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Cavernoma Alliance UK
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Cavernoma newly diagnosed

My daughter is 46 and has short term memory due to treatment for brain tumor 23 years ago. Now, after all these years, she has a vascular cavernoma. I requested an mri to be done because my daughter’s gait wasn’t right for past couple years. But within last 3 months she started having more trouble walking. The cane no longer could be used. Started with a walker. Now she cannot walk hardly with her right foot. It turns out a little and cannot hold her weight. If she’s sitting she can lift that leg up, turn her ankle, and move foot up and down. But pretty much slides it if trying to walk with walker!!! I’m very scared. But it sounds like with therapy she may be able to walk again???? Based on few things I’ve read on this site! Is this commonly the case.? We are to follow up with another mri in two months. I’m just sick. It’s been a tough life for my girl. And encouragement is 🙏 Thank you

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oldestnewest

So sorry to hear about your daughter. Have you joined the carvanoma alliance website....I have a carvanoma on my brain stem and it did effect my walking particularly my right leg. It has got a little better over time x

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How did it get better? Did you have surgery to remove the carvenoma? Or a spinal tap? The drs are saying there could be fluid around the brain that a spinal tap could would help with. And if that didn’t help down the road, surgery 😱

Her walking right now has gotten very bad. Can hardly walk! Very afraid of what’s going to happen next !

Thanks for responding!

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I have had no treatment at all...just seemed to improve on its own. Its unlikely I could have surgery anyway as the carvanoma is in mg brain stem. Will be starting physio soon as I still lean to the right when walking. It did take about six months to see improvements with my walking. When there has been a bleed from the carvanoma, the blood eventually is reabsorbed which is why there can be an improvement in symptoms

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