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.
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Wendy39
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Am SO GLAD of your news...and this is good news...congratulations at finding & liking this consultant...he sounds a really good guy & a true expert....plus a good communicator...am sure you're exhausted and still "processing" the consultation...but GOSH I hope you're giving yourself a pat on the back
It's great your husband went with you
Many thanks too for every detail in your post: all fascinating!
Am especially interested in his comments re your spine. For what it's worth, my lumbar & sacroiliac SLE synovitis causes similar pain...which myco & pred damp down alongside gentle stretching exercise. But my Pain Consultant did also give me 2 sessions of bilateral facet joint denervations to the lumbar & sacral spine which went some way to numbing aspects of this chronic pain.
I like the way you're thinking...your plan for the way forward is spot on
I hope you can rest up & recover now
If you're like me, you'all maybe feel a bit on edge while waiting for his report 😏
Thank you! Yes, always good to get the letter in your hand, to make sure it's the same as was said in the consultation. I found him by luck really, looked at the private hospitals in Cardiff and at the neurosurgeons listed, then read their details. His said he did neuro and orthopaedic and has special interest in syrinx cysts, chiari malformations etc. So thought he fitted the bill and luckily when I told BUPA I wanted to see him or no one, he was on their approved. It was actually a centre of excellence. He was very kind, attentive and understanding. He did give me a very thorough examination though and my back went straight into spasm. He could feel it and I certainly could! I've hurt ever since! Hopefully that will lessen. I didn't even realise that I was sensitive there! I didn't mention my hip bursitis, for which I had the steroid injection - which I was angry with myself about afterwards. Same sort of area. All related? So tired at the moment, and with Christmas coming I am half tempted to take those steroids to make it through! Thanks for your support, as usual! You are so kind. Xx
So vvvvvv interesting: your description's details re how you went about finding this consultant are "text book" - these can help a lot of others who just read your post but don't actively take part in this discussion
In my case, I do have enlarged bursae reactivity inc flaring bursitis. Typical with SLE &a SS this is in synovial joints (my metatarsal forefeet joints are the worst, but I think my sacrum joints are too - you probably know the only synovial joints in the spine are the sacrum's 2 joints & the vvvv top cervical joint where spine abuts the skull)
PMRpro is right in her reply, below: Intra Muscular Stimulation deep dry needling by certified uk practitioners has been extremely effective in my case. My Pain Consultant referred me to physiotherapy for a series of treatments during rehab after each of my denervations operations. And I'd go for more IMS if my joints ever do play up again so badly my lupus meds, Alexander Technique, + gentle exercises aren't enough.
And this uk website lists IMS practitioners (sometimes IMS is listed as Dry Needling, or GunnIMS...I'd contact the practitioner direct to check he/she is certified & trained in IMS):
To add to BC's post - I have sacroiliac joint pain which is due to myofascial pain syndrome and it also causes back muscle spasm. Here in Italy I have had sessions with the local pain clinic and also with my GP who is rheumatology trained. They have used a technique called needling here - and which BC tells me is also called intramuscular stimulation in the UK. If you can access a therapist who does it I would suggest you try it at least a couple of times. I had a return of my back symptoms a few months ago and my GP was finally persuaded to do one lot of needling a few weeks ago. The difference is palpable - I shall be chatting her up for another!
Just curious, but doesn't PMR cause back pain too. How do they differentiate? I'm having a lot of pain in the sacroiliac area and sciatica (numb feeling more than pain, and I don't understand it, exactly, even though I went to a big time back clinic.
PMR pain that doesn't improve with pred must be considered to be from some other cause. PMR does cause pain but it is also much more stiffness. Pain is often synovitis, tendonitis and bursitis, all found in PMR.
MPS is diagnosed clinically - it didn't take the pain specialist I saw long to find the hardened trigger spots! A few judicial pokes in particular spots elicited a heartfelt "ouch"! But she could also feel the tight, hard muscle groups. A good sports massage therapist or physio are probably more use than a big-time back clinic - an orthopaedic specialist had missed mine, telling me it was wear and tear and I'd have to live with it. Muscle problems don't shown on x-rays and MRI - but he didn't really have much excuse, he was treating me for whiplash which is muscular!
Sciatic problems can also be caused by spasmed muscles - but back clinics look for discs and bone-type problems. It isn't unusual for them to overlook something like PMS - not least I suspect because it is a relatively recent concept for mainstream medicine. But it is becoming more accepted - I found out about it as MPS from a German researcher who has been working on the trigger points and what causes them. They are local concentrations of the same cytokines that are the cause of PMR when they are systemic. Oral pred doesn't work as well - but target that pred into the trigger spots and it does. Think of using a scrubbing pad to get rid of the really hard oven marks when wiping with a damp cloth didn't work! But there are alternative options, some are regarded as complementary therapies by mainstream medicine, but they do work to get the muscles to relax. Which is what you want. The hard spots can also be eliminated by manual techniques, persuading the hard muscle fibres to give up their inflammatory substances into the system so they body can get rid of them. If you have PMR it can often feel like a flare for a few days but it will go eventually.
Thanks for your explanation. I'm having a MRI of my thoracic spine on Tuesday. Some of my back pain responds to plaquenil, gets worse when I have flares, including joint pain in my toes and fingers, and does respond to prednisone, but needs a higher dose of prednisone. But I wonder if you have pain from inflammation, wouldn't it naturally cause muscles to seize up? Of course, maybe these trigger point injections would help that. I had a physatrist who said I had too many trigger points to inject, so it would be impossible!
Then you start with some - with the technique called needling (quaddeln here in German-speaking Europe) they do repeated needle insertions over large areas of the back, each tends to be at a spot that elicits a reaction. I've had as many as 7 or 8 in a session, can't say I've counted while gritting my teeth and laughing though so it could be more!
Lovely to read your good news about your brain MRI and spine cyst. That neurosurgeon sounded great, explaining and putting your mind at rest. Very important.!. You can have a steroid injection for inflamed sacroiliac joints, possibly a Rheumy referral or a Pain Clinic might do them. Not sure but worth thinking about if they don't settle now. What a difference a good , pleasant consultant makes!. X
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