Afternoon everyone, watching the last day of the 'Tour De France' and trying to keep calm but my stomach IS in knots and on spin mode. I'm feeling awful and my back pain has gone through the roof.
Tomorrow, after 20+yrs of suffering ( diagnosed with scoliosis in the 80's and left to cope by myself) I'm finally going to Gobowen Hospital to see a consultant after having a MRI scan on my back in January (had a break down at the docs just before Christmas as the pain is really bad and I was waking up paralysed from waist down). Anyhow I thought I was coping but I'm not. I feel like s... and going to the hospital by myself as no one will come with me. I written down questions I have to ask, also some painkillers that people have suggested to me as I'm on Zapain and they are not working like they use to. My head is fussy at the moment so I can't even remember what else to ask. I can't have a drink to settle my nerves as I don't drink (long story that I will tell one day).
I'm getting emotional at the moment as its taken over 20+ yrs for anyone to believe me and I think its just overwhelmed me.
Can anyone think of anything else to ask??
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Bentleyboo
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Can't think of anything else to ask, but you can always look at it differently. You've waited 20 plus years to get to where you are going tomorrow! It's a consultation. Not an operation. You are going to get answer you have needed for a long time. You are bound to be nervous, but let a little of the happiness squeeze in and it will make a world of difference.
I understand what you are going through. I'm not yet at the consultant stage. Where I live we have to be assessed by a physio before being referred. I will get there, and I can't wait. Like you, I find the thought terrifying. But at least we are moving forward. The thought of having the killing pain reduced if not removed......... We have to keep that as what we are working for....
Best of luck with your appointment. Please let us know how you got on 🐸
Feel for you I really do. It is such a shame you can't get anybody to go with you for support.
Yes for some reason they have changed the name from Cocodamol to Zapain goodness knows why.
I can't help you with questions other than its your disease and you want the best treatment for it and supported in the best way possible to manage it.
Remember there are peeps on here if you need it will give you all the support they can.
Hi Jen, thanks for your reply. I'll let everyone know how I get on tomorrow. I've never seem an xray of my back so just wonder what degree the curve is?? ☺
there are different things that can cause scoliosis and maybe you could ask the doctor what they think may have caused yours. no doubt the consultant will tell you what he saw on the mri scan and you can go from there with any questions, and you dont want to go to the hospital appointment smelling of drink even if you could drink. im really pleased that your getting some help at last as its a long time to be left on your own to suffer you seem to be very emotional and there is nothing wrong with that at all. also you could ask the doctor if there is anything at all that you could do to help yourself. maybe regarding to your posture. as i know that the alexander technique is very good for this condition and so are a few other movement techniques. you could type it into google many of the movements help to release tightness that is experienced in people with this condition, to see a practioner is expensive but there are many vidoes for this condition on utube. im sure they would be very helpful. keep your chin up. and im so sad to hear that you have no one to go to the hospital with.however good luck and come and tell us how you got on, god bless you love grace xoxo
Hi Crusee, I was suppose to see Mr N T Davidson, twice they cancelled my appointment to see him so I'm now seeing Mr Birender Balain tomorrow. I've hospital transport coming for me as I don't drive and the train station is 2 miles away and I'm not very good walking long distance with having Emphysema. Is this the Consultant you saw???? ☺
I see Dr El Gaby for my RA and Mr Niall Steele for my other problems with my legs.
Gobowen hospital has a very good reputation and is used by top athletes and other sportspeople.
I find Dr El Gaby a bit "off the wall" he tends to talk to my hubby and not me.Think it may be a cultural thing but nevertheless annoying all the same.
I havent heard of these consultants you are seeing but that means nothing there are so many there,
I sincerely hope your appt goes well tomorrow.
Just to let you know there is a very long corridor from the main entrance to the consulting rooms so make sure you get a chair that someone can push you along in or have a wheelchair with you.
