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Posted: 21 June 2008 at 5:25pm | IP Logged

Had my pain management app, I spent all day there

and i had to see four people

the first one was consultant in pain madication, he told me i'd been referred to wrong department, i should have been referred to pain clinic. The first thing he said was he would refre me to somebody? They would talk to me about having a plate fitted, which i really don't want.

The i had to wait to see the physio, who watched how long o could walk at waht pace, also how much i could bend etc.

Then had to wait some more to see a clinical psychologist, she was really nice.

Then we had to wait for a decision, loads of us sat in the waiting room, they came out and said when i shout these names out can you all come with me.

It felt like the x factor for pain management

Basically we have all been selected to do the 16 day programme over a four week period. Not sure how i'm supposed to do this with two children, get there at 8.45 til 4.30. But im worried if i decline from it it will affect my dla cliam which isn't sorted yet.

the programme is physio, thi chia, hydrotherapy and counselling. The consultant said however there is no point me going on it if i'm going to opt for surgery afterwards. I am soooo confused. Anyway just thought i'd let it out to anyone who had been through this, dh doesn't understand

Posted: 22 June 2008 at 12:23am | IP Logged

I went through a programme similar to this hun and I had to travel all the way through to Edinburgh (about an hour and a half journey one way) and to be honest, I didn't get anything out of it - at all! (except a lot of extra pain from the journey that is).  That's not to say that you would be same "different strokes for different boats" and all that.. You might find that it works for you and if it does hun, then that would be great!  At the end of the day, what have you got to lose by trying? You might find it best to give it a go (and at least then no-one can say you didn't try) and if it doesn't help at all, then maybe surgery is your best option..  Can I ask why you're so against it? is it just surgery in general?

In my case, the way I saw it was that the joint was 'broken' (or however you want to phrase it) and wouldn't get better until it was fixed.  Now, no amount of 'talking about it' (ie: counselling, psychology etc etc) was going to help - I had a choice of suffering every minute of every day in a tremendous amount of pain, doped up on a cocktail of painkillers (relying on wheelchairs & crutches to get around) or, I at least tried to get it 'fixed'.  I knew it wasn't going to fix itself and I wanted my life back, for me, my hubby and my two daughters.  Yes, the surgery was a risk (as is all surgery) but given my suffering and quality of life as it was, what did I have to lose?   Don't get me wrong, I know it's not an easy decision but like I said earlier it really all depends on how much you are suffering and what effect it's had on your life..

As you know, I've had the surgery twice, the last one just 6 months ago, which was quite a big operation (it was done a totally different way to the first: far more throughly) and to be honest I haven't looked back and don't regret a thing.  My mobilty has improved dramatically (I even met someone today who I hadn't seen for a few years and they couldn't believe how well I was looking and walking, the last time they saw me I was using a wheelchair all the time and today I was hobbling on the one crutch), I can do so much more with the kids (& hubby  ) and I've dropped from something like 32 different pills a day (some to counteract the side-effects of others) to an average of 8/10 - not to mention the weight I've lost too from being more mobile...  I'm not 100% and I don't know if I ever will be, but It's a vast imrpovement and I dread to think where or how I'd be now if I didn't at least give it a try..

Sorry if that ends up confusing you even more hun and if you want to talk, you know I'm here.  Please don't be put off with horror stories of the surgery (I'm sure you'd find them for any procedure) it CAN work and if that's what you need then it might be best - only you can decide that though, as only you really knows how much you're suffering and how much more you can take..

Big hugs hun and good luck with whatever you do..

Posted: 22 June 2008 at 9:41am | IP Logged

Awwww hunny it sounds like it was all a tad bit confusing. I know you don’t want to consider surgery and for you it’s a last resort option but Jennypenny is living proof that it can be a good thing and can work when your in the hands of someone who knows what they are doing etc.

I don’t think it’s worth you worrying if it’ll affect your dla claim as there is someone there who can tell them you where referred to the wrong department. As for attending it for whole day etc it seems like it’s going to be exhausting. I’d personally give them a ring and say ok, can you refer me to the pain clinic, and do you think I will get anything out of this? Etc and see what they say. (you can always go  back to your gp and ask for a pain clinic referral) The other question after you’ve spoken to them or before would be to ask yourself is this something you’d like to try and give it a go? You don’t have much too loose by trying it but weight up the what if’s for having it or not and how you’d feel about it before you say yes or no.

I have not yet (or very rarely) had a hospital appointment which hasn’t been at school chucking out time or drop off times etc…. sometimes a phone call can see us get juggled about and I turn up slightly later….. You don’t know till you ask.

Good luck hunny…. It’s not always a clear or easy decision but thinking about it and giving them a call and a chat might make it a bit clearer for you…. Just have a list of questions at the ready.

