This is my first post, I've been reading this site on and off for a couple of months, please excuse my lack of medical knowledge! Sorry in advance that this is a bit long, I had one major question, re risk of dying from operations, but also a few others mixed in below. Apologies if anyone has already answered these in other posts, I haven't found any specific answers to these questions as yet (please let me know if you know of any).
I've been recommended open hip surgery for FAI (cam impingement) and hip alignment problems but was given a risk of dying, from my consultant, for the operation of 1 in 200 (I did check this was relevant to my age group- I'm 33, and being a non-smoker). I was very concerned about this and the estimated time to recover from open hip surgery, which I was quoted as 6-12 months. I read on the internet about arthroscopic surgery and my consultant agreed to refer me to someone to discuss this, although he thought open surgery would give better results (and only carries out open surgery himself). So, I'm now currently waiting for an appointment in mid-May 09 with Dr Richard Villar (Wellington Hospital, UK) to discuss the possibility of arthroscopic hip surgery instead.
What I wanted to know was- has anyone been quoted any risks of dying from either open or arthroscopic hip surgery (for my age group or otherwise) and has anyone seen any actual statistics to back this up?
I was also told that the open surgery would give me a 1 in 10 chance of my hip / pain being worse after any operation, and a 1 in 5 chance it would stay the same. I was also told that there was no guarantee that it would prevent or prolong the onset of arthritis and that there was a 50/50 chance of improving my current lower back pain (i.e. he didn?t seem sure at all). I suffer from much worse pain in my back than in my hip (see below), so even though I have been recommended open hip surgery I feel that the cons far outweigh the pros for me. I'm particularly worried about the risk of dying, especially given that I don't have to have this operation at present/ it isn't for anything life threatening. Has anyone else had to make a similar decision (or have any info that would help me decide what to do)?
Here are some more details on my situation and some of my (medical) history, plus a couple more questions!:
I've had pretty bad lower back pain, since I was pregnant in 2005- it was extremely bad whilst pregnant (pretty much constant agony, very hard to sleep but didn't want to take pain killers whilst pregnant) and has varied since then, always hurting at night (I can't lie flat on my back at all), and at some points during the daytime (generally less painful but sometimes constant); plus also some variable pain in upper back/neck and shoulders. I have always played lots of sports, particularly hockey, but also tennis, golf, cycling, skiing and liked using our rowing machine (we?d just bought one prior to being told by my consultant that I shouldn?t use it!).
Around the middle of 2007 I did something that caused me quite bad groin pain and restricted my movement in my right hip (I hadn't been aware of any difference in movement before then). I can't explain the restricted movement very well without demonstrating, but when sitting crossed legged you can't push my right knee down towards the floor at all, like I could before. I thought I had just strained my groin and it would just getter better over time so I didn't do anything about it. I was already seeing a physio weekly for my back, which was much worse, so didn't bother to mention it at the time. Both the groin pain and restricted movement very gradually got better over the next year or so, only causing me relatively minor discomfort. However, when my last hockey seaon started in August 2008, the first training session, which involved lots of running, jumping, hopping etc left me with a lot of groin pain. This did not get better and I told the physio who referred me to the Doctor, thinking I may have torn/trapped cartilage in my groin.
Having had x-rays and MRI scan the consultant diagnosed FAI (Cam Impingement) and said I had some alignment problems (is this known as dysplasia?)- which at present I?m not sure is connected/caused by the FAI, or a separate problem altogether.
I have now, reluctantly, given up hockey, which I have played since little and love, and the only thing I'm doing is going to the gym occasionally (doing cycling, cross-trainer and step machine- as these were recommended as best things for me to do). I did go skiing in Feb also, not sure if I was supposed to but did anyway, did hurt my back but didn't seem to affect my hip/groin. I've also been doing pilates, but not as often as I'd like; I don't seem to have much time to do it, amongst looking after my 3yr old son, working self-employed, and my husband also works fairly long hours, plus I'm currently trying to study for major exams, 3 weeks today, so shouldn't really be on here! My consultant didn't have much time in my appointment to go through exactly what sports I should(n't) be doing pre and post any operations. He just said not hockey or other sports with running, impact or twisting (I really want to stay as fit as possible and enjoy sport in general, is there anything enjoyable I can do?). Since giving up hockey my groin/hip only hurts occasionally, its more of a short sharp pain when I do certain movements whereas my back is still hurting just the same.
