Hi Helen

We not been told when yet, still waiting for an appointment. Went 2 weeks ago to collect new splints, had to go back on the Friday as they not fitting properly, called them on the Monday to say they STILL not right and were asked to go back last Thursday, of course with the snow we had to cancel as it wouldnt have been safe for Liam to walk in the snow and of course didn;t want to get stuck either. No news yet but would be nice for this week!!!! will chase them tomorrow. Wheelchair at school as normally bring that home on a Friday, schools were shut so wheelchair having a break in a quiet school.. Caretaker not answering the calls so guess we house bound til next week!!!!

karen x

Hi Karen

With one thing and another didn't get chance to post this until after scope response closed for the evening so all being well you should get it on Thursday.

I am going in to hospital on Thursday have to be there for 7.30am!! I'm in the short stay ward due to lack of beds but I maybe moved to another ward they don't know yet. Also don't know how long I'll be in hospital for so I will post on here when home.

If you do come over to visit my surname is Searle so they know who I am and where I am!!!

Take care love Helen xx

[Hi helen. By the time you read this i hope all will have been over nicely for you. will try and get a message to you on the ward.

lots of love

karenx

Hi Everyone

Well I survived the surgery and came home last night. I have both legs in removavle casts and they have managed to get me walking on crutches a little bit. Though they've told me to take things easy and use the chair most of the time for now.

I was most shocked when one of the nurses I was talking to said the following I am surprised by you we were looking at your file and kept seeing cp mentioned, but none of us knew what it was!! When we were told it meant cerebral palsy we all said she doesn't look like someone with cerebral palsy does she!!

Just what is someone with cp suppose to look like?? Found that coment rather worrying from the well known orthopaedic hospital in Oxford!!

Karen thank you for the phone call feel free to come round for coffee I'm not going far over next dew months!! Karen knows the address.

Take care will keep everyone posted.

Helen

Hi Everyone

Well I'm back from the first outpatient appointment after having both feet operated on. Well at first he said I could take both plasters off and start walking without them. But when we pointed out that I don't walk the same as other people and if the bones have only just started to heal was it a good idea to remove plasters yet? He decided that I have to keep the left one on for another week and the right one on for two weeks.
But I can take them off in the shower, in bed and when not walking.

The next battle is with community physio as they've already told me they don't know what they are supposed to be doing as the hospital hasn't told them. The hospital hasn't told them because they don't think it is necassary. They've only agreed to it because I demanded that they put physio input in.
If they are physios can't they work out for themselves what they have got to do with someone with cp who has not been very mobile for the last 6 weeks due to both legs in plaster and this type of surgery. Or is that expecting too much from them?

Helen

HIYA!

Well done on getting the plasters off! i recommend a lovely weekend in the garden with your feet in warm water!

Am sure all will be fine this time, NHS can't make the same mistake twice can they?!!!!

If you are very tight, have a go at Bowen - have various things about it on here, it has reduced Liams muscle tone greatly since he has been having it. Am sure you could get someone to come to the house.

happy weekend

karen x

Hiya Karen

Lets hope they can't make the same mistake twice!! I've got an aromatheraphy session booked for Wednesday and now a physio session for Thursday so will see how things go. I'm hoping that in a few weeks I can renew my membership and start swimming again.
It's just good not to be in plaster. But I've already had a number of people telling me not to rush to over do it. Don't think there's much chance of that I'm shattered have already slept for 3 hours this afternoon!!!

Have a good weekend will keep you posted.

Helen

Hi Everyone

Well the plasters are now finally off at last and I am walking but it's a slow and painful process. It feels like when your feet really ache because you've walked too much but you carry on walking.
I don't think tight achilles tendons are helping either but I'm still battling with the community physios they still don't know what to do with me or how long I will have to wait for an appointment.

I guess I should just be glad I'm still walking as they weren't sure of the outcome but I'm exhausted it's surprising how much effort even the simplest things are to do. I also just hope that the bones have healed a bit more and become stronger otherwise I could be doing more damange, as the hospital just told me to take plasters off and throw them away. They don't plan to x ray again until next appointmet on the 11th May.
And 2 weeks ago they said the broken bones were only just starting to grow and admitted that as they were only starting to grow would still be soft. Oh well time will tell.

Helen

Well I saw the community physio today. She was very nice but admitted she doesn't know what to do.
She said the problem is we've all done cp but it was years ago as you don't work with adults with cp it's always just children.

She is going to ask around the other physios and also ask the neuro physio if they know what to do with me and are happy to take me on she said she may even have to go to the paediatric physios as they are usually the only ones to work with cp.

