BoneSmart® Hip / Knee Replacement Forum
Joint Replacement Patient Advocacy
and Online Community
  1. Announcing BoneSmart's NEW Joint Surgeon Locator tool

    We are pleased to now offer a tool to help you find just the right surgeon for your needs. If your surgeon is not listed, please let us know and we'll get them added.

    Read more about this in this announcement:

    Dismiss Notice

Comments / Information / Advice most welcome

Discussion in 'Knee Replacement Pre-Op Area' started by Michele, Jul 25, 2008.

Thread Status:
Not open for further replies.
  1. Michele

    Michele junior member
    Thread Starter

    Member Since:
    Jul 24, 2008
    Messages:
    41
    Location:
    UK
    Hello and thanks to you all for writing such interesting and useful information. Just wanted to write in because I am now at my wits end, I am 45 years old and seem to have suffered with my knees for an eternity, in fact my first problems started at the age of 13 when I remember having my leg plastered as my muscle and bone were separating. I then between the ages of 15 and 17 had three FULL cartilages removed which is the reason I am where I am now. Due to 30 years wear and tear both my knees have arthritis to varying degrees, my right being the worst. Three years ago I was referred to my private healthcare hospital thinking it was my final cartilage causing the problem as I had severe pain on the outside of my right knee, I was shocked to be told that this wasn't the problem. Due to removal of the inside knee cartilage the pressure on the outside cartilage had totally worn it away and now the bones were rubbing causing bone spurs to start to appear at right angle to the bone. I was advised I needed a TKR but this was not covered by that hospital I would have to be referred back to NHS, I was and have been advised by the NHS doctor that yes I do need a TKR but they are reluctant to do it because of my age. This was 2.5 years ago and yes in some ways at the time I could understand the reasoning behind it. I struggled on for another 18 months the pain and the flexibility of my knee getting worse by the day. In March of this year I went back informing them that it was significantly worse although following an X-ray was told that the actual condition had not got that much worse. He suggested we try steroid injections and to be quite honest I was so grateful that something was being done I did not ask as many questions as I should. To my great relief after approx 2 weeks they had a positive effect. It wasn't perfect there was still slight pain but I was ale to walk most of the time without a limp and my mobility increased. This lasted for approx 9 weeks and then back to square one! I waited to have my next appointment until 2.5 weeks ago as I am going on holiday next week and wanted to be able to enjoy reduced pain and increase my mobility of the hol. The doctor asked me if I was desperate for the operation I said desperate 85% of the time he said that was a good answer and when it was 100% he would consider doing the operation reluctantly. I gave this answer with the view that I was going to get relief from the injections, BUT sadly they have had no effect as yet and I am devastated. I can drive for no longer than 10 minutes and even then the pain is sometimes unbearable. My main problem apart from the intense pain is the fact that if I either sit or stand for more than 15 minutes it seizes up and then I spend the next half an hour hobbling around just managing to put one foot in front of the other. The pain wakes me up in the night and just my day to day living is so badly affected.
    I am obviously taking pain killers by the box sometimes they seem to help slightly other times not at all. To sum it up I am worried that if I have the operation it will cause me problems in the future as I am led to believe that depending on my life span I will probably need at least 2 maybe 3 TKR but to be quite honest I have little quality of life at the moment due to the pain and limited mobility and I am also worried that my already damaged left knee will deteriorate at an increased rate due to the extra strain it is under. Its my family that keeps me going and I want to be physically able for years to come. Any comments / information / advice are most welcome. Thanks for your time.
     
  2. AlaskanTKR

    AlaskanTKR graduate

    Member Since:
    Jun 2, 2008
    Messages:
    553
    Location:
    Palmer, Alaska
    I am 42 and just had my right knee done. Can't say that I am to the point where I can say it has paid off - I am less than 2 weeks out - but - already the joint itself feels different and there is no pain there. Just having problems with regaining rom - which will come with time and work. I have been with this OS for 6 years and the office for 7. We have watched the knee deteriorate to a point where we had no alternative. After my last scope I lost 100 pounds using the treadmill and a sensible diet. I loved my treadmill until I had 2 falls this winter outdoors and totally screwed up the rest of the knee. I have been bone on bone for a few years but this past 6 months has been the worst. I thought I was heading for synvisc or matbe a pkr but when he looked at the xrays - TKR was the response. I am so thankful I found this sight and its wonderful members! The OS and I dsicussed the revision issues since 4w is young. He has started to see the length of the knee lasting 20 years and hopes I am one to beat the odds and get even more time out of it - but if not - I will deal with it - in the mean time I want to live my life and enjoy it - one never knows when one's number is up!

    Hang in there and think about te quality of life. I was fortunate because while we made this decision when I had not planned it - it fit into the summer schedule perfectly and I had no need for time off from work ( I am a teacher) and I should be able to make it through the first 2 weeks of school more easily since I am a Special Education Teacher.

