The WAITING ROOM => Emotional/Spiritual help and encouragement => Topic started by: roze87 on June 14, 2010, 11:53:13 AM

Title: 4 operations, 2 failed acl what now
Post by: roze87 on June 14, 2010, 11:53:13 AM

Hi my story is very long so i will try to keep it minimal. I am 23 yr old female. When I was 17 I had an accident and fell off someone's doorstep. The hospital xrayed me and wrongly advised me i had minor sprain and to walk out of the hospital and exercise my leg. I went back 4 days later where my OS told me I had fractured my femur, tibia, fibula, crushed my patella and torn all my ligaments incl my acl. He took me into emergency surgery where he put my knee back together with a metal rod and screws. This time was very difficult for me as I did not fully understand what was going on and was in hospital for a long time out of it on morphine. I was homeless at the time and had lost my job. I had to stay at a freinds to recover for 3 months. I had no support and my physio was a young man who i only ever saw once. When I could walk i just couldn't wait to get back to my sorting my life out I was never really told how serious it had been.

4 years later I went back to my OS with instability problems. I was having episiodes of knee swell, struggling to walk properly at times etc. He advised me this was because I had no acl. He operated on me-reconstructed acl, and also took the metal work out of my knee as it was no longer needed. After a few weeks of physio, my physio told me I should have been doing things i could not do at all. I could not even get my leg round the bike, and was still relying on crutches and had alot of pain. Eventually puss started to leak out of my scar and i became very ill. I went back to my OS who told me I had infection in the joint and took me in for emergency surgery to take out the infection. Apparantly this is very rare and unlikely to happen. But it did.

The infection had caused alot of muscle wastage and caused the acl graft to fail. I was left with an even weaker knee then before. OS advised I would benefit from a revision acl at some point.

A year and a half later, after hobbling around on my knee I could not take it anymore. I was at uni as a student nurse and was struggling to manage on my feet on placement, for my knee giving out and swelling and not being able to walk the next day. I went back to my OS who has now done a revision acl. He took the graft from my good leg hamstring as the bad one was no longer suitable. The first 3 months were hard but I followed everything the physio's said, and could feel my knee getting stronger by the day. However something must have happened because I am now worse then before the op. I have pain in the back of my knee, my thigh is wasting away before my eyes, even though I am doing alot of strengthening exercises, i am unable to walk properly, i have alot of swelling and it it getting worse by the day. I can feel the arthritis is very bad. I rang OS and i am due to see him tomorrow. I know he is going to be the bearer of bad news.

I have run out of physical and mental stamina to deal with this anymore. My original accident was 7 years ago and i am still paying the price of it. I am 23 year old with osteoarthritis of a 70 year old. I am doing 2 or 3 hours a day of exercises and seem to be getting nowhere. I have lost faith in the health professionals. I have had to drop out of uni to have this operation and I as it stands i am left crippled with a knee that is deteriorating rapidly with time. I feel completely alone. It is severly affecting the quality of my life, i have had to cut my hours at work, am worried i wont make it through uni. I am sure my family and freinds are bored to death of the thought of my knee and is a stress for my boyfriend as he is having to run around after me. I want to be someone who can instill strength in others who are going through similar experience but I am finding it very difficult to hold myself together at the moment with the knowledge things are going to just get worse. I am looking for support i guess
Title: Re: 4 operations, 2 failed acl what now
Post by: vl7007 on June 14, 2010, 03:07:52 PM
Hey rose87,

Kats mum here, saw your post on Alyce today, and decided to check out your one.  It's okay to feel bad about all that has happened.  But remember that today is just a bad day, and tomorrow you will see things in a different light.  At the end of everything you are what keeps you going.  You have been sooo positive so far and have tried to improve your life dispite everything.  I read that you were orignially homeless, and up until recently you managed to return to studing at uni, in hopes to become a nurse and better yourself.  You are truely an inspiration to others, as you are not giving up on helping others less fortunate than yourself.  I admire your spirit and determination.  It's is okay to take a break for the intensity of studying whilst you are dealing with your leg issues.  Whilst my daughter didn't break her legs or have ACL surgeries, she is also having her own demons to deal with, whilst she undergoes her 4th derotational operation in 10 months, I have watched her go up and down, and believe me sometimes it feels like there are no ups.  But every now and then a ray of sunshine happens and I get to see her smile even if it is only short lived, and I know it is worth every bit of pain kat goes through.  Kat and you are similar in that you are both extremely strong and powerful women in your own right, you are trying to help others understand what you are going through, and help educate people in how to live positively.  You are to be commended.  Know that you are thought of and admired around the world, that you have so much to give.  I am here if you wish to vent and need to talk, I will always listen, however there may be times when I am unable to get back to you in a hurry.  It is hard to deal with the continual treatments, and surgeries, but remember that the medical field is trying their best to help you, that they aren't always miracle workers, but they do their best.  My thoughts and prayers are with you tonight. 

