coming around. I only have my mother and she's 76 and not doing all that well. I spend my days alone either reading or watching television. I can't sit long on the computer.
If it wasn't for my mother I'd be homeless and severely handicapped because I wouldn't have the insurance or be able to bend my knee the little I can. I don't know what will happen to me. I'm really alone. I think every day about ending my life. I'm not afraid to do it I"m afraid I'll mess it up and have to live with the consequences. Does anyone else feel like this?

[TwoBadKneesUSA]

What a tough road so far for you.  I would get in touch with your GP and see about some help, some counseling too.  It is very difficult to get through this alone.  I would also look into consulting with an OS that is familiar with arthofibrosis.  It may seem overwhelming to seek yet another doc, but I think it would be to your benefit.  Before you make an appointment ask the office staff if the doc deals with problem cases and if they have worked with patients with extensive scar tissue.  If you don't get good answers politely let them go and call another doc.  It is easy to get depressed with knee problems like this.  Make sure you get some help, there is no shame in it.  Keep doing whatever exercise you can.  We are here for you, you can post anytime.  Most importantly don't give up.

Milly

[debjoe74]

Ler, please go to the hospital. They will get a different dr to look at you. I broke my knee in Aug, still having problems, the meds made my ulcerative colitis flare up, I have hbp, & severe sinus and neuralgia issues in my face from a botched root canal. I am 52 and I was in some very dark places a couple of months ago. I've had sone bad drs who have shown no sympathy, and some compassionate drs. Yes, your friends don't want to deal w/your issues because everyone is consumed w/their own problems. My own sisters stopped helping me after the initial few weeks. But think of your mother. Please go back to the hospital, I don't know you personally, but I care. Deb

[RLE]

Thank you, I do appreciate the responses. The thing is that I was always there when others were really down and now there's no one for me. But that's not the problem and I know it. I do have other health problems that cause pain and my knee is causing my back to go crazy.
I'm so tired of doctors-they're all so awful and I live in the second biggest city in the country so no excuse. I feel like they keep foisting me off on PT's. I've stuck with the same one since August because I think she cares about the outcome but she's also not very nice at times and she gets angry when I can't do things. I remember one day in the pool my knee was in so much pain and it kept sticking-what I didn't understand was that the kneecap was maltracking, it took 40 minutes for it to settle down and I still remember trying to tell her about it and she yelled at me to just do it (she didn't explain what was happening and I felt like a crybaby.)
 I'm a perfectionist so I complain but I push myself to the breaking point. Even the doctors have told me they're shocked that I can bend my knee to 126-that's as a result of 7 hours a day (3 in the am, 1 mid-day and 3 at night) of forcing it to bend no matter how bad the pain is.
The last doctor I saw wanted me to see his PT. She only works twice a week-I wonder how much she cares about her patients and I'm so sick of being ignored.
I saw my optometrist yesterday (I've known her since high school) and she was surprised that I'm still unable to walk after 6 months I think that was what sent me over the edge. She kept looking at me with a worried expression and asking me why.
I'm not officially disabled yet I can't walk and no one seems to be able to help me. I feel like my heart is broken and there's no more doctors left to see (I've been to 5 so far) except Dr. T. in Michigan but I can't travel now. I can't imagine sitting for a 6 hour flight not to mention the airports.
Sorry, I just am at the end of my rope.  I've had a lot of health issues and personal stuff and this is the absolute worst. I had no idea.

[KW]

I'm sorry you are having such a hard time.  Finding the right Doc is really the key right now.  If you are in the 2nd largest city I am guessing that Houston, TX and Dr Mark Sanders (www.sandersclinic.net) would be a little closer then Dr T in Mi..  Personally,  I've never seen Dr Sanders but he is very very well thought of here on the boards and seems to be a very straight shooter when telling patients what is up.  Might be worth a call and sending your films/mri's/ct's to see if he thinks he can help.

Best of luck,
Karen

[missmyknee]

Hi Ler

It's hard to go thru arthrofibrosis , which is a devastating condition. People can't understand this unless they are experiencing this or see a loved one go thru this. Even some loved ones don't understand. Most Drs and PT's have never seen patients who have arthrofiborsis ,so they don't recognize the symptoms to initiate the proper treatment very early. Early recognation and treatment are key to a patient's ability to beat AF. People with AF are bounced around seeing Dr after Dr who incorrectly diagnose, perform incorrect surgeries, and PT's who incorrectly rehab a knee with AF.  I feel for you since I have been battling AF for 11 yrs. Please call your GP , nearest mental health center , ER or suicide help line  1-800-273-8255. There are people who can get you the resources to help you . They care also and often have felt the same hopelessness and know what you are going thru. I urge you to do this for yourself and your mother, who loves and cares for you.

It would help us if you could post the history of your knee problem and surgeries so we can try to help you with arthrofibrosis advice. I don't know how much information you've read or been given. With regards to arthrofibrosis, we do refer everyone to read the section in the information hub about arthrofibrosis. It is probably the most comprehensive amount of information from doctors, research, rehab and patients, on the internet about it. We also have a list of doctors who have extensive knowledge and research on arthrofibrosis. I think all of them have been used by some of the kneegeeks and have been with some level of success.. There are no guarentees of 100% success however there are some kneegeeks who did have 100% with very patient , diligent , long work. Using one of these Dr's on this list will give you the best chance for success. Arthrofibrosis is a condition that takes a long time to see results, oftentimes a patient will experience several setbacks during treatment.

