Frustrated and wanting to give up...

[KinnaMarie]

I have been in physical therapy for 10 months.  I have had 2 knee surgeries on my right knee.  I have nerve damage.  And now I have a stress fracture because of everything that has been done.   

I am sick of doctors.  I am sick of PT.  I just want to give up.

Sitting in my OS's office last week right before I found out I now need to sport a walking/boot cast thing because of a stress fracture, I looked at my mom and asked her: What would happen if I just stop?  Stop going to the dr. Stop going to PT.  Stop caring.

At the end of July I was playing in a volleyball league and went up to spike the ball and came down wrong on my knee and it cracked.  A week later I had surgery to remove a piece of bone that chipped.  My OS at the time realized my knee cap wasn't sitting right, but figured PT would fix that.  I started PT 2 weeks after surgery and after 4 months a making little progress and my knee not bending, my original OS gave up on me and sent me to one of his colleagues.  My current OS, who is like a father to me, made me stop PT and told me I "concern him."  After going through more tests (x-rays, mri, ct) he said I will need another surgery to ultimately fix my knee. 

In January I had a fulkerson osteotomy, lateral release, tightening of ligaments, and removal of scar tissue.  I surprised my OS and PA because I was smiling when they came to check on me.  Since then I continue to smile, yet am crying on the inside holding in all my fears and anger because of what I am going through. 

I again started PT but could barely move my ankle.  Right after the surgery I was afraid to move my ankle because it made my knee hurt from the surgery.  I thought I would get over it, but my ankle always turned in.  My OS did not like this and made them work on it in PT.  I didn't improve so he thought it could be nerve damage and sent me for an EMG/nerve conduction study.  It came back and said I have peripheral nerve damage which explains why my ankle is turned in and I don't walk right.  My OS thinks it may be from the original surgery or injury. 

After that news I wanted to give up and thought I would start exercising and began running and walking miles a day.  I loved it!  It was a stress reliever from my school work and everything going on in my life.  Well then I started to bruise and swell from my shin down to my foot.  My PT's got concerned so I went to see my OS.  They didn't know what it was so sent me for more x-rays.  Those didn't really show anything so he wanted a MRI.  At 9pm 2 weeks ago I went for an MRI.  I honestly don't know what it said, but he said he wanted me on crutches and to wear a cast/boot thing and to stop PT.  He said because of the surgery my bone that he worked on wasn't happy in it's place and when I would run I would make it mad.   

My ankle now again is extremely weak and still swollen so he thought after a week off of PT I need to go back to really focus on my ankle, until they go back to focusing on my knee which still doesn't bend much past 90 degrees.  He also made me go on this steroid (prednisone) I told him I would never take after he found out I have nerve damage.  I didn't have a option this time and he said I have to take it to get rid of the swelling.  I hate how it makes me feel, but am listening to him and taking it.  I also went back to PT yesterday and sat there wanting to give up as they attempted to get rid of the swelling.  My mom told my PT I want to give up and she tried to tell me things will get better.  Right now I am not feeling that way.  I just finished my semester and it is the start of summer and I just am just so out of it and frustrated.  Will I ever be done? 

[tez27]

Hi Kinna Marie I am so sorry your feeling so down and frustrated about your leg, it sounds like you have been through a hard time and I know its hard when you cant see an end in sight but its important to try to keep poistive and keep doing what your OS and PT want you to do and eventually you'll see a light at the end of the tunnel, I dont know much about your condition, but can understand the feeling of not knowing when or if your leg will ever feel better, plus from the sound of things your quite young which must make things doubly hard on you, just remember your not alone in this and this site is a great place to come for advice, support or just a good old moan about how hard this whole thing is.
I hope things start to improve for you soon take care
Tez 

[Runner1993]

KinnaMarie, you are so much stronger than you believe. Trust me, it is so much easier to throw in the towel; I have wondered the same thing. But keep going...I know easier said than done. Don't let the knee become your life though. Still go out with friends, still do things you enjoy (my lazier guilty pleasures are eating and watching cheesy romance movies). In the PNS, nerves can regrow, slowly. I'm not sure how it is with completely severed ones. However, I don't know the extent of your damage, but there may be hope. What symptoms do you have from the nerve damage? Loss of ankle control? Any tingling, numbness?

