THR So fed up – almost 2½ years and still not at TKR starting point!

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puffin

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Hi – I am new to the site and am very glad I found it and have read many of the articles.

I am waiting to get to the point where I can actually get to the start line of being booked in for the LTKR that everyone agrees that I need and my life is just wasting away waiting. I am British but living in rural Sweden and trying to navigate a foreign healthcare system in a foreign language.

Some background – I had a bad accident in November 2010 that the knee specialists have described as among the worst they have seen. I cannot even claim that I was doing anything exciting - I merely slipped on the ice at my home in rural Sweden which resulted in:
  • Knee hyperextension/dislocation
  • Ruptures ACL, PCL, LCL, MCL
  • Meniscus tear
  • Tibia shelf fractures
  • Chondral fractures to bone surface & cartilage damage
  • nerve damage and loss of feeling in leg/foot/toes
Because of the combination of injuries and my weight, a conservative treatment strategy was decided to stabilize the PCL and I spent 2 weeks in hospital 8 months in a wheel chair and hard-cast ( limited walking and PT with a walker allowed after 3 months), and aqua therapy after 10 months.

I am have been almost completely disabled since the accident in 2010. I cannot leave the house alone, cannot drive, cannot do things like shower, dress, put on knee support by myself. I cannot do household tasks, cooking, cleaning washing. The local social services have helped with certain disability equipment. Cannot sit comfortably for more than an hour (sometimes not that long). I have taken max doses of paracetamol and codeine since the accidents although it does not really help the pain but cannot take NSAIDs because of a serious allergy. I have not slept through the night since the accident – 2½ years ago!

I have been assessed by the Swedish social insurance agency as having a 25% working capacity and must work 2 hours/day. I am lucky that much of my work can be done from home and indeed I work a lot in bed with my knee supported and iced! But on days where I need to be at the office my husband is forced to take annual leave from his job to drive my the 200 mile (300km) round trip and act as my assistant. He also has to take time off to get me to PT. The need to keep working prevents me from taking stronger medication to control pain as I get too fuzzy headed to work. I am in a catch 22 – my sick insurance runs out in May but they won’t assess me as disabled because of the possibility of TKR. Instead they may force me to give up my job for 12 weeks to be sent on an employment training course run by the unemployment authorities (to see if they can find me a miracle job that I can do for more hours). Then after 12 weeks I can be declared “sick” again!! (It’s an anti-fraud measure introduced by the Conservative-led government).

However the knee replacement I need is being delayed for weight reasons – I was overweight before and this only worsened with 8 months of bed rest/wheelchair. The OS demands that I lose 100lbs (7 stone) prior to surgery. This is not all the weight I need to lose (and not even normal weight) but it is the weight that the OS feels comfortable operating at. He claims that my surgery will be different and more complicated than a “normal” TKR because of the other injuries. He has obtained second (and third, fourth and fifth) opinions of this strategy from orthopedic professors/OSs in Sweden, other Nordic countries and John Hopkins in USA and this is the consensus. The hospitals in neighbouring counties also have worse infection/10 year complication rates – so I am not sure that a new OS is the answer.

However it is soooooooo hard losing weight when in pain, non-mobile and put under huge pressure to work.
- I have lost 75lbs in 1½ years with UK Weightwatchers online – but I am losing less and less only ½-1lb week so at this rate it may be another year to get the last 25lbs.
- The only exercise I can do is aqua therapy – and I try to do 5-6 hours each week – although it is getting harder with the pain.
- The pain is getting worse and worse and the meds less and less effective.

The knee is now VERY unstable – my leg is not straight and the knee/lower leg twists – probably the result of having no knee ligaments and the weight loss meaning that there is nothing to hold the lower leg in place.
- I am now in a state of total exhaustion from pain and not sleeping through the night for 2½ years
- It is also taking a huge toll on my family – my husband is trying to work FT while caring FT for me (he even drives home at lunch – a 20 mile round trip). My teenage kids are finding it hard – we can’t travel to see relatives/can’t make plans … :gaah:

Any suggestions and any advice for fast pre-surgical weight loss? I really don't know how much longer I can go on like this ...
 
Hi, Puffin, welcome to BoneSmart.

Goodness that's a heck of a story.

Here in UK Sweden is held up to be the model of social service and help for all; not much of that as far as you're concerned, it seems. And a 300km round trip to work -- how does that work? In winter it must be almost impossible!?

