I saw a Neurosurgeon privately (via husband's employee health care policy) on Wednesday evening.
I was shattered afterwards and spent most of Thursday in bed when the children were at school but luckily my husband got the time off work to drive me, so it could have been much worse if I'd driven myself.
He really seemed to know what he was talking about, which i guess comes from years of experience in your specialist field and he also said he's seen many patients with SLE thrown in the mix too. He had no referral letter from my GP etc and saw me blind - just MRIs on disc and physical examination.
The appointment was very positive. He gave me a thorough physical examination and then went through the MRIs of my spine and brain with me. (I didn't show him the reports of the MRIs from my local hospital until afterwards, as I wanted to hear his own interpretation first of all).
I have two parts of the spinal column were the nerve canal is prominent and shows up on the MRI. But in the radiologist report, he refers to one as a syrinx from T9-T11. This Neurosurgeon said he didn't think the two of them were prominent enough to be referred to as a syrinx.
He said I could have been born like that or it could have happened later on. We will never know. But in his opinion it is just the way I am. No syrinx, as such. He said they are not big enough to cause any concern about restricting the flow of the spinal cord and therefore nothing to worry about. I also show no worrying signs during my examination.
To be 100% sure I will go back in the New Year sometime, approx 6 months from last MRI and have a further appt, with MRI of my spine and see him Neurosurgeon and their radiologist at the same time, to save me making 2 trips. This is just to make sure that they are not getting any bigger. He suspects they will be the same size and he will discharge me.
So very positive.
Also, the "bilateral white frontal matter high signal - cause migraine?" he did not agree with either. He said the brain MRI looked normal to him. No chiari malformation. Nothing to worry about at all. He also said the radiologist should not be commenting on the cause, their job is to report their findings only. The cause, i.e. possibly migraine is a clinical finding.
So even though, it is not completely over, we both left feeling very positive and relieved and that it was worth the 4 hours of driving.
He said that he did not think that this was related to my lupus at all.
On examination he found me to be very sensitive and tender over the sacroiliac joint on both sides. I could not link this to my 3 pregnancies, as I never suffered back pain or any issues during pregnancy or labour, which apparently is common in woman. So he related the back pain I had experienced to mechanical lower back pain and a form of arthritis to my sacroiliac joints probably linked to my lupus.
I do also suffer OA in my hips and knees - and some in my back but he said that wasn't any worse than to be expected for my age.
So the spasms in my back last winter were caused by the inflammation at my sacroiliac joints, both sides.
He's CC'ing me on the letter to my GP.
So all turned out well.