    Good luck -
    Marianne
     
  3. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

    Member Since:
    Jun 8, 2007
    Age:
    77
    Messages:
    84,911
    Gender:
    Female
    Location:
    The North
    Country:
    United Kingdom United Kingdom
    Michele - I live in the UK too. Tell me whereabouts you live and which hospital you were referred to. I'll give you some recommendations.
     
  4. Michele

    Michele junior member
    Thread Starter

    Member Since:
    Jul 24, 2008
    Messages:
    41
    Location:
    UK
    HHello Josephine, I live in Kent and was referred to Darenth Valley Hospital. The consultant is very good and explained clearly the reasons for his reluctance but fortunately for him he does not have to live with this extreme pain and disruption to quality of life. I have to think twice before I do anything even something as simple as going out for a meal as when I get up I can hardly walk. My knee is very unstable and randomly gives way which has really knocked my confidence. I am a large lady which I know doesn’t help but its catch 22 - I can’t do any walking or much exercise as it is too painful.
    The consultant did mention doing an arthroscopy once the injections became ineffective but I am not sure if this will improve things. I am very disappointed about the steroid injections this time, although a colleague of mine has just had a TKR and said that his injections only worked for a couple of times – Why is this?
    Any advice is welcome, I am going on holiday next week and the thought of a 4 hour flight is filling me with dread as I know I am going to struggle when I have to get up, any advice for this please.
    Many thanks
    Michele
     
  5. Doug

    Doug alpha

    Member Since:
    Dec 28, 2007
    Age:
    65
    Messages:
    5,275
    Gender:
    Male
    Location:
    Florida
    Country:
    United States United States
    Michele, prior to my TKR in January, I had cortisone injections for 6-8 months. I thought the first one was a miracle cure as it lasted for about one month. Subsequent injections provided progressively shorter relief. Then I had the series of three synvisc injections. No help either.
    I also spent most of the previous year taking prescription pain meds.
    The TKR operation and recovery, although rough for the first few months was the best think that has happened to me in years.
    Best of luck with it.
     
  6. Rowdy66

    Rowdy66 graduate

    Member Since:
    Feb 18, 2008
    Messages:
    674
    Location:
    United States, SOUTHERN ARIZONA
    I feel so sorry for you younger adults who are being put off for the surgery and allowed to live in pain. If a doctor actually knew first hand the terrible pain a person who needs a TKR goes through there would be no hesitation on the surgery, no delays and none of this you are just sooooo young. You get old fast when you live with pain day in and day out. I know, I have lived with back pain since I was in my mid thirties and am now almost 67. I might add that for me the back pain was insignificant compared to the pain in my knees when they suddenly began to hurt and I found out they were already bone on bone. Someone out there needs to get through to these doctors, in my opinion. There is no excuse for a person to live in as much pain as I hear in the posts of the younger members of this site express. It just wears you out and steals the best years of your life. Mothers and fathers who have younger children are being robbed of doing the things with their children that make up the memories that sustain a family. I would urge each and every one of you to look for doctors who are good surgeons but also understanding in what we have to go through when we need new knees. From what I understand the new prosthesis last way longer than the older ones did and with the nylon pad that is replacable the surgery when it has worn out is nothing as compared to the tkr, all they have to do in most cases is replace the pad. To me 85% sure you want and need a tkr is good enough for a surgeon to proceed. I will continue to pray for the relief of pain for all of us who have had or who need joint replacement surgery. Rowdy
     
  7. Michele

    Michele junior member
    Thread Starter

    Member Since:
    Jul 24, 2008
    Messages:
    41
    Location:
    UK
    Thank you all for your advice and comments, it's very true but the more I think about it I should be pushing for a better quality of life now - not in 20 years time. Please can anyone advice what the synvisc injections are that I have seen mentioned, the injections I had were something beginning with K (I think) I did look it up at the time and it was widely used in Osteoarthritis, like you I was so pleased at the pain relief they gave the first time. I will stay positive and hopefully the affect of the latest injections may just be taking longer – Lets hope so anyway, thanks again.
     
  8. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

    Member Since:
    Jun 8, 2007
    Age:
    77
    Messages:
    84,911
    Gender:
    Female
    Location:
    The North
    Country:
    United Kingdom United Kingdom
    Great, Michelle! How do you feel about getting to Stanmore Middlesex? The Royal National Orthopaedic Hospital is there and they will, I am sure, do your knee for you. It's about 46 miles from you.

    Your local surgeon may be extremely nice but that means squat if he is not prepared to sort you out.

    All you need to do is ask your GP to refer you there for a second opinion.

    This is your right.