Due to my ongoing back pain my Doctor also referred me for a back MRI scan, and they couldn't see anything wrong with my back from this.
I would have thought that my lower back pain is connected to my hip problems, and that surgery to correct this, if successful, would get rid of my back pain, but my consultant didn't seem sure at all whether the two were connected and only gave a 50/50 chance of an op making my back better. For me, at present, my main aim would be to get rid of my back pain.
Please could anyone that has had lower back pain (and FAI in particular) who has also had open/arthroscopic surgery let me know whether the back pain is better/ same/ worse than before their op (ignoring the initial recovery period/few months)? I would be very interested in any details.
Thanks for reading!!! Looking forward to any replies?
Welcome to the group.
I don't have FAI, I have dysplasia, but I do have back pain, as do lots of others on here with hip problems. I am scheduled for a PAO in 6 weeks, which is one of the more major hip surgeries.It can be anything from 3-7 hrs long and involves a hospital stay of up to 10 days, so I do know what you are going through. I think that anyone who has a GA is probably slight scared of the risk of dying but its pretty low risk these days if you are otherwise healthy. The risk of clots and other side effects are probably higher. Surgery is always a risk, and no-one can tell you whether it is the right decision for you, only you can decide that.
My quality of life is pretty crap at the minute, and I am in constant pain, but in a way I am glad about that because it means that I have no doubt at all that having the surgery done. If it wasn't so bad, I would probably be posting the same stuff that you have put.
I don't think many surgeons will guarrantee the relief of back pain, because there are so many causes of it. But without the surgery it is likely that your hip will deteriorate and your pain will get worse until you need a THR, so you will still be facing the same choices.
Re sports, you are probably better doing non impact stuff- cycling, swimming, aqua fit etc ( not as exciting , I know!)
Who is your surgeon?
My advice would be to get as much info as possible, and make the choice that feels right for you. Get a second opinion, if that will make you feel happier. Any questions you don't have answered, you can always ring the OS secretary and get her to find out the answers for you.
Take your time,
Keep in touch, and let us know if you need anymore help,
All the best
I think the risk of dying is something the doctors have to point out to you although 1 in 200 sounds scarily high. It is something that worried me (2 surgeries with a GA in the last 2 years) although I think the doctors have to give you both sides to allow you to make up your mind.
Unfortunately in my experience these types of hip problems don't often get better on their own and you often will need surgery at some point down the line as things deteriorate. Like Kate, I got to a point with both of mine where I felt there was no alternative as I could walk only limited distances with a stick/crutch and had no real quality of life.
The jury seems to be out on whether hip arthroscopy worsens the condition of the joint as you will see from different experiences on this forum. It seems when dysplasia is involved that the results can be unpredictable. My OS warned me that the scope could make things worse and result in a faster deterioration but as the alternative was to do nothing, I took the decision to have the procedure.
I had open surgery in 2008 on the hip - but not for impingement - I had a tendon release and muscle reattachment surgery (caused by my hip dysplasia) and I would say that it did take a good 6-12 months to recover from. I had a 20% chance of success and was told by my consultant there were no guarantees but that surgery was successful. In terms of recover time. I was on crutches for 12 weeks as I had to have muscle reattached to bone, then experienced swelling with the wound site for several months afterwards. Don't know if that's representative or not but it was a long slow process.
I've also just had hip arthroscopy and the recovery is nothing compared to the open surgery. Very little pain or swelling with only 3 incisions and I'm partial weight bearing for 4 weeks. Two weeks in I'm hardly taking any pain killers - in fact less than before the surgery. I also have lower back pain which I'm convinced is related to the hip alignment and how I stand - often most of the weight goes on one side to protect the sore hip. This tilts your pelvis unnaturally and can aggravate the lower back. Be wary of being told your hip pain is coming from the back as I was told this in the past and I know others have been down that road.
Ultimately you have to decide what is right for you and weigh up the pros and cons. Sounds like you're doing the right thing by seeking an alternative opinion and at least your appointment with Richard Villar isn't too far off.
