Mary-intussuception3 years ago

I think I would phone the MRI department on Monday morning and explain your needs, that you would need assistance with getting on and off the scanner bed & getting into position on it etc. If you speak to them when you are called in at the appointment they should be helpful anyway. But if you feel better having a word in advance . . . . Do you know if there is a hospital near you with a Scanner you can stand for? Ask them this?

You could also phone the Spinal Surgeon's Secretary on Monday morning and ask her/him if you could speak to the Consultant or at least pass a message on about the new pain. They might consider amending the scan request ?? Not sure.

For your pain meds - I can only think of seeing /speaking to GP, Consultant or Pain Clinic referal (which takes time so not much help now).

Apart from meds - warmth .

Does the morphine cause bowel problems, are you taking Lactulose medicine and drinking lots of water? If any constipation, this might cause extra pressure and cause more pain ( just a thought). **

Wondering why you're on Prednisolone if you have Osteoporosis? What dose are you on? Still 10mg? What was your last CRP blood test result? If ok now will Prednisolone be reduced?

Also, are you under a kidney Specialist?

Sorry you're in so much pain xx

Edit:

** Just read some of your old posts and guessing you are also on Lactulose medicine and drinking lots water.

Christinecove in reply to Mary-intussuception3 years ago

Hi I’m so sorry to hear of your pain and now added pain. I too am in chronic pain through operations and nerves damaged. Mine is a long story, but as far as the MRI goes, you should ring them. I’m not sure where you live, but in the past 18months I have had a few MRI scans and each time I’ve been to 2 different open scanners in London. There is always a little longer to wait for them on the NHS but it’s well worth it. Make enquires through your GP surgery even where your nearest one is, as you just sit slightly and they tilt the machine etc etc.

I hope you can get some satisfaction.

Thanks

Chrissy Cove

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lara1953 in reply to Christinecove3 years ago

Thank you so much for your help and advice. I know that you all have your own pain issues and I am so grateful that you have taken the time to help me with my pain issues. I am waiting to hear from the spinal surgeons secretary regarding the MRI. I investigated where I could have an upright MRI and the nearest one to me is Corby, Northamptonshire. In the meantime my GP has prescribed oramorph to take in conjunction with the slow release morphine. It has done nothing for the pain whatsoever. The paracetamol seems to work for a while to take the ''sharp edges'' off the pain. I am going to try some ibuprofen and even though it causes me stomach pains I think it will be ok short term. I am also taking lanzaprozole so that should help with any stomach problems. Regarding the kidney problems, I have an appointment with a urologist on 25th. The kidney problems have caused severe swelling of my toes, feet and ankles and is now going up my legs. I am also in a lot of pain with this. I feel as though bits of me are going to start dropping off Haha! At least I'm still smiling!

Joke of the day to make you smile: 'did you know that exit signs are on the way out?'

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Christinecove in reply to Christinecove3 years ago

Your welcome I hope it’s all goes well for you

Thanks

Chrissy

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lara1953 in reply to Christinecove3 years ago

Hi everyone wishing you all a pain free day. I got up at 1am and the new pain was so bad that if someone had told me that eating my own poo would have stopped the pain I would have done it! The least potent of my medication is paracetamol and amazingly its the only thing that helps. It doesn't take away the pain but it takes away the sharp edges of it. I can't take that until 5am as it would leave me without my bedtime dose. Decided to try the ibuprofen. Took a lanzaprozole capsule then half an hour later had 3 rich tea biscuits. Then took the ibuprofen. An hour later and it has taken the edge off the pain. Instead of coffee today I'm going to have peppermint and liquorice tea. So hopefully doing it this way will stop any stomach problems. This pain is so weird, paracetamol and ibuprofen take the edge off but the oramorph does nothing. On a completely different subject, does anyone have vivid and weird dreams whilst on opioids? I have loads of them and it's like being in some fantasy novel. I have started writing them down and when I showed them to a friend she said that they were so hilarious and that I should try and get them published. An example of one of them involves chickens covered in fur and running around meowing. I really look forward to these dreams as it's a form of escapism from the pain. Once I have got them all typed up, if anyone would like a copy emailed to them please let me know. If I can help someone by making them smile then that would make me happy xx

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PainSucksBigTime3 years ago

Dear Lara,

I am so sorry to hear of your pain.

Firstly to say that they will have all sorts of cushions, supports, grab rails etc for the MRI and as long as you explain to them the pain that you are in - then they should be able to accommodate you for the scan and they should not force you to lie flat (it is usual for everyone to have a cushion behind the knees).

