Hi all. My partner was diagnosed with a pontine cavernoma about 4 weeks ago. She had been suffering for a out 6 weeks prior to that with what the doctors had thought was sinusitis and labrynthitis. All in all she probably hasnt felt right since christmas anyway she went to A&E with worsening symptoms i.e dizziness, loss of hearing, unbalancing and weakness down her right hand side, she spent the night in hospital and was given a CT scan first thing to which the "abnormality" was found. We got told it didnt look like a tumor but it was quite large (about 3cm) and we'd know more once she had an MRI scan which took three days due to it being a weekend. As you can imagine it was a scary few days but we kept positive and knew whatever it was we'd fight it and overcome it. When we finally got the results we were told it was a cavernoma which felt like a slight victory as it wasn't a tumor, this was before we knew the severity of what the symptoms could be. After a week in hospital we saw the neurosurgeon (Mr Stuart Ross) expecting the worst but he told us they would do nothing but wait and see, she was still able to do everything as normal just not quite as good, she needed help walking but only somebody holding her hand really to stop her falling. We were told she could come home and we were over the moon it felt like we worried for nothing and that everything was going to be ok. That first week nothing changed she still needed assistance getting around but she was ok untill she decided it would be easier for her to have a bath instead of a shower which at the time sounded like a good idea, everything was fine at first i helped her wash and she was ok untill she put her head under the water to wet her hair she immediately went weird and started feeling really sick and said she felt like she was going to pass out so i got her in bed and she slept. Since then over the last 3 or so weeks (they all blend into one) her symptoms have slowly got a little worse each day, not enough to notice straight away but when i think about how she was when she first got out of hospital it is noticeable. Iv spoke to the neurosurgeon again and he wants to see her tomorrow and asked if she was on steroids which she isnt so im wondering if they might help? To be honest after all iv read, which is alot, I'm kind of expecting surgery.. does anybody whose had similar experiences know if this is a good idea because at the moment shes in a horrible place and doesnt seem to be getting better?
Thanks for listening please keep caz in your prayers