Right Brainstem Cavernoma

[Jimmyjg]

I am 26 years of age, i first found out that i had a cavernoma when i was 16, due to the fact that i collapsed in class, i didn't occur any deficits then. When i was 19 just before i was about to finish my A-level exams i suffered from two bleeds, one week 1 bleed and the second week a following bleed, this gave me major deficits, i lost my movement in my right arm/hand, foot, my speech disappeared and my memory and concentration and thus not allowing me to take my a-levels. I recovered fully from all these conditions and it just took me a couple months. So surgery was too risky and didn't decide to go under operation.

Now i'm 26 and i've just had my fourth bleed which has incurred me to have double vision, headaches, and shaking in my right arm.

This has affected my life in such a major way.

My questions are: 1) If Surgery is offered to me again, shall i go for it?

2) Has Anyone suffered with this double vision before and how long did it last for, for you to recover?

3) What help could i get from the government? to survive.

[Jac78]

Hi Jimmy I am 39 now and had first bleed 11 years ago which resulted in double vision. My vision improved all the time and maybe a few months in it had resolved. The cauk page offers great advice and they have a secret Facebook page too. Wishing you a speedy recovery

[EmmaJ70]

As Jac78 said - the best place to ask this questions is on the secret Facebook page. You need to apply to be a member of Cavernoma Alliance (it's free) and they will offer to add you to the page. Website: cavernoma.org.uk/

There's plenty of us there and lots of useful info.

[Thankgodforlife]

What's up jimmy ,I can tell u about me. I'm 28 had my first brain stem bleed when I was 25 , I suffered from ringing in my ears and double vision and I wasn't able to move my right arm or right leg .

The ringing went away in a month , double vision got better little by little, took about 3 months to be back to normal. My hand and leg are working about at 85 percent as before but it's all good . I never got surgery . And I'm happy and content at where I'm at. I just hope for no more bleeds.

I had gotten a letter saying i'm eligible for disability but I can still work and I rather stay working

hope this helps bro

If u need to talk or anything hit me up

[Jimmyjg]

Thankyou for your responses Jac78 , EmmaJ70 , Thankgodforlife . I am very pleased to here that the double vision had improved, although it has been a month or so now and it seems for me that there has been no improvement :(. @thankgodforlife, similar to me, my hand and leg are still working at 85% percent since my bleed when i was 19.

I joined cavernoma alliance secret facebook group straight after i joined this, thankyou for the advice though.

I recommend this book as a must read, its called 'Dipped into Oblivion' by Sacha Bonsor, you can find it on amazon for like £5, she talks about the exact same situations that we have all been through as she also had a brainstem angioma.

[Jimmyjg]

I have also come to the conclusion to opt in for surgery, if they present the option again. As i cant afford to have yet another bleed in my lifetime, its a big inconvenience. Also aswell f yo need anythng m happy to talk.......

[julebee]

I had my first bleed when I was 12, then 16 and my major bleed at 20. I had double vision for about a week, as well as off balance ...I was admitted to Royal Melbourne Hospital where I had surgery, I have been left with permanent facial paralysis ...I am now 49. Hopefully your double vision won't last too long, it is not nice. All the best, I am thankful every day that I have lived to the age I am and even though I have another cavernoma that has developed in the last couple of years I am quite healthy with no real issues...stay strong and hopefully you will make a good recovery