Intro - My Partner’s Lesion Just Got Worse

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Intro - My Partner’s Lesion Just Got Worse

Postby deeland » Mon Oct 29, 2018 8:16 am

Happy to find this forum.

My partner (Steph) was diagnosed some 15 years back with a Cerebral Cavernous Malformation. (Cavernous Haemangioma.) It was somewhat calcified and stable, and even the Neuro said no more MRIs necessary. Seems dormant.

Recent MRI indicates brain lesson has gotten bigger. Could have had a bleed occur. Mass is about an inch or so across. Steph had recently developed these sudden attacks: very loud tinnitus, vertigo with nausea, balance issues. Each attack leaves Steph with gradually more hearing loss in one ear. We thought it might have been Meniere’s Disease. Have to say, I’m pretty much afraid of the unknown, and really want to see what the Neuro has to say. I think surgery, even though high risk, may be necessary. Steph doesn’t seem as worried, but let’s face it: loss of hearing, vertigo, nausea. Stroke seems highly likely.

I was hoping for the best. Even tried praying to God a few times: I was a bit desperate. I’ve always known this, but life is pretty damn unfair. Over the years, we’ve gotten afraid to be happy, as the worst tends to happen. This is going to be a tough period.

So, here I am. Wondering how to deal with all this, and be there for Steph. Be strong. Hope I can help others here, too. We’re in New Zealand, and there’s seems to be no forums or support groups. Love to all.
deeland
 
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Re: Intro - My Partner’s Lesion Just Got Worse

Postby Elizabeth » Tue Oct 30, 2018 7:21 am

Welcome,

I'm sorry you are going through this. Yes it is scary especially at first...getting used to the unknown was very hard for me personally. Taking it day by day is really best, easier said than done...I know, but somewhere in there is the silver lining...the lesson of appreciating the small things the ordinary things...that's the key and the beauty. Now that I have had mine removed almost 8 years ago in December... Its a lot easier, but I try to always remember what a gift I have been given. There were many, many rough days, weeks, months...but today I'm doing pretty well. The brain is amazing at how it can repair itself with therapy. It is scary but it's not all doom and gloom. Most people do pretty well. Finding a good team is most important than you can navigate with confidence.
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
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Re: Intro - My Partner’s Lesion Just Got Worse

Postby deeland » Sat Nov 03, 2018 7:15 am

Hi Elizabeth

Sorry, I didn’t get notification of a reply. Thanks for your kind words. I’m definitely thinking the worse and panicking a lot, when I need to be a rock. I feel more like a child in adult clothing, if I’m honest. Every day, every night, it seems, my partner tells me she’s: tired, dizzy, doesn’t feel right, got a noisy head, feels sick; but she still goes to work, and works hard. We’re sticking to a low sodium diet, as we convinced ourselves that she most likely had Meniere’s. But, always go with the logical and most obvious. Of course it was the thing in her brain. I’m not sure why our GP didn’t just send us straight to the Neuro. Instead, it was: “… just a migraine” or something. Then, off for a hearing test, then ENT. Now, it’s finally back to the Neuro. I’m kicking myself for not going straight back to the Neuro immediately.

One thing this forum has already taught me: get busy pushing for the specialist/expert.

Thank you for saying it’s not all “doom and gloom”. I’m in a dark place right now, and I’m not sure what I’d do without my other half. I love her dearly, and would gladly trade places. Feels like we’re on borrowed time, right now. I wish everyone here only the best. There’s not much info or support out there. Most assume a death sentence. But, I suppose, no one really knows how long they have. Got to try and be objective.

Great to hear your operation (removal, no less) was such a success. Gives me some hope.

All the best.
deeland
 
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Joined: Mon Oct 29, 2018 8:05 am

Re: Intro - My Partner’s Lesion Just Got Worse

Postby Feelgood » Sat Nov 03, 2018 6:36 pm

Hi deeland ,
Sorry to hear all this crap you and Steph are going through. Try looking into Gamma knife, it’s don’t know if it’ll help but it’s not surgery.
Feelgood
 
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Re: Intro - My Partner’s Lesion Just Got Worse

Postby Elizabeth » Sun Nov 04, 2018 5:28 am

The thing is...I know its hard to not freak out when you hear there's a bleeding thing that doesn't belong in a brain. But, with that said....and there's no guarantees on anything. People rarely die from cavernous angiomas. Yes, sometimes they become disabled or deal with uncomfortable deficits...but rarely do people actually die from them. Brainstem locations are the most dangerous and kids are the most challenging because they might not report symptoms correctly, but adults without brainstem angiomas rarely die. That's good news and helped me to relax except mine was big 4 cm by the time of surgery and right outside my brainstem. Your partner will most likely be fine so you can feel good about that. I do think a positive thing that can come of this dx is a heightened sense of mortality...even though death from this is unlikely... Its good to recognize the gifts each day brings in my opinion. I am lucky to be here, even if I'm not how I used to be...I'm pretty good...I can do a lot of things and I'm thankful I've been given this chance to live. My surgery was high risk because of the location and it was complicated by a stroke. I take every responsibility I have as a huge privilege. How lucky I get to do all of this!!! Gratitude in all things big and small carries you through the rough parts and if you feel not brave enough..that's OK...fake it till you make it. You figure out how tough you are when suddenly being tough is the only choice you have. You will be fine...keep going. See the specialists, do what you have to. Breath in and out and try to focus on gratitude...it helps!! You can do it!!
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: 1644
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles


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