KNEE ARTHRITIS - Autologous chondrocyte implantation (A.C.I.) :
Who has had both ACI and HTO? - - Posted by Lizzie (Lizzie - UK), 15 January 2005
Hi to everybody on the Kneeguru, I've not been on here for a while. Been through hell and back last year, staying in hospital many times; one stay was 41 days!!!
I've been diagnosed with not just Hypermobility Syndrome, but also Fibromyalgia (Chronic pain and fatigue syndrome), along with bicep tendonitis and bilateral OA in my knees.
I saw Mr Tim Briggs at the Royal National Orthopaedic Hospital in Stanmore, Middlesex this Wednesday gone and he is sending me to have an MRI, as he is thinking that if the articular damage is just on the medial side, he will do an ACI as well as a HTO.
I was expecting this to be the case when I saw Mr John Skinner last May, but he just said that I needed to loose some weight and that I had femoral anteversion and tibial torsion!!! He discharged me and that was that.
My surgeon wasn't too happy as this wasn't the guy that had referred me to at the RNOH. Unfortunately, he had referred me to see Tim Briggs, but I had already been to see my GP to get a second opinion on my knees and John Skinner's appointment came first, so they cancelled the appointment with Tim Briggs because his appointment was later on in the year. (If only I had seen Tim Briggs first!!)
I've had xrays taken off both knees and my pelvis and hips. I've now had long leg xrays and I am now waiting to have an MRI. The waiting list is 22 weeks!! Can you believe how long that is? As soon as I get a letter with the appointment, I'm going to call them to see if I can get a cancellation, as I am only 40 minutes drive from the hospital, whereas some patients have much longer journeys, eg, 2-3 hours if not more; so there should be a high percentage that I will be able to get a cancellation before the 22 weeks. 22 weeks is just too long for me to wait after all this mucking around with my knees, as well as the Fibromyalgia; I am in way too much pain.
I'm currently on 75mcg/hour Fentanyl patches, which I wear over 3 days. The dosage is equivalent to 280 mg Morphine over 3 days. I discovered that I was allergic to Morphine, when I was admitted to hospital after I had had a fall and damaged both my knees and my back. My back went into spasm and I experienced pins and needles and numbness in my feet and hands. I had to stay in hospital for 41 days and ended up having surgery on my left knee as I had torn my medial meniscus AGAIN!
Well, if you have got to this point, then you deserve a medal. WELL DONE and THANK YOU SOOOO MUCH. What I want to know is how well did the surgery go.
I know that there are 2 stages to the procedure, ie, first stage is the arthroscopy to remove the chondrocytes that will be sent away to Verigen laboratories where they will harvest the chondrocytes. This will take approximately 4 weeks.
Stage II is when they will do the open surgery. I would just like to know what happens here and also what do they to with the HTO. I know that they will break my tibia and take a wedge out, but I want to know the rest.
Will they put my leg in a plaster cast? Or will they do an internal or external fixation, along with the open surgery for the ACI?
I know that if I have the surgery, I will have to work extremely hard with the rehabilitation; I just want to know from a patient's point of view, what they have to do. I am not one that will slack on doing my rehab. In fact whenever I have had surgery, I am usually doing my SLR's as soon as I come round from the anaesthetic, even if I am in pain. In fact the last surgery I had, I didn't have a general anaesthetic by option. I decided to have a spinal anaesthetic; it was great - no sickness. That is the bit I usually hate.
So can anyone help me out with their past history.
TIA
Love Lizzie
Posted by JulianUK (JulianUK), 17 January 2005
Lizzie,
I'm sorry I can't help you with the HTO, but I'm on my second MACI operation under Tim Briggs' team.
I had the first 18 months ago and had to have the patella and medial femoral condyle grafted. I'm now 3 months down the line with my right leg, having had my femoral condyle grafted in October.
I can certainly recommend the MACI procedure for cartilage defects. The rehab is hard and recovery long and slow, particularly if you have your patella done as well. My right leg has progressed a lot quicker and I've been walking for a week off crutches with no real problems. Just got to build it up slowly.
At the second stage they have to make an incision, mine was about 4 inches. They make a glue out of your own fibrin and stick the new tissue over the defect area.
Then they put you in a back slab cast, two days later they change it for a full leg plaster cast and let you go home the following day.
NOTE: Both times I got a haematoma once the cast was done and it had to be cut down and re-done the next day. This is because they don't put a drain in. If you can get them to wait a couple of days before re-casting you then push for it. I can't tell you how painful it is, it made me physically sick with the pain.
