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Fibromyalgia Action UK
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I can't make a decision

I am seeing my Orthopedic neurosurgeon on 11 December with a number of bone scans he's asked me to get. I had an accident 13 months ago and broke my sacrum. I have improved in the sense that I can now walk, stand in A line, cook etc. I had extensive nerve damage and couldn't walk for 6 months. I still have nerve pain but also experience severe pain when I walk to far, which is not far at all. I have been told that s1 l5 won't heal and I would need a long rod inserted to fuse the bone. That there is no guarantee it will stop the pain and if anything I will only get a 50 to 70 percent improvement. My family is totally against the surgery. However I can't make up my mind. Please let me know what others think, I feel desperate

36 Replies
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In cases like this you listen to your surgeon...not well meaning family.

He will give you all the facts and figures and be honest. Sounds like he has done this already.

Only you can then make that decision. A hard one. Have it done then wish you hadn't. Or not have it done and wished you had.

Which for you would be worse?

I know my own answer...

x

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Thanks Bananas you are so right. I forgot to mention that the surgeon told me that out of 200 bone fusions they do only 1 is done on the sacrum. However I will take you're advice. Thanks so much.

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As said have a good chat with your surgeon get as much info as possible about the pros and cons, it's a big op and you say there's no guarantee it will stop your pain and then maybe 50/70 per cent improvement, is your pain unbearable and you feel you can't cope with it, or are you managing ok as you are, maybe if it's manageable you could put an op off for the moment and see how it goes, get as much info as possible , good luck

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Thank you so much for you're advice. So far what I'm hearing about the surgery and outcome isn't so great. Thanks again. Lola

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Good luck, take care 😃

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you need to consider risks of surgery v improvement and quality of life. This is a major surgery.

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Yes that's true. Particularly since the surgeon said out of every 200 fusion surgeries they do only 1 is on the sacrum. Thanks Lola

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Neurosurgeons have a more delicate approach to spinal surgery. If your surgeon spcialises in backs you should be fine. You could research him on-line too. I had de-compression surgery done in Germany as my spinal cord was impeded by boney overgrowth - back in 2007. Keep asking questions until you are happy 😊

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Thanks for you're advice. My neurosurgeon is fantastic, I researched him on line before I saw him. I live in Australia and in June this year he took me to a University with all my scans to meet with his team of neuro orthopedic surgeons. One was keen on the surgery and the oter 7 were not. I will write down some questions I want to ask him before I make up my mind. Thanks so much Lola

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So hope all goes well for you. It sounds as if you have some good guys around you for when/if you make your decision. 😊 You seem to have made good progress since your accident too. B12 injections can help with the nerve pain I found. VitD is anti-inflammatory and even though I live in Greece I still supplement to keep levels optimal 😎 Every little helps !!

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Hi Marz thanks so much for you're advice. I take Calcium and Vitamin D every day and my GP ives me Prolia injection every 6 months for my bones. I am on Pregabalin, cymbalta and a 20mcg Bupranorphine patch. Most of these meds seem to have stopped working. I will definitely try the B12 injections. Thanks so much and wish you all the best. Lola

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Only passing on information I have learned from others who know more than me on the Thyroid UK Forum where I have been an Active member for seven years - so please research for yourself. Am sure you would anyway :-)

How much VitD are you taking ? VitD improves the uptake of calcium from foods so not always good to take more. Have you thought of adding in VitK2 MK7 which directs calcium away from the arteries and soft tissues and into the bones and teeth. Also Magnesium is another important co-factor. Bones need more than VitD and Calcium - they good T3 levels - good B12 levels and other nutrients. See link below ... Docs rarely seem to pass on this information sadly ...

drmyhill.co.uk/wiki/Osteopo...

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Hi Marz I am taking 1000 units of vitamin D every morning, plus the calcium. I take a magnesium pill every night. I always thought that Vitamin K was taken to thicken the blood. I read you're profile and you are an amazing woman. With what you've been through and how you've managed it. Thanks so much for the information. I will check the link and research more. I plan to try and overcome osteoporosis. Thanks for everything. Lola

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You may wish to read the book - Vitamin K2 & The Calcium Paradox - by Kate Rheaume-Bleue - a book that will explain it well. There is K1 & K2. 😊 Have you tesearched the injection you have ? - am sure you will have. Take care ...

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I was ment to have that done but I said no when they told me what the out come would be so I had my nerves burnt and it worked marvellous but only you will know if it. Right for you all the best

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Thanks so much for you're help. When they told you what the outcome would be was it similar to what I was told? Also what is nerve burning please, I've never heard of it. Thanks again. Lola

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It's where they put electrodes down needles that are left in your back they put a current down them you don't feel anything but it do make you feel sick you are speaking to them all the while but Claude I had it done

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Thanks so much. Lola

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Go with your own gut instincts after the surgeon has given you are the pros and cons. I would consider any dangers versus the lkkehood of success. Only you know how much pain you are in and what you would risk to have the likehood of it being taken away. I wish you well in whatever you decide.x

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Hi Rosewine thanks for you're good advice. This is exactly what I will do. Most of the time I am in pain but it's manageable. However if i do too much i am in agony for a couple of days. And too much isn't very much at all. I will take you're advice though. Thanks again. Lola

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What my big question would be if the operation could make me worse. know we all struggle like mad but I would hate to be any worse as I have been in wheelchair before and don't want to go back. Also ask if you don't have it will you deteriorate too.