    The names to mention are Professor Cannon and Mr Briggs. They are the joint replacement specialists there. It will still be NHS, so don't worry about that. And the government are shortly bringing in a rule whereby patients can choose what hospital they want to go to.

    I worked at Stanmore for about 2 years just before I moved up north in 99. I know both those men and they are excellent surgeons.


     
  9. Michele

    Michele junior member
    Thread Starter

    Member Since:
    Jul 24, 2008
    Messages:
    41
    Location:
    UK
    Thanks for the info Josephine, I do know Stanmore Hospital actually as my son was referred there following an Injury and operation in another local hospital on his knee that has damaged it permanantly. I will give your recommendation serious consideration. I am planning on going once more to see my local surgeon and telling him that I am certain that I want it done now (that is of course if the injections don't kick in - excuse the punn!!) Do you know why the injections wouldn't work this time??? If he is still reluctant I will asked to be referred for a second opinion.
    May I thank you and all the contributors to this site and forum, the information I have read has really given me hope that there will be an end to this chronic pain.
     
  10. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

    Member Since:
    Jun 8, 2007
    Age:
    77
    Messages:
    84,911
    Gender:
    Female
    Location:
    The North
    Country:
    United Kingdom United Kingdom
    Mind you ask your GP for the referral, not the local consultant.

    To be honest, I don't see him changing his mind so I would recommend your cut your losses and get sent to RNOH as soon as you can. You know you're going to have to wait about 3 months for an appointment there so why waste time with a surgeon who's already shown a disinclination to act?

    The injections don't work because the joint is too far gone. In order for steroids to work, there has to be a fair amount of normal healthy tissue.
     
  11. JudyS

    JudyS alpha

    Member Since:
    Apr 25, 2008
    Age:
    62
    Messages:
    5,261
    Gender:
    Female
    Location:
    Southern California
    Country:
    United States United States
    Hey Jo
    Thanks for the steroid info. I was wondering why the first worked a little and the last 1 hurt like crazy going in and did nothing.
    Judy
     
  12. AnetMarise

    AnetMarise junior member

    Member Since:
    Jul 14, 2008
    Messages:
    55
    Location:
    Oregon, United States
    I agree with Josephine. You have to be proactive on your own behalf. I am 47 and they have been making me wait for the last 17 years. I had had 6 surgeries (3 each knee) by the time I was 32

    I went to my os and begged him for bilateral kr at age 45. I told him that it was impossible to exercise and my weight continued to climb. He sent me to an intensive physical therapy program to strengthen my legs and get my balance back. I followed that by joining a gym and losing about 45 lbs. In the meantime I had cortizone injections every 4 months. Sometimes they worked a week sometimes a month. Never could predict that. For the last year I was using Vicodin every eve. Finally, he relented but would only does one knee at a time - he refuses to do both. He let me pick which knee to start with. I had my right tkr on June 23, 2008. I am just 4.5 weeks out and it has been tough - however I have more hope than I ever had about regaining my life!

    Annette
     
  13. carolinagirl

    carolinagirl senior

    Member Since:
    Jun 14, 2008
    Messages:
    290
    Gender:
    Female
    Location:
    Southeastern US
    Hi Michele,
    Welcome! I am 49 years old and I had a right TKR on July 3rd. Best thing I have done! Sure its tough the first couple of weeks, but I am going into my
    4th week and feeling better all the time. I was in my 30's when I was told I had arthritis in my knees. In 2003 my OS told me I was almost bone on bone.
    But that he wanted me to wait until I was in my late 50's to have a replacement done. Well, this year my knees were worse than ever. I went back to him (he had already scoped both knees, one in November 07 and the other this January for meniscal tears). All cartilage was gone, but he still wanted me to wait until I was in my late 50's. So I went for a second opinion!
    In fact the OS I went to was his former business partner!
    I asked my current OS do I need to wait for another 7-8 years? He simply asked me "why on earth would you want to live in this pain for even another month much less 7 to 8 years?" He took one look at my x-rays and asked me how are you walking? Nuff said, he scheduled my TKR for 3 weeks later!
    I feel soooo much better. Sure I have some pain, but NOT THE PAIN I HAD BEFORE THE SURGERY!!! Please get another opinion. Life is way to short to live in that kind of pain. We only get one shot at life, do whatever is in your power to make sure you enjoy it!
    Sure I felt a little guilty going to another OS, but then that thought went right out of my head. After all this is MY body, and there is no way I was going to live another day in pain if there was something I could do to stop it.
    There are surgeons who will do replacements at your age. Keep looking.
    Best of luck to you in your journey!
     
