My PAO story

[Spam1]

Kate, did your GP tell you about Butrans instead of the fentanyl? I think (though not sure) its slightly less sedating that the fentanyl ones. I know many GPs really dont like the fentanyl patches are with the elderly you can overdose them quite easily. The itching is a side effect of the fentanyl and will probably get worse if you up the dose, so perhaps try and non sedating anti histamine if you do up the dose. Glad its at least a little better with some rest, but understandably you cant rest all the time. Thinking of you and really hoping it improves, or at least you get an action plan sorted soon, Sam xx

[oscarsmum]

Thanks Sam,

She did mention the Butrans but then decided on the Fentanyl, as I don't really know the difference and the pros and cons I just went with her suggestion.I did think about Benadryl, as they gave me that through IV in hospital so thought it must be ok. But what with the diclo, stomach stuff, paras,fentanyl and benadryl it all feels a little too much to be taking- and part of me wants to stop the lot and see what happends, or else I will be rattling as I walk!

Now I have admitted to myself that its not right, instead of trying to ignore it and kid myself that tomorrow will be better, I really just want to see Witt as soon as poss and hear his thoughts. I can deal with the pain if I know the cause, and have a plan of action,at the moment I feel back to where I was 2 years ago, but keep telling myself that its just a blip in the recovery and it will be able to get sorted easily.
I have promised to take the girls sale shopping tomorrow, but am dreading it, as I am sat with a hot water bottle now and haven't even done anything at all today. Would I say the surgery has been worth it? -hmmmm juries out on that one! Lol!

Roll on 2010- hope its a better year for all of us, and those that have had surgery this year ( think thats most of us! ) see the benefit next year, and those who are scheduled for surgery have a great success. We should all be dancing on the tables next Christmas!!

Kate xx

[SirenMoonBee]

Oh sweetie, i can't wait until you have some good news over this problem and a plan of action too! i'm the same, i can put up with anything really as long as i have a target goal and plan to make things easier. But being in limbo surely makes the pain a million times worse for me. I always think i rattle and i'm always battling with myself that i'm taking too much, but whenever i tackle the problem with my GP they just say it's fine. At the moment i can say i think my surgery was worth it, but i'm not moving and haven't progressed yet so it's not an informed decision1
Next Christmas we really should be dancing on the tables, and loving the sales shopping. (i'm not even attempting it this time gutted!!!)

[SirenMoonBee]

Oh sweetie, i can't wait until you have some good news over this problem and a plan of action too! i'm the same, i can put up with anything really as long as i have a target goal and plan to make things easier. But being in limbo surely makes the pain a million times worse for me. I always think i rattle and i'm always battling with myself that i'm taking too much, but whenever i tackle the problem with my GP they just say it's fine. At the moment i can say i think my surgery was worth it, but i'm not moving and haven't progressed yet so it's not an informed decision1
Next Christmas we really should be dancing on the tables, and loving the sales shopping. (i'm not even attempting it this time gutted!!!)

[oscarsmum]

You go girl! Good for you for staying so positive! I am sure it will be worth it for all of us in the end, once all the glitches have been sorted out.
Kate xx

[Janet]

How was your shopping trip Kate? Bet you're sore now, but hope you've got that hot water bottle out again. When do you have to go back to work?

[oscarsmum]

Ha was back at work today but it was only a short day and I'm not back in again until Monday.

Shopping trip went surprisingly well, thanks Janet, although we had lots of coffee ( and muffin! ) breaks. Think the fact I had a fesh patch on helped, in fact ,surprisingly,it was my unoperated side that screamed the most, although today was the turn of the operated one again. I think they have a conspiracy going between them both! I managed to stand for a hour at work today, then sat for 20mins to do some paperwork then my hip locked when I tried to stand ( feelsl like its going into spasm ) and has been pretty sore since. I am really hurting tonight. I really can't figure out whats going on, and have given up trying, to be honest. Will be interesting to see what the physio thinks on Monday evening. I got the letter today which said Musculoskeletal Assessment Appointment- I presume it will be the same as usual, no one will have a clue about PAOs or what to do! Still should be amusing if nothing else. I think I might take a print out from Witts website so it might give them an idea about the surgery.

Roll on 2010. I hope you all have a pain free New Year ( I am removing my patch tonight and going on the Champagne tomorrow night, lol, maybe that will work better, though I think dancing on the tables-or even the floor- will have to wait until next year), and lets hope next year is a better one for us all!

Hugs to everyone, you have all been such a support this year, I think I would have gone potty without this forum!!
Love
Kate xx

[Janet]

Phew - sounds like you made it through your shopping trip OK, and I bet your daughters were pleased. It certainly will be interesting to see what the physio thinks, especially if your hip locks when they move your leg in certain ways. That's a fab idea to take a print-out of the information though, and then they will understand the extent of the surgery itself.

I totally agree that this forum has saved me from going completely mad! Everyone is so supportive and understanding, you feel like you can really let off steam, and the advice is invaluable.

Happy New Year to us all!!
Janet x

[Spam1]

Well done for getting through the shopping trip! Did you get any nice bargains? How did it go last night on the champagne but without the patch?

I really hope the physios are better than mine here, who had only ever seen one PAO patient before but never a reverse one or a debridement and the referral letter didnt even mention I had restrictions on ROM and weight bearing ... !! But you are pretty clued up yourself so you can explain. What might be useful is finding a paper or diagram of what muscles etc get cut during the PAO, that might be already on Witt's website, but if not, them knowing that will make it easier to assess you properly.

Have you heard from Witt's sec yet? As you are already under him anyway I would guess it shouldnt be too hard to get a quicker appointment, particularly with a GP's letter asking for it and you now being on fentanyl patches. Really hope you hear soon.

Fingers crossed for you Kate, lots of hugs,
Sam
xxx

[oscarsmum]

Thanks Sam,

I haven't heard anything about an appointment, but wasn't expecting to yet with the holidays.

Last night wasn't too good, I spent most of the evening sitting watching everyone else dance ( You know what its like) and was pretty down because I was actually able to do less than this time last year. At least last year I still had the hope that the PAO was going to be the magical cure , now I'm not sure what to think. I also struggled to stay awake as the pain relief must have still been in my system,(think I even dozed off slightly around half eleven, lol) and we gave up around 12.30 and went to our room.

Hey ho, just had a lovely meal with all the family so had a nice day today, hopefully at some point this year we will all be able to move away from hip problems and pain meds, and start living again.
Kate xxx