lupus and hemangioma on spine

[SWinNorfolk]

Has anyone else here with lupus been diagnosed with other a hemangioma on their spine? I’ve been trying to manage back pain for as long as I can remember(including exercise and physio) and finally convinced the dr to send me for an MRI, they discovered the hemangioma where the majority of the pain is.

They keep reassuring me it’s common, benign and fine, but I’m not happy if that’s causing me pain and triggering more lupus flare ups. Also, I think some of what I’ve thought are lupus symptoms could be linked to this rather than lupus.

Appreciate anyone sharing any info, I’m speaking to my dr again today after having my orthopaedic referral rejected

[Lulamay7]

hi, I was told exactly the same thing, my back pain is so severe now that I can only stand still for a minute or two before it's unbearable. If I am walking it's just sore. I had an mri and was told i had 3 haemangiomas, benign therefore they're fine. Was given no explanation why. I am currently waiting for a referral to a pain management clinic. If you get any further with this can you let me know please.

[SWinNorfolk in reply to Lulamay7]

thanks for sharing this with me. I have a feeling it might be a case if just managing the pain. I’ll let you know, my Dr is chasing to find out why the rejected, so will see what happens next. Hope you get your referral through soon x

[cakerbaker]

I have had the same. I have 3 haemangiomas that they have found in my upper thoracic area of my back and also my neck. Apart from the well it could be causing your migraine and back pain I was advised they aren't anything to worry about so not to. They won't do anything........ I know its not helpful is it? I hope you find someone who can suggest something for the relief of your pain.

[SWinNorfolk in reply to cakerbaker]

thanks for sharing this with me. I have a feeling it might be a case if just managing the pain. I’ll let you know what happens, as my Dr is chasing to find out why they rejected the referral, so will see what happens next. The nerve pain is awful, last night it was like being stabbed in the face, thank goodness for sumatriptans and pizotofen!

[StriatedCaracara]

Eye hospital think I have a haemangioma at the back of one eye. Pattern of fluorescence with green and yellow dyes atypical for a haemangioma though. Read an interesting article where they found atypical haemangioma of eye in patients who had had covid. Blood flow affected and vessel changes in choroid spotted. Said this might also happen in other parts of body. Just adding in case folk have had covid, and haemangioma finding is recent.