need reassurance!!, Back story explaining my concerns

Hi Paul

Welcome to the forum.

This may or may not help but here's another way of looking at it. Surgeons are obliged to tell you of the worse case scenarios of any operation. If the surgeon sat you in a room and told you that there had been a case of a person nearly dying from the operation, would that put you off from having it done? Probably not, as they would be faceless case. You are bound to be more wary about it because of it being your brother but regardless of who it is the statistics would be the same, you've got to ask yourself if you would have the same concerns if it was statistics given to you rather than seeing what your brother went through. I hope this make sense and you understand what I'm trying to get at. Good luck in coming to a decision whichever you may choose. I had 2 level ADR back in January and although I'm still having other issues at the moment I don't regret having it done. Making the decision really is the hardest part and must be that much harder for you because of your what your Brother went through.

Take care.

Deana xx

Hi

I have just had Mr Ross, had my surgery 4 weeks ago now, had disc removed at L4/5 and a replacement put in. Operation was a success, no bleeding. Mr Ross was brilliant and looked after me very well. Unfortunatley bleeding is one of the risks of the operation, as is a lot of other risks which you should be aware of too eg. bladder problems/persistent back pain/disc malfunction/DVT etc. ( and I think there are some other risks associated with Men too) You can look them up on the NICE guidlines for the surgery on their website. But you should note that there are risks with ANY type of operation and you should make yourself aware of these risks and the procedure involved.

You have got to ask yourself can you carry on like you are?

I decided to go ahead with the surgery as I was depressed I couldn't do anything. Could hardly walk and everything seemed like a chore, had to use walking sticks to get around and I felt like an 80y old. In fact the last straw was when I was walking along and a elderly lady over took me!!! arrggg
The operation felt like my last hope. having now had the operation I am soo glad I went ahead and now feel brillilant even though its only been 4 weeks! Being worried is natural.. I was extremly worried before my op too.

I put Mr Ross through a grilling hour of questions before I went ahead and you should do the same of your consultant too. eg. how many operations have they done, risks and likelihood of risks occuring etc, type of disc there going to use. You should draw up a list on a piece of paper before you go in and tick them off when they've been answered. If they're a good consultant they won't mind you doing this and also it settled my nerves a great deal!! Hopefully it should do this, but if it raises questions about your current consultant asked to be referred to someone else for a second opinion . I think also you can search for surgeons on their website, and it lists all the surgeons that specialise in back surgery.

Hope all goes well.

Hi Toria,

Thanks for that. Somedays i'm alright. Like today, no actual pain, i have had less painkillers than usual, am at work, can get on the train. Driving makes it painful. I am consious its there and my back feels weaker than normal, but somedays i feel like i could carry on at this 70% of my quality of life. However, on the bad days, its like 25% and i cant wok, barely walk, do anything

I get really tired most days( mainly ddue to the pain killers), but manage.

I asked the assistant consultant what would happen if i did nothing and her response was simply "thats the million dollar questions!"

They are supposed to be contacting em today to discuss my questions. I think i will request a meeting with the actual consultant and go in with my wife and get it all out on the table. I just feel like they will look at this request as an annoyance!

I don't think they will see you as a nuisance/annoyance at all when they know` your circumstances. Patients should never be seen as a nuisance. I am speaking as a nurse and also has a patient following my surgery in June.
There are risks associated with every type of surgery no matter how big or how small and it is such an unfortunate thing that happened to your brother but everyone is an individual but like someone else on this forum said,we normally hear about these things and it's a statistic but for you it is a real experience.
I know you were not happy about not seeing your consultant but it is not uncommon to be seen by a member of a consultants team when you are treated in the NHS and it should state this on your letter...it did on mine. I saw the registrar quite a few times but my consultant was on hand to answer anything if the registrar could not. Noone can make up your mind for you except you,but hopefully your decision will be made easier when you speak to your medical team/consultant and get some reasurance. I can honestly say it was the best decision I ever made. To be honest, i did not really realise how restricted my life was until the last few months when i have gone from strength to strength following the surgery. They have to tell you everything about possible complications and I remember signing my consent for with my consultant and feeling a little nervous but i could not carry on like I was. They say if you leave these things, they get worse. I do hope you can come to a decision with which you are comfortable with. We are here to support you.
Best wishes,
Josie.

Hi

If the consultant sees you asking questions about your operation as annoying then he/she is a very bad consultant.

You should have a disucssion with the person doing the operation before you decide to go ahead, they should go through everything with you, and if they don't then ask to see someone else!! You need to trust the surgeon doing the operation and they should be open and willing to discuss any worries you have.

I don't know if you know but there is a back care charity, and they have a helpline (www.backcare.org.uk), you can either phone them or email them questions. So if you have any questions ask them too. Also they could help you draw up a list of relevant questions to ask the consultant. Their website was helpful too with some interesting articles and info.

Its a big decision ....so take your time, make sure you know everything about the operation. Also educate yourself to all the possible alternatives before you decide to go ahead . i,e make sure you've tried everything else eg exercise, pilates, yoga, etc etc

Toria

What the two previous postings have said is absolutely right, you need to write down the questions that you want to ask.

Your consultant will be encouraged that you are asking questions because he realises that you are taking an interest in your own health and not just doing something and hoping it will go right.

It sounds to me as if you need to get into the FAQs and educate yourself about what is going to happen and do ask about the worst outcome when you see your consultant.
Best,
Alastair

The consultant was supposeed to ring me on Friday. he never did. I contact his P.A today who said she would pass the message on again. I asked if i could speak to the Consultant directly, but she basically said no. When i asked who it would be i was told it would be the person who told me the news in the first place, she isnt available today because she is studying. That is not very re assuring that she is still studying yet she is the one giving me these options.