Kat's mum Vicki
Title: Re: 4 operations, 2 failed acl what now
Post by: rox59 on June 16, 2010, 03:09:18 AM
Dear Roze-
Has your doctor ever told you to wear a leg brace?  It might help support your knee and help your muscles heal better.  Besides struggling with my own knee break, I had a very bad case of lyme disease years ago.  I was your age, 23 at the time.  It was very debilitating.  I had very bad arthritis from it, to the point that I could hardly do anything.  It also created mental problems and panic attacks.  After 2 years of misery and feeling like a 90 year old, someone finally diagnosed my disease, and I started the long path to being cured.  It took over 5 years to get past it, although I still get lingering arthritis.  I made it through though, and I pray for you that you will too.  I know you feel lonely, but we care!
Title: Re: 4 operations, 2 failed acl what now
Post by: roze87 on June 16, 2010, 12:41:35 PM
Hi thanks so much for your messages. Very helpful. Rox59 - yes I went out and bought a brace a few years ago through my own diagnosis! I wear it now and again and it does help. But at the moment there is 2 much swelling to wear it. I am glad to hear you are a success story. I am sure you are a changed person for it.Well done for making it through!

Kat, how awful for you and your daughter and everyone else involved. Thank you for your words of kindness. I hope so much she gets a miracle and makes it through. And i hope so much that she can find it within her not to give up hope.

Saw my OS yesterday who said my acl graft has failed as the screws had come loose. He sent me for an MRI scan and now i have to wait 2 weeks to see him again for the results. I am with NHS in england and decided yesterday to see a private physio because my nhs physio just really did not seem to care at all. He just told me to keep exercising and that was it. Not once in 3 years has he done any physical examination or paid attention to my concerns. The private physio i saw yesterday was brilliant. He told me my knee is a complete mess and he suspected I have all sorts of ligament tears aswell. He was adament my OS was no longer going to be of help. He was disgraced at the state of my knee and my care and suggested I get a second opinion from another OS. So now i wait to see MRI results and see my diagnosis and what they can offer me and also wait to see my gp to try get a 2nd opinion.

Fingers crossed, just a waiting game now!
Title: Re: 4 operations, 2 failed acl what now
Post by: vl7007 on June 16, 2010, 02:29:06 PM
Hey roze87,  have you considered trying Nuffield Orthopedic Hospital, as they are meant to be one of the largest ortho hospitals in europe.  Therefore they should have experience in dealing with your type of situation.  I considered travelling from Australia to there to seek assistance with my daughter Kat, until our ortho team were able to find a limb reconstruction specialist here in Aus, who was willing to consider even looking at Kat with her legs.  It took our doctors 8 months to find one here, as there are only a few in Australia.  Most of the ortho's here have done training at Nuffield in Oxford.  However I am not certain how far away it is for you.  We also have used knee bracing in the past, but now Kat needs custom built ones, to go with her moon boots, which she must wear in order to be able to weightbear transfer now.  I have read a few of the messages sent to you on this site, everyone here is so supportive and comforting.  It is really a good site, both for connecting and support as well as for information.  Remember you are in control of your life, and information and awareness is the key.  Ask questions, if the physio or specialists can't answer your questions then keep looking.  Get 2nd, and 3rd opinions if necessary, be certain before you agree to any further surgeries, that way, you go in with your eyes completely open.  Glad to see you are more positive now.  Catch you later.   

Kats mum, Vicki
Title: Re: 4 operations, 2 failed acl what now
Post by: rox59 on June 17, 2010, 08:00:29 PM
Hi Roze-
While you are waiting, stay off that knee, and ice lots! I know that's a "luxury" for most if us, but keep that leg up! If you can't adjust that brace to accomodate swelling, I suggest you find another one.  I truly wish you all the best and hang in there.