Let us see where we can try to help you

Pam

[kcknee]

I'm sorry that you have been through such a hard time. Please go to a hospital or family doctor or call the hot line and get someone to help you. Even being married I feel like I have been dealing with this mostly by myself. I try to stay strong for my son, you should try to stay strong and keep going for your mother who obviously cares for you a lot.

Remember that doctors are just men & women trained in the medical field. The majority are good people who sincerely want to help, but like any other field, they are each limited by their knowledge, experience, training and skills. When you have a condition that is not considered "ordinary" or "common"  you have to seek out an OS that isn't as limited by one or all of the above for your condition. The link below is for a listing of surgeons with special training or success in arthrofibrosis. You should also read through all the information in the second tab if you haven't already. It's hard to keep retelling your medical history and symptoms over and over again to each doctor you see, but you have to keep trying. Trust me, I know the frustration of not being believed or listened to as you're begging for help. There are OSs out there that can help you, but they're not going to come find you. If you live near any of the AF specialists you might want to get a second opinion from one of them. As a previous poster suggested, if you live near Dr. Mark you may want to see him for a 2nd opinion. I told my husband that if this last surgery doesn't work I am going to Texas with or without his blessing; if Dr. Mark would still help me.

I had the very first OS I saw misread my MRI and my symptoms and discharge me to PT; the PT then discharged me months later because he didn't believe my extension problems and how many hours a day I was working to keep the extension; a second OS correctly diagnosed my ACL tear and removed & replaced my ACL and then operated for the initial compartment syndrome, but he did not believe me when my knee lost extension; after months of shots, bracing and PT, a third OS diagnosed me with AF and removed scar tissue from around my knee and after much begging and pleading to convince him my symptoms were real, operated to try to fix the recurring compartment syndrome twice, but then sent me to random consult after consult and finally a new OS when the compartment syndrome returned yet again; so now I'm with the 4th OS who made me go through more testing and pleading to get this last surgery to try to end the compartment syndrome. All three men who operated are good surgeons, but I've had to beg, plead and argue to be believed for each of the seven surgeries I've had.

http://www.kneeguru.co.uk/KNEEnotes/node/427
http://www.kneeguru.co.uk/KNEEnotes/node/2355

Stay strong and keep fighting for yourself.

Kristin

[missmyknee]

Hi Ler

I found some of your earlier posts. I saw you had posted the city you are in. This helps out on where to direct you. There is a doctor located in Palo Alto named Dr Colin Eakin. He is on our arthrofibrosis list of doctors. He has treated several AF sufferers on this website over the years. He trained under Dr Steadman of Vail Co. You can put his name in the search box to find old posts of those who have seen him . One of his patients was a poster who went by the name hottubpam and more recently, Juneau. Seeing a doctor knowledgeable in arthrofibrosis makes all the difference in the world. You can try sending her a private message. You can also contact Juneau and she also knows how to contact hottubpam also. She found hottubpam very informative in regards to Dr Eakin.

Here is Dr Eakin's info

http://www.pamf.org/sports/staff/eakin.html

Pam

[cbrmedic]

Arthrofibrosis is  is one devastating injury and i know because i have it. It was one of those condition you got to have to know how it feel. Im a really active and athletic  person  and arthrofibrosis really got me depressed, could not work, couldnt walk without limping and couldnt play any sports. I was really frustrated, my recovery was taking so slow, because this was my 2nd ACLR. My first ACLR was a breeze, was able to recover within less 6months. My original OS and physical therapist was not cutting it for me, keeps telling me all the same useless things over and over. Seeing Dr. Eakin changed my life, he took this time explaining what AF was and what my options was. Within in couple of weeks later i had LOA surgery. Within a week since my surgery i felt better already. It been 3 months since my LOA surgery and  7 months since my ACLR surgery, i have almost close to 0 degree extension and 135+ flexion. As of this week i was able to run 3/4 a mile. Im nowhere close to being completely heal and recover but it start and im still fighting. From walking with limp to running a 3/4 a mile is a huge step in my recovery. My goal is get back  to run a 5k race and go back to playin sports. Im hoping you will still want to keep fighting because im still fighting, im tired feeling sorry for myself and depressed. Dr. Eakin is the man, changed my life       

[Stasha83]

Hi Ler

I'm sorry to hear how low you are feeling. You are not alone in battling AF and there are people on this board who do understand what you are going through, I am one of them. Sometimes I just want to have my leg cut off but I know that isn't the answer and I will keep trying to get better.

You have been given lots of good advice, I can only second the suggestions that you need to find an AF speciallist, it really could change your life.

Stasha

[Rennschnecke]

As all the others have said, you are not alone and everyone on this board understands how desperate you can get with AF.  It's crucial that you see someone who can appreciate your problems and has the skills to help you.  Those with a proven track record of helping people with AF will provide you with confidence that they have seen complex cases and have the advanced skills you need to treat your condition.  I don't know the Drs that you will be able to access, but I know that all the Drs mentioned before have been well regarded.  I hope that you will be able to see one of these.

As for your current state of mind, it's really important you discuss this with someone (e.g. helpline or your GP).  I've been attending a group for living with chronic pain.  Everyone with a chronic condition suffers from isolation – people don't understand how things can take a long time.  I'm sure that deep down you don't understand either and can be very unforgiving of yourself.  In the end, your knee is dictating to you what you can and cannot do.  Try to be more compassionate with yourself and seek help from outside.  The contact with others besides your mum with help (hopefully).

I'd also like to make a plea on behalf of your PT.  I'm sure she does care for her patients, but she probably also has other commitments to family or teaching and training which may prevent her from being in clinic full-time.