Sounds life changing or you

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I believe the surgery could make me worse but I will ask the surgeon. It was so horrible when I couldn't walk and like you I never want to be in that situation again. The surgeon has told me I won't get any worse if I don't have the surgery. Thanks so much for you're advilce. Lola

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Would you like me to ask the Bone Work community if there is one of our number in Australia? If you would like to look at Sharon Wheeler in Seattle, she devised the Bonework and Scarwork protocol. She has got set bones to realign and also broken and parted bones to migrate together. I have straightened a broken finger which had set crooked - nothing brutal, I just held it and it straightened. I always think that surgery is the last resort. However, it is your decision and yours only. Good luck.

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Hi Penny I would like you to contact the Bonework Community and see if there's one in Australia. I will definitely look up Sharon Wheeler. I also believe surgery is a last resort. Thanks so much for you're advice and all the best to you. Lola

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I’ve asked the question and will let you know when I get an answer.

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Maybe you could postpone your decision? My husband & I always say, "If you're not sure, don't do it!" (or don't buy it, or don't ..... Just don't).

Maybe in time you may feel more educated, more sure, or you feel your pain is worse & you can't move as well & you might need it.

It's never good to do something under pressure or without all the information there is on the subject. Apart from anything - you're entitled to a 2nd opinion - especially on a big decision. Who's the top surgeon in this field? Do you know?

There's no mad rush, is there?!

Take a breath, clear your head - don't think about it for a while, don't listen to friends/family - listen to surgeons, studies, research, knowledge, facts....

Maybe just saying OK, I'll give myself a fortnight off about this.... Then after I've got a few other things sorted out in my life - I'll ask about more information/who's the best private surgeon/or I'll get a 2nd opinion/or contact people who've had this operation (a definite for me!) And.

Listen to "your" own instincts. - You know what's best for you.

I hope I've helped.

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Hi Featherduster you and your husband are right. I am not hearing about good things about this surgery even from the surgeon. My sister is totally disabled from a surgery that went wrong 6 years ago and I would hate that to happen to me. I will take you're advice, research more and get another opinion. Thanks again.

I

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I'm so glad. I know nothing about this surgery, but I worked in mental health, group therapy, counseling - I had plenty of counseling myself too over the years.

It's good to talk.

I know about back & pelvic pain, unfortunately - I'm sofa/bedbound most of the time. I know about going to consultants too.

I don't have that "reverence" or "awe" for doctors - I started in nursing - but I can still get pushed or hurried by them about into making a quick decision.

I think you have to step back sometimes.

It's the smart way.

Your feelings & thoughts

+ logic & facts

= the information you need to start to make a calm, mature decision.

The one for you. Ok?

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Hi I am only in severe pain when I do too much but unfortunately that's not much at all. I felt really sad for you when you mentioned that you are mainly bed or sofa bound..

You are obviously a very compassionate person. Can you tell me what happened to you please.

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Hi Lola, This is the first time I’ve posted on here but I felt I may be able to offer some information if not actually an answer to your dilemma. I’ got ME and RA and Osteoporosis from yrs of steroids. My bones have become very brittle and I fell a few times and have several spinal fractures all down my spine. I could not begin to explain how much pain I felt at the beginning..esp first thing in morning. I was finally referred for a Vertebroplasty where they inject a liquid cement into the spine which sets and stabilises the broken area. It’s more of a procedure than a huge op and I wondered if it may be something you could ask your surgeon about..kind of a middle step between doing nothing or opting for the big op with a low chance of a cure. I had 3 fractures done and 2 feel much better..the 3rd is still sore. Really hope you find something which will help you..it definitely is an area with so many nerves and the pain is unbelievable. So sorry you’re going through this..sending a huge hug from Jenny 🤗 X

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Hi Jennycats Thank you so much for you're suggestion. In Australia we call the bone cement procedure Sacroplasty. I discussed this option with my neurosurgeon and the other 8 neurosurgeons at the university. They said that because the bone that won't heal is so long the cement wouldn't set properly and would leak. This would lead to another surgery getting the cement taken out. Therefore I can't have the procedure. I don't think I will have the major surgery either. Given the neurosurgeons said the surgery might not stop the pain, I will feel the long rod, only a 50 to 70 percent improvement I don't think its worth it. Thank you for you're help and try not to fall over again. Lola

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Hi again Lola, Acht just thought it might have been something that hadn’t been offered to you or mentioned. Am glad you have finally made a decision though. I think with the risk of even more pain from the rod I would have made the same decision actually. It’s maybe better to keep the option open to discuss the surgery in the future if the pain worsens or becomes totally intolerable..rather than having the op just now then regretting what can’t be undone. Hope you find something to help with the dreadful pain meantime..and it truly is agony for sure I know! And Yeah Thanks will plod on here and try not to fall again..becoming a bit of a habit with me just now though! So weak and exhausted. Take care there.. and hope you feel relief soon. Love and hugs again 🤗 X

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Hi Jennicats it's a shame I couldn't have the Sacroplasty but that's life isn't it. I will be seeing this neurosurgeon every 6 months for scans etc so I can always change my mind about the Sacroplasty if I have to. Thanks, Lola.

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Good Luck Lola! We’ plod on together..knowing we’re not suffering alone! And try to make the most of life no matter the obstacles. Tricky though so will be thinking of you lots..and praying for something they can eventually find to help us all 💕😊xxx

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Thanks Jennycats i really appreciate your kind words and thoughts. Bless you. Lola

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👍💕😊xxx

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