Pelvic Osteotomy OA for 4/5 years

cat123

Dear all,
Just a quick shout out to anybody who may of had this operation on their hips for info and also to any youngish people with hypermobility OA in their hips knees and feet and shoulders who live in the West yorkshire / Leeds area . No groups currently in this area for young people with OA or Hypermobility would be pleased to meet people.

I'v been having problems now for 4 years am 25 and a music teacher in Leeds used to climb mountains until hip problems started . Born with Hip dyspalsia. I'm in line for a Pelvic Osteotomy on one hip with the possibility that it might need doing on the other (hear its a terrible op) with crackin results if it goes well. Just had Arthroscopy and Labrum repair which was surprisingly good. Apart from having to deal with the hypermobility aspect of dislocations and subluxations on a regular basis, the main problems I seem to be having are with managing pain in my feet and back at the moment. Lots of pain in the lower back so much so that getting home after work all I feel like doing is lying flat on my back for hours. Have torn the plantar fascae (i think thats how you spell it) muscle in the bottom of my foot through having no arches pain in feet sometimes feels like they'v been crushed so back in line for podiatry. In line for physio again which I am looking forward to.

Was on codeine for years but stopped in the last few months because found it was making me too dopy to live life to a good degree. Went onto patches buprenorphine, diclofenac and paracetamol which make you more lucid but does'nt kill all the pain reluctant to up the patches as don't want to become too dopy again. Have tried tramadol but again not an advocate of being doped up when you're trying to work. I have tried heat and cold and they help a bit. Patches don't allow other opiates to work with them which seems to be something not all doctors know... had some great doctors tho!

Any advice would be welcomed! So if anybody have any suggestions about other options for pain relief would be pleased to hear from you!
Best, Cat

hileena111

Hi Cat
Welcome to the forum....sorry I cant really help....I've got OA in my hips lower spine ankle and neck and had one hip replacement.
I'm sure someone will be along to help....as for no groups in your area do you mean no groups or no groups specifically for young people?
Have you checked the main page of Arthritis Care for groups?
Hope you enjoy the forum

Love
Hileena

barbara12

Hi Cat
Sorry I cant help with the groups, but like you I hate to be feeling dopey in the day, I have tried most of the meds apart from the patches, and I havent found one that dosnt make you tired.
What I do is try to take the lowest amount I can get away with, but on bad days I have no choice but up them.
I take cocodamols, gabapentin for nerve pain from my back, diclofenic, and amitryptaline at night to help me sleep....sorry about the spelling my spell check has stop working :roll:
Oh and welcome to this lovely forum.

cat123

Hello thanks for the welcome
Its actually so nice to be talking to people who have the same sort of things and are on the same drugs. With the groups , i went to an arthritis care group for juvenile arthritis the other day because they told me that would be the best one with there only being ones for old people in Leeds and none for younger people with OA and congenital problems. But I felt very out of place just because that really is a tough and very different disease. They said they'd be happy for me to stay because the kids could look up to me but I'd feel like a bit of a fraud to be honest because its just completely different and they have to go through so much even though they would be an inspiration.

I was on amitryptaline for the headaches i get from having trapped nerves in the spine (have you had anything like that as well) or something and found it great apart from the tiredness but it clashed with a hormone drug they are giving me for something else so had to stop and take pregabalin - also good. went back today because the back pain got too much and they'v raised the patch dose. But the doctor was of the opinion i shouldn't be at work which I have to work or I will loose my job so its a hard situation in these times. Thanks for the info tho very helpful

hileena111

Hi Cat
Amitriptiline!!!!!!! I've got a story about that one as well Loads of people are on that here ..... I got a really bad pain {different to any of my other arthur pains}across my sacro illiac and in my buttocks ....kept moving from one to the other. After 6 weeks and the GP deciding it was sprained :eek: yjru put me on amitriptiline but like you it clashed with epilepsy drugs I was taking so that didnt get off the ground. Everyone else seems to think its great. They then sent me {a couple of days ago} for x rays of r and l hip and pelvis and according to the radioligist to check for fractures in my right side??? r ...side of what ...not sure :???: I've got a replacement hip on that side :???:
As for the groups ...would it not be worth giving the nearest one or 2 a try? OK I know they are mainly older than you but you might just meet up with a couple of younger ones or ones that you could relate to even if they are older and the speakers can be very good......You wouldnt have to pay at first....ours is £1.50 a week as well as the yearly membership...but no one asks for the yearly membership until you are well settled. I know I'm older but I find its a night out and that I can get a lot from most of the speakers we have......Coping with pain was last month...this month {Next Monday} is about using alternative medicines and treatments for arthur.
Good luck whatever you decide and keep posting.....its nice to hear new members
Love
Hileena

barbara12

I find it such a shame that most groups are on the older side, there are so many young people with Arthur, I would hate to see groups split into old and young.
Like Hileena says you should give it a try, you might make some really good friends.
Wishing you well with everything, and please stay with us then we know how you are getting on.