Though she did say my hip, back and knee pain in other words all the ageing related pains could get worse as my feet have now been forced to be flatter as I can't go on my toes anymore it's forcing me to turn my hips and I think my knees more inwards. Which she said will put further strain on my hips and back.
The vice like pain around my foot in the ankle area she thinks could be permenet but can't remember the physio explanation for it now I think it was something to do with the forced limited movement there now is in my foot and the already tight achilles tendons.

It just seems like if it's not one thing it's another think I'll be glad when this week is over.

Helen

A new week a new round of appointments. Oh why can't life be straight forward and pain free at least for a day is that too much to ask?

Went to GP as left foot won't take any wieght. Foot apparently has gone into spasm she thinks from the amount of time in plaster. Solution physio but she thinks it will take a long time to get back to what I was prior to surgery. GP also thinks now both feet have been operated on you can see that it's putting more strain on my hips knees and back as feet apparently turing inwards now can't walk on toes.

Off to paediatric physio tomorrow as no one in adult physio services knows what to do with someone with cp!! They seem to forget that all these children out there with cp grow up. Will this physio help who knows. I know now that if I'd known a year ago what I know now I wouldn't of had this surgery done. It's taken over my life for the last 3 years and looks like it's affects are going to be lasting for a long time.

If anyone has any spare sanity or sense of humour please pass it this way. If not tissues and chocolate will do!! Then again on second thoughts if I had a nervous breakdown would I then have mental health problems and then qualify from help from social services and direct payments?

Will let you know how tomorrow goes.

Helen

Well went to paediatric physio and she doesn't know what to do either. So the physio assigned to me said can you get some feedback from the consultant.
So yesterday I rang the consultants secretary and explained the situation she said that's fine the consultant is in tomorrow get the physio to ring me in the afternoon and I'll give her a break down of what he wants.

Tried to ring physio this afternoon but got no answer and she is on annual leave from tomorrow so I decided to ring the secretary myself to see what she has told the physio.
Turns out she didn't speak to the consultant she spoke to the regisitrar who apparently said why is she having physio we didn't reffer her. I told the secretary that the hospital had reffered me and she said well Mr Jones has said you don't need physio you've just got to start to walk again!!! I said that's the point I can't as one foot doesn't want the weight put through it. And she said well Mr Jones has said there is no need for you to have physio you don't need it you've just got to start to walk again and he will see you at your next outpatient appointment.

I give up I no longer know what to do this hasn't helped the comunity physio and for all I know she may well say the hospital are saying you don't need it so we don't need to continue. If I go to my gp who can she reffer me to when the community physio has already discovered that no one locally knows what to do with me anyway as I'm an ADULT with cp.

Helen

Hiya

I had to go past the childrens ward last week as I was heading down to put in my physio refferal it looks bright and cheerful I said to the friend I was with can I go in there next time it looks more fun!!
Am back up there on Monday as I've got a physio appointment. It's only for an hour and then any followup appointments are only 30mins.

They weren't keen when I said I'd need hospital transport they've asked me to make my own way there for Monday as although the consultant wants 6 weeks of physio they said the physio may think otherwise and think you don't need 6 weeks. I said they will need to do transport for follow up appointments but they said we only do transport if it's considered an essential medical need for you to have it!!!
I've spoken to the community physio that saw me a few weeks ago and asked her if Oxford talk to her about what is needed would she be able to come back out and do the rest of the treatment at home if Oxford aren't keen. She is happy to do this so will have to see what happens on Monday.

Take care have a good weekend

Helen

Hiya.

should only be in for the day, but possibly overnight - could mean an early start but am getting used to them and prefer to do the M40 at 7am!!!!!!

Have seen Nuffield new bit, yes it is lovely. very spacious at the moment. not seen new childrens ward yet though - hope we don;t have to for a while, the JR is enough for me to cope with at the mo.

ta for your support

karen x

Hiya!

he not quite so bad now but obviously still can;t walk very far - although tomorrow he may have to as we off to the new childrens outpatients at the new childrens hospital at the JR. He left his chair at school so if it is a trek he gonna be shattered - tough i say! - we going for a head check-up as he been getting a lot of headaches and his shunt could be playing up. here we go again!!!!!!

As long as transport is booked in advance, there really is nothing they can do about it - i think they need a week's notice don;t they - they will find any problem they can to stop helping. of course, if they provided physio at home once a week to the same degree it wouldn't be a problem.

let you know how we get on.

karen x

Hi Karen

Good luck with it tomorrow let me know how it goes. If you were nearly I'd say you could borrow my chair save on the walking. As I don't need it tomorrow got a day of sitting indoors waiting for a delivery between 7am and 6pm lol!!

