I went to see my Rheum yesterday for the results of my MRI on my back.
I saw her on 12th April and reported increasing back and hip problems. Also muscle twitches in my left leg and lower right abdo. She made no comment and sent me for the MRI. Following that I was diagnosed by my GP with bursitis in my left hip and given a steroid injection, which worked wonders for me. That was actually about 8 weeks now and I can feel that the effects of the steroid jab are wearing off. Pain and burning are getting worse. Anyway, I then had the worst headache of my life with the increasingly painful myalgias around my head and ears. Diarrhoea for 5 days straight.
My Dermy listened and put me on a 5 week steroid course (20mg for 2 weeks, then 15mg for 1 week, 10mg and 5mg) to see if the symptoms responded positively, so that he could finally justify going down the immune suppressant route. I guess lupus responds to steroids and so rathe than sending me for long and expensive tests to prove lupus or not as is sometimes the case, this would tell us if I responded well. And yes, the steroids have been amazing. No aches and pains. No headaches, No diarrhoea. No fatigue. Given me a new lease of life. Loads of energy and hope.
So I went to see Rheumy, fully prepared with my notes etc. Ready to tell her the Dermy was sorting me out and bite my tongue as I know I might need her in future, even though I think she is useless. She comes out with the MRI has found something that we weren't expecting. You have a syrinx cyst on your spinal cord. It's a fluid filled cyst. I am referring you to a neurosurgeon, but don't expect an appointment fast, they are like gold dust. You might have been born with it or it may have grown later on. It will probably be monitored to see how fast it grows. Now, go away and don't worry basically.
She wouldn't print out the report on the MRI for me. She told me she couldn't print out from her desk. She said, you will have to ask your GP for a copy.
So I came home and goggled. As always, it's quite frightening. A cyst that can grow and put pressure on your spinal cord and obviously cause neurological problems. Sometimes surgery is required to release the pressure, either at the base of the brain or to drain the fluid, depending on what type it is, how long it has been there and how fast it is growing.
I specifically asked her if it could explain my back problems etc and she said no, not likely. But when goggled, the symptoms are listed as increasing back stiffness and relief on sitting down. Headaches. Bowel issues.
Plus, there can be links with lupus, which again she never explained. It can be a sign of Central Nervous System Involvement. Which is treated with high dosage of steroids and/or infusions to reduce the swelling, which is causing the blockage and stopping the spinal fluid draining as normal.
Also, linked to vasculitis, which I have suspected I have for some time. She has mentioned it verbally but never documented it. I really dont think she has a clue about lupus and does not have the courage of her convictions or the balls to sort me out.
So, wondering if anyone else has had a syrinx on their spinal cord. What are your experiences. What treatment did you receive? How long did you wait to see a neurosurgeon?
(SCLE, slight hypermobility, osteoarthritis in hips and knees, varicose veins, various allergies, bunion on my left foot etc etc).
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Wendy39
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I get very cold feet and cannot sleep if they are not warm. But that is it.
I do get a funny sensation in my legs like I've spilt a liquid on them and I actually check as its so convincing, but I know I haven't split anything and there's nothing there. I get the leg muscle twitches too.
As for the other stuff with steroids, my Dermy has no intention of me being on them long term, so no, no other supplements / meds prescribed with the steroids. I guess if it was a long term thing then he would have addressed it. I trust him. He knows his stuff.
Do you have a syrinx cyst? Or knowledge of it - with lupus?
It seems a very complex condition and I'm finding it hard to get info.
I don't know about syrinx cysts on the spine, Wendy, sorry. But I have had severe problems with my spine (especially my cervical spine, but also lumbar & sacral spine) due to a fall on my head from a height in childhood combined with global ligamentous laxity due to EDS hypermobility which set me up for a lot of trouble lifelong. I have a 1 or 2 other spooky spine things in the background too (possible chiari & definite spina bifida occulta). Quite a few of the symptoms you're describing are stuff I've been experiencing & managing for many many years - I mean the systemic lupus/Vasculitis type symptoms inc the neurological. So, am feeling as if I probably have some sense of how concerned & unsettled you're feeling. And, so far, I respond really well to prednisolone too.
I hope someone with experience of syrinx replies. I too would've started researching. Prednisolone suits you, which is wonderful, because it's used to treat all these conditions you're concerned about. So, phew, whether your rheumy has much understanding of this or not, you're on pred & benefitting. This fact + the MRI evidence will give neurology a good head start when you see them.
My experience of neurosurgery is that, regardless of your rheumatologist's take on this, they will see you fast if the MRI report requires prompt action, and also if your symptomatology meets certain criteria, & also if your symptoms exacerbate, so please go to see your GP soon to learn more...sorry: you're probably planning to do this already. Is your GP a decent one? I hope so. Bascially, a decent GP will give you a copy of the MRI report + some idea of how long you're likely to have to wait for neurology. Your GP needs to agree a plan re how you 2 will monitor your symptoms while waiting for this neurology appt: eg what symptoms would mean you need to be seen immediately. My hope is that you & your GP can put your heads together on all this soon
it is hard to stay calm when this sort of thing is hanging over you, especially when your diagnoses (lupus, Vasculitis etc) are still uncertain. But I hope the fact pred is helping does make you feel more confident about holding your own with all your medics: this fact is an indicator that can't be ignored.