BTW try to avoid getting your knee into pain; it can just exacerbate matters.  I've learned (the hard way) that working within pain limits, icing often and elevating to minimise swelling is the best way to progress, albeit slowly.  As others elsewhere have said, in this case it is not a case of 'no pain, no gain'.

I hope you can get the immediate support you need and can find the treatment that gets you to a better place in the longer term.

R

[missmyknee]

Hi Ler

CBRmedic just gave a wonderful testimonial about his/her experience with Dr Eakin and his/her battle with AF 

Just to echo Renn's suggestion on a support group for chronic pain, I've been with a pain management doctor once a month, since 2008. Part of this treatment is meeting with the pain psychologist once a month. This affords me the ability to vent my heart out, cry, etc. I have a wonderful pain doc and psychologist. I too have, on several counts, mentioned how I want to amputate my leg. AF can cause feelings that strong.

You might give this consideration as you go thru this AF process.

Pam

[debjoe74]

Ler, these last few posts just reiterates how many people care about you. I hope you are feeling better about your situation. I do know how you feel. Besides my broken knee, I have chronic pain in my facial nerves and especially my teeth. If I take too much Advil, my ulcerative colitis  acts up, and then it's more medication. Just take one day at a time and don't think about tomorrow. Debbie

[RLE]

Thank you for the responses. I appreciate that each person who is also suffering took the time to respond. I will look into the doctors mentioned. My hesitation is that last summer when I did that each doctor had his detractors and it scared me because the one thing all 5 doctors have told me is that I'm very very lucky to not have had surgery. I had a torn medial patellar retinaculum (that holds the kneecap in place) and since I'm missing grooves in my knees it means my knee cap may not be stable. I also had an impact fracture and some other problems. I was told that this can be treated once with physical therapy and if it happens again it'll be surgery but that no doctor will touch my knee like this anyway.
I had an MUA Oct 10 which helped since my knee had locked into place completely straight but have not progressed beyond the 126 degrees and that's slowly and when forced. It doesn't bend enough to walk normally. It's like a rusted door. If I sleep with my leg straight it's is literally 3 hours in the morning to bend it and hold it so that it isn't a total peg leg.
Basically what all the doctors have said is there is nothing they can do and I should go to PT which pre-pool was agony. It was so bad my leg would jump off the bed in spasms.
I need to see a therapist I know that but I am limited to 15 visits per year. I will look into finding a chronic pain group-maybe the hospital has one. My heart hurts so much and I feel so sad. I met a girl in the pool (in her 20's ) who's had two hip surgeries and been out since Aug. like me and the same situation-no place to live, lost her job, lost her savings etc and she's been in a lot of pain the last few weeks. So I know others are going through the same thing. I just feel so isolated. I do need to do something to fix this. I've tried and so far no luck. I will try your suggestions. Thank you for writing.

[aaa]

LER, I hope things will turn around for you soon, hang in there.

I feel concern for your situation, but there are so many posts on this thread,  I wanted to keep it short and highlight what Rennschnecke had said:

BTW try to avoid getting your knee into pain; it can just exacerbate matters.  I've learned (the hard way) that working within pain limits, icing often and elevating to minimise swelling is the best way to progress, albeit slowly.  As others elsewhere have said, in this case it is not a case of 'no pain, no gain'.

Your description of your current PT sounds as if she is not allowing you to avoid pain but rather pushing you to the breaking point of pain?  Is that right?  If so,  this is not acceptable.  I am sure the PT does care about your situation.  But, based on your description it does not sound like she has a firm grasp on how to treat your problem.

[aaa]

Also, about Dr. Teitge I have met him 3 times now travelling from Canada and I have had knee problems for over a decade.

Truly, he is compassionate, kind, thorough with exams, listens and encourages questions, and never seems to be in a hurry ... a remarkable person.  If you can see him, please do.

He was instrumental in getting my surgery covered out of country, as there was nobody in Canada to help me.  He wrote a lengthly letter to a Doctor in Canada (hoping the Canadian OS could perform the surgery), but ultimately Canadian insurance couldn't find anyone to help me, so he will be doing a surgery for me in about a week, Canadian insruance will cover it.

He barely charged me anything for the visits, and first time he must have spent over an hour with me and probably another hour writing up the letter.

Enough about that ... just mentioning my case, to encourage you to see Dr. T if you can.

[Rennschnecke]

Hi Ler

I know that intellectually you know you are not alone, but emotionally it's a different matter.  It sounds as though you really need to have someone to talk to either by phone or face-to-face.  I'd really encourage you to seek someone out who can help.  Sorting out your knee will not be a quick affair (as I'm sure you already realise).

If 5 Drs have said they won't operate at the moment it sounds as though your knee is terribly inflammed, in which case operating may cause you more grief than you are already in (hard to believe, I know).  Without seeing your knee I'd guess that you really need to get whatever swelling you have down and this might help with mobilizing the joint.

I know from what you've written that you are working really hard on moving the joint, but have you tried giving it enough rest?  This may sound really contrary-wise, but if what you're doing isn't helping, change it.  I've found that elevating the knee above hip and heart level while icing with a compression strap for 20 to 30 minutes every 2 hours helped greatly.  Unfortunately, elevating at a lower height isn't as effective.

In the meanwhile, keep your chin up and keep paddling till you find the help you need.

ATB

R

[missmyknee]

Hi LER

I hope you are doing OK and have had a chance to check into the Drs that were suggested for you. Let us know how you are doing. 