Is there any percentage in coming to London to see about treatment? Many overweight people have been successfully operated on.
 
I agree with Roy. But tell me - what IS your weight and height? Just saying you need to loose x amount of pounds doesn't really tell me anything. There are plenty of surgeons here in the UK for whom weight is not an issue - up to a point. But I have certainly nursed people in the 400lbs bracket (BMI 60).
 
Oh my goodness puffin, I so feel for you!:console2: I can't believe some doctors put such restriction for a much needed operation! Doctors must know full well that a person who is in constant pain can not exercise to lose weight, that being said you have done a wonderful job of losing 75lbs in a 1 1/2, that could not have been easy, congratulations on all that weight loss my BoneSmartie friend!:friends: I hope there is a way thatyou can find a new doctor, one that makes sense and cares about th quality of life, yours!
Plase stay well and try and stay positive, although I'm sure it must be hard at times. Please come here as often as you can to voice your frustrations and your concerns, we are here to help!:console2:
 
Wow Puffin, what a terrible predicament to be in...my grumbles about aches, and reduced function, seem quite trivial in comparasion. I am so sorry you are suffering in this way. Being forced to be so sedentary, makes weight loss so difficult, you have done amazingly well to have lost 75 lbs! I have no magic solutions to the problem, but the suggestions of Roy and Josephine, sound good. the main thing I think is to try not to lose heart, and to try to focus on what you have achieved When the spring comes, it may be easier to eat more lightly, we just want comfort food in the cold weather don't we.? Just keep on keeping on, you will get there, and you will always find encouragement here...everyone is so positive, it is such an emotional help!
 
Thanks for the replies it means a lot to have found this site as my rural farmhouse in the middle of the country is a curse with this injury - I only have 1 neighbour within 150m (the potato farmer) so most days I don't even see anyone other than family and crazy cats! The 2-3 feet of snow we have is also problematic as I cannot walk on it ...... :sad:

I have been happy with the medical care I have recieved here (less happy with the nursing care on the orthopedic emergency ward). I liked both the knee surgeon i had at first and the head of the knee replacement team that I see now - the latter himslef had a hip-replacement at 38 so he knows first hand. However Swedish medical care tends to be more conservative than other countries they tend to try to conserve joints/ligaments much longer than other countries so in Swedish terms I am considered extremely young to be having a knee replacement in a country where the average age for this surgery is 75. Also Sweden is a country with comparatively low obesity rates so there is less experience with operating on this group - I had to be shipped 200 miles to Stockholm for an MRI as there are only a handful of MRIs in the whole of Sweden that can manage patients over 150kg/330lbs/23½stone - so you can see there is not much experience/demand of obese patients. There is a prevailing feeling that as this is not a *medical emergency* it is best to wait for optimal conditions.

roy - distances are always huge here - my daughter does a 75 mile round trip to school - before my accident I had taken my journey for granted by driving to the station and getting an intercity train.

Josephine my height is 5'2½ (1.59 m) current weight is 289lbs. I started with a BMI of 66, am currently a 52 and the surgery target is BMI 47.5.
Should I also be worried that the swelling has not gone down from the original accident? The left leg is still around 5cm bigger than the right and I can still see residual brown marks from the 2010 bruising.
 
"Not a medical emergency". Hmmm, your posts indicate someone who's stuck in rather a viscous circle of damage, disability and further damage. Whilst that's not an emergency like a heart attack is, it surely is something that can only be broken by taking decisive action. And if that's not an emergency...? Not immediate, but certainly chronic and not going to improve. Can't you use this to put some life into them?


On weight loss, what you've done is IMO remarkable. And it's no surprise that loss will slow down, especially as you're forced to do it mainly by diet control rather than by exercise. It's teeth-grindingly frustrating I'm sure that the very thing that's preventing you exercising to lose weight is the thing you need fixing!

I hesitate to suggest (patronisingly) to one who's achieved so much, but I'll risk it. What about upper body only exercises, strengthening arms, back, stomach etc? These would make you stronger (which you will need after surgery), will build muscle mass that takes energy to maintain (don't worry, you won't look like a bodybuilder!) and will of course use up energy in doing them.
 
