PVNS - MY SURGERY EXPERIENCE & ADVICE TO PATIENTS
A quick update for anyone following this thread..
After my biospy in March I decided to postpone surgery.
Reason being, I was told it would be full open surgery instead of the key-hole surgery I had been told initially. Open surgery is a whole different scenario to key-hole. The risk of months of physiotherapy would interfere in my plans for this summer for a holiday/home move. I'm also in the middle of a business degree course and work full time...
Since I had greatly improved mobility afer the biospy, I was able to go jogging again (or so I thought) and lead a fairly normal life.. no pain in the knee hardly, just stiffness.. I wondered how long this would last and hoped it would last the summer at least. Unfortunately the PVNS came back with a vengence this month. I'm pretty sure this was due to the jogging and increased physical activity. If I had avoided that, I would have lasted the summer at least I'm sure before I needed surgery.
I called my consultant and got a quick surgery date within a week at the Birmingham Royal Orthopedic and had my surgery last Thursday. I didn't get out from hospital until last Sunday, even though I was told I would be out the same or next day. That was due to the drain being kept in longer.
OK so here's what to expect...(for anyone undergoing open surgery on the knee for PVNS)
Prepare yourself. Don't expect to be walking out of the hospital with a stick as I rather naively did. Don't expect to be leading a normal life again quickly within days. You need to be realistic. You will have to adapt your life around your recovery and physiotherapy for at least a month, maybe longer.
SURGERY & HOSPITAL STAY
I don't want to scare anyone who is awaiting open surgery, but it's no walk in the park. The pain is terrible. So terrible I was having to take morphine in hospital, even days after the surgery. You can expect to be on dihydrocodeine for weeks upon release. The constipation from these is terrible. I was glad to get out of hospital because of it in the end. No bowel movement for 4 days!! If the hospital staff tell you, you'll be out the same day or next day, take it as an optimistic assessment and prepare yourself for a longer stay.. you can expect to be in 4-5 days probably, so plan accordingly. Remember PVNS is a rare condition and treating it is not straightforward. Each person is different.
The post-surgery pain is the main problem.. its excruciatingly bad when you're moving, standing, but ok if you're resting lying down. If you keep taking the opiate painkillers you have all the discomfort and unpleasantnesss of constipation.. the laxatives they give take days to work and have only minor effect in my case.
SELF-ADMINSTERING BLOOD CLOT INJECTIONS
Then there's the injections to prevent blood clotting.. these have to be done daily in stomach, either administered yourself, or a relative/friend can do it. They are not bad though. I was terrified to do it and insisted the District Nurse come and do them, but she coaxed me into trying one injection and I honestly was surprised. It was dead easy to do and I didn't feel any pain at all. It's just getting past the initial fear of sticking the needle in yourself..but it's such a slight tiny needle you won't even notice it. So have no fear about the injections if you're on your own. Just try one with the nurse, and you'll see it's nothing. Don't expect the nurse to do these for you for 2 weeks. As I found out, they will not, not matter how much you argue!! The alternative is to go to local practice nurse at drs surgery (trust me, the pain of going anywhere in first week is not worth the hassle..try it yourself at home).
You will get an assessment from the hospitals physiotherapists a day or so after surgery and they will see how able you are to manage by yourself at home.. if you can get on and off the bed, go to toilet unaided, walk up and down stairs, they will most likely let you do the physiotherapy exercises at home, (as in my case)...
This may sound a better option, but some words of caution here.. its not easy to do these exercises alone and takes A LOT of time and mental discipline. If you live alone, as I do, it is very challenging to find the time and to get into a routine. However you absolutely must do all the exercises, daily, three times a day in fact (and not stand on leg or sit for more than 30-60 mins, nor lie in bed for more than 1-2 hrs without moving your leg).. else you will have problems with the joint and end up having to go into hospital for physiotherapy.