Other than that it's back after 10 days for the cast to be removed. Non-weight bearing for 6 weeks and then partial weight bearing for 4 weeks after that. Then build up the walking slowly.
You must be careful to avoid any weight bearing when your leg is in a bent position, and lateral movement that might cause shearing forces in the knee. As it is easy to tear off the graft.
I have to say I haven't had all the other problems you've got, but nevertheless this is definitely worth going through if you have cartilage defects that prevent you from walking without discomfort.
Hope this helps you and if you need anymore assistance then just ask.
kind regards,
Jules.
Posted by Lizzie (Lizzie - UK), 17 January 2005
Quote:I have to say I haven't had all the other problems you've got, but nevertheless this is definitely worth going through if you have cartilage defects that prevent you from walking without discomfort.
Jules
Thanks for your reply. In fact, I find that I have discomfort from standing, let alone walking! 
So, what do you think of Tim Briggs? I found him to be a really nice and friendly guy. He listened to all what I had to say about my knee history and was interested in hearing what I had to say. Not like some of the medical professionals you can meet. Although I am lucky enough not to have to deal with too many conceited (sp?) ones.
Can I ask whether you had your procedure and everything through the NHS, or did you go privately?
My private medical insurance does not cover MRI's and the physiotherapy is only up to a £500 limit, which is next to nothing, especially if I am going to go ahead with not only the ACI, but also the HTO.
To be quite honest, I'm not too bothered about the ACI, it's just the thought of having my tibia broken and a wedge taken out - ouch - as I have never broken a bone, I don't know what the pain will be like, but saying that - the pain that I have with Fibromyalgia is supposed to be equivalent to pain that you would suffer from broken bones.
I am also fearful that my pain medication will be under cover. I have to wear Fentanyl patches. These are patches that have an analgesic equivalent to Morphine in. I found out in my 41 day stay in the Orthopaedic Ward of my local hospital that I am allergic to Morphine. Luckily I was able to see an acute pain nurse specialist and she got me on the Fentanyl patches. These stay on over a period of 72 hours and the dose that I am on is equivalent to 280 mg of Morphine over the 72 hour period. I just want to make sure that the pain medication will cover my Fibromyalgia as well as the post op pain.
You say that you were in a cast. What were you in after the cast. Did you get put into an immobiliser brace too?
How many days in total did you stay in hospital? I've been told that I will probably stay in hospital for a couple of days for the first stage, mainly because of the Fibromyalgia. For the second stage, I was told that I might have to stay in for at least a week and that is nothing to do with the Fibromyalgia. Is that normal?
Sorry to ask so many questions, but I just want to make sure that I have everything in my mind cleared. I remember when I first had surgery to my knees.
I underwent a lateral release as the third op I had had in my knee history after having 2 arthroscopies before. I went in having the surgery thinking that I would be back to work after a maximum of a week. I had no idea that I would have to wear an immobiliser for 8 weeks and the rehabilitation that I was going to have to have to was going to be so painful and so unbearable.
So now, I make sure I know everything I can before I have any surgery. It is a good guide to stick to. I would recommend that everyone that is thinking about surgery knows this.
Sorry if I keep rambling on as well. I keep getting brainfog and forgetting what I wanted to say.
Posted by sherry34 (sherry34), 19 January 2005
Hi Lizzie,
I had ACI and a HTO, done on Nov. 29,2004, I still am not bearing any weight on my left leg. I go back to my os on Feb. 7th, he says then he will begin to let me put 25% body weight on it and gradually build up, I will also begin therpy then. I won't lie , it is painful, but it is managable, I really think that the first 3 to 5 wks. was the worst, I still have pain where they did the HTO, but not constant pain. It does make the recovery longer, I am due to go back to work on Feb.22, my doc. say he may release me to go back part-time, depending on how well I do with bearing weight on it, at this point I still cannot straighten my leg, I have tried, but it is just to painful. According to the book they gave me at the hospital I should have been able to straighten it by the 3rd or 4th wk. I do the excercises that I was told to do. This is pretty much the only time my leg hurts, unless I happen to do something, that causes pain, It does still ache at night, but thats pretty much the whole knee.
I wish you luck ......
Sherry
Posted by Lizzie (Lizzie - UK), 20 January 2005
Thanks Sherry for your response.
How long was your surgery?
How many days did you stay in hospital?
Did you have a cast, internal, external fixator?
How large is your scar?
I hope that you don't mind me asking all these questions, but you seem to be the only one that has had both the ACI and the HTO together.