However Swedish medical care tends to be more conservative than other countries they tend to try to conserve joints/ligaments much longer than other countries
I don't believe that's the case. There is plenty of evidence in the UK, the US and elsewhere that the same applies.We get to deal with this regularly on BoneSmart.
I am considered extremely young to be having a knee replacement in a country where the average age for this surgery is 75.
Again, this is standard. Most countries have 70-75 as the 'average age' for joint replacement.
I started with a BMI of 66, am currently a 52 and the surgery target is BMI 47.5.
I see, yes I can understand the surgeon's thinking with those numbers. But very well done on the weight loss. That's pretty awesome.
Should I also be worried that the swelling has not gone down from the original accident? The left leg is still around 5cm bigger than the right and I can still see residual brown marks from the 2010 bruising.
5cm/2" isn't that much so don't worry about it. Given your other problems, it's to be expected that previously damaged tissues will readily and chronically swell.
 
Hi Puffin, So your BMI is nearly there...so near yet so far...but you have acheived so much already I am sure you will get there! and perhaps your surgeon having a target of 47.5 isn't too bad? When I met my practitioner last week, he told me that cut off rate set by the surgeons he could refer me to, is a BMI of 35 !! My BMI came in at 32.9, so I am just under...luckily. So I have to really watch it. It is so difficult to be active when your legs are screaming at you to sit down and give them a break!!!
 
Roy Gardiner - thanks for the suggestions. I try to build some upper body work into my water training using water dumbells and the water bike plus the general fitness of deep water running and the knee-specific work. I try to do 3 therapy pool sessions per week and each lasts 1½-2½ hours - a total of 5-6 hours. Your post reminds me that somewhere I have an exercise DVD called "Chair boxing for everyone" that I used to do in the wheelchair. So perhaps I should build in a couple of boxing sessions each week as well. Is there anything else I should do? I have some small handweights. I need to be a little careful as I have hypermobile joints which contributed to the accident.

Josephine - thanks of your comments that the doctors here are not being overly conservative. Some family/friends in the UK have expressed surprise that I have had no surgery yet - ie none of the original tendon ruptures/meniscus tears were ever surgically repaired.
The OS mentioned that the tendon ruptures and poor stability means that I will need (when I get to the TKR) a special type of knee replacement prosthesis - do you know what he means here?

ditzy dinah - thanks for your comments I do need to focus on how far I have come - the remaining 25 lbs (over 1½ stone) to hit the BMI target just seems like a lot when I am only losing ½-1lb each week - it could take another year!
 
puffin, if you want to tag someone, don't leave a space between the @ and their name else it won't work.
Also, do make sure you write the name correctly or you tag the wrong person!

Yes I think I know what kind if device he is referring to. It's a hinged model devised especially for cases like yours. RestAssured has one - I'll get her to come and tell you how it feels for her.

hinged 1.jpg
 
Sorry for the confusion Josephine - in this terrible brain fog today from lack of sleep and pain killers

Thanks for the information about the joint
 
Wow Puffin, just read your thread..you have taken me to Kurt Wallender country..the farmhouse, the snow, all the driving, the cheerless Swedish physicians and stolid bureaucrats. I am sure there is a good yarn in there somewhere. I am sorry that things have been so tough for you but frankly, you make most of us here look like wimps. You are doing everything you possibly can to ready yourself physically and mentally, you have a lot to be proud of. I hope you get a resolution to your predicament very soon. Sending love and support, Vicki.
 
Hello Puffin!:)

Well it looks like we have a lot in common!

For starters, let me say that I was 435 pounds when I had surgery and I am 5'9 inches tall. My OS told me I had a 50/50 risk of infection because I had MRSA (staph infection that is resistant to antibiotics 6 times before I had surgery.) I was walking "barely" with a wheeled walker and two braces on my legs! I told my OS I thought I had torn my thigh muscle because it hurt so badly. My OS listened to me and said, well we know the risks, but "Do you want to live a life of quality or quantity?" Thus begins the thread The Story of My Knees Parts 1, 2, and 3!

The first knee was a complete success! 6 weeks later, I was asking to be put on the list for the second, and so at 8 weeks I had the second. Well, I knew the risks and MRSA struck. It has been a long road but it has been worth it!:happydance:

I have gone from 435 to 308.2, and I am working out with a personal trainer 3 days a week and am in Physical Therapy 3 days a week! I have not felt like this since I quit exercising after college! I threw the shot put and discus and promised myself I would get back to exercising! Well, 23 years later I am! LOL:heehee:

