Knee injury journey

[CoyoteChris]

I don't have an experience with knee surgery, but have had the misfortune of having 3 surgeries in the past 15 years for 3 totally unrelated conditions. My best advice to you is to realize that little things are going to go wrong. Untenable treatment schedules, sitting for hours in a waiting room because someone forgot you, sent to the wrong part of the hospital for a test, day surgery done so late in the day that you don't meet criteria for leaving hospital before day surgery staff needs to go home, etc., etc.

Sometimes you have to advocate for yourself (ie remind them you're there) and sometimes you just need to roll with the punches (because I live close to the hospital, they sent me home when they technically shouldn't have, which was totally the right decision). It's best to realize that stuff happens and not to get too upset by the inevitable bumps along the way. The final result can still be fine despite personal and "system" setbacks.

ITA. My last two surgeries were successful but there are unintended consequences that i wont go into so I dont gross people out. And one wasnt 100 percent successful but I can still live the rest of my life with what's left and I am glad I had them.

 

[CoyoteChris]

Wow, thank you for all the kind comments and advice, I read them all and it actually helped a lot. This week have been so much better mentally. I´m trying to have a positive mindset. The wait for the surgery now doesn´t feel so bad with the figure skating season starting tomorrow

Talk therapy with those that have been there is indeed helpful, I have found out. And as Nana said, being your own advocate is important. In the US medical system, if you dont whine, you dont get the grease. The squeaky wheel gets the grease here. Its sad but true. Spokane had two major corporate urological clinics and they were kept busy as this is an area full of retirees. Then one day, one closed OVERNIGHT. The other practice went into emergency mode. While they are coping by farming out us people who just need year to year maintenance to PAs, getting precriptions refilled can be a nightmare. My compounding pharmacist is a great guy and he tells me the nightmare stories he has had between patients and the practice....so when my scripts get messed up, I squeak and squeak...and I have learned to order early and keep on top of things.
Keep up those positive vibs.....

 

[norwegianfairytale]

Hi you all. It´s about time I make an update about my knee.

I´m sorry I havn´t been updating after the surgery in September, I have been meaning to update for some time.

So first of all, the surgery went pretty well and I finally got a diagnosis.

Starting with the surgery, I was very lucky because I was the first to get surgery that day and I did not need to wait long at all after arriving to the hospital in the morning. Already a quarter past 9 am I was done. The surgery was done in around 40 minutes and I felt fantastic when I woke up from anesthesia, I was very clear headed and remember everything that I said and was not in pain or feeling nauseous. Around 11 am I was already cleared to leave and got picked up by my father.

The surgeon found a lot of scar tissues causing my stiffness in the knee. My knee still lacked 20 degrees of extension during TIVA which confirmed that the stiffness was not in my head but it was the scar tissue that caused the stiff knee. The surgeon was able to gently remove a lot of scar tissue, and then they did some mobilizing of the knee at the end of the surgery (apparently they manipulate the knee when it´s under anesthesia).

The diagnosis is arthrofibrosis in the knee caused by the knee trauma. If you never heard about arthrofibrosis before it´s not odd at all because it´s not very common condition and those who get in the knee are mostly patients who had knee replacement. It´s also known as frozen knee.

"Arthrofibrosis is a fibrotic joint disorder characterised by excessive collagen production and adhesions that result in restricted joint motion and pain"

Unfortunately it´s hard to treat because different treatments such as surgery, too heavy exercises and so on can cause more inflammation which will again cause more scar tissue. So it´s important to find a good balance in treatment and since the condition is pretty rare not many have experience with treating it either. For instance, my PT hadn´t had a case like mine before, and not my GP either was familiar with this diagnosis. So this is a learning experience for us all.

I have of course tried to find information online and I have found Facebook group with people with arthrofibrosis all over the world sharing their experience. Unfortunately there is a lot of stories with people who lacked range of motion for several years and had several surgeries and minimal improvement, but there are also people with positive outcome after some time. However it seems to be common to struggle with this for some time and needing to be patient.