Pam

[RLE]

I greatly appreciate all the support. I didn't expect it, I thought everyone would tell me to get over myself. It meant so much to me. I had seen an amazing doctor, Dr. Anderson in Torrance California. A local OS who specializes in knees whose building has been there since I was a child (and I'm 49 now!) A woman I met in PT who was as desperate and depressed as I was told me about him. I went to see him at the beginning of the month and he was so warm and kind and willing to work with me but since he was the 5th doctor I had seen I had no more hope or trust in doctors or physical therapists.

Dr. Anderson wanted me to work with his therapist and I didn't believe she'd be any better and I was in the pool (still excruciating) so I kept going until my therapist got too abusive and rude and I had enough. So last week I went to see the new physical therapist. It's like night and day. She's kind and gentle. She has a PhD in PT and is board certified and she does massage, stretching, gentle manipulation of my knee, elec stim, careful strengthening exercises. The office is calm and quiet and the people who work there are polite and respectful and soft-spoken and there is always one person working directly with each patient. My leg already feels calmer and looser and I have no pain after the therapy (for 5 months I had such severe pain and muscle spasms my leg would jump off the bed when I laid down. It looked possessed. It would swell to 3 times the size) My old PT told me I should be back to normal doing all my old activities and that I shouldn't be on crutches any more. She said when my leg spasmed it was because it was weak and that it was getting better. This new PT told me what others on here have said-that I should take it easy and if it hurts then it's not helping.

She told me that I have scar tissue but that when she feels it it isn't so hard that it is handicapping. She was very careful about what she said and how she said it but basically the problems I'm having are the extreme swelling and the atrophy of my thigh muscles plus tendonitis. She said the muscles in my inner thigh are not working at all and my outer muscles are doing all the work. Before the accident in August I had walked about an hour a day or sometimes more so my legs were not weak. She said that I should start to improve soon and that if that didn't work she'd try something else and if that didn't help, she'd "collaborate" with the doctor. This is the complete opposite of my old PT who told me when I didn't get better that it was my fault and in my head-she used to say that a lot.

The problem was that I did try and find doctors-I went to 5 and all but Dr. Anderson were awful and to try and find a good PT is almost impossible on your own. Many of them work with doctors like mine do. When you aren't feeling well and can't drive it makes it even more difficult. My insurance assigned me a caseworker because I wasn't making any progress and costing them a fortune and she enouraged me to make a formal complaint about the doctor/PT with the insurance company because he's the doctor on call with the hospital (I had a bad experience 12 years ago with another doctor in his group when I broke my foot and he told me not to "baby" it and to force myself to walk on it which I did and it never healed properly) I made a complaint to the hospital and I intend to also do the same with the state medical board and the ins. company.

I also appreciate the doctor names given here I will keep them for future reference. I may need to have surgery to clean up the back of my kneecap. I trust Dr. Anderson's opinion. And I feel like I have hope again. I'm not overly optimistic (the physical therapy I endured for all those months may have further damaged my knee) but I'm not in terrifying pain anymore and I have faith that my new doctor and PT will do everything they can to help me get better. And I'll pick better friends in the future...

[missmyknee]

Hi LER

My heart goes out to you for enduring such cruel PT sessions. That PT needs to be reported for the physical abuse and mental abuse she put you thru. We trust that the medical people who treat us are competent and in our best intrust. We are at our most vulnerability, because of this blind trust. These rotted apples need to be tossed out of the profession. 

I'm glad you have a new PT who has shown you how a real PT behaves and treats a patient. I'm glad you feel confident in your new doctor. If you ever feel the need for additional doctor opinions, now you have the names of 2 excellent doctors to see. Always do your rehab exercises in a pain free zone. When your knee swells , it is having an inflammatory reaction and your knees way of saying ,that was too much and to back off a bit. Make sure you ice down after rehabbing and elevate for swelling. Don't ever let anyone forcefully bend your knee.

I hope you can see progress, once your knee recovers from the brutality it has had, under the other PT. Keep us posted on your progress .

Pam

[TwoBadKneesUSA]

So glad you could find someone to work with you not against you.  It is really tough sometimes.  Many "professionals" have a hard time dealing with cases that are not typical.  Good luck and take it slow and steady.

Milly

[RLE]

I'm sorry to keep bothering everyone with questions but I was wondering, can someone please give me some advice or thoughts, I'm at a loss.

What happened was that when I went to the new PT the first thing she told me was to walk "normally" That's exactly what my old PT said. My stomach started to knot up. I can't lift my knee at all from a sitting position (if I extend it and lift I can) She told me that my quads are badly atrophied (the inner muscles are not working at all) and when I try to bend my knee from a sitting position it's like when you try and open a door that someone's holding from the other side. It doesn't even hurt that much it just moves very very slowly it's like I'm forcing it and it's extremely slow. So if it's weak and won't bend then walking normally is impossible. To walk you need to be able to lift and bend. This PT is much gentler and kinder but when she said that then made me try and walk and told me she'd give me one more week on the crutches I just felt this hopelessness. I was fairly active before and I worked with so much pain with my old PT that some days I felt like I was going to faint or vomit so I'm not being a baby. I just can't do something that my body isn't able to do.
Everything she did seemed fine but I'm confused that her knowing how weak and stiff my leg is, she is telling me to walk normally. Really if I could walk normally I'd no longer need to be in physical therapy. Am I wrong?

 Sunday was my 6 month anniversary since my accident and I can't walk. I did what everyone here said (including my PT) which is to do nothing instead of pushing myself and the burning,itching, inflammation, pain and stiffness are improved but my leg is so weak and stiff still. I don't want to spend another 6 months without progress if this PT is not the right one for me. I'm fighting this terrible depression and hopelessness every day. I'm not sure how to find a good therapist. Since I only have 15 visits per year if I waste too many on finding the therapist I won't have enough left to have counseling.