Oh boy do I sympathise! I have incredible back pain and have had for years. It started in the lower back 25 years ago and I now get it pretty much everywhere at various times. This has now got so bad I am unable to stand unsupported for more than five minutes, have been off work since last July, have difficulty sleeping etc etc. I also suffer severe and disabling groin pain on one side and buttock pain on the other. I have seen four surgeons and as I saw each one the diagnosis seemed to get slightly worse.
I would really recommend that you see Mark Norton in Truro either on the NHS or privately (Google Cornwall Hip Foundation). He and his team have treated more people with open surgery than all other surgeons in the country put together. I saw him for the first time last week, ten months after I was told I needed surgery. On his site he lists the risks of surgery. He did say that arthroscopic repairs take just as long to heal as open repairs - it is the soft tissue that takes longer from the open surgery but it is the hip itself whichever way which takes a long long time. Some impingements cannot be adequately treated with an arthroscope because they are severe or complex, others are easier.
I have to say that I didn't ask for stats on death but I do know that all operations carry a risk whatever they are much of this down to anaesthetics and it sounds as though your surgeon wants to frighten you or at least has done so.
I had an MRI on my back recently too but I knew in my heart of hearts it was my hips (look at my posts for my sob story!!). Mr Norton felt that the extreme restriction on the hips caused by the impingement puts an enormous strain on the back which I had figured but my local surgeon didn't get this. I cannot lean back at all and only slightly from side to side. Many days I am unable to even stand up straight. I believe that once the restriction in my hips is removed then the back will be more supple although this will involve lots of excercise as it has become stuck like this for so many years now.
I am in a bad state and my day to day life is impossible much of the time as I can't sleep, stand long enough to cook or walk outside without crutches and even then on some days I really struggle. Mr Villars has a good reputation but I really do recommend Mr Norton - he was so straightforward and I felt that he would do his best for me. Surgery is your choice but leave it and you may need hip replacements which may need replacing several times, each time more risky than the one before. It sounds as though you have time to take plenty of advice and then to make a decision even if you do decide not to go ahead. It does depend how disabling your problem is and urgent you personally feel the surgery is I think.
Seek out as much advice as you can. Can you say which part of the South West you are from - we may be in the same area?
Thanks for your reply. I just wrote a reply to you but when I submitted it, the message said I wasn't logged on, (which I had done previously), and when I did it then lost my reply message? How's that?- very frustrating! Anyway, sorry, that wasn't part of my last message!
I'm sorry to hear about you are having such a bad time and in so much pain, I hope your op in 6 weeks is successful, and you don't take too long to recover! Hope to hear some good news from you afterwards! Have you been suffering with this very long? Have you had any ops for it previously? Did you look into arthroscopic surgery? The consultant said my hips aren't aligned properly (he didn't give me very much info about this or how bad it is)- is this called hip dysplasia? I think my FAI can be treated by arthroscopic surgery, but not sure about dysplasia, do you know?
The open surgery that my consultant recommended to me is similar in timings to yours, at least 3 hrs long and 10 days in hospital, I just dug out his letter, he said it involved a longish incision, dislocating my hip and a trochanteric osteotomy etc. I'm not really worried about the GA risks, I've had 4 GAs previously, including 1 last year for a sinus op, where I seem to remember the risk of death was around 1 in 100,000. I also have a friend who is an anaesthetist, and he said the risks for my age group of a GA are around 1 in 1 million, so that's acceptable to me. However, 1 in 200 for this surgery (which I've been told is primarily down to the risk of thrombosis following the open surgery), seem so high to me, and worries me a lot.
I really wondered if anyone else has looked into the specific risk of death from open hip surgery and has any info or statistics about it?
My back pain is pretty bad, I haven't slept well for over 4 yrs (since I was pregnant), not helped by my son not sleeping well! He's 3 and has fairly bad asthma and wakes us often coughing. I then find it hard to get back to sleep due to the pain and discomfort. I feel tired all the time and get very run down, getting loads of colds all the time. I wish I could have a painfree, undisturbed nights sleep! Have you taken any painkillers for your pain? I've never really wanted to but might have to consider it soon.
Its annoying that its my back not my hip that hurts so much (although my hip/groin does also hurt this is definitely bearable at present) as it seems no-one can say whether a hip op will help my back or not, it would make the decision easier if I could have a decent chance of getting rid of my back pain!
You asked who my surgeon was- the person I've been referred to see in May is Richard Villar (Wellington Hospital, London).