So after the surgery I wasn´t expecting miracles and surgeon said that it would take time, but said i´m going to get better eventually. Right after the surgery my knee felt a little better, my first PT appointment after the surgery, I was still lacking 16 degrees to stretch my knee completely, but that was still better then the 20 degrees I had before the surgery. My PT also said the knee felt a little bit more flexible. I still need to use crutches as long as I can´t bend it completely because it would cause incorrect load on my body, but i´m allowed to put weight on it.
We continued PT sessions during the fall and for several weeks we couldn´t get pass the 16 degrees and there were little improvement. Also the follow up appointment after the surgery was postponed and I could not get an appointment date as promised (should have been 6 weeks after so it would have been in November). So that was frustrating. Finally I got scheduled an appointment date in the beginning of January. Right before Christmas there were finally some small improvement, we went first from 16 degrees to 14 degrees, then to 12 and finally we came down to 10 degrees so we are halfway there, also eventually my PT could notice that my muscles around have gotten stronger, which is important part of the process to be able to walk normal again.

So last week I had my long awaited follow up on the hospital with a PRP-injection in my knee and i´m I will make an own post about this and what came out of that appointment.

 

[NanaPat]

Glad the surgery went well.

While it would be nice to have a physio who has experience treating your condition, it is more important that they are flexible and sensitive to how YOU are responding to treatment, and it sound like your physio is good in that way.

It must be a relief to know what is going on, even if the treatment is nuanced.

 

[norwegianfairytale]

So here is part 2 with the follow up I had at the hospital last week.

Straight after the surgery my surgeon told me he wanted me to have PRP-injection after 6 weeks as part of the treatment.

Platelet-rich plasma (PRP) injection is produced with your own blood. It´s a concentration of the blood cells (platelets) which they inject to the injured parts to try to stimulate to healing of the affected area. Apparently the effects it´s not well documented and it´s also very expensive, so it seems the treatment is a bit controversial. I did not have to worry about the cost as this is covered by the public health care system.

However, after reading about arthrofibrosis and PRP-injection I got a bit skeptical. There was not much research in this area but a source said that the effects are not well proved and that in theory it could even trigger the arthrofibrosis to get worse. Because the injection could stimulate the cells to overreact and cause more inflammation then again causing more scar tissue. The experience from others in Facebook groups was that the few who had tried PRP injection for this condition had no effect and some even said they got worse and in general it seemed like there were very few treated with this injection and others not recommending trying this.

So I finally came to the appointment last week and the surgeon said I was still very stiff in the knee. Mind you I have been talking about that I lack 10 degrees to get my full stretch back to be able to walk normal, but I havn´t talked much about that I can only flex my knee 90 degrees which makes me unable to ride around the pedal of a bike. A normal range of flex would be around 120-135 to be able to do all activities, so I do lack a lot of flexibilty. All though getting the stretch back is the important task first because I don´t need to ride a bike in my everyday life.

He said he wanted to try the PRP injection and have a follow up in 6 weeks, and if the injection didn´t give any improvement there will be another surgery were we will do more, something about the capsules in the knee. So it will be a bigger surgery. But this will all be discussed at the next appointment.

So we did the PRP, all though I was skeptical I needed to trust my surgeon. It went well, not a lot of pain and only a little red and stiff the first day. So it´s been a week and it actually seems I have gotten a little bit better, at least not worst for now which I´m very relieved by. We are still at 10 degrees deficit to stretch my knee fully but it feels more flexible and my PT says I seem much stronger and we both feel like I might soon be able to stretch it fully. Also I I have less pain now in general, doing exercises, I can put more pressure on the knee. Since it´s also been a while since I have been walking normally, my PT says that my brain doesn´t fully connect with the muscles that are supposed to be used when walking, so she says that once it connects I might suddenly experience that I can bend it fully over the night.

So far it´s looking very promising to get my stretch back, but there is still no sign of improving my flexion so I might have to do another surgery anyway. But if I get my full stretch back soon it´s no rush doing the surgery.