I am glad your OS is like a father to you! That's great. When you see him, tell him how feel. Ask for advice, information if you aren't sure on stuff, etc. My surgeon wants me to be honest with him, and says it wouldn't hurt his feelings if I said something was wrong or I was disappointed. I'm sure your team of doctors, therapists, family, and friends all want to help you through this. Keep posting here; it helps me, too. Thanks so much for your continued support on my post-op diary.

Congrats on finishing the semester. What are you studying? I hope the break from school takes some stress of your shoulders. Maybe get in a pool when it gets warmer where you live. I did pool therapy for a while at one point; it's suppose to desensitize nerves, take the load of the joints, and reduce swelling if at the right temp.

Best of luck!

[Suejs14]

Hi Kinnamarie --

I so hear your frustration!  The very most important thing is to believe you will improve and get better.  There is so much information and support on this site to help you through the dark days . . . and giving you knowledge and hope that the brighter ones are coming.  I am still totally confined and immobilized because of a patella comminuted fracture on Easter -- and haven't even gotten to the point where I can begin to rehab.  I know and believe that I will return to the activities I love . . . I just don't know when.  So -- take in a deep breath, let it out and repeat.
Keeping you in my thoughts!
Sue JS

[Lottiefox]

Hi there

I am so sorry you're feeling so frustrated. It seems so unfair when surgical complications happen doesn't it and you just want to get on and live your life. Do you have much pain? I can empathise with the nerve damage - I had foot surgery on the 20th April and something happened during it or in the first week, as I got terrible numbness and then pain. I have been diagnosed with early stage complex regional pain syndrome - my peripheral nervous system has gone into meltdown but I'm not giving up and in 3 weeks I've got some good improvments in function and pain relief. I was put onto Pregabelin (Lyrica) for the nerve pain and symptoms, and a strong NSAID for the swelling in my big toe which was the centre of my surgery and the main problem area. Lyrica has really helped me. Pt is important, so don't give up, but tell them how you're feeling rather than always have a happy face. It is OK to feel scared and upset and angry. Use those feelings though to make sure the danged knee doesn't defeat you. I have shouted at my foot that it isn't going to wreck my life - I chose the surgery as it was affecting every step I took, and it isn't going to give me another problem now. You can fight this problem with your knee. Have they checked you out for more scar tissue, you mentioned there was some at your second surgery - if so, you need very specific PT to help this and also to deal with the nerve issues.

I wish I could send a hug, but I do understand your feelings of being out of control and frustration. Don't give up - you are more than a knee. Good luck, big hugs,

xxxxxxx

[KinnaMarie]

Thank you everyone for the encouragement.  I just got very frustrated and needed to put my thoughts somewhere.  I am not one to tell someone something hurts for I don't want show it hurts or that I am a weak person...  I just really felt lost at my last dr. appointment when he prescribed me a drug I said I refused to take after he found out I had nerve damage.  He knows I don't like to take anything...after the fulkerson surgery I did not want to take the pain meds...because I don't like the way they make me feel and I am so afraid of getting sick.  So he dropped trying to make me take anything, but at the last visit he didn't give me the option and looked at me and pretty much said I need to suck it up and take it in order to get the swelling out of my ankle. 

Hey Runner:  I am studying to be a teacher.  After going through all this I actually would like to do something in the medical field now, but not sure what.  My one PT looked at me one day and said he bets I will become a physical therapist down the road.   With the nerve stuff I can't move my ankle.  It seems very weak and just turns in.  This then affects the way I walk and the fact that when I am sitting at the edge of the table I can't straighten my leg and bring my foot up to hit my drs. hand.  If he guides me I can't do it, but he says he can feel something is misfiring.

Lottie: Did the NSAID help with the swelling for you?  I was prescribed Prednisone and took it for 6 days (just finished today) but do not notice a difference.  My ankle is still swollen and it hurts to move it because I can feel it is swollen (you can also clearly tell by looking).  I see my dr. again on Tuesday and am afraid for this didn't seem to work.  I hated how Prednisone made me feel (dizzy and made me super hungry!) and I am afraid he will want me to take it longer...   