  14. Michele

    Michele junior member
    Thread Starter

    Member Since:
    Jul 24, 2008
    Messages:
    41
    Location:
    UK
    Many thanks for your advice, I am finding it so hard to be pushy, I have a slightly better day (although not many lately) and say to myself things aren't so bad you can live with it there are people far worse off than you but then I have a normal day of pain and embarrassment caused by it giving way or not being able to get up from a sitting position independently. I think my pain threshold is very high but then I question myself saying ‘Is it so bad Michele?’ My family are getting angry because I am ‘putting up with it’ they don’t like to see me suffering the way I am.
    Thanks again and good luck with your recovery.
     
  15. Michele

    Michele junior member
    Thread Starter

    Member Since:
    Jul 24, 2008
    Messages:
    41
    Location:
    UK
    Hi Everyone

    Just wanted to share the great news that I have just returned from the hospital and the consultant has agreed to operate. He plans to do an arthroscopy to decide if he will just replace the knee cap or do a TKR, whichever he decides it will be done at the same time as the arthroscopy, I have requested early January as this fits in with my work commitments as I work in a school. Has anyone had just a knee cap replacement? If so was it a success?
    Josephine -Please can you tell me how succesfull just a knee cap replacement is? is it only used if the other bones are not too badly damaged? What is the recovery time for this op? He wont just do this to save money - will he?????
    I feel that a great weight has been lifted from my shoulders, obviously I am nervous like anyone would be but I am so pleased that this extreme pain will soon be gone and I will be able to do the activities that a 46 year old should be able to do.
    Best Wishes to All
    Michele
     
  16. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

    Member Since:
    Jun 8, 2007
    Age:
    77
    Messages:
    84,911
    Gender:
    Female
    Location:
    The North
    Country:
    United Kingdom United Kingdom
    I forgot to answer your question about the Synvisc - this actually isn't a steroid but a substance that tries to replace the synovial fluid which is the natural 'oil' that lubricates the joint. As the arthritis also damages the synovial membrane (a special lining on the joint capsule that produces the lubricant) the membrane stops producing it in sufficient quantities and viscosity. Synvisc attempts to fill in the gap, so to speak.

    But the reason for it's not working (if you had it) is still the same.


    As for the patellar button, yes I have seen it used on very rare occasions as it's not common to see arthritis confined to the femor-patellar compartment though it can happen. So far as I am aware, it can be very beneficial and buy you some good time before (if) you'd need a bigger job done.

    And no - he most definitely would NOT do this to save money! No surgeon I have ever known has put a hospital's budget above the interests of the patient! Not nohow! Not ever!
     
  17. Michele

    Michele junior member
    Thread Starter

    Member Since:
    Jul 24, 2008
    Messages:
    41
    Location:
    UK
    Thanks for that reassurance Josephine - Have you any idea on the recovery time if he decided to take the replacement patella option ? Is the scar the same and would taking this option have any detremental effect on a TKR if required at a later stage.
    Again many thanks
     
  18. patfinch

    patfinch member

    Member Since:
    Sep 12, 2008
    Messages:
    110
    Gender:
    Female
    Location:
    Lancashire
    Country:
    United Kingdom United Kingdom
    HI michele,
    I too like you am only 49 and all was well until I damaged my knee last March in a fall at work, I was in ever increasing agony, until in September I literally could not walk.In fact I could not stand without being in pain
    I had an arthroscopy to tidy up the damage, but was unfortunately found to be bone on bone by this time.
    I got slightly better then worse again, and had to go sick in April.
    I was seen by my surgeon, who suggested steroids/TKR
    As the TKR was inevitalble, I opted to go straight for it.
    I had my op on 5th August, and already feel the benefits....no pain.......joy on joy
    My knee is still stiff after sitting a while, but once I get it going, it's fine...
    If you have read my other post, I bought an exercise bike last week, and despite never having ridden one in my life........me and my new friend are getting on famously.
    Of course its not all plain sailing, and some days are still not good, the first few weeks being totally dependant on my family really got to me as I am usually the one who everyone else turns to, so with the tables turned I felt really awkward asking for help.
    I'm more independant now, and life is looking good......
    If you want my advice...then go for it girl.....you only get one life SO LIVE IT

    Hope you do the best thing for you..I know I did !!!!

    love and hugs Pat xx
     
  19. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

    Member Since:
    Jun 8, 2007
    Age:
    77
    Messages:
    84,911
    Gender:
    Female
    Location:
    The North
    Country:
    United Kingdom United Kingdom
    Michelle, the op will have to have approximately the same sized incision to get access but since there won't be any major bone cutting or interference with the ligaments and muscles, your recovery should be faily quick and your need for pain killers afterward of less duration. Plain sailing, I'd say.
     
  20. carolinagirl

    carolinagirl senior

    Member Since:
    Jun 14, 2008
    Messages:
    290
    Gender:
    Female
    Location:
    Southeastern US
    Michelle,
    I am so happy to hear that something is going to be done for you!
    I wish you all the best!
     
Thread Status:
Not open for further replies.

Share This Page