Hope it goes ok and hope you aren't getting back on the merry go round of hospital visits. That's what I feel at the moment that I'm too old to start the trek of regularly hospital checks and further surgery etc. But it's all fun and games I guess.

Take care love Helen xx

Hiya Helen.

He managed the walking bless him and i can thoroughly recommend the new Oxford Childrens Hospital. It is so light and airy and welcoming. everyone had a smile on their face (staff) and the car park was easy to find and had a space right out the front waiting for me! all very well signposted and someone on reception to help as well.

Anyway, he got to be admitted within the next 2 weeks hopefully to have intra cranial pressure monitoring done (again). They feel the pressure could be too low in his head, causing the buzzing noises and headaches. He a bit concerned about it but i am holding on to what i hope is just hormone related headaches - although the major headaches he had a while ago were definitely shunt ones!

ho hum.

karen x

Hi Karen

Ah bless him!! Sounds like between us there could well be a number of trips backwards and forwards to Oxford at the moment. How long would he be admitted for?
At least from what you've said the hospital sounds nice if hospitals can really be a nice place to be lol!
Have you seen the new part of the Nuffield yet? That is now open and looks very nice from what I've seen of it when I've done my last 2 out patient appointments.

Will keep my fingers crossed for him. Take care
love Helen xx

Have been to my second outpatient appointment today so thought I'd update you all.

Both feet are healing apparently the pain I have in my toes and around the areas of surgery are normal. But the consultant did say that for some reason people with neurological problems like cp, spina biffa etc do seem to have increased pain whenever you do surgery. So he thinks that is why I'm in so much pain.

After saying I didn't need physio he has now said the pain in my left foot around the ankle is probably due to being in plaster for so long. So he has referred me to Oxford for physio for 6 weeks to get me mobilised.
He said if this doesn't get rid of the pain I may need an insole made and put in my shoe. As it maybe that I've now been made too flat footed on that foot by the surgery now.

I've also noticed that my other toes on my left foot have started to go under. I asked about this and if it was lightly to cause problems in the future. He said they could well do. He said it's to do with where they made my toes shorter last year by placing pins along the bottom of them all and the curling under of my toes is to do with tight Achilles tendons.

So further surgery maybe needed at some point. He said lengthening the Achilles tendon would be a last resort. As it is risky surgery to do in an adult. But we may have to bring you back in and fuse the toes straight so break my toes again and put pins in to make them straight. I can see me definately needing this surgery at some point.

I'm also still not allowed to walk too much at the moment as my toes aren't healed enough yet to take too much weight on a permanent basis. He wants physio input first. He said it will take at least a year from now to recover from the surgery I had in February.

I'm a bit shell shocked I hadn't realised that what can be normal straightforward surgery for an able bodied person can have such a long term knock on effects for someone with cp. I go back for a further follow up appointment in 3 months.

Take care

Helen

Hey Helen,

Thanks for the update. Sounds quite positive really to me but then i am not the one in pain. Physio's at oxford are great - will this mean an up and down for physio once a week for 6 weeks or will they be able to admit you for 6 weeks intense physio?

It does take a while to progress following surgery, 8 months on and Liam is doing well but still got a way to go.

hang in there, you will be ok but it is a long process on this road to recovery.

karenx

Hi Karen

No it's 6 weeks once a week so up and down for treatment which will be a pain as I don't have my own transport and they got funny yesterday when I said transport would more than likely be needed.

Think I was more thrown by the probably need for more surgery as a knock on effect of this one. That really threw me wasn't expecting that.

Glad Liam is doing well does he find that he gets tired quickly as he's been recovering I'm exhausted!!

Take care love Helen

Hi

Well what can I say I went to Oxford last week for physio. The physio was amazed that I'd had the surgery I have as she said they have done a surgical procedure on something that is mechanical. We now have to rehabilitate you and it's far easier to do that with a child than an adult. She also said that she couldn't give me any promises she believed the pain in my foot around my ankle would only be stopped by an insole in my shoe. She also agreed to bounce me back to community to save me having to travel to and from Oxford. She also wanted a refferal made to local hydro.

A week later I have done my list of exercises every day for a week and the pain around the ankle has gone!!
Community physio is still reluctant to be involved. So have just rang Oxford in frustration and said what do I do.
They've now said if the pain has gone then I don't need hydro, and I probably don't need a gait analysis because if I'm getting from A to B without pain then it's best to leave well alone on if it's not broke don't fix it approach. I have to wait and see what the consultant says re the gait analysis as the physio had already written to him asking if she could or if he wanted one.

