Hi all, just looking to see if anyone has been in a similar situation as me with lower back pain after a stroke due to an AVM.
Bit of background. I had a stoke on May 13th 2022 whilst I was 20 weeks pregnant at the age of 28. Whilst in hospital they discovered I had an AVM in my brain and I underwent 2 drain insertions into the ventricles in my head to drain the bleed, a few days later I then had an angio which they then glued 2 aneurysms I had in my AVM. I make a quick recovery although I didnt really understand what had happened to me at first and left hospital on the 1st of June.
They have since discovered I also had a stoke 5 years previous to this where I attended A&E with a severe headache and sickness but was misdiagnosed as cluster migraines and sent home.
I have been told that my AVM is very rare and complex and the only way to manage it is through observation (yearly MRI’s and angios) and that I have a 5% chance of having another bleed every year.
The only side effects I have from having my stroke that I’m aware of is occasional headaches and right side weakness but I am still capable of walking and doing everyday tasks. I am also less sensitive to touch and heat on my right side and more so in my leg than my arm.
Since having my stroke I have had severe lower back pain especially at night when im in bed which has massively effected my ability to sleep. However due to the fact that I was also pregnant at the time I didn’t know whether to put it down to that or the stroke or even the possibility of it being something like sciatica. I spoke to my maternity Dr, midwife and gp about it throughout the remainder of my pregnancy but none of them were sure either.
My daughter is now 9 months old and unfortunately my pain and inability to get a good nights sleep because of it has continued. I recently had my review with my consultant at the hospital who thinks I could be compensating due to my weak side and has referred me to physio. Has anyone else experienced anything similar? The pain can be a sharp or dull throbbing feeling on my lower right side of my back and does occasionally but very rarely move to my left side. It can sometimes lead to me getting cramp down my leg and more so in my right foot. Paracetamol unfortunately does nothing for the pain. I have also tried a tens machine which does help slightly when on but obviously isn’t a long term fix and have also been to see a chiropractor who did help me manage the pain short term but said himself that he didn’t think he would be able to help me longterm.
Would love to hear from anyone who has experienced something similar.
Hi @Emma_GH
Welcome to our cosy group and congrats on your daughter and commiserations on your back pain.
I think all your suspicions are well founded speculations.
It’s impossible to link cause and effect without experimentation. If your stroke changed your gaite and/or the strength of your arms, so your usage pattern (but that wouldn’t be a big surprise if you’ve just had a daughter and carrying and nappy changing - which if you are like I was means leaning over a bed normally which is all strain on the lower back) it’s very likely there have been compensations in your posture and that might result in spinal health changes.
If you’re taking statins that can result in muscle aches for example in your thighs, I get feelings of sciatica and something I call sciatica but runs down the front of my leg and into my knee joint at the side I don’t know whether it is statin or postural or or postural as a result of statin induced muscle pain. These symptoms are not continuous but they are a continual factor and thankfully in my case they’re not as bad as your describing. I think what I get is unrelated to my stroke but maybe related partly to my medicines.
Of course nothing is ever certain where strokes concerned but I think if it was stroke related it would be on one side. Would be worse when you were fatigued perhaps?. I think it would have that certain 'je ne sais quoi’ of stroke things
I was going to suggest a chiropractor. Pre-stroke My first chiropractor said you’ll have to see me forever more and didn’t cure my pain and that was why I don’t see him any more! my second chiropractor said it was caused by posture and he fixed me more or less although every day I have a low level grumble of some sort particularly if I’ve been in the garden the previous day so that’s lifestyle combined with a susceptibility
I offer these rambles only in the hope that it sets some of yours in context because clearly I haven’t given you a solution here. There are a great many people with back pain who haven’t had strokes many of whom have given birth so that’s definitely a factor. One concluding thought I find things like diclofenac ammonia or sodium (volterol gel or by mouth) it does help me but it is NSAI and they do have warnings for people who have had a stroke
@Emma_GH you’ve certainly been through a lot. You must have been very worried during your pregnancy.
Back pain could be caused by anything and may be a combination of things. I know i get pain sometimes as a result of my poor gait & walking style. If you add that in to being pregnant, carrying a youngster around it’s probably not surprising you’re suffering. I would ask to be referred to a back specialist so they can try & get it sorted for you.
Did your maternity team, or GP even, not consider your pelvis expanding in preparation for birth.
Hormones in pregnancy, particularly relaxin (which relaxes ligaments in the pelvis to allow for softening and widening, in preparation for labour and birth). Pelvic Discomfort in Pregnancy - Dr Morris).
It took 9 months for your pelvis to soften and relax for the delivery of your baby. It’ll take another 9mths to a year and sometimes longer (depending on the severity) for it to go back to somewhere near normal.
When I went on maternity leave from work 22yrs ago, my boss back then used to be a radiographer and he strongly advised of the need to look after my back and being of lifting, twisting, carry your baby around etc because of my relaxed pelvis after birth, for at least year as that’s the most common cause of back issue in women. Lots of pelvic floor and abdominal exercising to strengthen the area.
I already had a similar lower back issue from sport injuries so I heeded that advice. But I developed osteoarthritis in the left hip which further exacerbated the problem and pain level as similar to yours. My Osteopath was my go to man for that and he helped keep me virtually pain free for about 15yrs 'til I had the hip replaced and I don’t have that back issue anymore.
Your stroke will have exacerbated it further with your weakened right side throwing your spine off centre and likely aggravating the sciatic nerve which runs down your spine flares out over either hip and down the legs. All this throws off your posture and gait and it all becomes a viscous cycle resulting in nothing but pain. And this is because the muscles have tensed up on one side as you will naturally lean away from the pain and also taking on the extra load of compensating for the weakened side.
I’ve never been to chiropractor, I’ve always gone to osteopaths, I certainly favour them over physio therapists. But for what you are currently experiencing, you may need at least 6 sessions with an osteopath. And it can take a couple of days after each session before you feel the true benefit of that session. But this issue can be resolved. I doubt this has anything to do with the stroke other than it acerbating the issue. They have always kept the pain at bay for me
Edit:
An before bedtime I would take 3 paracetamol, this would at least keep the pain at bay long enough to get off to sleep.
Maybe now is the time for your GP to refer you to Urogynaecology if this is pelvic issue. This could also be a slipped disc, something else the gp could look into and advice on.