[Lottiefox]

Hi there

I did find the NSAIDs helped a bit, although normal ibuprofen did nothing for me. I find Naprosyn works quite well but is hard on my stomach, so I take Celebrex now which is a COX2 NSAID designed more for arthritis inflammation, but it has helped my big toe swelling quite a lot. I've been lucky that I don't have huge swelling in the rest of the foot, just around the surgical site which at 5.5 weeks post surgery isn't that unusual. Its all been complicated by my nerve damage and subsequent CRPs reaction. I have never been prescribed Prednisone but I know steroids can have a powerful effect on swelling, but you're right - they make you feel like ****. I find the Lyrica really helps my nerve pain, I am hopeful to wean off it after about 3-5 months when symptoms have settled. I was lucky to see the top pain management guy in my area within 2.5 weeks of surgery when the problems started and he has worked closely with me and my foot surgeon. I was told that I HAD to push my activity levels, walk as much as I can cope with, exercise my remaining toes and ankle or else the CRPS will take hold and I'll lose function. It must be extremely hard losing the ankle function as it does so much with our leg and walking gait. Did they say what nerve has been damaged?

I really hope you get some progress soon. With these types of things it is little things that boost us - yesterday i spent the day in trainers for the first time. Walked around, felt OK. I would never have been so happy to get into my wrecked old gym shoes, but it felt great!

Take care

Lottie xx

[KinnaMarie]

Lottie you are so right about little things boost us!!  I saw my OS again (for the 6th week in a row) so my PT did a progress note for him.  The first thing he wanted to do was measure how far I can bend my knee.  I got it to bend 107 degrees and he got it to 121 degrees!!!  I never saw my PT get so excited...the whole room was excited!!!  It made me soooo happy too and I could not stop smiling!   I think I was so happy to see how excited my PT got!  He even quickly yelled to my other PT in the room..it just made my day!!!  My OS was pretty impressed too, but he is more concerned with my ankle which is getting better, yet is weak and I can barely move it how he wants me to.  He did say he was proud of me for taking the prednisone and even thanked me for taking it!  

After having the EMG/nerve conduction study my OS called and I was afraid to talk to him, so my parents did!  All I remember hearing is him telling them that I have nerve damage in my lower leg which is ultimately the reason I don't walk the "right way" and can't kick my foot up..  I believe my PT told me that it is peripheral nerve damage?  My OS is thinking that the nerve damage is from my initial injury and first surgery.  He believes this because I had the same issues before the second surgery and he thought the second way more substantial surgery would fix this.  One of the worst appointments I had with my OS was when he sat there scratching his and looked at me and said, "We did the second surgery to fix these same problems you are still having..."  So I left thinking: oh great he is now second guessing himself on if I really needed the surgery or not... $50,000 later and a knee filled with scars, 2 screws, and more time spent with my "favorite" PT's...  But all along it was nerve damage???  I just hate still having the feeling that this second surgery wasn't necessary and dealt with all this while being in school.  I can honestly say i don't really even remember anything I learned this semester and it just flew by...but some how I managed to get a 4.0!      

   

[Lottiefox]

Awesome news!! 107 and 121 degrees is just brilliant. It will keep coming! Good on ya!

Nerve damage is a weird one. I too had a little boost this week - saw my foot surgeon who said my top big toe joint was not firing when I walked (hence why my gait is even more off than usual with a fused lower big toe joint..) - he asked me to move it - nothing. Couldn't do it. He moved it passively, was OK but hurt like merry hell. I have lots of exercises to do for it - and lo and behold - this morning I can make it move on its own!! So excited!! I am sure your ankle will get stronger over time, nerve damage is very slow to regenerate and building new pathways takes a lot of hard work. You'll get there.

Good work on the 4.0 - although being in the UK I am not quite sure if thats good or not?!! 

Take care and keep smiling,

Hugs xxxx

[cabrev]

KinnaMarie,

Hang in there, you will get there.  Don't give up and don't be afraid to "lean on people", it doesn't in any way imply that you're weak...everyone needs a little encouragement.  Even these forums help tremendously, to hear others are going through the same feelings, but winning the small battles bit by bit.  For all of these type of injuries progress can seem to move at a geologic pace.  But you have to step back and note where you have come, and the small wins, because that's the way progress is for this stuff.  Great to hear of one of your recent wins!

