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Got a second opinion tomorrow with a spinal surgeon. Please help me calm down.

(24 Posts)
LilRedWG Thu 01-Aug-13 20:03:42

I'm so scared that I'll be told that last year's woolly diagnosis of, "nerve problems" and advice to learn to live with it will be reiterated and I'll be sent away to live with this hideous back pain for the rest of my life. I honestly don't know how I'll cope if that's the case.

KandyBarr Thu 01-Aug-13 20:16:43

What sort of back pain, OP - a herniated disc? I had a discectomy 18 months ago so I understand the unbelievable pain.

Matildathecat Thu 01-Aug-13 20:19:51

Lill, am in a similar situation. Am holding your hand. Can you elaborate?

Big hug and sympathy. Maybe you'll be given hope. Please keep posting.

LilRedWG Thu 01-Aug-13 20:22:54

MRIs have shown a slightly bulging disc, but apparently not enough to cause this level of pain. hmm That was over a year ago, when I was told it was nerve issues and that I am not going to get over it.

I am now in constant pain, pins and needles down my left thigh constantly, sudden shooting electric shock pain that takes my legs from under me (had this for a couple of years but getting worse). I can't stand for long or walk far and when walking have to stop and roll my back forwards so it looks like I'm sticking my bum out. I can't take DS (2) to the park as I can't run after him. DD (7) has to help me put my socks on if DH isn't around - it all just sucks.

I don't know how to make the doctor realise how bad it is. sad

LilRedWG Thu 01-Aug-13 20:23:26

Thank you both for responding btw, I really appreciate it.

Matildathecat Thu 01-Aug-13 20:34:44

My second opinion consultant looked at the MRI I had done post micro discectomy ( still in bad pain, new leg pain and weakness ) and immediately said I had very significant pressure on the nerve root caused by scarring from the surgery. First surgeon told me, and wrote to my employers that the was no pressure at al!!!

He ordered a further MRI with dye contrast to confirm this. I was completely gobsmacked. I am/ was a midwife yet I never doubted surgeon no 1, I just thought I must be somehow imagining it.

So, do take any scan discs you have. Also MRI quality varies massively so hopefully you will be offered another, better one. Is he a neurosurgeon?

I have given in and use a stick now which helps with the wobbling.

Also, hopefully you can get advice on your meds and a pain clinic referral.

I am sadly a pro on this subject. Really hope your appt is positive.where are you based?

Write down all your concerns and symptoms, I mean all. Also take someone with you so you can be sure you are being understood and remember the answers to your questions.

There is never no hope.xx

LilRedWG Thu 01-Aug-13 20:46:40

Matilda - I'm so sorry that you are going through this. sad

I use crutches as and when needed, taking the weight off my back helps. I've also just bought a wheelchair for use on holiday - we're going to EuroDisney and I'm not sitting on a bench waiting all day for the others.

I'm going to the Royal Orthopaedic in Birmingham, which is where I went before but seeing Mr Grainger who, "carried out his basic spinal training in the West Midlands which was consolidated by a combined Orthopaedic/Neurosurgical Fellowship in Liverpool." I do love Google! Hopefully, he won't dismiss me out of hand, which is what I'm most worried about I guess.

LilRedWG Thu 01-Aug-13 20:47:25

I too wonder if I'm imagining it. sad

LilRedWG Thu 01-Aug-13 20:52:38

What do I say, what do I ask him? What if he laughs me out of the door? DH says that we'll just keep going, that we'll find an answer but I'm running out of strength.

Ginformation Thu 01-Aug-13 21:02:41

Op, it is worth knowing that standard MR scans can miss a significant nerve root impingement. When symptoms are out of proportion with the scan findings, then a dynamic scan would give more info. Not available in all hospitals tho. The dynamic scan takes images while you are sitting or standing so show up disc bulges better.

Good luck. I am now 2 years post successful open discectomy for a ruptured disc (with fragments all over the place, including one obliterating nerve L5). Spinal ishoos are seriously not fun. sad

LilRedWG Thu 01-Aug-13 21:03:52

Thanks Gin. Hope you are doing better now.

LilRedWG Thu 01-Aug-13 21:04:22

By better, I mean 100% better. smile

Matildathecat Thu 01-Aug-13 21:28:41

He won't laugh you out of the door. Write that list. Also explain a few ordinary activities and how you are affected.

Needing to use crutches and wheelchair is really serious and warrants further invests. I bet he'll be really kind.