Well there is only one thing shadowing the progress now. I just got the date for the follow up appointment in 6 weeks, I was taken by surprise because it says to be done as a phone call in the beginning of March. I thought that was odd considering he wanted to measure the progress on my knee and discuss surgery which it´s not ideal over the phone. So I checked the records that he wrote after the appointment and I could not believe I was reading about myself. The record he wrote says that I have full flexibility and extension in my knee after the surgery and that i´m only minimal stiff now, which couldn´t be further from the truth since I do not have full flexibility or full extension. I could not believe my eyes because he was checking my knee and saying I was still very stiff. Also the record said nothing about that he wanted to do another surgery if I´m not getting better. It´s weird because parts of the information in the record is correct about my diagnosis, the surgery I had and the knee injury I had.

I don´t know if it may have been a mix up between me and another patient or if he just didn´t remember, the unit is very busy at the moment they never had such long wait list on urgent surgeries (fractures) and it seems he wrote the record a week after the appointment. I´m going to talk both with my PT and GP about what to do with this, i´m sure they don´t understand much either when they read this. Of course the record would need to be corrected but also I think it´s a mistake that I´m going to have the next follow up as a phone call, so there is things to get sorted out.

 

[norwegianfairytale]

Glad the surgery went well.

While it would be nice to have a physio who has experience treating your condition, it is more important that they are flexible and sensitive to how YOU are responding to treatment, and it sound like your physio is good in that way.

It must be a relief to know what is going on, even if the treatment is nuanced.

Thank you so much. I do agree with you and my PT is just like that. She has been so fantastic and I could not have been more grateful. She has also been reading studies about my condition to educate herself during the treatment. The previous PT I had pushed too much in the beginning when I had a lot of pain and it might have done the arthrofibrosis worse. I noticed when I changed PT (she got a new job) that the treatment was so much less painful with my new PT. She is always asking me about pain level during stretching and is very careful.

Unfortunately my current PT told me this week she is going to change work place and move far away in the beginning of March, so I will only see her until the end of February. This is really sad, but also a product of that the current work place only gave her a contract until the summer so of course I understand her choice. I having my fingers crossed my next PT will be like her.

 

[norwegianfairytale]

So I talked with both my GP and PT and they recommended that I called the hospital myself and asked for the medical record to be corrected. I talk to a very nice lady today who would send a note to the surgeon with the correction, and she said a surgery could still be considered during the follow appointment as a phone call, all though I think it´s weird he don´t want to examine my knee. Well, we will see. I have done what I can now. My GP said he got the note a week after the appointment so it seems the surgeon waited a week to write it, so no wonder there is mix up/mistakes.

Some good news, since the injection I actually had further improvement on the stretch, it went from 10 to 8 degrees the last 2 weeks. I´m certainly getting nearer and nearer to be able to stretch my knee fully and be able to walk without a limb. And my quadriceps continues to get stronger!

Still no improvement on the flexion though, but we are working with some new exercises.

Well there is high and lows. Not only my PT will quit in February, but my GP told me at yesterdays appointment he is quitting too in the next 3 weeks because he is moving. I´m really sad with this and feel kinda embarrassed by feeling so strongly about this. But both my PT and GP have been fantastic support to me the last year and have been so helpful, and I think i´m also very sad because I don´t think I will ever be able to get replacements as good as them. And loosing them both in the same month feel like some kind of evil joke. I´m sure I will be fine and find good replacement, but it´s kinda emotional since i´m finally having some real progress and I´m sure they would wanted to see me progress further.

I havn´t been sharing either that I lost my job after Christmas. After the surgery I was on graded sick leave and only worked 50% of my work time. I did only have a temporary position until 31.12, but there was another temporary position available from January until July in the same position. I needed to apply for this, but I did not get the job all though I was the most qualified. They decided to hire someone outside the company with no direct experience with the job, they just found a reason to say she was more qualified. Unfortunately I feel like my health situation and graded sick leave was the reason they didn´t give the job to me, and I feel they treated me like garbage. Well there were a lot of bad things on the work place so i´m kinda glad i´m not working there anymore, but at the same time i´m still irritated by how it ended.

I will get money to search for new job through public support, so i´m doing fine financially now and I´m also still on graded sick leave fortunately, you don´t need to be employed to get it, and I have paperwork from my doctor about my situation and that my options for a new job is limited. Most likely it will take time to find a new job, I can do an office job, but the thing is most of them won´t hire in part time positions. I´m grateful there is still a lot of figure skating to watch.