I looked up Dr. Eakin because he would only be a 45 min. plane ride from me (9 hours driving though) but his site doesn't say anything about arthrofibrosis. There were only two doctors mentioned on this thread: Dr. Eakin and Dr. Sanders. When I tried to find the list of AF specialists all I got was a list of OS in North America. Is there a special list of AF doctors? I find this site difficult to navigate.

Again, sorry to complain. I know everyone here is in the same boat. I did get emails from people who feel the same way and my heart goes out to you.

EDIT: I somehow missed Kcknee's list of AF doctors. And the additional AF link. I just found it. Thank you.

[Rennschnecke]

Hi Ler

I've been away for a while but am now back.  Glad to hear that you've found a PT who is able to work with you.

Re. the instructions to 'walk normally', what is intended is that you try to walk with a normal gait, in other words, you try to go through the motions that you would normally do although you may not put so much weight through the leg because of crutches, your stride length may be shorted because you can't bend you knee enough and you may be going in slow motion because otherwise you'd limp.  Yes, I'm making all these adjustments.

The reason is that if you just move with a limp long enough it's hard to train your body out of it.  The secondary problems that will follow (e.g. back problems) will be punishing.

The PT knows you can't walk fully normally, but probably wants you to try to move as normally as possible.  Only you will know what it takes to achieve that, e.g. walking really slowly, but it'll be good for the PT to know, so please educate her.

I really understand about the depression.  It seems like you really need some emotional support at this time.  Do you know of anyone to contact?

Hope you've found the informal list of AF drs here.  AF is not a speciality for surgeons generally because AF is a complication not a primary condition.  The people listed have either published on the area or people have had good treatment from them Dr Eakin is a key author on treatment AF and many people have reported good outcomes with him.

HTH

R

[prech]

Reading through the encouraging posts warms my heart

LER's new PT might be on to something with re-strengthening the quad muscles to see if that's the culprit behind the flexion deficit.  If Eakin in Palo Alto is too far of a drive, it might be worth it to try locating a Steadman fellow closer to the Los Angeles area.  Refer to this listing here:
http://thesteadmanclinic.com/fellowships.asp

A quick google search shows a former fellow over in Las Vegas (Chad Hanson '09), but perhaps there are others. Eakin is certainly experienced with severe AF cases, and is quite conservative when it comes to indications for surgery.

[missmyknee]

Hi LER

I had a whole thing written for you but the computer gremlins made it disappear 

I was saying that making sure you are walking correct gait is important so you don't place unnatural forces to the patellofemoral joint. Dr Noyes always had me go thru gait training after every surgery. You have to pay attention to each position the knee /heel/foot go thru as it goes thru gait. Styrofoam cups the size that coffee is used for, on the ground in a staggering pattern. Then you go thru contracting the quad, lifting leg, placing heel down first, then thru rest of foot ,lock leg straight ,then pick up leg and repeat. This was done in front of a mirror to make sure you were using correct form. However, if you won't have correct gait if there is scar tissue impeding this movement. Dr Noyes discusses this in part 1 and 2 of his tutorial.

Dr Eakin trained under Dr Steadman. There have been several kneegeeks who used him for their AF treatment. They were very satisfied. Hottubpam, cbrmedic and Juneau to name a few. You can find posts from them using the search box on the website or private message them. Hottubpam is very helpful. We used to have a copy of one of Dr Eakins articles on AF but it is no longer available free, you can only see the abstract now.

Here is a link to all of the AF info in the information HUB

http://www.kneeguru.co.uk/KNEEnotes/taxonomy/term/71

Here is the link to the AF doctors list

http://www.kneeguru.co.uk/KNEEnotes/node/427

Pam

[captainruss]

Hi LER,

My name is Russ and I had a TKR 18 months ago.  I was told that after 29 years on my football damaged knee I needed a TKR.  Six weeks later and I would be good for ten years.  I am on my third surgeon and he has now given up on me.  I have had ten (10) surgeries in this period.  The first doctor thought it was infected.  He did a MUA, no progress.  He went to replace the joint, but cut out scar tissue and closed me.  I am 49 years old and was a USCG Captain doing lunch and dinner cruises in Clearwater Florida before getting stupid and having my knee operated on.

I went to a specialist in Orlando Florida.  He told me my knee was definitely infected, though not one culture grew.  He told me he would remove  my infected joint and take samples from inside my leg bones.  In two weeks after surgery I would know what the infection was and he would give me specific antibiotics.  The cultures never grew and I spent 13 weeks on vancomycin so powerful they put it directly into my heart with a pic line because it would dissolve my veins if put in those.  I spent 6 months with just an antibiotic spacer.  Very painful walking.

April of last year my back doctor goes out on his own.  He did not do my knee because his former practice would not permit him to do revisions.  He has done four surgeries.  I improved each time.  I thought my last surgery would be an arthroscopic to remove scar tissue.  I have 50 degrees of flexion only no matter how hard i try.  I have been on a CPM for months. I tried Dyansplint.  I have done PT every day (5 days a week) for a year. 

My last surgery he removed the scar tissue.  I thought I would be fine with a new joint, I could flex to almost 80 degrees which was a record for me.  I find out just before Christmas that my leg is stiffining up and I thought I was growing scar tissue again.  NO...now I have Heterotropic Ossification.  I am actually growing bone in my soft tissue.  I am down to 40 degrees and severe pain every time I try to stand.  I have to use a walker again to get walking.  He won't do more surgery because he is afraid I might get infected.  The only cure is to cut out the bone and than treat with radiation to stop bone growth.