So all in all 6 weeks of physio has come down to one 1hr session and then for me to ring them if I have anymore pain. Oh well will just have to see what happens on 3rd August when I go back for an outpatient appointment.

Helen

Wall banging is about right along with ranting at the Scope response team just to help my sanity. I think I have one or two people from there banging their heads on brick walls with me now because they just can't believe it.

Hydro is definately out now as I have no pain so possibly is the gait analysis they are waiting to see what my consultant says and also I don't think the insole is needed now.
Community physio wise I've seen Ann Rose once!!! And she said she has tried to phone around all sorts of places to ask for advice on what to do with an adult with cp and no one knows. One for Scope there I think.

How are things going with Liam and all your trips backwards and forwards? Will be thinking of you both on the 18th. And yes we will get together for that coffee one day lol!!

Take care

Helen

Hiya helen, and apologies - not been on this site for a while.

Well done on getting rid of the pain, you must be delighted although the tone of your message sounded quite down - i suppose this is due to the brick wall you keep hitting!

I would say that physio in the community is better but i was told last week by liams physio (who was no longer working but called back in as they have NO ONE TO SEE THE MULTI-LEVEL SURGERY PATIENTS ! NHS makes you spit sometimes.

Oxford have the power to enforce community physio, i would get the consultant involved and see what happens from there. Is there a physio attached to your GP surgery? We have one up here although you have to join the queue!!!!

I hope you do get some hydro, failing that get your foot in the bath and do the exercises in there yourself!

:-)

karen x

Hiya Karen

You read my message correctly what with physio and the hassle I'm having with social worker is all getting a bit much. The fact that my seizures started up again a few weeks ago (seizures are stress related) says it all really.

Physio at Oxford is working on a if there's no pain then leave well alone if it aint broke don't fix it view.

Social worker came out yesterday I'm trying to get direct payments to enable me to hire a PA company to take me out more. Social worker turns up says "Oh you're walking you don't need a pa if we get you a rollator with a seat then you can walk to the bus stop/ train station to get where you need and sit on the seat when you get tired!!!! She accepted that from my house to sainsburys was now too far for me to walk but didn't accept that the bus stop and train station were further away.
She just keeps saying use your DLA. So am pretty fed up with all the constant battles at the moment.

As for physio gp is saying the hospital physio knows best so will just have to wait till I see consultant. It saves me having to fund getting to the hospital I guess. They wouldn't agree the physio was an essential medical need to pay for me to keep going to physio at Oxford using hospital transport.
Community physio is still saying I'm an adult woth cp and she doesn't know what to do!!!

Take care love
Helen xx

so peter saying paul is in charge and paul is saying fred is in charge and if you go and see fred then you either got to walk and sit when you get tired, or walk further and get a train(!) and pay for it yourself cause we aint gonna transport you there! i think i got it now!

You can get hydro at amersham if they ever agree to it but of course now you not in pain they wont go for that - hydro is an important part of your recovery process. these 'people' (wanted to say something rude but know it will get blocked), should try and walk a mile in your shoes (which actually you would probably like to do yourself!)

Community pysio should find out what to do with an adult with CP - who do you see? i seen most of them now i think.

chin up, you will get there you have come so far since being discharged and you know you have. boy your head must be sore with all the wall banging you have been doing!

will come and see you soon hopefully - been saying that for a long time i know but have a lot on myself as liam back in oxford on 18th for ICP monitoring as his shunt may be over draining. ! :-D

karen x

Hi All

Just to add to this on going post and my tale of woe since going ahead with this surgery. I now think there is a possiblity that the screw in my left foot may of moved again!!!!

The other week I turned over in my sleep and woke myself up as it really hurt it felt like I'd caught the edge of the screw as I moved. Now that foot really hurts or aches when I walk on it and I can put my finger on exactly where the screw is and feel it. I can even feel it through socks.

I really hope it hasn't moved again not sure how much more of this I can take before I go mad. Have got an outpatients appointment next Friday so will see what they say then. In the meantime grit my teeth and moan lol!!

Will keep you posted.

Helen

Well just back from outpatient appointment and I have to have more surgery done!!! I didn't think 3 years ago when I started down this route of bunion surgery that I would end up having to have so much surgery when if you are able bodied it is straight forwrd surgery.

I now need to have one of the tendons lenghten not the achillies tendon as this is too dangerous surgery to do on an adult. But one of the tendons just behind my ankle to stop my other toes from curling under.
Apparently they are curling because of the cp and the tight achillies tendons.

