Question for you all. I had a bleed 2 years ago, the pain during the bleed was in my right side below my ribs. Since then when I am tired or done too much I get pain in exactly the same place (obviously not as intense as the bleed), but still not nice, feels like nerve pain, comes in waves. Anyone else experiencing this ? If so do you know what causes it and what do you do to relieve it? Many thanks x
I also have this exact pain. My neurologist told me it is my crazy nervous system. That my nerves are damage and circuits are confused. It is always in the same place on me. Mine is just undee my ribs, but on my left. My weaknesses is also on the left. I haven’t figured out how to make it better. I find myself rubbing it. Not much help.
I haven’t asked the doc about it but I also have pain below my ribs on the left side that I also rub to try and make feel better but it does nothing.
Mine is under my ribs too, mostly right side (where my bleed occurred). But sometimes left side. My weak side is my left side. Rest seems to be the only way to sort it
My AVM at T6 was removed surgically seven years ago. At the time and ever since I have had exactly zero pain at the site. I'm surprised every time someone mentions that I have a scar on my back since I've never felt pain there and never think of it until I'm reminded. However -- and this is a big however -- I'm in constant pain from the waist down due to neurological damage and spasticity caused by the AVM. As BikerMom said, my "circuits are confused." Currently I'm taking duloxetine (generic cymbalta) for the pain but it doesn't seem to help much, if at all. Good luck and godspeed.
I have a spinal AVM and I also experience nerve pain. I take Gabba Pentin to control the nerve pain and it really works.
Hi Stephanie. I too have nerve pain caused by my AVM rupture. It's always there and ranges on a scale of 'just barely bearable' to 'I'd jump off the roof if it was high enough'.
My neurologist classifies my nerve pain as Complex Regional Pain Syndrome II, which used to be called RSD. There are other classifications, such as Brown-Sequard Syndrome and others I can't think of at the moment. Your neurologist or neurosurgeons can help determine what type yours is.
Many people with nerve pain like we have experience at least some relief from drugs like Lyrica, Neurontin, Carbamazepine, Klonopin, Keppra, Gabatril, Topamax and other anti-seizure drugs. If the relief is enough to outweigh any possible side effects you might get from them they could be worth talking to your doctors about.
I've tried just about all of them and none of them helped me. I haven't been able to tolerate the side effects from them, but then, that's just my system. With most of those the patient is usually started out at a low dosage and the dosage is increased if the patient is tolerating them well.
I've had this pain for 12 years now and not only does it just hurt, all the time, but anything like hugs from people, clothing, bedding, socks, shoes, waistbands, sitting on and leaning back on chairs, etc., only exacerbates it. Some days it isn't as bad as other days, but usually the level changes several times a day, depending on what I'm doing. Stress and over exertion make it worse, resting seems to help.
You might also try using one of the over the counter capsaicin cremes and see if that helps.
I don't know that I've really given you a very helpful reply, but maybe at least the meds are something to check into, and I truly hope you find some relief.
Bestest,
Tori
Yes I have much the same nerve pain just below my ribs but on my left side, into my waist on the left side, down my left leg and into my foot. I have Brown Sequard Syndrome per spinal doctor. I am taking several meds for the nerve pain. If interested in additional you can email and I will follow up.
Hi. Oh yes, the pain - just like Tori T described.
I tried all the drugs in all sorts of combinations and was being assessed for spinal stimulators to be inserted at C4. Tried acupuncture - proper Chinese trained Dr. He was sceptical as I was 2 years post op when I walked through his door. Nothing happened for a couple of days and then a strange sensation in the arm followed by progressively more and more improvement. After 6 months, off all drugs, no need to proceed with stimulator surgery, 3 years on, still the same.
12 months ago I went back for help with neck pain (C3-C6 laminectomies), again it helped, I sleep better so now I go for a monthly top ups as it makes me feel good and just keeps a lid on everything.
I've even starting knitting and crocheting again, before the acupuncture I'd have happily ripped my own arm off.
Main problem is the cats, one tail flick with their long hair does set it off if I don't see it coming first but it doesn't last. It has been a godsend - costly but absolutely worth it :)