Help needed - surgery gone wrong.

[LW]

I don't know where to start with this one. Almost two years ago I was diagnosed with a spinal cord tumour and subsequently underwent surgery. Despite having no after care post op I was discharged and told my surgery had been a 'success'. I could not walk or take care of myself for several months. In March of this year I visited my GP because I was still having major problems, and after several months of referrals, managed to get a MRI in July (the first since surgery). I got the results only yesterday only to discover that the tumour has not been removed. I can't even begin to tell you how I'm feeling and I just really don't know where to go with this. I was given this information in 'snippet' form by a secretary over the phone and have not even received the full report. I don't suppose anybody has any advice? I'm sorry if I've waffled on but my head's all over the place.

[Gary Anderson]

LW

Wearing my doctors head I would suggest that first of all you make an appointment to see your own doctor - not the secretary or receptionist - you then explain to him all that has happened to you and ask him for his advice on who you should contact. He should be able to get in touch with the surgeon who undertook the operation.

You could also yourself make an appointment with the surgeon at the hospital who undertook your surgery and again ask for a full detailed explanation of what went wrong.

If this brings you no satisfaction, then you have a right to contact the British Medical Council and you can lodge a formal complaint against your doctor/surgeon. However, as a doctor, I have to advise that if you go down this course of action you will have to have detailed records of what did and did not take place.

I hope this helps you and if you need any addresses, then please feel free to contact me and I will try and assist you.

I should not say this but I am an SCI patient first and a doctor second! So do not be put off by your GP pooh pooing around. Stay focussed.

[LW]

Thanks Gary! I've been up all night mulling this thing over in my head. I've managed to speak to my GP who has written to my neurosurgeon with a copy of the scan and has asked that I am contacted asap for an appointment. He was equally as shocked as he too had been informed that the tumour had been removed. Fortunately I have kept every piece of documentation over the last two years. I'm in a bit of a quandary because I don't really want the added stress of making a formal complaint, but at the same time I feel that I've been wrongly treated. My neurosurgeon is very 'high up' in the system and I feel a bit intimidated; even though I completed law school before falling ll! I guess I should hear his side of the story before going down that route, as you suggest. I keep hoping there's a legitimate explanation for all this but I can't help being suspicious. Thank you for replying - I shall keep you posted.

Regards,

Leah

[chrisarnold]

Sound advice given. Do not worry about how "high" the surgeon is - this a commoner feeling with young patients. When I was in rehab I found that the consultant was very approachable.

Good luck,

Chris

[LW]

Hi Chris, Gary et al,

Thought I'd let you know I received the full report this morning and it re-confirms that the tumour has not been removed. Further, the surgeon carried out 3 laminectomies and never told me (it wasn't reported in my records either). My GP is in the throes of arranging a meeting between myself and the surgeon but I am now reluctant to go. Having received this additional bombshell today I feel angry and actually don't feel comfortable being in the same room as the man. I am wondering if it is possible to go directly to the BMA or whether to write to the surgeon. Will do a bit of research. Keep you posted.

[chrisarnold]

Your doctor's report is worrying. The most significant worry is the surgeon. All doctors are on the horns of a dilemma; is the news on a "need to know" basis, or is candor the correct way forward. In the case of a patient no longer, legally, a child, I believe everything is "need to know".

After my own major operation, that left me disabled, my wife was apprised the information - it was weeks before I could have held a conversation with the surgeon anyway. I was told clearly what had been done, in my case an aortic graft with tissue from my own body. This helped to explain my subsequent surgery.

The laminectomies. if if not elective, should have been reported to you, and for these not have been in the report is outrageous. It is unreasonable to expect doctors to be miracle workers, but when they haven't pulled a miracle off, they should be honest about it.

[LW]

Hi,

I have an appointment next week with my neurosurgeon to discuss what happened. I won't go into too much detail but it's been a real fight to get this far and I've had to make a lot of enquiries. I am extremely nervous about this meeting as I don't know what it will lead on to. I am also worried that I will get there and make a pig's ear of it when I come face to face with him. What a mess. But at least I'm one step closer to getting some answers.

[Andy]

hi leah,

sorry to read of all you have been through, as the others have said its really bad that you weren't informed of what occurred during surgery and the outcome as it was.  Re your appoinment it would be wise to write down a list of everything you want answered and record the replies you are given, also I hope you aren't going alone and have a friend / family member with you there for support which will help. 

I wish you all the best for the meeting

Andy

[LW]

Thanks Andy. I'm going to sit down tonight and make a list of the questions I have about my symptoms, the surgery and the long-term prognosis of my condition. I'm also going to take my MRI report and previous medical documents which state the tumour was removed. Trying really hard to keep a clear head and stay focussed! My main fear is that he'll suggest opening up my spinal cord again to attempt another excision. It's not malignant but I assume it will just keep on growing and causing further compression?

Thank you guys so much for all your support, it really helps spur me on!

Leah

[Jilly]

Hi Leah,

Wow that really sucks!

You are most welcome to our support. Thats what we are here for. Especially when theres an injustice done like whats happened to you!

Jilly

[LW]

Hi Jilly & Guys,

Just got back from meeting. I was in there with him for over an hour. He was extremely nice and listened very carefully to what I had to say. He said the secretary grossly over-exaggerated on the phone in saying that my tumour is 'still there'. Apparently he had to leave a miniscule proportion behind because it would have meant cutting into my aorta. He says it is nowhere near the spinal cord and if it grows 5 times its current size it will still be nowhere near and will not require further surgery. The remainder is not even in the spine, but still causing part compression of the left lung. He said my shoulder numbness is quite feasible given where my incision is and the only thing he can't understand is the pins and needles/tingling in my hands. He has put me down for some kind of electric shock therapy (I drifted off a bit at this point) which will start soon, as well as further investigations to rule out other neurological diseases. My tumour was the largest he has ever seen, even larger than he thought when looking at the MRI scan, and therefore the triple laminectomy was required. He did not explain to me why this wasn't reflected in my notes. He is due to see me again after my shock treatment and has put me down for MRI scans every 9 months. He says my recovery is nowhere near complete and I need regular monitoring. He is still hopeful that I may make a good recovery. Don't know whether he was just saying that!! What do you think? Is he exonerated? I have been 'waiting' for two years already and I'm not sure if I'm convinced...However I do feel a lot better and relieved in myself. Must grab something to eat now as knackered!!