I wish you well and hope that the pain diminishes during your pt
Thanks
Lizzie x
Posted by blue_ezzie (blue_ezzie), 20 January 2005
Hi Lizzie,
I haven't had the two operations together, only MACI, but just wanted to add two cents on the rehabilitation side of things - to me it seems that experience with this operation depends on not only your injury/condition and country, but even what surgeon you see! I'm in Australia and was in hospital for one night after the ACI and was placed in a brace that could move 0-15 degrees. Others in Australia have been in hospital much longer, have had their leg totally immobiled, or have been on a CPM machine. My sister had the HTO and was in hospital for one night and was placed in a locked extension brace.
The physiotherapy side of your rehabilition is really, really important - more so than the actual operation. I know it hurts financially but I don't think I could have recovered the way I have after the operation if I did not have physio three times a week for several weeks afterwards, although several people on this board have done home physio and also recovered well. It's definitely worth factoring into the cost and thinking about raising the funds for it - I found physio acupuncture and massage really important, as this can really help with swelling. I also found the motivation that going to the physio can provide.
Ask lots of questions of us and of your surgeon...and never hesitate to get a second opinion from a surgeon if you are unsure! You are so right that being prepared, both physically and mentally, is so important for this operation. You need to take the time out afterwards to recover and being prepared for this is so important.
All the best!
ezzie
Posted by sherry34 (sherry34), 20 January 2005
Hi. Lizzie,
I don't mind answering any questions, My surgery was 4 1/2 hrs. long. I only stayed in the hospital for 24 hrs., I came home the next day. I didn't have a cast , my leg was wrapped and in a brace until they put it in a cpm machine. My scar(HTO) is only about 3 inches or so long and my ACI scar is about that long, they did use the GPS thing when they did my surgery , It is suppose to cut down on pain and help with recovery time, don't get me wrong it was still painful, once you get the pain meds started and keep the pain under control its not that bad. A few times I would sleep through, and my husband wouldn't wake me up when it was time to take a pain pill, and I would wake up in alot of pain, I guess he thought as long as I was asleep I didn't need anything, It only took a few times for him to realize he needed to wake me within 3 or 4 hrs. If you want to know more about the GPS look up this website:
www.visittoc.com
click on TOC news at the top of the page, then scroll down to where it says, Dr. Greco and Dr. Davis featured on channel 19 checkup, click there it will take you to it, click on the video under the reporters picture(kim richardson), Dr. Davis is the surgeon who did my surgery.
If you have anymore questions , feel free to ask ok, I will be glad help if I can. Good Luck
Sherry
Posted by Lizzie (Lizzie - UK), 20 January 2005
Oh WOW - you guys are just the best. I thank you for taking the time and effort to reply to my post. I really do appreciate it.
I will have to have a look at the site that you have given me the link to Sherry.
My main concern is the pain. I already suffer from chronic pain and fatigue syndrome - Fibromyalgia. I'm just worried that they don't know much about Fibromyalgia and will under dose me. I am already on an extremely high dosage of pain medication.
I take these Fentanyl patches that look similar to cigarette patches, well, this is what I have been told. I didn't use them when I gave up smoking over 3 and a half years ago. The patch remains on your back or upper arm for 72 hours and it is similar to 280mg Morphine, so a fair old whack of analgesia.
When I was in hospital last, I was on 25mcg/hour of Fentanyl and was being given Pethidine as and when I needed it.
I know people say it is a lot of mind over matter, but when your brain is receiving false messages, there ain't much you can do about it.
I will definitely take everything that you have said onboard. It is always the most important thing to read up as much as you can before you sign the authorisation form to have the surgery.
Anyone that is reading this and thinking of having this procedure, or any other procedure done. You can always say that you have changed your mind up until the last minute. If you are not quite sure, then you are more than able and in all your rights to cancel. Just make sure you know what you are going to be letting yourself into as much as you are able to. You never know what you will be like after the surgery.
Excuse me if I am rambling, I find that I do this!!lol 
Posted by JulianUK (JulianUK), 20 January 2005
Lizzie,
I'll try and answer your questions;-
First of all, Tim Briggs is really nice although my second leg was done by Mr Pollock, part of his team. He was even nicer and took time to see me every day - never had that from a consultant before.
I was lucky that my hospital has an arrangement to refer people for this trial under the NHS, so didn't have to pay. So I also got physio under NHS as well. On this point make sure your PT understands the rehab protocol. Mine is brilliant and he has even gone on a course in Cananda all about ACI/MACI (paid for his own flight as well!).