nearlybionic

Hi Cat
I have bilateral hip dysplasia. I am now 42, but have had hip problems since my late teens. I developed severe OA in my left hip and had a THR 2 years ago. I have been referred to a consultant who specialises in congeital hip problems and is one of the surgeons who performs PAO (peri acetabular osteotomy) in the UK. He wants to do a PAO on my right hip, and I had a lot of scans , examination under GA in preparation. But unfortunately my replaced hip dislocated last year and since then I have not really felt ready to have any more major surgery. You are right, it is a very major op, with several cuts into your hip and pelvis to allow the hip joint to be realligned (?sp) and then pinned and screwed back into place. The recovery is longer than a THR, but I have spoken to people who have successfully had the op and are really pleased with the result.
I still have pain in my dysplastic hip and take Naproxen , paracetamol, and amitriptyline too.
Take care
NB

frogmorton

Hi Cat

lovely to meet you

I am on the patches as well butrans and l love them because they don't make me so dopey as the co-cos etc.....you dont get that woozy boost of the stuff so much better for me.

I have had back surgery due to prolapsed discs, small fracture, which were pressing on my nerves :shock: tis pretty dreadful really. At the time l lived on tramadol and anti-inflams and got so used to them taht l was able to function pretty well normally.

Did you say you were teaching? If so then l hope you will be able to rest properly during the school hols which are imminent.

Love

Toni xx

julie47

Hi Cat

Sorry I can not help you as I have RA but just wanted to welcome you to the forum.

Take care and I hope the physio helps.

Juliepf x

cat123

Hello again!
Thanks for the replies ! Its really amazing to know when i'm feeling like **** i can come on here .

Just to clarify it a bit the situation with the groups is a weird one. It went a bit like this , - I was looking for any kind of group , in the West Yorkshire area to join and have some support from because I realised i'd reached my wits end..

Phoned up arthritis care Leeds (northern england) and they said there were 2 groups for older people that meet in the day and nothing else and that really they wouldnt be suitable. But that - I should come to the one for young people - when i got there it was for JA so don't really know what to do because they were looking for help running it and at the moment i'm not in a position to offer anyone any help.

To be honest i'm not that bothered by the age thing i'l happily hang out with the older people and the younger ones just by the end of the day i can be tired of children although u gotta love em! It was more that they still dont seem to think that i'l fit in with them and that they're in work hours as well. But a lovely lady offered to find me a place on a challenging pain course in York which would be fantastic! Its great to hear about your stories with amitriptaline - what a weird drug it is i wont tell you what side effects it caused in me because its too funny but it is to do with a pregnancy hormone !

Also cheers for letting me know you are in line for the pelvic osteotomy as well I can understand you not wanting to have it done. You have to put your life on hold all the time. I spoke to a nurse who had had it done on both legs and she said the pain of the nerves dying in her leg on the one side was the most horrendous thing she had ever experienced because they have to cut them more often than not. She had got as fit as she could be and her husband was a surgeon and they were still struggling the one thing that did help her was getting the abductors to maximum strength before the operation on the 2nd leg. This meant they had to cut less nerves. Like you though she has said the results are great and she has since had a baby and moved to Germany and is wearing heels! Although not something I could ever wear anyway with or without arthritis. She is the only person iv met who has had it done. Was being treated at Wigan by Mr Clayson but have been moved to a fantastic hospital in Wales now under a Mr Kiely his second man because its nearer my parents home. Obviously still live and work in Leeds. Thanks again for all replies its absolutley great hearing from you x

hileena111

Hi Cat
Glad you're going to stick around.....at least if you cant get a meeting to suit you {they are only once a month anyway} we're here 24/7 well almost anytime you want to moan groan or ask for help.
As for the challenging pain course....jump at it.....it is great as others will tell you....I've done one {2 weeks} and then there is the challenging arthritis course....its 6 weeks ...you might get on tghat as well.....they are really helpful.....even if you've had arthritis or whatever for years there is always something you will have forgotten and it brings it to mind
Love
Hileena

speedalong

Hi Cat,

I was born with CHD in both hips too. Had operations as a child and by mid 20's was suffering with OA. Had one THR at age 30 on left hip (very difficult job, due to previous surgery, state of hip etc. The hip is functional but weak.

My other hip start to dislocate again and OA set in. I was referred to be considered for PAO, but the consultant decided it was too soon. To cut a long story short, in the end the OA was too advanced and I could no longer have the PAO op. I was gutted. I had a resurface-replacement instead, just over a year ago.

So don't leave it too late.

Speedy

girlyxcharlie

Hi Cat

I've only just found this forum and was wondering if you went ahead with the Pelvic Osteotomy? I'm 24 and currently on a waiting list to have one at The Royal Orthopedic Hospital in Birmingham. I have dysplasia and oestoarthritis in both hips but also had some unexplained bone tumors in my right hip (benign thank god!) so i have had a couple of operations to have them out...had some relief for a while but i am now at the end of my tether and think I would agree to just about anything if it meant a reduction in pain. I'm defiantly of the view of wanting as much mobility as i can whilst i'm young and carefree and like you hate feeling dopey with painkillers. If you did have the op i hope all went well.

take care
Charlie
xx