I am now looking into www.ossur.com because they have bionic prosthetic.  I don't know what else to do besides cutting off my leg and trying something different.  I know how you feel as I have a wife and 3 kids, one in college and have not worked for two years.  I am going banana's....my wife does not know what to do.  My doctor has given up.  I understand what you are going through.

Russ

[RLE]

Russ,
What I have learned in my many experiences with medicine is that it all hinges on finding the right doctors/medical professionals. I can't write on here because it would be off-topic how many serious things I've had that were dismissed by doctors because they either didn't know how to treat it or didn't believe it until I found the right doctor.
There are people on here with incredible knowledge. I hope that some of them will read your post and direct you to a doctor who can help. I'm so sorry for what you're going through. It's different than my problem but believe me, I understand the fear and frustration and sadness and the dark places in your mind. I hope that someone will come up with some ideas for you.
Please keep reading this board and keep posting. I know someone here knows something that can help.

[captainruss]

Ler,

I appreciate your kind words and I do think we have similar situations.  I have found this bulletin board to have more useful information than any other place on earth.  I really had a hard time telling people who have not suffered with this stuff what I am going through.  If they have not experienced AF, they have no frame of reference to comprehend the pain, immobility, and what being out of work actually means.

I just returned from my OS and I know he cares, but he tells me my options are fusing my leg straight to eliminate the pain, living with it the way it is, or having my leg amputated and trying a prosthesis.  I am taking college courses but no one wishes to hire someone with a bad knee.  I limp into a job interview with a walker or crutches and the prospective employer just shakes his head.  With the economy, everyone thinks I will take a fall and try to collect Workman's Comp.

I hope you keep your spirits up.  There must be a reason this is happening to us.  I have not figured out why, but I keep telling myself there is a reason for everything that is going on in my life.  I really was excited before Christmas as I read about Dr. Dellon and denervation.  I then find out that it is cash only.  I can't afford that . 

Well, understand I am thinking about you and hope you find an answer. 

Russ

[RLE]

Russ,
I don't know if you are on disability but you need to be. Then after I believe 2 or 3 years you will be eligible for Medicare which most doctors accept. That way you'll be able to see some specialists. I never ever thought I'd be on disability because I didn't know how bad it could get but if some day I had to then I absolutely would.

There are some wonderful physicians who will take on pro bono patients as well if you write some letters. I have not needed to do this yet with my knee since I'm very lucky to have a good insurance plan but I had the experience in the past when I had no insurance and I know some doctors will help especially if you have something rare and difficult they can use as a training for other doctors or their own research.

Do NOT give up. I would write, or call (or both) all the specialists on the AF list here and even overseas and explain your situation. Don't accept this until you've exhausted all possibilities including as I said, contacting specialists. I know for example that UCLA has a teaching hospital where people with rare conditions and illnesses go and the cost is based on your income. I also know that many people don't post here but they do read and will contact you privately. They have a huge amount of knowledge and they know many doctors. I think you're just starting and there will be a doctor who can help.
If you want to email me I'm going to put my email on my profile (for anyone else as well since I've gotten some extremely kind and supportive messages on here) I will add you to my prayers and I will be thinking about you and hoping for a doctor who will help.
L.

[starpolisher]

LER,
I would have posted much sooner, but have been going through a difficult time since late Oct. with my husband (the only one in our home who is able to get drive any distance and is healthy).  He had some severe health issues and was misdiagnosed and just recently is feeling much better.  I have a 23 year old son with a long, drawn out health problem (which he inherited from me) but mine started later in life.  I am in remission and hoping he will be as well.  So there are two of us who are disabled and my husband.  I am 63, have AF in both my knees after a double tkr in 2005.  I am now on Social Security Disability and before that I was working but used my husband's insurance which was excellent...very expensive but when you have 2 people with chronic health issues we made it our priority.  My job did have both short term and long term disability and finally they got me on social security disability (though I was turned down the first time .... in NY) but I hear they always turn you down the first go round even if you are dying!  It's cruel how they do it just to see if they can discourage you and yet you are in such a precarious situation.  I finally got it when we moved to Indiana. 

LER, I know how you feel!  I have had health problems for much of my life and have been disabled off and on with various health problems.  The first 6 years, living with AF, have been very rough.  I worry about my son.  My husband had to take an early retirement because he is caring for both of us.  I have had some very black moments as I am sure so many of us have.  Chronic pain is terribly hard to live with.  I have been through the loss of both some friends and even family members who are healthy and don't understand why I am so limited.  You need to have emotional support.  I know this is a sensitive topic and we are all different with different paths in life, but prayer has helped me a great deal.  I really had too much of it growing up (very strict mother) and for years I really had nothing to do with God.  I had a wonderful father and aunt who had strong faiths and were so kind and open to all people, but growing up with my mom around all the time was difficult.  I used to be in sales for a long time and traveled a lot.  Once I was in a near plane crash and I couldn't even pray.  After that experience, I wanted to have faith....the kind like my dad and my aunt had.  I think we each have our way and I would never say there is only one way to God(as my mother did).  But I did find when I sought God (and it took time, at least for me) and began praying, my life did change and I was given the gift of faith.  It has been faith that has kept me going in those dark times.  A relative with cancer told me she envied people with faith; she was healthy all her life and her family was not "religious."  She didn't know how to "get" faith.  She said she walked into many churches synagogs, etc. and felt nothing.  I told her I had to ask for it and did she try that?  No she hadn't.  We don't live close by and we email, but I have noticed she mentions God much more often.  Perhaps she asked for faith for it is a gift, even more precious than health, but it took me years to realize that.  It keeps me going.  When I get careless, I lose that strength and life seems much more of a struggle.  I know I am not strong enough to get through all this by myself; I need God to help me get through this....God has to do it for me.  I hope I don't offend anyone.