The knee that Jo is speaking of is called the HK Smith and Nephew and if you get this one you will be amazed! It will take all types of "punishment", I am an "unofficial" tester and bounce right back! The regular knee revision implants are not for you because the trauma your leg has gone through would cause almost certain dislocation of the revision. The S&N will go swoosh swoosh and then you are right back in place! I have tried this sucker out more than any patient that Dr. Maale has. He only accepts the hardest cases and when I met him I was so sick with MRSA that he accepted me. By the time he operated, I was no longer sick, and I have been his "challenge"!:giggle: I am sure he will thank me for thoroughly testing this knee out, because they are logging everything that i do. He helped invent it and I am one of the case studies! :rotfl: I have done things with it that the manufacturer told him were impossible! I told him, well tell them they just don't know me, now do they?! :happydance:

If you need a friend who understands, or want to find out information, I am always hanging around. I am working on my Master's so sometimes Josephine, or Jamie, knocks me over the head to get my attention so people don't get by me who might benefit from the experiences I have had!

Keep in touch! We really do care, and I have been there done that, and worn out the t-shirt!:friends:

At my Heaviest 435.JPG T-Star 1-29-13 (13).jpg
 
So sorry that I am just now catching up with your story. You have been through so much!!! But, your accomplishment with your weight loss has been remarkable. Have you had a chat with your surgeon recently to see if maybe he could bend that requirement just a little based on how much you have lost? It might be worth a try.
 
Thanks again for all of the comments and ideas - I have had a few tough days as the injury pain has become worse as a result of the knee joint starting to twist and the nerve/swelling problem. I seem to be spend most of my days in bed icing or at the rehab pool. I have not managed to even do any work today as I got no sleep last night owing to the pain. Perhaps I need to contact the OS again.

@ RestAssured - thanks for your post. Your story is remarkable - I have read your threads - you have been so strong to go through so much and I am glad you are on the other side and improving now. I don't know which type of implant my OS is thinking of using so that is something to find out. What is the subject of your Master's thesis? I was also a student at the time of my accident as the accident occured the day before my PhD thesis was due to go to the printers. I was pretty stupid at the time as I delayed calling an ambulance for almost 24 hours in order to finalize my PhD.

@ Vida - yet definitely Wallander-like here even though I live further north. I am looking out of the window and all I see is snow covered fields, forest and a few wooden houses in the distance! I read all the Wallander books in Swedish at adult ed Swedish class for the Swedish literature exam. The bureaucrats from the books are just like my dealings with the sick-pay division of the Social Insurance Agency :rolleyes:
 
Puffin,

Thank you for your kind comments!

Wow a PHD! I have a friend who is working on her dissertation, and something has become obvious to me. I have no wish to be called "Doctor" LOL :heehee:

I am getting my Masters in Conflict Resolution and Reconciliation. I taught Reading and English for 20 years until I got tired of the robotic society they are turning teachers and students into to in order to pass a minimum qualifications test, that won't prepare them for the real world. . I did not get a degree to be a robot, I got a degree to teach! They have taken teacher creativity away, and everyone passes out the same worksheet in our district everyday. If the kids don't turn it in the next day, that is fine! They can have as long as they need! When these kids go out in the real world for their first job, their attitude is becoming, if I partied last night they should understand! After all the school did! :headbang:
 
RestAssured - it is really interesting what you write about education reforms and the lack of creativity. My subject is comparative public administration and the growing "tick-box" culture is a big issue. The Master's degree you are taking sounds fascinating.

I am totally exhausted today as I spend 2½ hours in the therapy pool yesterday and I think I have pulled a muscle in my "good leg"
 
I was wondering whether anyone knew if there were any particular issues that I should think about or plan for relating to TKR and having psoriasis and fibromyalgia?
 
I hope that one of the experts such as Josephine and Orthodoc or indeed anyone else could help me with advice

I am suffering from rapidly increasing pain and instability in my knee in the past 3 or 4 weeks and I was wondering if there was anything that I could do while waiting for TKR? My leg is no longer straight and my foot sticks out to the side which is increasing pain and making even limited standing/walking in the house very difficult as I can feel the bones sliding around with each step I take. Also I am suffering a lot of thigh pain which is new - I think my knee twists when I am asleep and there is a painful swollen lump on the outside of my left thigh.

I feel generally awful at the moment - the cumulative effects of not having slept through the night for almost 2½ years (since the accident) are really taking a big toll now and I am feeling dreadful and exhausted

I was wondering in the post above whether anyone knew if there were any particular issues that I should think about or plan for with my medical team relating to TKR and having psoriasis and fibromyalgia?
 
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