Can I have your thoughts please

hi

I went to the neuro surgeon today for the results of last weeks mri scan and the results were not as I hoped. They weren't disastrous but it appears i have osteoarthritis throughout the spine, the 4 burst discs in my neck that they knew about but now my spine is starting to go in the wrong direction and the discs are now compressing severely into my spinal cord. Also the spinal fluid is being blocked and there is something anatomical that he hasnt seen before, but he thinks its just me not anything sinister.

The surgeon said I could leave this and put up with the pain and pins and needles but maybe get future real problems.But he recommends an operation to remove the discs, replace them with plugs and insert a metal plate.

My mother went ballisitc when i told her and really upset me as she yelled down the phone "no, you'll end up in a f...ing wheelchair" and I haven't heard her say stuff like that before. That shocked me and she couldn't talk to me when I called at 11pm.

My husband says why am I even thinking of not having it, if a brain surgeon recommends it , and my two sons agree with him.

The doc says that if i have it done as he recommends, the potential risks are below the neck paralysis, loss of voice and infection. The benefits would be maybe less future problems as my neck wont hold itself up, pins and needles gone, but no guarantee that my neck pain will reduce.

Has any one had this type of procedure (which he wants to do in the next few weeks), I will need to stop my Humira which over the past few weeks has helped, so he needs to know by tomorrow.

I am in pain, but i am in pain with the RA, I am scared of potential problems but then balance that as I think he would not say i needed something if it wasn't really needed. I have put my family through so much for the last 18 months with my pain, disability and lack of mobility to think of them having to get me through a neck/spine op is upsetting for me.

I would really value some honest advice before I call him thursday.

Thanks for listening

Axx

18 Replies

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  • hi allanah

    i find just giving you 24 hours to make your mind up abit of a tough call to make .. my advice is to make the call and say yes ,, you want the operation .. you can always say no at a later point . atleast this will give you more time ..

    i cant give you any advice about the operation sorry ...

    whatever you decide i wish you good luck

    andy .. xx

  • I agree with Andy, say yes for now assuming that the op. will take them some time to arrange. During that time you can research and think about it. Who will actually be the surgeon, what success rate etc. etc. ask for another appointment if you need it and take your OH with you.

    It was probably a shock and upsetting for your Mum hearing it. Given time to think it through and understand it she may think differently. But hey, your OH and sons see you and know what pain you are going through.

    Really do send big hugs to you.

    Judi xxxxxxxxx

  • Hi Allanah

    This is very difficult and only you can make the decision, I suppose you need to weigh up the pros and cons.

    I don't understand why he is making you rush into your decision, I think that's a bit harsh!

    As the others have said if you say yes, you can get cracking finding out info etc and then pull out if you decide it's not something you want to do.

    Your Mums reaction was just shock I'm sure. When she has had a chance to think things through she will be able to talk to you about it.

    Good luck with whatever decision you make.

    Sending you hugs of support.

    Mary x

  • Allanah,i say yes as well,because if you didn't need the op the drs wouldn't say you need it. Your back must be very bad for them to even suggest it let alone say you need it. Like as been said before your mum is in shock. You might be a new woman afterwards!! I wish you well whatever decision you make. Love Sylvi.xx

  • HI Allanah. I can't really advise any differently to others here. I'm so sorry that you've been put in this dilemma just when things have been going so much better for you since you started Humira - or at least your spirits have been up a lot with all the rock festivals etc.

    This is medically a bit different but I've two good friends who have had operations on their spine - one a few years ago for a very similar problem to that which you describe. She has some connective tissue disorder/ inflammatory arthritis but not RA. She had the same outcomes described to her and she went for it very apprehensively. She has come out of it very well - is entirely mobile now and got married a year ago and her career as a composer/ musician is flourishing once more. The other had something called Cauda Equina and left the decision rather late because she wasn't diagnosed correctly to begin with (no MRI done) and so 3 months ago she was taken to Aberdeen as an emergency and had to have spinal surgery. She is making a very slow recovery, wishes she had made the decision sooner and has lost some feeling in her bum, leg and sex organs she tells me so I do think that your decision should be affirmative - certainly at this stage.

    Take care and as Scouser rightly says we will all be with you all the way. Lots of love Tilda xxx

  • I would not like to influence you either way, but whatever decision you make will be the right one for you. Just listen to that inner voice we all have, that will be the right way to go.

    I can only repeat what others have said that your mum was in shock.

    Take care xx

  • Neck surgery can be incredibly risky - far more than similar surgery in your lower back. Your mum did react rather strongly, but in some ways I think she has a point, because the risks of the kind of damage she worries about are actually very high.

    I think before you make a decision on this, you really need to get a second opinion. You have a right to one in the NHS, so push your GP to refer you again. What you need to be asking is how great your risk of severe permanent damage is if you DON'T have the operation now, how much an operation would be likely to improve things, and if there is anything else you can do to help minimise problems. Also ask very strongly "what percentage of patients that you do this operation on get excellent benefit, and how many end up the same or worse", and "how often do you do this kind of operation on necks". You might be surprised to find that actually it doesn't have a wonderful success rate.

    If you are just getting the kinds of problems like pins and needles, and don't have severe neurological complications (like bowel or bladder dysfunction), then that probably really isn't enough to justify the risks of an operation, but this is something you need to talk with a proper medical specialist about.

    Cauda equina (as someone else has mentioned) is a completely different matter - surgery for that carries far less risks of bad effects because it is much easier for surgeons to deal with, and everyone having that kind of surgery will have got to the point of severe symptoms anyway (bowel and bladder control, paralysis, etc) so not doing surgery isn't an option.