I too had to learn to wait for neuro appts while experiencing seriously spooky symptomatology. In my case this went on for years, decades even, while my general condition worsened. But, in the end, I decided to start pushing hard...eventually I even managed to avoid a NHS appt for major surgery to my spinal column. Thanks to my hero pain consultant & hero rheumatologist, most of my spine probs are now pretty well controlled.
Apologies for going on at such length...you'll be realising this subject has hit a nerve with me 😏
Thank you for your kind reply coco. Always helpful and sensitive. From what I have read Chiari is a birth defect that can cause syrinx cysts? Until I know how long mine has been there and what's causing it, I'm in the dark and guessing really. It's seems very rare. I plan to see my GP ASAP this week to discuss it all and get a copy of the MRI report. I feel scared and alone and worried for my family. 😒 Thank you again. I'll let you know how I get on. Wendy x
Chiari, like most all these awful probs, is on a spectrum...and can be aggravated by childhood accidents like falling on your head from a height. As with virtually all my big collection of complex multisystem stuff, inc various supposedly rare conditions, my version (if chiari really exists) is relatively mild....as with my version of spina bifida occulta. But my vascular EDS hypermobility + infant onset vascular type SLE & early onset PID all are complicating factors, tending to make even mild issues more problematic
My feeling is that the same is true of many of us. The important thing is to understand our primaries as well as poss, so that we can understand their implications well enough to give even rare issues, which could be considered relatively mild in a more normal patient, the right amount of extra respect & vigilance
My hope is that your syrinx is relatively mild, and this is why your rheumatologist informed you of it in that strange way. But I'm totally with you in suspecting she simply isn't well informed enough to understand the implications of your co morbidities (even without formal diagnoses, your health issues are considerable and you deserve mega respect & support from all your medics)
I have now seen one of the GPs. Not my first choice. But she is good. She was very patient with me and we talked through where I am with my steroids and treatment plan with my Dermy etc. She talked me through the findings on my MRI. She said that she didn't want me to worry too much. She also thinks it will be monitored to see if and how fast it grows. She did pop into the conversation, "well when you have CNS involvement with lupus...." I guess I had worked that out for myself however my rheumy never says such things. And it is weird hearing it said to you. It is also nice to have a frank discussion with someone as well. She said that the Dermy who I see next Tuesday 20th might feel he needs to delay the immune suppressant until this syrinx cyst issue is well, not resolved, but we know more about it. I said I am dreading being off steroids now - last 5mg tomorrow and there being a big gap in starting the immune suppressant, as I do not want to go back to how I was before. She said he may keep me on a lower dose of steroids until we can move forward. She said I will need calcium supplement to protect my bones if I go on steroids again. Anyway, I have typed up my MRI report. I understand most of it now and I am much calmer, but that is because it is over a week since being told about it now and time does that. I hope I don't have to wait too long for the neurosurgeon appt. The GP told me I could phone the secretary and ask. Which I will try to do tomorrow.
MRI Spine lumbar & sacral
MRI WHOLE SPINE
The lumbar spine was initially imaged.
It was noted that the central nerve canal was prominent in the lower thoracic spine at the T10 level and therefore T1w and T2w sagittal series have been performed through the cervical and thoracic area.
Alignment is maintained at all spinal levels other than straightening of the normal cervical lordosis which is consistent with pain or muscle spasm.
There is a small syrinx in the distal cord which extends from the upper border of T9 down to the mid-part of T11 but which is maximum at T10. Signal in the spinal cord is otherwise normal with no cord expansion and no evidence of a syrinx at any higher level.
The cranio-cervical junction is normal and the lumbar conus is in the normal position at L1 with no evidence of cord tethering.
There is a disc-osteophyte bar at C56, this is indenting the thecal sac bit is not impinging upon the cord and there is ample CSF maintained posterior to the cord at this level.
There are only minimal degenerative changes at the other cervical levels and in the thoracic area.
There are signal changes of disc dehydration in the multiple lower thoracic and lumbar discs except for the L5S1 disc which is of normal signal; there is also mild disc height reduction on the right side of the L34 and possible also the L45 discs.
At L45 there is a right lateral annular fissure and a small right lateral disc protrusion which is extending into the lower part of the right L4 foramen but does not appear to be impinging upon the emerging nerve. The overall canal diameter is maintained at this level and at all other lumbar levels.
There is no significant disc protrusion at any other lumbar level and no definite nerve root impingement at any lumbar level.
Axial images have been performed through the lowest 3 levels and there are moderate facet joint degenerative changes at L45 and on the right side of L5S1, with milder degenerative changes in the L34 joints and the left L5S1 joint.
Vertebral heights are maintained at all spinal levels. Here are a couple of small haemangiomata e.g. in L1 and L4 and probably in T12 which are of no clinical relevance, but there is no evidence of any sinister marrow pathology.