If i ask to speak to the consultant surely i should be granted this request.

Any ideas on how to get around this??

thank you all so much for responding to this, it does mean a lot to me.

thank you

The consultant will not be available to speak to you for a number of reasons, surgery, clinics or him not being at the hospital.

My surgeon is still undertaking study into further developments in ADR technology so someone studying is not necessarily a bad sign. Just that they are undergoing professional development or contributing to the furthering of medical science.

I would just stay focused and follow up your request for answers, it can take some time to hear back but worth persevering.

thanks for your advice. I will update you once i have spoken to the consultant, will probably need more advice then

thanks again

Hello Paul and welcome to Adr Support.

Reading your story I can fully understand your anxieties, your brothers experience must have been very frightening for you and your family and no wonder you feel scared. Thankfully the bleeding was controlled and your brother is okay.

Bleeding is a risk for anyone undergoing lumbar disc replacement and even though hospitals do their best to minimize risks with, for example pre-op assessments, blood on standby for transfusion if necessary, these complications do occasionally occur. As others have mentioned you have to put your trust in your surgeon. You are going to be anxious no matter who undertakes your operation because of your brothers experiences.

I have had my spinal surgeries at Warrington and it is fine. Mr Shackleford's NHS clinics are incredibly busy and there can be over 50 patients per clinic so not everyone can be seen by the consultant. Although I have no personal experience of Mr O'Malley, I expect his clinics are similar too.

I do know that Mr O'Malley was a consultant at Warrington in 2004 when I had my lumbar surgery, so he has several years in a senior position under his belt. He has been mentioned on the forum before but I do not know any of his patients. There is a little about him in the posting which is in the pre-surgical stories section under the topic "O'Malley??" (topic began 5 Nov 2008)
URL=http://z6.invisionfree.com/adrsupportuk/index.php?showtopic=849] [/URL]


When I was undecided about the surgery I made an appointment with the Spinal Physio at Warrington and she talked me through the post op protocol and kindly put me in touch with another patient who had already had the surgery which was helpful for me. (The forum wasn't up and running then). Perhaps you would feel reassured if you spoke to some of Mr O'Malley's TDR patients?

Another option would be to email or write to your consultant with your specific questions. ( You will find his email address on the Spire Cheshire website in the Consultant Profile section)

Of course, one way to see him personally would be a private consultation but that would cost around £250.

Hopefully his registrar will get in touch and be able to answer your questions and reassure you, the majority of people do well, look through the successful post-op stories on here. Please don''t feel you are being a nuisance to them, you're not and I'm sure they don't see it that way. Learn all you can and then you can make your informed decision about proceeding with the surgery or not.

For me having the lumbar TDR's was one of the best decisions I've made, (making the decision was the hardest thing about it) and I have no regrets whatsoever.

Very best wishes to you

Lynda
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Hi Paul,

I am sorry your brother suffered a bad surgery experience, but glad that he is now ok. I totally understand your worries with regards to getting the right opinion from the right person. I am having adr done in December by Mr. S. at Warrington but I saw a different spinal surgeon first in my local area (Yorkshire). I feel that he messed me about for a good year before coming to the conclusion that he wouldn't help me. Fortunately I found this forum, and Mr. S., and haven't looked back since; it has still taken 3 years to get to this point, and I'm sure you'll appreciate that these things can take a while to sort out. My advice would be (as others have said), to persevere with getting your questions answered / seeing the person you want to see. It is paramount that you are confident in the surgeon's abilities and that he/she has reassured you and answered all your questions. At the end of the day it is your decision how you proceed but I think you will feel better having all the facts. I also think it is normal not to be seen first by the consultant, but a member of their team (they all work together in reaching decisions). I saw the specialist spinal physio working with Mr. S. twice before I saw him for the final decision, so basically I have seen him once, and won't see him again until he operates.

Good Luck with your consultations.

Elaine

Hi Paul

Just to reiterate what everybody else has said really. My surgeon always sees his patients on their first visit but after that you tend to see his registrars. Quite often when I've had appointments for follow ups if I've had a specific question the registrar has gone to speak to my surgeon so they do work as a team and your surgeon is kept in the loop.

There was one occasion when I asked to see my consultant personally when I arrived for my appointment and although you do tend to have to wait longer while he sees his other patients he did fit me in. He never made me feel like I was being a pest (that's the receptionists job) (Sorry, bad joke) If you really want to see him there are ways around it but to be honest I've learnt to trust his team over the years as they do talk to each other.

When you have ADR you get to see most of the team throughout your hospital stay so when you go for follow ups you feel more comfortable as they know your history and were probably present at the op.

Whatever decision you make I wish you luck. It is daunting but as others have already said the decision is the hardest part and yours is made harder because of your brothers unfortunate experience.

Take care and feel free to ask away.
Deana xx

Thanks for all your comments, its really good to speak to other who have or are going to have the same experince.

I am now waiting to see my consultant, i will update you on what happens next.

thanks so much

hi Paul,

Very unfortunate what happened to your brother- but it is major surgery and has a list of risks for a reason- saying that, as an old hand ICU nurse- it is not good to have complications in a private hospital, as the back up is often thin on the ground.

So in the NHS all the necessary specialists are around if something happens and I hear warrington is great under the team you have.

You are young and need your life back- as we all look for on hear- think positive!
very hard I know when you have pain and don't know what to do for the best.

Anyway, best of luck

Kate

Hi Paul.
Like others on this board I have had disc replacement (through the stomach).
It's changed my life no end, no more sciatica, no more back pain and most of all, no more collapsing to the floor in Tesco!
I would definitely recommend the procedure.
I have my life back, it's like being reborn.
My kids can now 'beat up Dad' again and in a few weeks I can start running again.
In my opinion. Go for it!