For people who have been to St Thomas for pain management and the live in programs

[Itsallinthehips]

For those of you who have been here how long roughly did you have to wait from the time of your referral to your first appointment.

What am I to expect from the first appointment is it a long one?

Thank you

[Steve_inpaintoolong]

Blimey you must have some serious pain if you are booked in to see St.Thomas....

I know for some people the church can help... 😏

[Itsallinthehips in reply to Steve_inpaintoolong]

I don’t understand I’m sorry?

[morphalot in reply to Itsallinthehips]

I think he's making a joke that you had to see the actual St Thomas, through the church!

[mle121]

I had a 6 month wait for first appointment that took about 10 min. Then one month until I had some investigations now waiting again. The length of time was what I was expecting and I don't know for sure how long the whole process will take but guessing about a year in total. If you think you normally have to wait about 3 months for an appointment at your local hospital and that St Thomas is covering the whole of the South East then 6 months is pretty good going. Best to expect it will take a long time then if you get a call sooner you will be pleasantly surprised. How long have you had your pain for? I presume you've had lots of different treatments so far, have none made any difference?

(I wonder if your previous reply was from someone outside the UK who doesn't know what St Thomas is hence their strange reply).

[Itsallinthehips in reply to mle121]

They’ve told me I’ve got to wait 4 months so that’s not to bad then, the annoying thing is I’ve got to arrange an ambulance to take me there and back and if it’s only for a ten min appointment that’s going to be fun.

Did you have to have to investigations there?

Yeah it’s been two years now and because I’m so young bed bound and getting worse every week my pain doctor and consultant felt this was one of my last resorts

I hope you don’t have to wait to much longer x

[mle121 in reply to Itsallinthehips]

Hi, I had the investigation there as it was very specialised so wouldn't have been available at my local hospital. I only needed it as my symptoms are quite atypical so the consultant wanted to get more information about my pain. I don't think you normally need more tests if they have all been done elsewhere first.

Like you I have had my pain for 2 and a half years in my hip and leg but the leg pain is what is impacting on my life as I can't tolerate anything touching my leg so sitting is out of the question. It is horrible having to constantly stand and my back is telling me so now. It is amazing how much sitting is part of so many activities, travel, dinner out, movies, work etc etc.

It must be so difficult for you whilst having to look after your child. I do hope they can offer you something that will help. You never know we might bump into each other there without knowing it 😀

[morphalot]

Hi I waited about 6 months in 2015 but I think my referral had gone missing at this end. The first appointment was with the consultant and apart from his examination I also had to complete a lot of paperwork. I live in Shropshire and got patient transport with no problems. The next appointment was with the physio and the psychologist. That took about an hour. I was approved for the treatment so then had to wait to go on their course which you have to do before they do the implant. I did the course (which is 3 weeks residential now) in June 2016. I had the trial implant in October 2016. You normally get the full implant when they take out the trial one but I had an infection in the would so they couldn't do it. I finally got the full implant in march 2017. If you have any more questions please ask

[Itsallinthehips in reply to morphalot]

Oh bloody hell so it’s a long old process then. Do you find the implant helps at all? What exactly does the implant do?

How did you find the three week live in? They want me to do that but with a 4 year old child it’s going to be hard so I just want to make sure it’s worth it and really does help? I read somewhere you have to cook and get your own dinner and things but I can’t do that so I’m hoping they will help with all that and getting around? Do they have wheelchairs there or should I take one?

Sorry for all the questions

[morphalot]

Hi - firstly your meals are provided, and you have access to a nurse in the case of emergency. (The last bit is if you stay in Simon patient lodge). When you get your assessment the physio and psychologist will discuss your needs with you. Although it says it's 3 weeks residential, you go home at weekends - and you are given some exercises to complete at home - not physical exercise eg I had to carry a tray of drinks across a room for my husband and me.

Your wheelchair will only be of use if its a self-propelling one (I think) - nobody had one on my course. The porters/transport drivers can take you from the transport to the lodge in their wheelchair but that's about all.

The course is definitely worth doing - it was A 2 week course when I did it but they've now increased it to 3 weeks.

The implant is a number of metal rods that get put into your spine next to the nerves that are messaging your pain to the brain. You also have a battery inserted into your back. They get switched on by the staff there. I won't go into it any deeper as you will get confused but think of it as an internal TENS machine. You get shown the equipment while you're on the course and once it's implanted you would hardly know it's there.

[Itsallinthehips in reply to morphalot]

It sounds like it helped you in glad it did😊 can I ask why you went there if you don’t mind me asking? Mines for my hip.

At least it gives me a target to look forward to that in a few more years I could be a bit better and have a bit more of a life lol

[mle121 in reply to morphalot]

Hi, can I ask you a few questions please about the implant? Can you feel the battery digging into you when you are lying down or sitting? Can you feel the leads and battery inside you when you move around? Are you limited to what movements you can and can't do?

[morphalot in reply to mle121]

Hi - there are no restrictions on movement. You can't feel the leads or anything moving. With one type you can feel them vibrating when they're inside you but the other ones (which I've got) you wouldn't know they were there. I have to charge the battery up each day but I just lie down and watch telly when that's happening. The only time I feel the battery is when I'm in the bath as it sometimes pushes on the hard surface of the bath. You can't go through airport security without switching it off (you get a remote control), and you can't have an MRI because the rods are magnetic. Don't worry about asking me questions - ask away!

[mle121 in reply to morphalot]

Thank you so much for that info, that has really put my mind at ease 😊

[morphalot]

Hi - I had severe spinal stenosis, for which I'd had a spinal decompression. It didn't work so I then had a fusion. I also had both hips replaced. The rest of my body is now giving way to arthritis - neck, shoulders, elbows, thumbs, fingers, knees and ankles. Yay! I have a great future ahead of me!!! Good luck with it all. Oh I meant to say I don't know where you live, but you're free in the evenings when you're on the course so if you live nearby you could maybe get some to bring your little boy (?) over to see you.

[morphalot]

Like I said, a lot of the people in my course have been able to return to work. I can't because my pain is a bit more complex - I haven't told you the half of it!

[morphalot]

By the way - have you been offered, or had, a hip replacement?

[Itsallinthehips in reply to morphalot]

Unfortunately it’s not that simple with what they think I have it’s hip and thigh issues. No I live over 60 miles away from it so I will just have to see him at weekends as long as I can get transport, as I need to lie down during transport I’m not sure it’s always going to be that easy.

Oh no you poor thing that sounds awful, I hope now you have some relief from it all even if it’s just a little bit

[morphalot]

I get a stretcher from Shropshire thereand back. You just ring St Thomas, get put through to patient transport and arrange it direct with them. Just ask for a stretcher