This is, on balance, good news...I feel...and I'm relieved & glad you're feeling calmer in yourself...this calmness is with good reason: you're understanding your condition...knowledge is power...+ you've got really good support & communication with this GP (your description reminds me a bit of how my main GP & I relate), so yes time is helping, amd also you're processing all this in what seems to me a very shrewd & emotionally-aware way. 👍👍👍👍Once I accepted my cns involvement & began to just refer to it casually in passing with my various medics, they seemed to become much more willing to talk to me frankly & respectfully without patronising or clamming up.
I think your attitude towards steroids is VVVVV SENSIBLE & totally reasonable. My medics are happy to leave me to adjust my daily pred do long as it's 7.5 or less per day & I taper vvvvvvv slowly (tell me: do you mean dropping from 5mg daily to 0mg without any taper? If yes, hmmmm: I'd ask if I could come down MUCH more slowly from 5mg...at my lupus clinic you'd spend 4 weeks just coming down by .5mg)
👏👏👏👏Thanks for these MRI report details. Reads not unlike my last spine MRI....of many years ago! Except for the syrinx. The vital thing, I think, is that you have this baseline MRI with this vvvv thorough analysis...to which you'll add what the neurologist says & writes in his report.
Am vvv grateful to you: thanks for sharing your thoughts & feelings + all these details. You're helping me a lot to continue to feel reasonably calm about my stuff & how it's being handled too. We're all in this together 😉
I think I've said it before, but lupus is such a roller coaster ride! Sometimes your breath is taken away from you, even though you know there are twists and turns up ahead.
I have been on the steroids for nearly 5 weeks. He initially said 20mg for 5 weeks but I asked if it should be tapered. He then amended the prescription. So I took 20mg for 2 weeks, 15mg for a week, then 10mg for a week and finally 5mg for a week.
I have my last 5mg tablet for tomorrow.
Then I see the Dermy next Tuesday.
Do you think the fast steroid withdrawal will be a problem?
I'm relatively inexperienced on the subject and have never taken a dose higher than 10mg (except during inpatient emergencies) ...but the tapers I've been on for 3 years now have never reduced down that quickly...and all my close lupus friends tell me that we can be so reactive that many of us tend to do better coming down vvvv slowly.
My feeling is that you're so self aware and have such a good relationship with your GP that you'll be well placed to monitor yourself after you come off pred...and that you'll be quick to contact your doctors if you sense problems surfacing
For what it's worth: I'm on a vvv long slow taper now: 4 weeks on doses alternating every other day by .5mg until I recognise I cannot go lose without chronic symptoms increasing. At the mo am in week 2 of daily alternating 5mg & 4.5mg
There have been vvvv helpful threads on this subject here over the past year...
Hi Wendy I've been reading your posts..gosh it's scary isn't it? I just wanted to add, along with coco, that pred seems to affect us in different ways. I can go up and down by 5 mg quite easily as a response to a flare however last week I had an episode which was a little bit of an Addisonian Crisis..just a little..caused by taking too little one day...so if you feel faint and crave salt...you'll know if this happens..it's the adrenal glands asking you to take a little bit of pred..stat . 1 mg is usually enough if you have come down from 5mg. Keep 1 mg tabs on hand if you can during the tapering period.
Unfortunately I have no other steroids in the house. I only had 5mg tablets and I was given the exact number for my 5 week course. So I am now 2nd day off them. I have a headachebut this might be due to the terrible cough and cold I have got. Always something. X
Hi Wendy..hope headache has abated...def could be related.
When I've run out of pred 1mg..I have been known to take a nibble from a 5mg...not recommending only, if compromised .. But I know you only have the exact amount prescribed.
By now...you've had the last dose, and fingers crossed I really hope you are ok.
The letter turned up in the post today, from my Rheumy. She did look surprised when she saw me last week and said, I have written to you about this. I thought she looked like, why are you here, you don't need an appt. But I had received one in the post. Well the letter says:
"I now have the results of your MRI scan which shows evidence of osteoarthritis at the facet joints which is not at all unusual however there was another finding which may or may not be of significance and I have asked for advice from a neurosurgeon. I have sent a copy of the report to your GP.
Yours Sincerely"
That's it.
I cannot see the GP I want to as he is away on holiday until 14th August! And my second choice, she wont let me book an advance appt and so she has told me that she is in next Monday, Tuesday and Thursday and to phone on those mornings to try to get an appt. She also couldn't run off a copy of the report on the MRI as is wasn't showing on their system.
So more waiting. But at least I have a nice detailed letter from the Rheumy to put my mind at rest.
I telephoned the neurosurgeon's secretary and my referral has been graded routine and there is a 30 week wait. (The rheumy's referral letter didn't say I have lupus - just about the cyst, I wonder if he should have been told). I have also received a letter from Trauma & Orthopaedic Surgery Department saying 26 week wait. I didn't realise I have been referred to them. Either rheumy or GP has done this, I guess, following the MRI on my back. I am pleased about that as I have asked lots of times for this - hip op 2013 done privately - and despite having osteoarthritis in my hips and knees - and it seems back - no one has discussed this with me. So feeling more positive.
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