ADAPTING TO LIMITED MOBILITY
After surgery, you can expect massively reduced mobility. Even walking across a room is a major effort on two crutches..carrying meals/drinks/equipment etc, all very difficult if you live alone.. you will definitely need help preparing meals and someone to act as a carer for the first week or two, unless you're lucky enough to have relatives or a partner living with you. If you live alone, you will certainly need to make a lot of adjustments to your living environment. In my case, it's even worse because not only do I live alone, but I'm also in a 2nd floor flat which has 3 flights of stairs!
Funny irony.. before I had my surgery, I had stiffness and pain from PVNS and would walk with a stick but could walk briskly and would pass these old people with zimmer frames and two sticks, crippled up from arthritis moving slowly and think, my god.. how terrible. Now, these same old people are moving quicker than me, and looking at me in sympathy!
DON'T OVER DO IT!
Even just walking a few yards is a huge effort outside..I went to the shops just 2 minute walk away from my flat and was physically exhausted and in a lot of pain by the time I returned.. If you overdo it and don't do exercise gradually (as I did by throwing myself straight into a load of business work, with lots of standing around) you will get massive swelling and that causes further muscle/joint strength loss and increased pain. All you can do then is put ice on it and rest it up elevated.
PLAN YOUR LIFE AROUND RECOVERY
I've been told it will take at least 6 weeks of physiotherapy for my own recovery due to open surgery and having more of my knee lining removed (but even so, I had the lesser localised version, not diffused). If you're fortunate to have the keyhole surgery and very minor joint lining removal, you may get away with much less mobility problems and physiotherapy. I was told by the surgeon that in diffused/worse PVNS, where they remove the entire knee lining, it can take 6-12 months of physiotherapy. So I consider myself lucky it's only 6 weeks..even if it is hell right now in the first week!
I've been told it does get easier as you regain strength, but it's vital you do the exercises and rest. Don't be tempted to rush back into work or lots of moving around, until you have your strength back, else you will just prolong the agony.
So, in summary, here's some key points and advice...
- If you feel much improved after the initial biospy and fluid draining (pre-surgery) don't assume it will last long if you go straight back into using the knee/joint and doing strenuous physical activities. If you need to postpone surgery for any reason and want to retain mobility, my advice is to avoid doing anything strenuous that uses the joint.. even light jogging. Else you risk requiring surgery in a few short weeks, as the PVNS symptoms may return fairly quickly. Make the most of the improvement after the biospy by not exercising the joint strenuously and I think you could maybe postpone surgery (if you need to) for many months or even a year if you're lucky.
- If having open surgery, prepare yourself for major lifestyle change for several weeks/months, and realise you won't be the same for a while or able to do much beyond physiotherapy and recovering.
- Plan ahead, adjust your living space and make sure you have a carer available.. you will need easy access to toilet (bed bottles/pans else), meals cooked by someone or easy to prepare meals... everything you need should be in easy reach of the bed.
- Be prepared for major constipation from daily pain relief. Drink plenty of fluid/water constantly to hydrate.. get plenty of fibre and take laxatives with senna tablets.
- Use your crutches properly at all times to keep weight off the bad leg and don't be tempted to hop around or walk on the bad leg without support. Definitely do not undertake any strenuous physical activity like climbing or lifting things in first week from hospital. The pain relief may give you a false sense you can, but remember the joint is fragile and you will end up with massive swelling, inflammation over the joint and severe pain. Once the painkillers wear off the pain is 10x worse then and they no longer work at normal dosage!!! And the more you take, the more constipation/nausea you get.
- Do all your physiotherapy daily as instructed and don't be tempted to skip them or think you can. You can't. If you don't do it, you will be sorry the next day as you feel stiffness and pain set in. The exercises help the strength return to joint and ensure you retain mobility. It's vital you do them as instructed.
- Don't worry about the anti-blood clot injections. They're nothing to be scared of. Once you try one you will see it's nothing at all, you won't feel a thing most likely as the needle is hair line thin and the pain killers block any sensation.
Hope that helps and hasn't scared anyone! I will post further updates on my progress in the coming weeks...