I had severe pain with my AF and it was just this past May of 2011 that I learned about Astym and it reduced my pain a great deal.  It was agonizing to get out of bed and use the bathroom!  I dreaded getting on my feet....always in so much pain and getting lonelier and lonelier.  No one can really understand what you feel unless they go through it.  It's hard when you have an illness that is rare, like AF is!  I changed doctors and tried different things and would lose hope when something didn't work.  I had some nasty nurses and rehab people in rehab hospitals because I did so poorly compared to so many of the patients.  My second orthopedic told me I had the worst complication in orthopedics and told me many ortho's go a career and don't see a patient with AF!  He did the best he could but nothing helped.  I hear he no longer does knees.....he specializes in hip resurfacing now.  I know he had a patient after me with AF and same thing...he couldn't help her.  I think he was so frustrated.  He genuinely cared.  Every step I take is painful, but it is nowhere near as painful as it was before I had Astym.  I know it's not the answer for everyone but it sure has helped me!  A doctor in Indiana developed it and it is easy to find therapists who use it for scar tissue breakdown.  I had a nurse who would tell me to shut up in a rehab hospital (this was when I had both knees done at the same time) when I would have to get out of bed to go to the bathroom and knock my foot on a wall.  I have had some very cruel and some very kind therapists.  My son doesn't even have a drivers license yet and since I'm on morphine (though I have been able to cut back) I can't drive more than 20 minutes without getting tired. 

It seems you have to fight hard for everything now.  If I get away from my communicating with God, I worry much more....especially about my son.  When I get back on track, I have so much more peace.  I think there are so many people who really care about you on this site, LER!  We are all rooting for you, I'm sure.  I hope that you have some success and life becomes easier.  I can understand your worries.  You do need to find help.....I agree about a support group, counseling, getting help.  There is help out there.....in fact when I was sick with a different illness and no doctor could give me a diagnosis or they were all different, I finally told God I needed to know what I had!  I had an awful reaction to an eye med that night and called my opthalmologist and when I told her what happened she asked if I had other symptoms.  I described everything that was bothering me and she said, "I know what you have; I have the same thing!" and went on to direct me to get help!  I will keep you in my prayers....but I pray for every person with AF.  It is a very difficult illness to have.  I hope that your knowing how much we care about you will lift your spirits a bit and I will pray you find the help you need. 

[captainruss]

I understand...the pain when I try to walk.  Everyone looks at you like you are crazy.  I feel like a whiner.  I feel that I appear weak, yet I have never taken time off in my life.

It really gets tough sometimes.

[starpolisher]

Captain Russ,
Amputation?  You know I always figured if anyone tried that, just think of the scar tissue that would form because bone would be cut!  What about the b2005 one above the amputation?  It doesn't make sense.  I have heard there is phantom pain with amputation.  I tried something called an "elite seat" which Dr. Shelbourne in Indiana had developed with a patient who was an engineer.  It helped straighten my legs to a certain extent and there was some pain improvement, but then we hit a brick road.  When they tried to do exercises (various bikes) to bend my knees, I would lose the progress from the elite seat and was finally told they couldn't see me anymore...nothing left to do.  They did suggest I call the Vail Clinic and ask and they requested my xrays.  Then they called and said they couldn't arthroscopically remove my scar tissue with implants....only without.  They were afraid of making the scar tissue worse, causing infection, or damaging my implants (which are long revisions in both legs).  My pt who does my astym (best pain relief I have had though I am still disabled but I CAN do more!) is now going to try to get my legs straighter.  A rep from Dynasplint was in today to see if the one that improves extension would help me.  There is no way I'm wearing them (since I need two) for 6 to 8 hours at a time!  I could never sleep.  I had tried their flex equipment in 2005 and was in agony!  Everything hurt!  And this was only four months after my first double tkr.  I felt as if I were being tortured.  I wish they could find a method to soften scar tissue!  I do about an hour's worth of knee exercises a day to try to remain as pliable as possible.  I think if you have RSD or other complications, Astym won't help......but for straightforward AF, it really provides enormous pain relief in me.  I was able to cut back on my morphine!  If you have never taken time off of your life, you are one courageous person, captainruss.  I couldn't do it!  I lost my cartilage not from arthritis or an injury but years ago had Graves Disease (in my early 20's ) and a side effect was developing a lot of fluid in both my knees.  The internist sent me to an orthopedic who would drain my knees and inject them with cortisone.  No sooner would I leave his office and the knees would fill up with fluid again.  He drained and injected so much cortisone over a period of months and the cortisone really destroyed my cartilage over time.  My knees creaked from then on and, in my 50's, had to have the double tkr.  I think I have avoided complications because I have not had the amount of surgeries as so many seem to have had.  A total of 5 on 2 knees...3 on one and 2 on the other.   

[captainruss]

Star,

The sad part is I had zero AF 2 years ago.  I did not have a knee cap from age 17 and endured bone on bone, but I was working every day as a lead Captain.  Basically, they hire us for our mechanical knowledge and we get to drive the boat twice a day (dinner and lunch cruises).  I spent the rest of my 12 hours a day working on the boat/management/hiring/firing/  etc.  I had 6 wks of vacation saved up so I let them do a TKR 2 years ago....6 wks off work and no more pain for the next 10 years or so the brochure promised.

