Living with Cavernomas

[Mitzy-33]

Hi I have multiple Cavernomas the one in my brain stem has had quite a few bleeds over the years it started when I was 14 I am now 33 the bleeds have left me with lasting damage. Double vision to the left, right side weakness, tremor ect. over time my symptoms do improve every time I have a bleed I become very ill sometimes worse then others but symptoms still remain. Recently my double vision as got worse leaving me unable to see and mild loss of sensation on right side . I was told I am lucky to have got to 33 with only mild lasting damage and basically sent on my way to live with it I hope my eyes get better Like they have in the past if not then I feel lucky that I can still walk talk and eat. The annoying thing is to everyone else I look normal and no one seems to understand that everyday is a struggle, the Warmer weather seems to help this time of year is 2x the struggle I just hope someone can relate to the nightmare I’m living and hopefully found some kind of medicine that helps I’ve been looking C B D oil up as anyone tried this?

[PippaMayb]

Hi Mitzy,

My story is so, so, so similar to yours.

I have a Brainstem Cavernoma which first bled when I was 13. My first symptom was double vision and at 33 it has never left me.

Throughout the years I have had countless bleeds and a couple of strokes which have all taken their toll - physically, but emotionally also.

Seeming so healthy on the outside, but constantly struggling on the inside. Being dismissed by a myriad of health care professions because "many others have it far worse than you". Which it true, but completely dismisses what I am going through.

I have had to leave jobs and then eventually my career because of my Cavernoma/it's symptoms? How do you even explain it? There has never been any support or recognition of what I'm going though. I guess because we don't check the right kinds of boxes?

I've not tried CBD oil, but I hope it helps you. I have found that trying to keep my stress levels down greatly reduces my bleeds. Easier said than done, I know. I'm sorry I can't offer more practical advice.

If you want to talk, I would be happy to. I'm not sure if you can DM on here, but I'm sure we'll figure something out.

Stay strong!

Pippa x

[lilycat647 in reply to PippaMayb]

The person that said to you "many others have it far worse than you" needs a good kick!! wicked thing to say.

[Mitzy-33 in reply to PippaMayb]

So glad someone replied How do you manage your double vision? I was left with it only to the left now it’s all over plus I have Oscillopsia. I am struggling at the min to get any sort of normality back how would I be able to reach you so we could chat?

[PippaMayb in reply to Mitzy-33]

My Insta is public - if you DM there I can give you my email etcinstagram.com/pippa.maybe/

[Thankgodforlife]

Hey mitzy, my names Jon , I’m 31. I don’t have much to offer but I could relate. I have one on my brainstem too. My double vision is pretty much completely gone, the thing that I got stuck with is, I can’t open my right hand. I hate it cause I always feel self conscious when it’s time to shake someone’s hand and I can’t. Most of the time I try to go for a fist pump with my left hand and with covid that has became a little more acceptable then a hand shake lol but anyways take one day at a time and get plenty of rest.

[Mitzy-33 in reply to Thankgodforlife]

Sorry to hear that jon it’s a terrible thing to live with a cavernoma not knowing from one day to the next just what’s going to happen.. I have had my mri results that indicate no new change to the cavernoma . I had to chase the results up as I have just been left once again to try and deal and recover from these symptoms, something as obviously happened, I do feel better in my self it’s just my eyes that or causing me distress how long did your double vision last for in the past? I have had it before but I’m sure it had rectified it’s self by now I never took notice just how long and I’m worried my eyesight won’t return

[Thankgodforlife in reply to Mitzy-33]

My double vision Lasted about 2 months but with me once it was gone it never came back. So I think I got lucky with that part

[Mitzy-33 in reply to Thankgodforlife]

It’s already Been nearly 9 weeks since it started My life as drastically changed hopefully it will return but I’m getting more and more doubtful.. good luck Jon and hope u have a healthy future