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Cavernoma Alliance UK
352 members103 posts

Spinal Cord Cavernoma

Hi , im adette , and i was diagnosed with T10-T11 spinal cord cavernoma😪 Since 2008.

My neurosurgeon said i have nowhere to go but surgery. She cannot give ne a guarantee if i can walk again after the surgery , so i decided not to. I can walk right now, the tpain im enduring is unbearable. 24/7. They just ary on severity. I was prescribed with Amitriptyline and Lyrica, but tge side effect us even more unacceptable. I experienced rage , depression and increased body weight. So i stopped drinking them. I sorted in drinking my homemade concoction which mostly comprise ginger root to help me with pain and inflammation. Somehow it has effect but i barely made my daily battle with pain.

The numbness and pain started in my right foot snd us niw on my waist. Whats killing me is the burning painful sensation on my left and right portion of my hypogastrium. I sometimes scream from pain. Like i am being stab. Air and touch of fabric in that area gives ne pain. I sometimes cry in silence because i dont want my chikdren to see my suffering.

Is there anyone outhere who could help me fight the pain ? Please help me

1 Reply

Dear Adettee - how are you getting on? I hope the pain has subsided somewhat. If you are looking for extra support/fellow Cavernoma sufferers please Do join us at Cavernoma Alliance UK - the membership is free and easy to set up and provides access to a secret online support group that has a great supportive friendly warm community of those living with, or family/friends carers if individuals living with Cavernoma.

If you’d like to join the community you can do so here;


We hope this finds your improved from your last post. Sending love and strenght x


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