I was swollen and hot a week after surgery.  MUA...multiple TKR's with 3 OS because they thought I was infected despite not 1 of 100 or so cultures not growing.  My last OS after I brought him info for THIS site finally agreed it was not infection and put my knee back together.  The scar tissue was so thick he had to go back in for open surgery to cut it out because of the implants. 

He thought that the scar tissue grows because I was not doing aggressive PT right after surgery so I was on a CPM in the recovery room and doing PT with staples still in my knee the day I was released from the hospital.  50 aggressive PT sessions and now I have bone growth in the scar tissue.

I don't like the thought of asking my wife to cuddle up to my stumpy leg, not that I am much fun anymore as it is.  I HAVE to find a way to get to work.  I can't live on disability and I can't put my 3 kids through college on disability.  At least with amputation I would be back to work in 6 months to a year.  I can't find anyone that tells me they have been cured from AF.

I am going to make a patient out of the next OS that tells me I need to live like this.  I am 48 years old.  My wife and I planned to travel across the planet after the kids are out of college.  I have spent our savings and 401k in the last 2 years.  I now can't stand the pain, limp around like a crippled grouch, have no funds to travel to Dr. Noyes or Dr. Woltjys, and no money to get second opinions.

Aliens captured all of the AF specialists in Florida as we have NONE!  Sorry about the diatribe....but not my day to beat the dog (she usually does not mind) so I am a little stressed!

Russ

[starpolisher]

Russ,
I was doing PT after 5 days in the hospital after my first operation (double tkr) and had to stand the very next day.....OUCH!  Childbirth is a walk in the park.  I went to rehab hospitals after every surgery and had to do lots of pt with staples in me as well.  It's not the staples that hurt.....it's the darned healing and then our having AF......I was always the flunkie in the rehab and some of those PT's were NOT very nice.  some made me feel as if I weren't trying hard enough!  I got lectures!  I have panic disorder (runs in my family) and one of my symptoms is my skin feels like it's on fire.  After the first surgery (the double tkr), the pain was so horrific, I could not sleep more than 2 hours a night!  Ambien did nothing......They finally had me laying on bags of ice for the burning pain.  Panic disorder runs in my family.  I have had health problems my entire life....as does my son.  But I hope and pray that he won't have all the other complications I developed.  He sure as heck won't have any tkr's!  He's been too sick to do athletics since 7th grade and before that he had very bad allergies which (with the exception of food allergies) limited him until the steroid inhalers came out.  His panic disorder hit at age 13 and he stopped growing!  He was 5'5" at that age and never grew an inch after that.  He matured, but didn't grow.  He's had a very rough life for a kid.....and yet he's a genius....169 IQ.  None of my brothers got it but my Dad had a more minor case of it though his Dad developed a severe case and his Dad also died early.  It's iin our DNA.....while our panic attacks are controlled, there are so many other complications involved that few doctors know about.  It's amazing how little doctors know!!!  Hey, you can rant and rave all you want......you need to get it out of your system.  Honestly, prayer really does help me.....speaking of which....I should do that now before I fall asleep.  God bless you and everyone with AF and please God, let someone find a cure!

[Rennschnecke]

Hi Russ,

It is possible to overcome AF but it really depends on how it was caused.  I managed to get full ROM back, but I think that my scarring was due to over-enthusiastic rehab post-op.  However, I can't think of much to handle my neuromas.

If you have primary AF then there is very little you can do and although Drs can classify it, they don't seem to understand it well enough to treat.  Research into the causes of this are still underway so a reliable cure is not even on the horizon yet.

I've tried Vitalzym to see if it would help.  Maybe it did, maybe it didn't.  It's been hard to tel as I did have pretty much full ROM so any changes since then may have been due to the supplement or may have been part of the natural process of recovery.  I worked out how much to take and the duration for scar tissue and stopped after the supply ran out at least 3 months after starting.  The only difference I can discern is my digestive system is more delicate.  I used to be able to eat anything with Vitalzym, but now have stomach cramps with cold cereals ...

The despair you're feeling is normal.  There is the weight of expectation and the knowledge that you're limited in what you can honestly commit to, then there is the fear of the future.

I'm not sure whether amputation is a solution – as Starpolisher says, there is the phenomenon of 'phantom limb' pain.  Ideally you need good counselling about the options so that you can make a decision you won't later regret.

To save the dog, have you thought of getting a speed ball?

[captainruss]

LOL....

The dog is a long story.  My wife teaches taekwondo and has a school.  We had a student bring a box of puppies.  I said NO to the mutts every day, but I had a doctors appointment on a Friday and the smallest, noisiest runt of the litter ended up at my house.....tells you who runs our domain after 25 years!  Anyway, she cried incessantly and has separation anxiety....would literally eat a piece of furniture if we left her home too long.....she was hit by a car and I was going to shoot her...I thought she had internal bleeding....Sissy Russ could not do it and $1000 later her separated shoulder and broken jaw were fixed.  She had to wear a pink cast for 8 wks...so I had to carry her outside 4 times a day to potty and feed her liquids for the broken jaw...needless to say....even after surgery when she needs to go out at night, the only one she comes to is me.  I hobble out of bed and take her out. 

She is so funny....she leaves me alone the first week I am home...but after that she follows me from room to room....sits on a chair next to me at dinner.

I don't beat the dog....but somehow I don't think she would complain.  The other three females (wife and 2 daughters) are 2nd degree black belts.