Thanks again for your help. x
Thanks for your reply too! I have just posted a to reply to Kate already (haven't got the hang of this quite yet!), and now running out of time, having to study for exams, and have meetings most of the day tomorrow at work, so unfortunately won't be able to get on here that much.
Just wanted to say thanks for your information. I'm glad your previous op was a success. What was your recent hip arthroscopy for (the same thing)? Which surgeon did your op? Did they tell you specific risks (like dying!) prior to having this arthroscopy? Did anyone tell you the likelihood of this op improving your back pain? I would be really interested to hear how your back pain is as you recover from this, please keep me updated!
As an MRI showed nothing wrong with my back and I do have something wrong with my hip my physio and others think its likely that it's my hip that's causing/contributing to my back pain, but I know it's not definite, my consultant didn't seem at all sure that they were related. Its annoying to have such back pain, without anyone being able to do anything about it, I have physio every week and do pilates, but it only seems to help a small amount.
Its very difficult to decide on having an op which may not help my main problem (back pain) although I know that having an op may save me having increased hip problems/pain in the future and the possibility of several hip replacement ops. Although, faced with an op now that could kill me, especially as I feel very responsible for my son (on top of really not wanting to die anyway!), and all the other possible complications, recovery time (which is really inconvenient having a young child to look after and being self-employed) and the possibility of making my hip worse, I think maybe I should wait and hope with medical advance that the ops improve in the future...
Glad your recovery is going well so far, hope it continues! x
Thanks for your reply- I have already replied to you, but can't see my message on here yet. After I submitted it, a message displayed, saying my post had to be reviewed, or something before being posted (don't know why?)- I didn't really take it in much, not used to this website yet! I hope it hasn't been lost or something? Well, I'll keep an eye out for it and post it again if its not here by tomorrow. I did save my message to you just in case, because I managed to lose it the first time- not having much luck at the moment! x
Lol! Don't worry Summer I'm sure it will turn up.
Its hard being a parent isn't it. It makes things that normally wouldn't be an issue suddenly seem huge. I remember the first time we went on holiday with both my kids- a nine hour flight to Disney world. Whilst waiting for the plane , I suddenly panicked that I was putting my kids in a dangerous and unnecessary sitution that we could all die from , all for the sake of a holiday.The responsibility suddenly hit me so hard. I had been a Mum for 5 years then! Needless to say, we didn't die, and had a great time. I guess Im trying to tell you not to get things out of perspective, and try not to focus on the negative parts. The chances of dying are pretty remote. I think your Surgeon has scared you more than is necessary. Saying that, if you don't feel ready to have the surgery ,then maybe wait a few months, or longer. You will know when the time is right .
Thanks, Kate. I actually had the same feelings when we took my son on a plane for the first time last month (having never worried about flying before)! I'm glad its not just me that thinks about stuff like that. I wish I could stop worrying about this though.
By the way, have you had any posts disappear before, or take a while to be posted? I can't remember the exact message it gave me, something about being reviewed. Do you know how long I should wait before reposting my other message to you. Is there anyone who runs this site I can e-mail about it?
Well, if I repost it tomorrow the other one will probably reappear, and you'll get 2 the same! Lol x
Thanks for your reply. I can't believe there are so many people from the UK on this forum- I couldn't seem to find a similar one based in the UK, this seems a really good website. I'm from Bristol as you asked- where are you from?
Poor you, sounds like you've had a really rough time; my backs been bad for 4 years (and not nearly as bad as yours) and that seems a long time, so I can't imagine you having it for 25 years! I really hope I find some solution before that long! The problems you've had with pain, movement, standing etc sound awful, it must have been/be so difficult for you. Have you been looking into operations for a long time, have you had any operations or other treatment before now? I'm glad you've found someone good to see, I'll have to look at Mr Norton's website, when I next get a chance (I've spent far too long on here today already, haven't managed to get enough of my exam studies done today!). I'll also try and look at your other posts.
Do you know what operation you're going to have and have you got a date for one yet?
By the way, do you take pain killers? Was interested in whether anything is worth taking to get some painfree sleep without feeling awful in the morning, or having any other side affects? Haven't asked my Doctor about pain relief as yet as I don't really like the idea of being on any pain killers.
I really hope your surgeon can do something good to improve your quality of life, so you can sleep, move around properly and not have to deal with all the pain! x