The tendon lengthing is going to be done on both feet and at the same time they are going to take out one of the screws in my left foot as it is causing problems.

Consultant did suggest I wait until I'm more recovered from this surgery and walking more but I pointed out that I'm in too much pain to try and walk more. So they've said 3 or 4 months time for surgery but we all know what hospital waiting lists are like. So that probably translates to sometime next year. What fun that will be the 3rd year running spent having and recovering from surgery.

Helen

Hi Hymerkar

Sorry to of made your eyes so tired I started this thread going as when I was looking for information on bunion surgery and cp and the effects cp had on the surgery or vice versa I couldn't find any information. Hence this post in the hope that it may help others.

Like you it was suggested that I had toes removed but luckily I was bounced to a 3rd consultant for another opinion and this consultant told me he could do surgery. Was it worth it honest answer I don't know at the moment. It was a very hard decision to make to go ahead with it and I didn't expect all what has happened to of happened.

If I'm honest I thought I would have one foot operated on one year the other foot the following year and that would of been it. Now it looks like next year will be my third year of surgery as although the consultant said yesterday he would get me in in 3 months time his secretary laughed and said you are looking at next year!! And I hadn't expected that so am a bit fed up with it all at the moment but time will tell.

I suppose after my left foot was operated on (first surgery) for the first time as my mum said my foot looked "normal". But how my walking etc changed was hard to cope with. So I don't feel at the moment I can give you an honest answer on has it been worth it. I will keep this post going over the next lot of surgery and recovery and maybe I will be able to answer better then.

Glad you have found something that works for you. Take care Helen

Hi Helen,

I have just read your 'blog' from start to finish, my eyes are very tired now, but I couldnt stop as it facinated me.

I was born with CP and over the years bunions have developed on both my feet, now at the age of 45 yrs nobody seems to want to know about my increasing difficulties in getting around. About 3 years ago my bunions started to cause real concern, and as you said - my big toes are crossing over and are painful, my other toes are squashed and my little toes had a constant corn and hard skin and sometimes got ulcers between my little toes.

For about 10 years I have been having surgical shoes made, and the orthotist had been making them wider and wider and my feet were getting worse. My chiropodist told me to tell him he was making things worse by allowing my toes more room to move around in the shoe and rub. He said he didnt agree and was trying to relieve the pressure.

I was going round in circles, and the orthotist eventually brought an orthopaedic consultant into the room to see me one day. He suggested surgery which would involve removing some toes. I said I would think about it.

I came home very upset and not knowing what to think or who to get advice from, I have only discovered this forum today, this was a couple of years ago.

The next time I went to see the chiropodist, I told her and she looked in dismay. I think you have enough problems as it is, she said, without anyone adding to them. She tried making molded things to seperate my toes and suggested I spray them EVERY day with surgical spirit. The surgical spirit works wonders, it really is fantastic, but the toe seperators made things worse. One day my mum said - you may think this stupid, but what about ear plugs? She had been on a Virgin Atlantic flight and they gave her ear plugs which are a very soft foam which squashes to nothing. For the last 2 years I have sprayed my feet and put earplugs between my little toes, much to the amusement of the Chiropodist and the orthotist, BUT IT IS WORKING.

At last my feet are getting stronger and I am not in my chair quite so much. Which is just in the nick of time as I am starting to have hip and back problems due to the lack of walking. My GP has this week referred me to a physio but there is a 20 week waiting list here.

My question to you Helen is - do you think it ws all worth it? If in time my problems come back, should I consider surgery?

Good luck with your recovery, and I look forward to reading the next episode.

Kind Regards

Hi Sam

Thanks for that it's nice to know people are thinking of me and care. I'm doing ok went to hospital on Friday luckily no infection it's all starting to heal as they want it I'm not fully healed yet but they have said I can start to do some gentle walking.

So am slowly getting back on my feet am doing better than I thought I would be after 5 weeks of no walking. So don't think when they finally sort out physio the physio will do very much. The only problems are that my right foot is still very swollen but the consultant said that's to be expected with the amount of surgery they did on that foot and also my achillies tendons have gone really tight due to not walking for so long. The gp wants me to try baclofen again I had it before about 7 or 8 years ago and couldn't get on with it as it relaxed my muscles too much and I couldn't stand. But the gp is still saying try it again. I'm very reluctant to but I guess I'm going to have to as she has given me a prescription. She's suggesting I take it short term to see if it just gets me through this bit where everything is so tight.

Hope all is well with you take care

Helen