Anyone??

[Mitzy-33]

Hi wondered if anyone was available to chat who had a similar experience. I feel so alone and as though no one understands what I am going through, they pretend to listen and be concerned but then ask me questions like so what or the doctors giving you to treat the cavernoma is your eyesight still blurred? When I clearly sat and told them there’s nothing they can do and all about my eyesight that it’s not blurred at all. I’m so frustrated feel like I have come to a dead end I have no family support around me only my 2 children that keep me going and my partner who works away though 😞 I feel isolated.

[AntonellaS]

Hi, I am here if you like to chat

[Britkaz]

I too have a cavernoma oncerebellar vermis Affected my eyes and balance when I had a bleed. That was two and a half years ago. You're right- noone knows or understands what a cavernoma is unless they have one!! All I can say is dont let it run your life! I've more or less been told there is no way of knowing if it will re bleed. Little if anything I can do to prevent it so I love as usual! Dont feel alone- reach out here if necessary.

[Mitzy-33 in reply to Britkaz]

I’m sorry to hear about your cavernoma and I too lived everyday as it came I've had so many bleeds throughout the years but always dusted my self down and got on with it until recent years I’ve felt so drained it’s took soo much from me did your eyes get better? Mine have To a degree in the past but this time it seems different I feel different so tired and drained and weak.

[Britkaz in reply to Mitzy-33]

My eyes more or less recovered quite quickly - being on the vermis bleed affected both eyes (couldnt move them ,stayed looking to right for a good part of the day! That aspect recovered but I still struggle with horizontal double vision at times and have difficulty focusing particularly in the evening!! I have had one or two minor bleeds that resolved really quickly but nothing major

[Mitzy-33 in reply to Britkaz]

There not sure if I’ve had a micro bleed it doesn’t seem to have changed but there is definitely something that’s happened I too have to look to the right and cannot focus I am double visioned horizontally plus both eyes have a rotational nystagmus worse in the right eye it’s been 16 weeks now and no improvement they’ve put me on gabapentin but it doesn’t seem to be fixing the problem 😞

[Britkaz in reply to Mitzy-33]

This seems virtually identical to my issues. I'm not on meds - to be honest u didnt report all of my micro bleeds- seemed pointless as they cant do anything about them!

[Mitzy-33 in reply to Britkaz]

Bless you hope ur managing well now And wish you good health for the future.. their not even sure if it’s a micro bleed I have had or that it’s shifted slightly and pressing nerves but can not be picked up on mri but whatever as happened We know it’s due to the cavernoma. If my eyes where to get better I’d be able to get on with my life again as normal as possible it’s soo frustrating. I have other neurological symptoms as I’m sure lots who have had a bleed with a cavernoma have been left with but I’d be able to still function reasonably well. I hope my life doesn’t stay like this forever I feel like I’m just existing at the moment I’m not living my life at all 😞

[Britkaz in reply to Mitzy-33]

I'm managing we- have found coping mechanisms that help me. Closing my eyes, deep breaths for afew seconds helps my focus physically and mentally!!. Best of luck to you and your progress- keep centered and try not to focus )no pun intended) on this condition. It helps mentally!!

[AntonellaS]

Don’t give up ...enjoy the simple little thing every day...life is changed ...this what Cavernoma does...but you can rearrange your life with much more kindness and attention for your self...you are not alone we are invisible warriors we understand each other because everyone of us is getting through every day. I have a pons cavernoma just in the middle of the bridge due the position is not possible any surgeon or gamma knife..I still can completely accept this cruel reality but I am still live every day.👍😍

[Mitzy-33 in reply to AntonellaS]

Your words or so kind but I just feel defeated it’s took so much from my no one understands why I am the way I am now I've had so many bleeds so many different symptoms some lasting I felt drained I have not a good network around me no friends left family that do not care I hardly see

😩 life is so lonely