LT

[KinnaMarie]

I was doing fairly well and 2 weeks ago my PT was talking about releasing me in the middle of the summer because my knee is really improving and my shin/ankle wasn't as bruised.  Yes I still need a little work on strengthening my knee, but she was so happy with how well I was doing.  Then I had another appointment with my OS so he could check my bruising and swelling and he even said I could come out of the boot and go back to just wearing my ankle brace.  I was so excited because I would be able to put both shoes on!   I was ok all weekend and didn't do a lot of walking...just went to the mall (my OS even allowed me to go to the mall.. ) 

Then on Monday I was sitting outside and my mom asked to see my leg and saw that I was starting to bruise again.  It was 2 smaller bruises starting on my shin again...the same place as the first time (like halfway between my knee and ankle).  I just wanted to ignore it...but then when I went to PT on Tuesday, my PT was not happy.  My OS is in the same building as PT on Tuesdays so she quickly ran over to tell him what was happening.  She came back and said he said I need to go back in the boot...  Great.  Then I went back to PT again on Thursdays and had my other PT.  He put me on the leg press and all of a sudden looked at my leg and got super concerned.  Like I said I was trying to ignore it, but my bruise got super worse and my leg was again swollen.  My bruise was a dark purple and red color and my veins almost looked black to me in some spots.  He quickly called for my other PT to come look at it and she said it is much worse then on Tuesday and said he should just "baby it" and massage/ultrasound the area.  I got off the leg press and just walked away.  I was so close to crying and just kept shaking my head.  We went into a side room and I was so pissed off.  My mom told my PT that I just want to give up and stop and he looked at me and said I can't.  What good would that do?  He said he understands where I am coming from since I have been going through this for so long, but if they don't solve the problem I am doing not good for my future.   

So he spent the whole time massaging/ultrasounding the area and it was not a pleasant feeling...it would like burn and just plan hurt.  Then he scared my mom and said if it doesn't get better or starts to hurt me more I should really go to an urgent care/er.  oh great...makes me feel wonderful.  It reminded me of what my PA called to tell me after my initial surgery when they thought I may had a blood clot.  He called my cell phone later at night and said, "I forgot to tell you, but if you start feeling like you can't breath, have a fever, are dizzy, etc. then you should really get to the hospital fast."  I half laughed and said thanks for sharing... wasn't sure what to say!  My PA and I have an interesting relationship...ever since he woke me up at 5 am in the hospital the day after my surgery when I finally half fell asleep!  

I had PT again today and as soon as I walked into the main work out area my PT's were checking to see if I went to the doctor and how the bruising was.  The bruising is a little better, but it is again moving down my leg to my ankle and everything is swollen.  They still wouldn't allow me to work out and massaged it again.  I am now honestly questioning if this all turned into a stress fracture.  I honestly can't move my foot up or down and it hurts to move my toes.  Ugh.  I see my OS again on Friday ( swear i see him more than my friends!!!)                 


     

[Lottiefox]

Hi there

What a bummer, how frustrating. Can I ask if you have much pain with this leg/bruising and stuff? Does it hurt regardless of what you do? I just want to throw something into the arena - I know you have peripheral nerve damage. Sometimes with this, the nerves and responses go haywire, as has my foot. I just want to be sure they are checking you for any signs of CRPS/RSD. These are not words anyone wants to hear but with the strange colours and the swelling and the loss of movement in the ankle and toes they should be checking you for anything starting along those lines. You are at greater risk of this if there is nerve damage as you have - same as I had. Does your skin look different on the bad leg at all? Does it hurt to touch it, or to put it into hot or colder water (if you can do that). Is it colder than the other leg, or does it feel sweaty? The problem with whether it is a stress fracture again or whether it is anything else kicking in to do with your nerves is that the treatment is completely opposed. Stress fracture needs rest - anything like early CRPS needs activity, even if it hurts. You MUST bend the joints, work the muscles, weight bear, use the ligaments. I am doing so much walking, basic toe wiggling and ankle motions, leg exercises, desensitising of the toes and foot, water immersion, etc. Gradually my colours are improving and I have better function and less swelling. I cannot come off my nerve meds though, not for at least 3 months and then very gradually. And the activity has to be paced too, nothing too bonkers!!

