Between consultant and surgeon

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Hi

Sorry it's been a while,

Recently I have been to see my consultant and my surgeon and

If my head wasn't already mashed it's is now,

To say they are on different pages is an understatement

Consultant lovely man tells me things in human speak not doc lol

Says leave my head as it is headaches will be fine with pills

Ok happy clare no need for op

Go see my surgeon equally as lovely although speaks in more doc

So clare get lost more easy but that's why clare takes people with her

Anyway sorry people I'm rambling if u are still with me

My surgeon has said I need decompression surgery

He's ordered another mri scan with dy thats Thursday

But why would no doc say do nothing and the other say something completely

Different

I don't want surgery but then how does

Also was wondering from people that have had it are u completely asleep

For the op as iv been told some brain ops u are woke up

And I don't won't that

Sorry iv gone on a bit one scared girl here any help or advice would be most grateful

Xx

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12 Replies

  • Posted

    No you are completely asleep, I was passed round for 7yrs till someone who knew about chiari set me on to have a diagnosis of chiari malformation. And not migraine or arthritis which is what I was getting treated for. But at last you are seeing some one who knows about the condition. Everyone recovers different from this operation, some are up and about, unfortunately I had sickness and nausea really bad. But it eased the pressure a lot. It's not a cure but to prevent condition getting worse. It is scary as you say no one wants op. But loads on here will help and talk about there experience and help you through it, your not alone hun, even when you had op. Xxx

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  • Posted

    It seems its the old rivalry between medical and surgical. Neurologist will give you pills - Neurosurgeon will operate. I have some of the symptoms returned. My GP referred me back to my neurologist (who kept me waiting a year initially before sending me to a neurosurgeon) against my wishes, neurologist says migraines etc. He did refer me quite quickly back to my neurosurgeon who recommended  a proceedure,check on CSF.,that was last February. Since then heard nothing from neurologist, own GP didn't want to know (now just changed GP). There seems to be no love lost between ologists and surgeons.

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    • Posted

      Hi Yeltzer, may I know why they refered you back, I thought you had decompression, is it start playing up again (symptomatic)
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    • Posted

      b2wc97455 - I found I was getting some of the symptoms back, and eventually they realised I had not had a follow up MRI after decompression. That was not my consaltants fault (long story) so they got me back for a MRI. Apparently that was OK, very happy with it, however the neurosurgeon, Mr. Flint did report that a survey of his patients did report that 20% still had some, a few, symptoms after decompression. He recommended a lumber puncture to test csf pressure.
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    • Posted

      I think he was right, my surgery was running smoothly , but after the surgery, I have such a terrible 6 weeks, lying down at the hospital bed, it supposed to be 6 days, I had 3 LP whilst I was there,so there you go,my headache, vomitting,imbalance, numbness all that gone, what I have now (unsure if it is CM related) aching in my spine,I have to do youga each morning after wake up otherwise I find it really trouble me, my GP said it was nothing to do with the CM, it might something else, I am not sure is it due to too many LP. But after LP normally you feel really easy less strain, so whendo you have to go back for another op?
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  • Posted

    Hi Clare,

    My symptoms have worsen. I can no longer stand for long periods at a time nor sit. I have to be propped upright all the time or I start going into severe body spasams. My headaches and neck pain is the worse. I'm finally going to have surgery. But I'm terrified. I can't believe this is happening. I'm living a nightmare. I've lost 9 pounds already because it hurts to swallow solids. Are you having these problems?

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    • Posted

      Wow evella,

      I'm not having even half of that Iv only just started on meds for my migraines that's why I don't understand why the surgeon has even suggested surgery he said I have reduced function in my right side and that is strange because I'm right handed not left and I keep loosing my balance

      Hugs to u though seems mild compared to what ur going though xx

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    • Posted

      Hi

      My daughter also can't swallow has a very bad pain at the back of her head and neck with weakness in the hands muscles can't even open a door or hold a pen and difficulties in breathing when she is sleeping have seen several surgeon unable to make a decision or a treatment even though she was diagnosed as chiari 1 malformation.

      Hope you get better just be optimistic and keep smiling

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  • Posted

    Hi Clare, you have got such a good message here, I had worse symptom then you are,  in one stage (a year a go) i ended up house bound, I did not want to get decompression, as the neurologist explained it to me honestly and scared me off..., but I could not put up with my condition, in the end I agreed with their suggestion..decompression was the way to go for me, and thanks GOD I have it done,I am symptom and drug free, I have my life back, it was 5 months ago since I have it done, I am taking advice from my NS, still not back at work, I ll take my time easier, as when I did not listen 3 weeks ago, and done 500 yards walking, the next day, all my back, neck, arms were paining so bad. Now I take it easier its getting better each day, thanks to this website and my magnesium stearate and eating healthier , its seems each week I am getting more and more rejuvenate.

    So, be positive, at least you knew what you have got just make sure to get NS who has done several of this operation. GOOD LUCK

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