Hi Crusee, I'm going to Outpatients Department (Location 4) RJAH ???? I last went to Gobowen Hospital about 18yrs ago but I moved house and all my notes were lost. I was going through a difficult time at the time so forgot all about it. My ex hubby was abusive.
The hospital layout has changed completely in last 12 months.
The main entrance is now on the side and the long corridor is now closed off at the Oswestry end.Its really quite a nice alteration to the building.
I am sure your transport person tomorrow will be aware of this but just to let you know so,you have suitable mobile equipment in the hospital-it's still the longest corridor in UK.
Have just found paperwork from my last appt- I go to the same outpatients dept.
From the main entrance it is right in front of you approx 80 yards from front door.wheekchairs on left if you need one,Re elfin desk will take your name and send you to correct clinic just Roy d the corner - literally.
Sometimes quite busy when I go and seats are at a minimum so if you can rake a wheelchair your guaranteed a seat,
Firstly, you never go anywhere alone, if you are on this site. Everyone here, whether they answer or not, are with you and what you face.
Secondly, I was given a very important piece of advice, by a really highly qualified/experienced RheumyCon at a recent OH assessment for work. When you see the consultant, everything must be so bad you are struggling to cope. NEVER EVER admit you can cope with something. The minute you do, they say if you can cope, get on with it. You must paint the picture as it is on your worst day, don't hold anything back, and never ever let yourself think they consider you are putting it on.
Ok, on a good (?) day, you can do this, but out of 30days in a month, how many are good days, a third, a quarter ? If less than half, bad days dominate good (?) days. Yesterday was always your worst day, as you can remember within that timeframe, so tell it how it was yesterday. They have no idea what it is like to live as we do, so all their knowledge is from feedback, never experienced.
If you need support, I am here, in the last 63yrs having been through just about everything the medics can throw at you, either here on the open site, or you can PM me,. You are not alone, don't struggle, we can help support you and give you strength, just ask !
Hi Hayesider, thank you for your reply. I can't remember a good day lately as the pain has become unbearable. I suffer from other illnesses as well so we're as the Sun is heat treatment for my back, it is hell for my Emphysema. It has bought me to tears the TLC I have had from this forum as my daughter's aren't bother. I will let you know how I get on tomorrow. ☺
Hi Madlegs1, thank you for your reply. I have written some questions down to remind myself to ask. Also I have a copy of the medication I take, some magazines to read and not forgetting my tablet to play my games on. ☺
Hi Grace, thank you for asking how I went at the hospital. It went ok, injections, stronger painkillers and physio needed. I've posted about my visit to the hospital in a bit more length. Thank you for caring, at the moment I feel like my daughter's aren't bother. Thank you. Love Gan x
thats good news that your getting some help after all those years going it alone so you must be delighted. yes i'v got a daughter to and when i was ill ten years ago she wasnt bothered but things change and she is bothered now that she had fibromyalgia now herself and she did say sorry mum. im very pleased that your getting the relief from pain and physio. love grace xoxo❤️
Hope you have recovered or even found your way out of the hospital. I'm picturing you still wandering around long corridors in a wheelchair looking for a way out.
Please let us know how you got on. If you are still alive.!!!!
Of course - if you are not - we fully understand your inability to reply.
Hi Madlegs1, I'm back. I'm still alive and kicking. OMG, what they have done to the hospital is amazing. As soon as I went through the main entrance, department 4 was straight ahead. I've put a post up about how I got on in length but doc suggested injections, stronger painkillers and physio. 😊😊
Hey, so glad your worst fears evaporated as you walked through the first door, sometimes, we all get a chance at that experience.
Sounds like you found a good consultant, one who understands Fibro, and what is needed. If you get the chance to contact Physio for appointment, ask if you can have one that does acupuncture, it can be really pain releaving.
I have my consultant's secretary's phone number, worth a gold medal, as can navigate around a stuffy appointment department.
Really really happy you finally got what you needed, and hope my long post was of some help.
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