The difference between my two surgeons was like chalk and cheese. It wasn't until I met the second that I realised how crap no 1 was and how he fobbed me off. Proper doctors listen.x

LilRedWG Thu 01-Aug-13 21:48:09

Thank you so much for your kindness.

I've written a bullet point list and also a list of painkillers which haven't worked. Am still slightly nervous that he'll think badly of me asking for a second opinion.

KandyBarr Thu 01-Aug-13 21:58:31

Hi op - at one point I was prescribed a high steroid dose over a week - not ideal but brought the pain down to a manageable level. Good luck tomorrow -let us know what happens

Ginformation Thu 01-Aug-13 22:35:54

He defo will not dismiss you or think you are wasting his time. In my experience (I am a gp) 2nd opinion consultants often take more time to listen because they understand you have had an unsatisfactory encounter with your 1st dr. Just make sure you see the consultant and not one of his team (mention it to the clerk when you arrive).

Take your list in, start from the beginning and detail the ways in which your day to day life is affected.

Ginformation Thu 01-Aug-13 22:39:50

And thank you, I am much better now.

LilRedWG Thu 01-Aug-13 23:39:15

Thank you all so much. Would love to request I see head-honcho and not a minion but it's electronic booking in at ROH - human contact is very frowned upon.

Will report back tomorrow. G'night.

LilRedWG Fri 02-Aug-13 14:40:21

That went better than I thought. smile I saw the consultant and not a registrar.

He was lovely and listened to my concerns and asked lots of questions.

When he looked at my MRI he commented that one disc was gone but to an extent where it would cause no pain as the joint is frozen and that another is slightly bulging, but nothing major. He also said those magic words, "You can't see pain on an MRI! It's like trying to disprove someone has a hangover by taking a CT scan." I really felt as though he was taking me seriously.

He thinks my left sacroiliac joint could be the problem and I'm to have a steroid/LA injection to see if it is. He said if not he'll just try other joints.

But he was also very honest with me and said that he is doing these tests as a workup to see if I need surgery but if he gets to a point where he can't find the source of pain he will tell me he can help no further. I really cannot ask more than that.

He also said that he seriously doubts that he can get rid of the everyday backache and what he is looking into is the sudden sharp crippling pain that brings me to my knees (literally). Again, I can realistically ask no more. I did ask for a total spine and pelvis replacement but he said no - mean man. wink

Anyway, thank you all for last night. I needed to talk and you were there. Thank you.

KandyBarr Fri 02-Aug-13 16:39:45

Glad to hear you were taken seriously - good luck with injections and I really hope he is able to find the source of it all. Being taken seriously is so important.

Matildathecat Sat 03-Aug-13 09:26:24

Great! So pleased you felt listened to. Remember this chap is a surgeon, so he's right to say there could be a point when he isn't able to help, as has happened to me. However that doesn't mean nobody else can help, I am now being referred to the pain management team. That's not great news in that they can't offer a cure but certainly not sent away with no further suggestions.

Really hope the injections help. I've had a few with varying results and have some more on my birthday...happy days!

LilRedWG Sun 04-Aug-13 17:20:58

Thanks both. Matilda - I'm sorry that it's not worked out for you. Enjoy your birthday. wink

I too have been to ROH in B'ham to see Ian Pitman (or his minions at least) and agree totally with the lack of human contact at check in - I'm sure it works well but it's a bit soul less.

I had a fall in January 2012 and have been struggling to get a diagnosis since then. X rays and MRI have not shown any significant damage - even though at one point my physio thought I'd broken a facet joint. Osteopathy only works for a few days then everything slips back, and the only pain relief I got when I had the steroid injection was about 30 minutes whilst the LA was in operation! My follow up appointment was pretty pointless, along the lines of "oh dear, didn't it work - we'd better do another one and try some physio." In the meantime I've been offered Tramadol - no thanks!

Anyhow our local osteopath is offering something called IDD therapy www.iddtherapy.co.uk which I'm going to go and investigate - they do a free assessment and first session - and hope that it will help. Back pain is an absolute sod, I'm nowhere near as badly as affected as you are, but sleeplessness and an ability to do half the things you used to do are so depressing and so many people don't get it at all.

LilRedWG Fri 06-Sep-13 11:24:38

Sorry I've been on holiday, so not on here too much.

sad Frosty - that sucks! I really would suggest going back for a second opinion.

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