However, I have to say that the MRI may not be as conclusive as you want it to be (they will scan the whole of the lower back and hip area, I would think)... the statistics show that for 3,110 people MRI scans showed spinal disc degeneration in 37% of 20 year olds. 68% of 40 year olds and 88% of 60 year olds (Brinjikji et al 2015) and the large proportion of these people had no pain - so the imaging is not conclusive at all.

So I would say that you need to talk with your GP about getting pain medication that allows you to sleep and move - using muscle relaxant type medication (Amitryptiline, Diazepam, Gabapentin etc) as opiods may not work on the pain and have other concerns.

Then I would work with an osteopath, chiropractor or physiotherapist that you trust in order to understand the exact pattern of your pain and try to understand the pain triggers and start to work on a very gentle movement regime to start to rebuild your life.

Before you go any surgical route, ask the surgeon lots of questions about the probability of pain reduction (bear in mind that success is not 100% minus all of the bad probabilities that they tell you, and also that for them success is measured as completing the operation as defined in their notes eg decompress the nerve, not whether this is successful in getting rid of your pain). Plus google 'Failed Back Surgery' - it is much more common than you may think.

Finally, I would suggest having a look at thefaifix.com to give you another view on hip and groin pain.

Very best of luck - thinking of you and crossing my fingers. Best wishes.

Hidden3 years ago

Watch those stomach meds they caused issues for me and impair your kidneys since I took them off n on past 5 years I know have lower functionality. Morphines hard on the body and mind. It builds up and you get messed up without realizing it using it daily. I know I went through hell from it. You sound inflamed more right now try to keep those bowels moving and gas out. If morphines not helping I wonder if it’s from your stomach or else. Just my thoughts. I really understand the situation you’re in. I’m so sorry. I hope they sort you out & get moving on your care. You’re brave

oldman19523 years ago

Hello lara1953, I am oldman1952. I am also in severe chronic full body pain. I was thinking about your problem of lying down pain increase. You could fill the hollows in the back with some small towels rolled up and slid in and under though these natural hollows. I have tried it before and it works for me. You could try it when you are in a similar position when you are on your bed. That way you can be ready for the MRI. Best regards Oldman1952. "One year older and deeper in debt."

lara19533 years ago

What a start to the weekend! On Friday rang and left another message with the spine surgeon's secretary to call me back. Heard nothing from her so phoned my GP surgery and asked if the doctor could ring me back to discuss whether he could refer me for an upright MRI scan. He rang me back and said he wanted to visit to investigate the new pain I was getting. When he came round he decided to also examine my stomach. I was experiencing pain everytime he pressed my stomach it was very painful. He said I might have diverticulitis and would admit me to hospital. All of my observations were normal and I said that surely if I had diverticulitis I would be experiencing pain without pressing on my stomach and i would also have a temperature. He insisted i go to hospital so i gave in and said ok. He called an ambulance and I got to the hospital at 1pm. Gone are the days when if you were admitted to hospital you were taken straight to a ward. Not any more, was dumped in A&E. There must have been over 100 people in the waiting room. Settled down with my kindle and prepared myself for a long wait. There was a lady in the waiting room who, everytime someone sat down next to her, became very vocal about how she had been waiting 2 hours to be seen and that it was disgusting that she was having to wait so long. In between she was going to the nurse's station saying 'have you forgotten me'. Then came back and started moaning again. Lots of raised eyebrows from other patients. Got to a point where I couldn't bite my tongue any longer and said 'sweetheart I understand you are frustrated at having to wait so long, but we are all in the same boat and constantly hassling the nurses is not going to get you seen any quicker'. She then told me to mind my own f@!#ing business but at least after that she shut up. I got seen by a doctor and she examined me and said apologies for asking this but are you sexually active. Said that if she got me a hoist I could be! Took some bloods and sent me back to the waiting room. Blood results came back and she said I had a UTI which I thought was a bit strange as they hadn't done a urine test. Gave my antibiotics and sent me home at 1am. It was all such a frustrating experience. All I want is a referral so I can have the MRI to determine what is causing the new pain and get appropriate treatment! So I am now back to square one. To top it all, phoned my sister on Saturday to let her know I was back from the hospital and her exact words were ''this is really stressing me out and I can't cope with all of this''. Thanks for the support sis and sorry my condition is causing you problems! Anyway that's my rant over with. I hope you all have a good day and are not in too much pain. Found the below song on YouTube and it is hilarious! I'm sure a lot of you lovely people will be able to relate to it. I guarantee it will put a smile on your face. It's called ''Sittin in the waiting room the singing patient''. Love and gentle hugs to you all xx