Life Planning

Discussions of issues related to living with cavernous angiomas

Life Planning

Postby seasonal » Thu Jun 06, 2019 10:34 am

Hello,

I have just been diagnosed with a relatively large brainstem canvernoma. I am 29, was working full time in a high pressure job(currently on sick leave) I started getting double vision about 2 weeks ago and got admitted where they saw it was bleeding. At the moment the double vision is a lot better, but I still have issues with central nystagmus (eyes flickering up and down) which has made walking places a bit intimidating and reading difficult. I still am pretty unsure about what it all means. The neurologist is organising for me to see a neurosurgeon, but has essentially said that the neurosurgeons wouldn't touch it now, and some would just wait to see if it bled again. He said there is a 30% chance it will bleed over 5 years, but I was hoping to live for 40 more years! So I assume a future bleed is inevitable. He said he is mainly organising the surgical review to help give me information about making future decisions. The chances of having a deficit post surgery are guaranteed because of the location of the lesion. The deficit post surgery depends on the surgical pathway they take. The chances of significant disability following another bleed could also cause disability.

So just a few things because I suspect it will take a while to see the surgeons.
> I am getting married at the end of this year, and I wanted to start having a baby... has risky is this?
> I have kind of been thinking that I might just one day have a stroke and die; is that what you guys think ? or is that me catastrophic. Someone said to me today (who didn't know what is going on) "this won't matter in 10 years time" and my first thought was like "well I could be dead or permanently disabled" and that makes me really sad
> there are no angiomas in my family and it is a single lesion, but do I need to be tested genetically if I want to have a baby?
> my neurologist is optimistic my function will improve as the oedema settles, do some of you just wait for the next bleed and just plan for to take a few weeks to get better ?
> how have you gone about financial planning? My symptoms have really taken a knock to my confidence because initially the double vision basically prevented me from reading (essential in my job)

Its all just generally been a bit of a shock. I will be directing some of these questions to surgeons but I was just hoping some of these questions may be something that have come up for others as well.
seasonal
 
Posts: 1
Joined: Thu Jun 06, 2019 10:09 am

Re: Life Planning

Postby Elizabeth » Tue Jun 25, 2019 11:52 pm

Welcome,

I'm so sorry... It's all so scary. I will try to answer my best, but unfortunately there are not actual real answers available... Nobody really knows why these things bleed or sometimes don't bleed. Each person is different, but based on data the experts do give some answers. I'm not a doctor so this is not advise and you should talk to a doctor you know and respect to get good answers. There are some known experts and if I was you I would consult with several of them with a deep difficult location in the brainstem. As far as having a baby, I'm pretty sure the latest recommendations are that it is not a significant risk factor. I personally, have a hard time with that advise because my first pregnancy was what I believe was a trigger to set my angioma into action. I never felt right after having my first baby, and MRIs following me showed much growth in the 2 years post partum... I never knew I had an angioma toll after I had my first baby. Coincidence, I guess they would call it?? I would personally be very concerned about a brainstem angioma and having a baby, but as far as I've heard recently the doctors are saying no connection?? I don't know.
Having only one angioma is considered a good thing and likely not genetic.
Yes, we all worry about dying prematurely from these things... Death is very rare, although possible with a brainstem cm. Disability is a concern with or without surgery. Yes, it's possible... Hopefully not. Trying not to worry is the best advise, trust me... I know... Easier said than done.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
Moderator
 
Posts: 1685
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Life Planning

Postby Elizabeth » Wed Jun 26, 2019 12:04 am

Sorry, my phone cuts my answers off... Here's the rest.
Yes, you will probably improve as the swelling subsides. Many people return to baseline and do fine after a bleed.

The greatest risk of another bleed is sooner than later. After some time... I can't remember the exact time lines.. 3-5 years the risk of a rebleed lowers again.
Financial planning can be tricky because many of us are young and then disability strikes. I was lucky because even though I was only 36 I had a pretty good job and excellent benefits. I have not been able to work since before I had surgery. Everyone is different. This is not the plan I had for myself, but I am lucky and blessed to be living this life each day. My angioma was in a deep place and my surgery was complicated by a stroke. I can not work, but I still get to be a mom and wife... Not the mom and wife I always thought I'd be but maybe I'm better now because I don't take anything for granted. I appreciate everything more. Yes, I could be dead, but I'm not... Thank goodness!!

Find the best doctors and get their opinions... I know how scary it can be. You are not alone!

Take care!!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
Moderator
 
Posts: 1685
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles


Return to Living With Cavernous Angioma

Who is online

Users browsing this forum: No registered users and 2 guests