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.