KNEE ARTHRITIS - Autologous chondrocyte implantation (A.C.I.) :
Feeling down can anyone help! waiting for ACI!!! - - Posted by Jules (Jules), 11 April 2004
Hi to all,
Haven't been on in a long time. Lots been going on. But the worst of it was... well call me thick but all I was ever told was that I had wear and tear in both knees... full stop.... now I know different!! I have chondromalacia patellae grade four in both knees (osteoarthritis!), more or less at its worst stage, there is a stage 5 but not much comparison! Felt like someone had told me I had cancer!! I'm only 38!!
I've had three bi-lateral arthroscopies and various xrays... why did someone not tell me years ago!! I've been complaining of knee pain since my early twenties!!
I feel I've been cheated on being able to loose weight at an early stage (which I have now), to take supplements, to try anything that could have slowed the process of deterioration down!
Not only that, I was told that I need ACI on both knees and have been on the list for Owestry for 7 months for my right knee and just 1 month for my left knee. I was told the waiting time would be 6-12 months, now get told that the list is totally booked till November (that would be 15 months waiting) and that I am still way down the list after that, it could be 2 years or more!! But my detioration has become very bad over the winter and can now only drive for a max. of half an hour, very difficult in climbing stairs and am contantly awakened at night with the dull aching!
And if thats not enough, I have been having pain in my right hip and ankle, have I got there too I ask myself!!
I am looking into having the operation abroad, but probably won't be able to afford it, I got so fed up that I've researched the NHS waiting time, and because of 'undue delay' I should be offered to go abroad, but I know the NHS has ways around this, by shifting you from one list to another, so your not on a set list for a long period of time. So in the end decided to write to the Cheif Excecutives of my local hospital who refered me to Owestry and to Oswestry Cheif Excecutive too! I am awaiting a reply. Also have requested my notes to see if I was diagnosed earlier on but not told exactly what it was.
If anyone has any ideas of getting up the list quicker, advantages or anyone I can get in touch with about going abroad I would be very grateful.
Also I would like to hear from others who have had ACI and how long they had to wait for surger from their consultation date.
Or just a friendly note to cheer me up would be grately appreciated.
Thanks
Happy Easter to All.
Jules.
Posted by heather_k (heather k from wales), 11 April 2004
When my knee was locked and I was told that there was nothing wrong with it, I seriously considered going abroad for private surgery. I'd even arranged a date.
Luckily I managed to get an urgent appointment to see my regular OS 3 weeks after it locked!. He operated later that day, under the NHS, saving me a heap of cash and alot of pain.
Good luck,
Heather
click on the link below for info on surgery abroad.
http://www.surgeryabroad.net/
Posted by richie (richie), 14 April 2004
Hi there Jules
I have had aci under the NHS in Manchester. I was part of a clinical trial so got in to surgery about six months after being put on the list. I am 29 and have had my left knee done. I am five months post-op and things are going well, just starting to run again.
I think it is a long time to wait for surgery at Oswestry and would suggest being referred to a hospital that is curently doing the NICE trial for the NHS.
www.nice.org.uk
Richie
Posted by Jules (Jules), 16 April 2004
Thanks for your replies, I've looked at the Nice web page, can't find which hospitals that are participating in the NICE trial though. Six months is very good going, I've been waiting nearly eight already! Perhaps I should enquire at the hospital you went to, can you give me the address and consultants name, I'm going to see my local surgeon next thursday, so he may be able to refer me.
Thanks
Jules
Posted by Sarge (Sarge), 16 April 2004
Hi Jules...
Are you taking anything for the pain? I was on an anti-inflammatory called "mobic" 15mg (meloxicam) which I took daily..really helped the pain. Since the op on my right knee last year, I still have pain in the left and only take Mobic as required now.. every two or three days..
As for the waiting list, come out to Melbourne.. no waiting list if you have private health insurance here.. might be worth investigating.. nice holiday while you are at it!
Posted by Jules (Jules), 18 April 2004
Hi Sarge,
Yes I am taking voltrol 100mg and co-codamol 30/50 daily, try not to take it though as I hate being dependent on pain killers, though its been more difficult not to take them lately.
Love to come out to Melbourne and get it done, looked into private health care, they won't touch me as it is a long pre-exsisting problem. Believe you me I've tried everything, still waiting on care abroad and some quotes, but don't seem to be getting back to me.
Owestrys cheif exec. wrote back and said she was looking into my situation on the waiting list, haven't heard anything from my local hospital as yet.
Going to have a read of my notes tomorrow (Monday) to see if it reveals anything that they haven't told me, just be an interesting read.
Keep you informed, if any further ideas, I'd be glad to hear about them.
Jules
Posted by cat123 (cat123), 20 April 2004
Richie
Can you tell me more about your injury, i am very surprised to hear you are starting to run again so soon as i thought it was about 1 yr before any weight bearing exercise, were you a runner prior to your injury if so and you make a comeback i would like to follow your progress as i would love to get back running after surgery.
Carol anne
Posted by richie (richie), 21 April 2004
HI Carol Anne
I had a 1cm defect in my lateral femoral condyle. The major problem was that my meniscus was getting trapped causing my knee to lock. With the benefit of the added cartilage it is hoped that this will help to alleviate this.
I am currently just over five months post-op and have been running in the gym under supervision. I can start running outside in about a month but so far no real problems apart from an abnormal running pattern which i am sure will come back.
Originally my injury was from a tackle in football about ten years ago but i kept playing and running up until the harvest in october. I would suggest getting in peak condition before the op as muscle wastage is fairly quick. I am hoping that after a year i will be back playing football again and contact sports at this time when the cartilage has fully matured.
Have you had your op?? Is so or where are you havining/had it? How did you get your injury?
Just shout if you want anymore information about either the op or recovery.
cheers richie
Posted by cat123 (cat123), 22 April 2004
Hi Richie
I was a runner until about 3yrs ago training twice a day most days then knee just went as if i was hit with a brick during a run, after a few months it settled but never got better. Now my knee has good days and bad wks, i go to the gym 4 times a wk to keep my weight down. As for the op , my surgeon is waiting on permission as its clinical research and this will be his first time, as far as i know it has not been done in Glasgow Uk before. My problem is articular cartlige worn away, bone on bone at a weight bearing part of my knee, thanks for your info.
Carol anne
Updated Mon Dec 1 2008