After the cast comes off they don't even put you in a brace. This is to get you mobilised quicker, but I think I would prefer a brace for the first 6-8 weeks just to prevent lateral movement and risk tearing the graft. It freaked me a few times when I accidentally slipped and put weight through it too soon. Although the grafts do seem to handle this sort of hiccup OK.
I was in two days for the first stage and 5 for the second. I don't think you will want to rush out any quicker. They gave me a nerve block whilst under and then a morphine drip - but that made me sick so I just stuck with tramadol, ibruprofen, paracetamol, etc. A good cocktail taken every 2-3 hrs. Make sure you know what you can take and how often, so you can stagger them through the night.
If you have any more questions just ask.
kind regards,
Julian.
Posted by Lizzie (Lizzie - UK), 20 January 2005
Again thank you very much Julian for your reply too.
I have private insurance, but does not cover MRI's. I'm going to call Tim Briggs NHS secretary next week to see exactly what notes he has dictated. Bearing upon what he has said, I shall see what he wants to be MRI'd. I don't know if he wants just one knee or both, as well as my hips etc as I had to have long leg x-rays. Did you have to have long leg x-rays (where they take an x-ray of your pelvis, hips, femur, patella, tibia and ankle on both legs all in one x-ray)?
I have been quoted £430 for one area, £700 for 2 areas and £800 for 3 areas. I presume that an area is a joint.
There is a 4-6 week waiting list for a private MRI.
I am having also to wait for an appointment for the NHS appointment. Or should I say that I am waiting for the letter to tell me what date it would be. Once I receive this I found out that if I wait for the letter I can then call them and ask to be put on the list for any cancellations.
I live just 40 minutes drive from the hospital so I could get there quickly. Perhaps half an hour if I put my foot down, but there isn't any point trying to kill myself is there to get there for a scan, especially as you always have to wait past your appointment time!! They are sooooo busy.
I will also have to see how busy Tim is privately, as there is no point rushing to get an MRI if I cannot get into have surgery privately any quicker than I can get the MRI, although I would doubt that this would be the case.
I might also see if I could be put on a NHS waiting list for an MRI at the two hospitals near to me.
I s'ppose I should not rush things, but I am one of those guys that no sooner the word, the action. I'm not being very patient with regard to this procedure as I could have been into rehabilitation by now if I had seen Tim Briggs last May, intead of John Skinner.
I will keep you informed as to what goes on.
Posted by blue_ezzie (blue_ezzie), 21 January 2005
Hi Lizzie,
Like JulianUK, I also found that a nerve block did wonders for the pain. The MACI was my second major operation - I didn't have a nerve block with the first one - and the pain was much more manageable with the nerve block.
I have also been really ill after anaesthetic and on pain-killers, so this time I requested anti-nausea medication. I got my first hit of it before I even went under anaesthetic and the anaesthetist continued to give it to me while I was under (about 4 1/2 hours). When I came out, I had a drip that I controlled of Pethadine (I also have a reaction to Morphine) and I also controlled administering anti-nausea medication for the 24 hours after the operation. If you discuss these issues with your surgeon, anaesthestist and pain management doctor then you should be much more prepared and have a less traumatic surgery.
Good luck with getting all your appointments! Is there anyway you can stress the seriousness of your condition to speed up the MRI process? I realise I was so lucky with my knee, I went to see my surgeon and got an MRI on the spot, I had no idea you had to usually wait so long for these things.
ezzie
Posted by JulianUK (JulianUK), 21 January 2005
Hi Lizzie,
I didn't need an MRI for my left leg because I had Microfracture at my own hospital the year before. My consultant then had taken a photo of my knee as he knew I needed further treatment, and it would help with my next operation.
The most fustrating part was waiting for my own hospital finance dept to give the Ok to refer me, as they would have to pay and were worried about the costs. Which I can understand as I was the first to be referred. Although at the time it did my head in waiting. All in all it took 12 months before I got my first leg done. The second one they scoped when they did the year follow-up operation on my first, so again I didn't need an MRI. But I had that one Microfractured 4 years ago, so had a good idea as to what was wrong with it before they scoped me.
If you are finding it really painful and don't think you can wait 6-9 months for the MRI, then I think I would be tempted to pay to have that done. Personally I think X-rays are a waste of time with this problem as they don't show up cartilage defects, even MRI's aren't brilliant.
Let me know what you decide.
regards,
Julian.
Updated Mon Dec 1 2008