My PAO story

[Rayray]

If it were me I would take the private route. I know the hospital was good on the NHS but privately you get more physio time, better food (did you watch Dispatches last night!) and some recovery time in the peace and quiet of your own room. I'm lucky as I get this on the NHS as The Duchy and it does make a difference to your recovery.

If you still can't move your leg tomorrow you must phone Mr Witt's secretary and get some urgent advice, if that fails go to A&E as something must be very wrong and it is not you panicking. The tendon may just be well and truly caught rather than snapped but you do need some advice. If something has snapped they may be able to sort it if it gets treated quickly.

Let me know how you get on.

I'm feeling better today thanks. Up and about, went into work and have pottered around there and at home so feeling more human again.

[Rayray]

Hi Kate,

How are you? I have been worrying about you all day. I hope things are better.

x

[oscarsmum]

Hi, thanks Rayray,

Things are slightly better, although I caved in last night and have gone back to a Fentanyl Patch, so am not sure whether the bit of improvement is down to that or not. I can move my leg enough to walk now although its sore, but the main hip flexor movement is pretty non existant-although that hasn't been great for the last few weeks anyway.Not planning on staying on the patch for too long, just need a couple of weeks respite and to get over this issue.

I'm not as scared as I was last night, and I am hoping it'll settle itself down. I won't try and push through the pain again because its not an experiance I want to repeat! Rayray I dont know how you cope with that excrutiating pain on a regular basis, especially when you didn't know what was causing it.

Kate xxx

[Rayray]

I am glad it is a bit better. Rest it as much as possible and then gently resume activities if you can. I think a few gentle stretches 3 times a day are usually recommended (I'm not doing this though as my tendon can't take anything at the moment!).

I think you should email Mr Witt to let him know as I have been told that chronic tendonitis is very difficult to treat and so the sooner you have some help the better.

[oscarsmum]

Thanks Rayray, and I will try the stretche sagain in a few days, have been doing them on and off a while,tried swimming a couple of weeks ago thinking that might help, only went once, but it seemed to flare things up even more. I have been telling him since 4 months post PAO about the tendonitis. I think that its common up to 2 years post-op because of the bone gap, but as I am almost there now, and if anything its getting worse, am hoping he is going start taking it more seriously, as its having a real impact on everyday stuff now.

I can't believe it is almost 2 years since our open surgeries. You seem to be worse off, and I am certainly not any better off than pre-op-albeit different pains- and another bad hip to add to the fun. Its a good thing we didn't know this 2 yrs ago, I expected hip pain to be a distance memory by now !! April will be my 4th surgery in two and a half years, with probably another one later in the year, the novelty is really starting to wear off. I am missing being a 'normal' person, and starting to feel more and more disabled. How I wish I just had straight forward Arthritis and could have both hips replaced, instead of niggly things like tendonitis etc that can be disportionally painful and seemingly harder to fix.

[Rayray]

I feel the same as you Kate. I was only thinking earlier that it is two years since my first surgery and I have had three since plus numerous steroids. My tendon issue is practically unheard of hence the long wait for diagnosis although I am marginally better than I was two years ago as I don't have the nasty pain inside the hip or the nerve pain but this is very disabling - to the point we are thinking about a sports wheelchair (better than a mobility scooter for all sorts of reasons I have found out). Straightforward arthritis would be so much easier to deal with, even my surgeon said that as he said if things go wrong with hip surgery he can always replace it but this is a different matter.

One thing I have read about all types of tendonitis is complete rest is needed to let it heal. I have had several periods where it has been rested but like you it is now worse than ever. I wonder if a period on crutches all the time would help but like you I'm not going there at the moment until I have some proper advice. Crutches out of the house are bad enough and for me I do use one a lot inside as the pain is so bad.

Who would have believed eh!

I have found the arthritiscare website very helpful. I emailed them yesterday and they came back very quickly with a reply with lots of links to info. It does at least advise on the best coping strategies as I don't know about you but being positive about recovery after two years is wearing a bit thin now!

[SirenMoonBee]

Kate i do too, I miss being normal and being able to walk around town shopping, swimming and tanning and partying are all a distance memory! I want it back and i'm happy to fight for it but it seems to get further and further away from me x I hope this one really helps you out this time and it will be a distance memory soon for us all x

[Paignton]

Oh Kate what a terrible time you really are having right now :-(

I can only echo what all the others say about how wonderful it will be when we are all sorted. For me there is light now finally at the end of that tunnel. I do wonder how you can carry on at times like you do.

xx

[Janet]

Hi Kate

How is your psoas now? I hope you've e-mailed Mr W's secretary to ask for advice about it, as it sounds very painful!

Take it easy if you can x

[oscarsmum]

Janet,

Its good to have you back !

Psoas has settled back to pre twang levels, so better but still its normal grumpy self! I'm a bit disillusioned with hips, recoveries etc at the moment and have emailed to ask if I can see Mr W before my next surgery, even if it meant postponing. At least this will give him a proper chance to examine the left and explain his thoughts on that, and discuss the psoas at the same time. She has squeezed me into the last clinic before he goes on leave which I know is already overbooked so I am really grateful to them for that.I can't fault the way they are being at the moment, just wish I could whip up some enthusiasm for another round of surgery.
Hopefully things will be clearer and will seem more positive after that appointment.