 

[elbkup]

So I talked with both my GP and PT and they recommended that I called the hospital myself and asked for the medical record to be corrected. I talk to a very nice lady today who would send a note to the surgeon with the correction, and she said a surgery could still be considered during the follow appointment as a phone call, all though I think it´s weird he don´t want to examine my knee. Well, we will see. I have done what I can now. My GP said he got the note a week after the appointment so it seems the surgeon waited a week to write it, so no wonder there is mix up/mistakes.

Some good news, since the injection I actually had further improvement on the stretch, it went from 10 to 8 degrees the last 2 weeks. I´m certainly getting nearer and nearer to be able to stretch my knee fully and be able to walk without a limb. And my quadriceps continues to get stronger!

Still no improvement on the flexion though, but we are working with some new exercises.

Well there is high and lows. Not only my PT will quit in February, but my GP told me at yesterdays appointment he is quitting too in the next 3 weeks because he is moving. I´m really sad with this and feel kinda embarrassed by feeling so strongly about this. But both my PT and GP have been fantastic support to me the last year and have been so helpful, and I think i´m also very sad because I don´t think I will ever be able to get replacements as good as them. And loosing them both in the same month feel like some kind of evil joke. I´m sure I will be fine and find good replacement, but it´s kinda emotional since i´m finally having some real progress and I´m sure they would wanted to see me progress further.

I havn´t been sharing either that I lost my job after Christmas. After the surgery I was on graded sick leave and only worked 50% of my work time. I did only have a temporary position until 31.12, but there was another temporary position available from January until July in the same position. I needed to apply for this, but I did not get the job all though I was the most qualified. They decided to hire someone outside the company with no direct experience with the job, they just found a reason to say she was more qualified. Unfortunately I feel like my health situation and graded sick leave was the reason they didn´t give the job to me, and I feel they treated me like garbage. Well there were a lot of bad things on the work place so i´m kinda glad i´m not working there anymore, but at the same time i´m still irritated by how it ended.

I will get money to search for new job through public support, so i´m doing fine financially now and I´m also still on graded sick leave fortunately, you don´t need to be employed to get it, and I have paperwork from my doctor about my situation and that my options for a new job is limited. Most likely it will take time to find a new job, I can do an office job, but the thing is most of them won´t hire in part time positions. I´m grateful there is still a lot of figure skating to watch.

Balancing recovery and work is really difficult in the best of circumstances.. and to lose two providers at the same time is so disappointing. Their replacements may work out very well though and bring a new perspective to the situation so give them the benefit of the doubt. I too have flexing issues with my knee, all being fully normal except back bend which was 110 degrees at my last visit (July); my surgeon wants 120 degrees so it isn’t bad. It is now January and I am doing most tasks with ease. Still working on the knee bend and find to my surprise that the bend is improving with daily tasks.. needs must I guess example I no longer move the seat back entering/exiting the car (so annoying).. I just make the necessary knee bend, harder at first, easier now. And gardening season is coming soon.. lots of bending and stretching I am looking forward to!
Best of luck with your recovery going forward .. sounds like you are seeing the light ahead

 

[norwegianfairytale]

Hello you all.

I´m really sorry I havn´t updated this thread in the last 8 months. I wasn´t even aware that it´s been that long?!

Well, sometimes absence is a good sign.

In my case, I would say it is.

The last half year has been kind of hectic as I was called back to my old work place in the end of March, surprise surprise, they wanted me back in the temporary position because the girl who got it before me got a permanent contract. They even had the audacity to offer me only the remaining 4 months of the vacancy. I used it as a good opportunity to negotiate some benefits. I was able to get an own office near by (35 minutes by car), instead of going to the one 1,5 hours away (which eventually would have been me sitting at home office mostly 5 days a week for several months). The new office spot is still in the same organization but not in the same departement, so I always knew there was an office nearer but they were just being difficult last time wanting everybody in the departement under the same roof, all though we do most of the meetings remotely because we have until 2 days of home office a week.
The new office spot has really been great as I got to know some really nice people in other departements, and mostly I only need to deal with all the not so nice people from my own departement remotely. It has made work a lot easier. The last couple of months I have slowly been working myself back from half time to full time work, starting full time again one month ago after my vacation. My contract has now been expanded until Christmas, that is all I know and got for now, hopefully I will not be screwed over again, but my boss is also so chaotic and might not even get things sorted out in time, so I will just wait and see.

