My first experience with Cavernoma...

Discussions of issues related to living with cavernous angiomas

My first experience with Cavernoma...

Postby Healthyman » Sat Apr 06, 2019 10:40 pm

Hello everybody, quite interesting I found a community for Cavernoma, good to have such a website, thank you guys.

So I have diagnosed with a minor Cavernoma in my root of the brair, here is the explanation:
https://imgshare.io/images/2019/04/06/0.jpg
I have gotten two different opinions already, long story short one doctors says keep going with your life like nothing happen because there is no in anyway I can effect this Cavernoma in my occasion and because it indicted in such a risky area, the root of the brain.. this Cavernoma is not operable. for further assessment a year from now I should have another MRI.

On other hand, another doctor (also a neurosurgeon) said that once the symptoms will be gone which are in my case it`s my motorics, walking balance, vertigo, vision-loss, face numbness etc... have another MRI scan in half a year from now and in case the Cavernoma is still there it is recommended to operate and it is can be done successfully. and so I better beware of exaggerating in sports, alcohol or any stress while I have the symptoms.

So my two questions, first of all all my symptoms already gone and it`s been a month and a half and I already exercise very intense in a gym by myself because I defiantly want to have a much better life style by loving and respecting my life and body. Should I or shouldn`t sign up with a personal trainer to a crossfit program? Is there anyway I can affect my Cavernoma? I`m 28 years old and I can`t see my life as a disable person, I refuse to say no to things that I want to accomplish.

and the second very odd question, obviously I dont really expect an answer here but to read few opinions may clear me some dust out of it. Why the doctors failed to determine if Should I have a surgery or not? how can I decide if I really need?

How should I keep going with my life, how to live now?

I`m apologist if it`s too much but I just dont know who and where should I ask for opinions or other people who have some knowledge about such a thing...

Thank you so much friends, love from Canada Toronto
Healthyman
 
Posts: 3
Joined: Sat Apr 06, 2019 10:08 pm

Re: My first experience with Cavernoma...

Postby Elizabeth » Sun Apr 07, 2019 6:03 pm

Welcome,

Sorry for the delay. Things are a little different in Canada from what I read here. With such a difficult location...surgery can be a very difficult choice and sometimes its best to not have surgery. You can only determine what's best for you after consulting with all the experts and then making a choice. I ,personally, would only consider surgery in that location with the very best, most experienced surgeon. There is a Canadian AA group that you can find the leader of here and PM him if you want. I will look for his user name and repost when I find it. If you look in the Canadian group you will find more Canadians that might have more local expert information for you. They also have meetings at times if you wanted to get together to chat. From what I hear, Facebook is also a good place to network since this forum is fairly quiet these days. Sorry, I'm not more helpful. Best wishes!
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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Location: Los Angeles

Re: My first experience with Cavernoma...

Postby Healthyman » Sun Apr 07, 2019 6:10 pm

Thank you very much for your response. Looking forward to hear more about those Canadian meetings
Healthyman
 
Posts: 3
Joined: Sat Apr 06, 2019 10:08 pm

Re: My first experience with Cavernoma...

Postby Elizabeth » Sun Apr 07, 2019 6:18 pm

Reach out to Shawnm26...he is the Canadian leader and he might be able to help you with more local resources, doctors, meetings, etc. Best wishes!!
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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Posts: 1682
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: My first experience with Cavernoma...

Postby Healthyman » Sun Apr 07, 2019 7:02 pm

Thank you
Healthyman
 
Posts: 3
Joined: Sat Apr 06, 2019 10:08 pm


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