Valued Advice

[maxgarry]

Hi everyone, i'm writing again in the hope that I can receive some expert advice from the forum. Your opinions are of tremendous value and help me to make important decisions.

I am due to have surgery on my neck as my balance is terrible and my legs are extremely weak, along with other spinal problems. I have had 3 previous back operations. I am told that my spinal cord is being pinched in several places. Despite being told that the operation/s will not improve things, it will prevent further deterioration. I have real problems with various joints, shoulders, knees, particularly my left shoulder. The chronic pain stretches from my neck down to my hand. I have been taking steroids for about 4 years now, the only advice or comments from my GP has been "are you off steroids yet". A rheumatologist told me about 3 years ago to gradually reduce until I have stopped. This has proven impossible, again with no help or guidance. Just a repeat prescription every month.

More recently I have been struggling at a lower dose, between 5mg and 10mg, but coincidentally when increasing the dose to 20mg from 10mg in desperation, the chronic shoulder/arm pain has more or less disappeared. Is this a coincidence?

There have been a few errors during my wait for surgery. A pre-op originally in October 2019, but then nothing until I contacted the hospital to be given an echocardiogram in March 2020. To come up to date I had another pre-op about 4 weeks ago, but was told there was a significant risk due to diabetes and heart problems. I was told that I needed another echocardiogram and better blood sugar control if I was to go ahead with surgery. I was given a date of Thursday 22 July for surgery, but it was not realised that the echocardiogram had not been done, hence a further delay. No mention of my blood sugar which I am attempting to control with 3 insulin injections per day. I was also not advised that I needed to stop taking Aspirin seven days before admission.

Sorry for the long post but my question is this:

Should I risk surgery in the knowledge that the risks are great, and the end result may not be an improvement. If steroids do help I obviously need more advice, especially as the recommendation is to follow the sick day rules. I don't think there is sufficient knowledge within the medical team to correctly deal with my combination of problems.

Your valued opinions would a great help.

Thanks

[PMRpro Ambassador]

I think I agree with you about the expertise of the team! And I honestly don't think anyone here is in a position to advise you. You need a mutlidisciplinary meeting with surgeon, rheumy and endocrinologist - but I don't see that happening somehow.

[piglette]

Are you saying that you failed the pre-op? What did they say? They get you ready for surgery which should be within twelve weeks or you will need another pre-op. They will be very careful that you are OK for surgery. They don’t like leaving themselves open to problems with people on the operating table.

[maxgarry in reply to piglette]

Thanks to everyone who has replied to my post. There are several issues. I had a pre-op in 2019, the ongoing delays afterwards were, I can only assume, due to admin errors. Over several months I spoke to several different "medical" people who seemed very vague about my situation. I have since had another pre-med and given a surgery date of Thursday 22 July. This was postponed when I pointed out that I needed to stop taking Aspirin 7 days before! I have signed the consent from which absolves them of any blame should anything happen.I am today attempting yet again to have a face to face appointment with a GP to discuss my diabetes (3 injections per day), sick day rules, and heart weakness.

So far proving impossible to speak urgently to anyone.

[piglette in reply to maxgarry]

They will be very careful if they know you are diabetic. Is it type 1? There is always a risk for any surgery, but no surgeon is going to operate if there is an unreasonable risk. It is really up to you to weigh up how you feel about the potential outcome. Discuss it with your family perhaps and check again with the surgeon if you are not sure about things. Have you had the echocardiogram now? It sounds as if the hospital is happy to operate from what you say.

[SheffieldJane]

I am really sorry that you are in such a horrible situation. I would want more independent opinions, I really don’t like those odds, or how you are being treated. This is not our area of expertise, but we can feel for you. Wishing you the absolute best!

[Hildalew]

Somewhere in my brain the expression 'being fit enough for surgery' is nagging away at me.

Please make sure that - among dealing with all the pain and puzzles, wondering about how much pred is good, and coping with the massive 'admin' and stress involved in managing appointments - and contemplating surgery

you are looking after yourself properly on a basic level - eating nutritious food, resting when your body tells you to and, in particular, taking the vitamin and/or mineral supplements recommended to rebalance your system when pred and other medications are working away 'sorting' things.

And - no, I don't think it was a 'coincidence' that things improved with the higher dose of pred. It troubles me greatly that you talk about 'no help or guidance' on reducing the pred dose. At least some of the pain you have had to endure is likely to be the effect of not being at the right level of pred.

There is a wealth of advice on tapering on here. I believe you would find it helpful and encouraging if you were to take a look. I am SO grateful to whichever friendly spirit guided me to this place shortly after I was diagnosed nearly 3 years ago.