So... the knee! Oh in reality there has been huge progress!

Already in February I had this breakthrough at PT session where I could suddenly get the pedal around the stationary bike, that was the minute I was able to progress past 90 degrees flexion and this was a little game changer for me. Not only that, but this actually happen with my old PT during our last session, so it was kind of an emotional moment for us both and i´m glad she could leave on that day knowing I was finally getting better.

From that day there has been small progresses step by step. I have gradually stopped using the crutches and walked more and more on my own. In the beginning just in my house, and then using one at long distances, eventually I decided to try without them and it didn´t get worse, and my current PT says I´m walking better and better in every session. I havn´t used my crutches at all since June now. I still walk with a little limp but it´s just so lovely to be able to move without them. Also we have reduced the PT session drastically. From 2 times a week I´m now down to once a month, so fortunately I have less appointments in my everyday life.

I´m also walking stairs better, and started to slowly do more weight bearing exercises. My quadriceps has gotten really strong.

My flexion has gotten around 5 degrees better each month, from the 90 in February to today i´m at 125 degrees flexion which is a huge improvement.

The stretch, the extension is not progressing as fast, I still lack around 5 degrees. All though I´m walking much better i´m still having this little limp that is putting impact on my body. I´m still dealing with some back and neck issues and stiff hip, probably caused by this little limb.

I had another appointment with my surgeon in June, he was a bit unsure what to do further, he said he would recommend a new surgery because I need to get my stretch back, but we decided to wait a little to see if I would have more improvements on my own since I start showing progress the last couple of months.

And next week is already the next appointment. I do think perhaps he will recommend to do a new surgery soon to remove more scar tissue so that I can get my full extension back since i´m still lacking some, but maybe he also wants to wait and see. But I can´t continue walking forever with a limp, so when are we going to draw the line? I think it will depend on what the new measures says on my extension. They said I lacked around 8 degrees in June, it´s what they think my normal range would be because I have a little hyper extension in my other knee.

 

[norwegianfairytale]

Balancing recovery and work is really difficult in the best of circumstances.. and to lose two providers at the same time is so disappointing. Their replacements may work out very well though and bring a new perspective to the situation so give them the benefit of the doubt. I too have flexing issues with my knee, all being fully normal except back bend which was 110 degrees at my last visit (July); my surgeon wants 120 degrees so it isn’t bad. It is now January and I am doing most tasks with ease. Still working on the knee bend and find to my surprise that the bend is improving with daily tasks.. needs must I guess example I no longer move the seat back entering/exiting the car (so annoying).. I just make the necessary knee bend, harder at first, easier now. And gardening season is coming soon.. lots of bending and stretching I am looking forward to!
Best of luck with your recovery going forward .. sounds like you are seeing the light ahead

Thank you and sorry for not getting back at your comment before now. How is your back bend doing? It´s crazy that when you wrote this I had 90 degrees and now i´m at 125, I hope you have gotten to the 120 degrees that the surgeon wanted. If you are not there yet I hope this could maybe motivate and give you hope. I did not even dare dream about 110 degrees in January!

 

[elbkup]

Thank you and sorry for not getting back at your comment before now. How is your back bend doing? It´s crazy that when you wrote this I had 90 degrees and now i´m at 125, I hope you have gotten to the 120 degrees that the surgeon wanted. If you are not there yet I hope this could maybe motivate and give you hope. I did not even dare dream about 110 degrees in January!

Just had a two-year follow up with my surgeon; almost there but (at age 78) he is happy and so am I .. thanks for asking! Next check up is in three years.. Lord willing. I must constantly work on my balance also because the knees feel very different from one another.. still working toward moving the knees seamlessly together walking, stairs, soft jogging.. a learning curve but maintaining balance is super important! Still, I am not complaining having left the miserable bone-on-bone behind me; I laugh to say I am now a bionic woman with multiple mechanical parts.. hah!