    As for your husbands opinion - yes brain surgeons will recommend surgery, because they are surgeons and thats what they do. That doesn't mean that surgery is the best or only solution, it just means they think there is a possibility it will help. They won't generally recommend non-surgical things because thats not their field. Thats why it makes sense to get another opinion, and give yourself time to consider options and not immediately book yourself in for surgery.

    It is also extremely unethical to only give you 24 hours to make this kind of decision.

  • I would say yes to the op - and use the time between to get more information.second opinion. The risks are potential risks which surgeons have to make you aware of. Good luck!

  • Thank you for all your helpful insights. I am so grateful for the support.

    I have spent the day trawling the internet for interviews with patients who have had the operation and consultant interviews about the operation. I also telephoned a spinal surgery helpline who were very helpful. One of their main points was to call my rheumatologist and discuss it with him also and I have telephoned their helpline and they agree it would be good for me to have a discussion with him and I know the neurosurgeon is going to contact him as well for a discussion of my case.

    so I will let you all know the outcome of these discussions but the info I have is that there is an 8o% chance the op will help, and a large possibility of nerve damage if I dont have it. And the non surgical options will not be of benefit it appears from information from the spinal sites.

    Still thinking and waiting for a phone call! Axx

  • Hi

    So I'm still waiting on a phone call from Rheumy and I want to ask him is now a good time for me to come off the drugs just as they are starting to work, or should I wait. I havent called the neurosurgeon to book the operation cos as I agree with earthwitch who said its not enough time to get the informatiion I need to feel I am certain.

    But I do plan to call tomorrow to say yes I will have the op(as the future problems not being able to move my arms are to hard to envisage) but then this will buy me time to talk to the Rheumy (as everyone says) and the two doctors to discuss my case if needed.

    Thanks again for all the comments and suggestions, and mum is still not talking to me, oh well, she will come round I think.

    I have investigated the surgeons reputation and its excellent , quotes like "the best man for the job" being said.

    Axx thanksxx

  • Hi,I dont know if this helps but Ive had cauda equina after a really nasty accident & all that your friend said tilda is correct. Without the op I would of ended up in a wheelchair & worse, of course its your decision,I agree that the docs would not do it unless they needed to. My son also had a back op & I hated the thought & felt far worse than when I faced mine, which was far more serious. He is much better now & is back playing rugby & has no pain,I cant say the same for myself ( but then I never played rugby!!) I wish you luck caza x

  • oh bless you Caza, I know that is a very serious problem and you sound brave to have managed to get through it.

    My son played rugby to Scotland International level and my worry was always he hurt his spine, so I know how you must have felt.

    I phoned my mum tonight and she still wont agree that I should even consider an op. I told her I was looking at all the evidence and pros and cons and she may just have to worry but support my decision, and she refused to support me. Its so out of character for her, so I just hope she will come round. I dont think I have asked anything of her whilst I have been treated for RA as she still lives in Glasgow and I'm in the north east but she would worry i'm sure. oh well, Axx

  • I had a similar neck surgery but a titanium plate (looks like a ladder on MRI) holds C5, C6 and C7 upright. I was losing the use of my left arm so the surgery was hurried. Recovery is about six weeks although I felt much better after surgery. What a relief! I have RA, osteo,Sjogren's, Raynaud's, Hashimotos, etc. I would not hesitate to have the surgery again. Recently, I began acupuncture to help with neck stiffness. Amazing!

  • Thank you, it sounds like i am having the same op with the plate and new joints too. I am glad it has helped you, it gives me hope.

  • Hi,when my son had his back op, I couldnt eat sleep kept shaking & crying I was in a terrible state,thank goodness he was very strong & very positive. Im sure your mum will come round & be there for you whatever you decide. Its a real worry isnt it, sons playing rugby but it makes them what they are. Difficult time for you. Take care caza x

  • Thanks Caza

    I phoned her last night and she again said she would not support my decision if I get the op. I just then had to say well its gonna happen to save me being an old lady not able to use her arms, but no she is insistent. So I just said we will just have to agree to disagree!

    Really hard but I know she is worried but this just isnt her, but she is nearly 89 but looks and acts like a 40 yr old, she still has an amazing figure, she was a model, and still dresses amazingly including the high heels, so you forget that she is actually getting older herself.

    Axx

  • Oh Allanah what a decision you have had to make. I'm glad you have done some research as all the info you can get helps to make a decision. 80% chance of good recovery is pretty good i think. Also doctors sometimes tell you of the worst possible outcome just to cover themselves. My husband is ( as u may already know) disabled and just last year faced a similar dilemma. He was advised to have spine surgery. He said yes and then whilst he was waiting for appt he also researched things. He was told he would have a 75% favouable outcome but the risks involved included; blindness, double incontinence, impotence and of course paralysis. In the end he cancelled the op but mainly because of the surgeon. He thought he was a bit cocky and dismissive and so he didn't have any faith in him or the op. But for you i think its the right decision and i wish you all the luck in the world! Will send prayers and thoughts your way. Take care xxxx

  • Thanks for the info. I spoke with the doc today and hes relieved ia am going ahead. He will see me in two weeks then wanted to do the op last seek in october. But I have booked to go to Harry potter srudios with the kids for halloween, so he says he will delay but only till 1st week November. So that gives me a chance to do the bulk of xmas stuff and food preparation and that made me feel better. I think if my op was in my lower back I may have said no too.

    The rheumy is speaking now to the neuro guy and they ae gonna tell me what to do with my meds as i have to come off them. Thanks for the prayers and thoughts. Axx

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