Take care and good luck x

Posted: 22 June 2008 at 4:16pm | IP Logged

thanks for the replies tsena and jenny, I am a little squeamish about surgery really, I did have 2 c sections and was awake but that was different. When i had my coil fitted i nearly passed out so had to have it fitted under general and they did a d&c.

I will give it a go, but it's not til september, they wanted me to start it through the school holidays which is impossible for me. I am going to gp tomorrow as the gabapentin definately isn't working, I have had the worst week in a long time this week.

I am worried about the pain management not working as they said to all the group it is the best one in the country and if it doesn't work, then it's just people who don't want to get better, people who want to stay in wheelchairs. I really can't believe that.

thanks for listening x x

Posted: 23 June 2008 at 2:15pm | IP Logged

That just says it all hun... and that's where 'pain clinics' and I don't get on.  I know that there is a 'mental' aspect to ALL pain and yes, there are times when people might 'think' that they are in pain when they're not (hypochondriac's etc) but they don't seem to be able to get their heads around the fact that if you have a joint that's not working, or broken (or whatever you want to call it) then no amount of 'talking'  is going to help - you need the joint fixed!!! then, by all means talk about it but surely the priority is getting the problem fixed? My consultant at the clinic even said to me in a very patronising tone (and I qoute word for word) that "yes, sometimes the brain can play tricks on us and make us 'think' that we can feel pain long after the joint has been sorted, but you aren't really feeling it, it's just the brain not wanting you to get better" - Hello!! I want my fricking life back, I want to run around and kick a ball with my kids,  I DO NOT want to be in tears with this pain and I DO NOT 'want' to use a wheelchair!! Needless to say, I didn't go back.. That's basically the attitude I was fighting all the way along especially after I had the first plate fitted.  As far as they were concerned I was fixed and should be fine.. unbeknown to everyone, the plate was loose and hadn't been fitted properly ie: the gap hadn't been closed and the screws were too near the edge of the bone (hence the reason why you need to choose your surgeon carefully).   It wasn't until I faught my case with another four consultants and two pain clinics that I finally got referred to a pelvic specialist and 'lo & behold' the problems were discovered and dealt with..

I totally understand where you are hunny and I totally understand the frustration and confusion that you're feeling too but if they start off with that attitude it just goes to show that they don't have any understanding of your individual situation, your condition or even you as a person so how can they possibly help? Even the fact that it's an all day thing over a few weeks it's an awful lot for someone with this condition.  I would ask 'exactly' what it entails hun as you know your limitations and if this involves sitting for long periods etc then how can you do it? tell them you're more than willing to try anything but within reason.. You still have kids and a home to look after hun so you don't need anything that's ging to set you back and make you ten times worse. 

Posted: 23 June 2008 at 3:00pm | IP Logged

I really feel for you - it is such a fight to get help with SPD. I have seen so many different people and clinics and been told different things by each of them. I got to the point where I really did start to believe it was all in my head! Of course I knew it wasnt and I had to fight tooth and nail to get to the right department where someone finally offered me help.

I saw the Orthopedic surgeon who did x rays and pelvic scans and said i would never walk unaided again if I didnt have surgery - however when I pressed him on it he said he was very reluctant to do it to me so young as it can be touch and go if it works and he didnt want to be responsible for putting me  a wheelchair permently. However I am on his emergancy contact list so if I decide to go ahead I can call him any time at any point in the future.

I currently have prolotherapy - and I do walk unaided - for 2 and half months following injections I can live life much like anyone else. When the injections where out I go back to being on huge amounts of drugs and extremely limited movement - but I have something to be positive about. My consultant thinks I can and will improve and get better.

All I'm trying to tell you is that sometimes you do find someone who is willing to listen and offer help. My consultant gave me hope when I started to believe there was no help out there for SPD sufferers.

Keep fighting - get the pain clinic referal - you will get better.

Posted: 23 June 2008 at 9:28pm | IP Logged

thanks for the advice everyone, the consultant did mention injections but said he didn't think it would work for me. This bloke i sat with for 5 minutes and he knew that, he must be on a large wage and the best out there if he can just look at someone and then at a file and just know these things

I went back to gp today, he has doubled my gabapentin to 1200mg three times a day, still on co-codamol, amitriptyline and fluoxetine, but he said he has done as much as he could for me and i need to chase up the pain management or clinic. I can't do the course over the school holiday period, when i mentioned the clinic he said the pain consultant should have sorted that out,but he never mentioned anything at the time, all i came away with was a bl@@dy contract to sign. Was waiting for Ant and Dec to interview me on the way out

I will ring  the Walton Centre in the morning and chase everything up, after i've had a visit from one of the girls at work. I'm a bit uneasy about it but it's not for long.

Thanks for the sound advice all, i'll let you know how i get on x

Hope your feeling better Madzx