 

[elbkup]

Thank you and sorry for not getting back at your comment before now. How is your back bend doing? It´s crazy that when you wrote this I had 90 degrees and now i´m at 125, I hope you have gotten to the 120 degrees that the surgeon wanted. If you are not there yet I hope this could maybe motivate and give you hope. I did not even dare dream about 110 degrees in January!

Offering congratulations on your remarkable recovery. The process may be difficult but so worth the effort coming out on the other side.. I remember your initial posts and celebrate your increased mobility with you.. lovely

 

[norwegianfairytale]

Hello you all!

Apparently the cycle starts and ends with Euros Officially today my surgeon told me I´m doing so well I don´t need further follow ups!

2 years ago during Euros the injury happen. It has been a long journey with range of motion starting at 20/90... It took some time even to get diagnosis, and when I read about it I wasn´t really optimistic reading about others experience with arthrofibrosis and still not having the optical ROM all though they have been dealing with treatment for years.

My numbers today were amazingly 0/130!! No more surgery was needed, the wait and strategy seemed to work, all though it wasn´t always easy.
It´s better that I would have imagined was ever possible a year ago. My knee is still a bit stiff, but I can stretch out normal which is most important and even the flexion of 130 is very good, the last degrees that is missing isn´t really important for everyday life. And as the surgeon said, it can still improve. Basically I was told I can live as normal, and dreams of hiking again this summer isn´t looking bad. Now - I want to be realistic, I probably always be a little stiff in that knee and starting up activities again is probably not going to go without pain. But I´m happy with the progress and it feels like this is something I can live with.

 

[CoyoteChris]

Hello you all!

Apparently the cycle starts and ends with Euros Officially today my surgeon told me I´m doing so well I don´t need further follow ups!

2 years ago during Euros the injury happen. It has been a long journey with range of motion starting at 20/90... It took some time even to get diagnosis, and when I read about it I wasn´t really optimistic reading about others experience with arthrofibrosis and still not having the optical ROM all though they have been dealing with treatment for years.

My numbers today were amazingly 0/130!! No more surgery was needed, the wait and strategy seemed to work, all though it wasn´t always easy.
It´s better that I would have imagined was ever possible a year ago. My knee is still a bit stiff, but I can stretch out normal which is most important and even the flexion of 130 is very good, the last degrees that is missing isn´t really important for everyday life. And as the surgeon said, it can still improve. Basically I was told I can live as normal, and dreams of hiking again this summer isn´t looking bad. Now - I want to be realistic, I probably always be a little stiff in that knee and starting up activities again is probably not going to go without pain. But I´m happy with the progress and it feels like this is something I can live with.

It is a journey.....my back was the same...two herniated discs and lots of soft tissue damage. First 10 years was the toughest but I did Pt and not surgery and it worked. I had knew issues for 35 years but if you can believe it, they were "solved" by pataller straps below the knees to stabilize the tendon and knee caps. Old age isnt for sissies....

 

[elbkup]

Hello you all!

Apparently the cycle starts and ends with Euros Officially today my surgeon told me I´m doing so well I don´t need further follow ups!

2 years ago during Euros the injury happen. It has been a long journey with range of motion starting at 20/90... It took some time even to get diagnosis, and when I read about it I wasn´t really optimistic reading about others experience with arthrofibrosis and still not having the optical ROM all though they have been dealing with treatment for years.

My numbers today were amazingly 0/130!! No more surgery was needed, the wait and strategy seemed to work, all though it wasn´t always easy.
It´s better that I would have imagined was ever possible a year ago. My knee is still a bit stiff, but I can stretch out normal which is most important and even the flexion of 130 is very good, the last degrees that is missing isn´t really important for everyday life. And as the surgeon said, it can still improve. Basically I was told I can live as normal, and dreams of hiking again this summer isn´t looking bad. Now - I want to be realistic, I probably always be a little stiff in that knee and starting up activities again is probably not going to go without pain. But I´m happy with the progress and it feels like this is something I can live with.

Cause for celebration !!
Enjoy