Hi wondering if anyone has had anything similar

[Bellbells]

I had a brain bleed 2018 from the AVM I have had stereotactic radio surgery in 2019.since 2020 I’ve been having strange symptoms where my legs were aching constantly burning sensations.for a couple of weeks now I’ve had the what feels like numbness in my legs and feet and a feeling of coldness running through my arms legs and feet it’s very hard to explain but that’s the only way I can describe it.

[cat3]

Any unusual symptoms need to be investigated by the neuro team where you were treated Bellbells. I suggest you phone and ask to speak with the specialist nurse ; alternatively ask your GP to refer you back there.

Best to check with the professionals as similar experiences can be misleading in getting the right treatment. Hope all will be well m'love... Cat x

[Bellbells in reply to cat3]

Hi cat I’ve been in touch with the nurse and I’ve now got an appointment with the neurosurgeon thanks for the advice.

[cat3 in reply to Bellbells]

Good girl. Hope all goes well ; please keep us updated... x

[APAscot]

I too have an AVM which was discovered in the mid 80s. It caused me to have mild epilepsy and severe headaches/migraines for years. In 2009 I had my first seizure so extra anti epilepsy medication was added. In 2016 it decided to really kick off with me having multiple seizures resulting in status epilepticus. There was spontaneous thrombosis of the AVM. It was also discovered at that time that I have multiple blood clotting conditions so am now on warfarin permanently. Getting back to my response, I have been getting the same numbness and tightness in both feet and I googled it and it looked like peripheral neuropathy. When I saw my neuro in December he checked my reflexes and thinks it’s sensory neuropathy and I’m having a nerve conduction study next week. Who knows, it may be nothing - I’m not one to fear the worst anyway but you should definitely check it out with your neurologist or whoever you now see, It’s best to set your mind at rest.

[Bellbells in reply to APAscot]

Hi thanks for that information I will mention it to the neurosurgeon when I speak with him I have an appointment next month.

[Wez0161]

Hi I had a bleed and a avm resection in 2016 I also have been having aching legs and a burning feeling in my legs and too have been worried aboat this it’s like there acid running through my legs

[Bellbells in reply to Wez0161]

Hi thanks for the reply.I think like APAscot said it’s maybe something to do with the nerves.