Close to suicide

[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.