I don't want to scare you, and I am no expert but I am living this, and some of the things you say ring a bell. Keep trying to move your toes, even if it hurts. Move them manually if it is easier. Gentle massage is fine, but nothing too deep. Warm water helps me when I ache.

Hang in there. Maybe ask for a referral to a nerve specialist or pain management person - they see these things from a different viewpoint to a surgeon. Good luck,

Lottie xxx

[KinnaMarie]

Lottie: Thank you so much for all the advice!

My shin/ankle has like an achy bone pain/muscle pain feeling.  It definitely hurts if anyone touches it, plus it sometimes burns randomly...it especially burns though if someone touches it.  My OS did mention at one of my many visits about RSD.  He simply said that I am showing some signs of it, but that is all he said and he moved on to working with my knee.  On my 'bad' leg it just looks swollen and kind of looks like I have lost muscle from my knee to ankle.  It is also normally always warm to the touch...  I just don't know.  I go to PT again tomorrow and then see my OS Friday...

[Lottiefox]

Hi again

It is good that your OS has mentioned it - I think if I were you I would push him again about this on Friday. the problem is that showing some signs of it can mean you have it, it can mean you don't! However, you are describing some pretty similar symptoms to my foot and a pain management doc told me it was RSD within 10 mins of talking to me and then examining the foot and ankle. They are the ones who specialise in it. The sooner anything like RSD is diagnosed the better your chance of kicking it - and you are young and that is a big plus in your favour for it getting under control. (Evidence backed up!). If it IS, you need specific meds (like the Lyrica I am on) to stop the nerve pain and help you start moving it again, a program of desensitisation to reduce the faulty signals and then PT that allows you to build movement and function and halt the muscle loss. I too had muscle loss especially on my calf as I was "guarding" my foot all the time - with the right meds and reduction of pain I am back spinning and walking and the muscle is building slowly. Is your sleep OK or do you wake up a lot? RSD can also disrupt your sleep patterns. You can also get random jolts or muscle spasms out of the blue - weird!

Good luck - don't be fobbed off. I think you need to see a pain management doc and find some answers on this leg. Hang in there

Lottie xx

[KinnaMarie]

Today was the closest I have ever came to crying in the doctors office.  First my PA came in and he had no idea what is going on so he said he wanted more X-rays.  Went for X-rays and then my OS came in and no words can describe the look on his face.  He sat down and didn't say anything.  He then said he just doesn't know what is going on.  In the back of his mind he is now thinking that I may be allergic to the screws....  But doesn't understand why activity would bring on the allergic reaction in my shin area.  He also brought up RSD/compartment syndrome again because when he touches the bruised area it hurts and I told him I sometimes get a burning feeling.  So he said he is going to start with 2 things first...He is sending me for another MRI and wants me to see a pain management specialist.  He also wants to get a second opinion, but as he said he doesn't really know where to send me right now. 

Then what almost made it worse and what made me want to cry was when he had me sitting on the table he wanted me to bend my knee and then bring my foot up.  Normally I couldn't even bring my foot up, but this time I could....except he was not happy with how I brought my foot up.  He is going back to what he said when I first started seeing him.  Before even doing the fulkerson osteotomy, he felt that I may need to have surgery on my hip...believe its called femoral derotational osteotomy...because essentially my hip is turned in or something and he feels that is affecting the tracking of my knee cap.  So 2 days before the fulkerson surgery he had me go see the head of orthopedics at the medical college.  Well he didn't really feel that I needed the hip surgery right now so gave the ok to my OS for the knee surgery.  But after he watched/guided my foot up he was NOT happy with how my hip still turned in in the process.  So he again mentioned me going back to the medical college because he is so unhappy with my hip still turning in....   

It just was not easy seeing how frustrated and unknowing my OS was today.  He just looked at me and my mom and said he honestly doesn't know why this is happening.  So he said I again need to hold on PT and start with his first 2 ideas.  My mom told him I just want to give up, and he looked at me and said "do you really want to live with your leg like this?"  I half smiled and said well no one knows what is going on so what else is there to do...