Just Diagnosed with Brain Stem Cavernoma bleeding

Announcements of drug trials and other treatment information

Just Diagnosed with Brain Stem Cavernoma bleeding

Postby Marfall » Sat Mar 28, 2015 3:26 pm

I have had numbness on the entire right half of my body and face but I can move everything so I look completely normal. I have no pain but my balance is slightly off and I'm feeling more tired than usual. I have has symptoms for 4 weeks and was diagnosed with a bleeding cavernoma on my brain stem 2,weeks ago. One highly recommended neurosurgeon recommended a conservative approach and wants to wait to see if the bleeding stops and the cavernoma shrinks. He said surgery could cause more damage that could be permanent . Another neurosurgeon, who was highly recommended by a friend, recommended endoscopic surgery to remove it. Im so confused and scared! I'm 46 years old and have 2 kids ( 10 and 12 years old) and work full time. I carry the medical benefits and am the primary earner and caretaker. I am open for any suggestions or advise!!!
Marfall
 
Posts: 4
Joined: Sun Mar 22, 2015 7:48 am

Re: Just Diagnosed with Brain Stem Cavernoma bleeding

Postby Elizabeth » Sat Mar 28, 2015 7:18 pm

Welcome,
I'm so sorry you are joining us, but glad that u found us. Read the section for newly dx....lots of good info there. No blood thinners, rollercoasters or scuba diving. You seem to be doing fairly well, but might want to consult with some of the best MDS in the country. Brain stem is a tricky location and only the very best doctors should be trusted to operate there and even then its still risky. You will eventually have to decide what's best for you and ur family but talking to the experts can be helpful. Ask any specific questions as they arise...we will try to help but we are not doctors, just speaking from experience.
You are certainly not alone.
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
Moderator
 
Posts: 1644
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Just Diagnosed with Brain Stem Cavernoma bleeding

Postby Michelle2000 » Sun Mar 29, 2015 5:05 am

Welcome,

I'm sorry you are having problems, but I am glad you found this site. You certainly are not alone. The decision whether to have surgery or not is a hard one, and I agree with Elizabeth that only the very best NS should do it. I would not change our decision for surgery for my son, but even though it dramatically improved his symptoms (constant nausea and vomiting, loss of balance, inability to walk, double vision, etc.) the surgical path created some new problems. He still is completely numb, though only on the left side of his head. The rest of his left-side numbness/weakness cleared up. Rehab is long and hard. Be sure you ask lots of questions as you make your decision. People here are happy to share their experiences.

Best wishes,

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
Michelle2000
Moderator
 
Posts: 709
Joined: Thu Dec 02, 2010 7:40 pm

Re: Just Diagnosed with Brain Stem Cavernoma bleeding

Postby silvianeider » Tue Mar 31, 2015 1:42 am

Hi! I was diagnosed with a brainstem cavernoma 3 years ago, after a bleeding which caused numbness to my left side, vision and balance problems among other little things. I was really scared when I knew what it was about. The doctor also suggested the 'wait and see' option. I recovered completely after six months and I'm fine now. I had many sessions with a psychologist and this helped me to go on and think af all the good things I have around. There are days that I even forget I have a cavernoma. So, take it easy and enjoy life.!!! :D
silvianeider
 
Posts: 10
Joined: Fri Nov 23, 2012 2:41 pm

Re: Just Diagnosed with Brain Stem Cavernoma bleeding

Postby Marfall » Thu Apr 02, 2015 10:54 pm

Thank you for responding to my post. I am so glad I found this forum! I feel much better after reading your posts and am sure I will eventually figure out the best approach for me. It has been 4 weeks since my diagnosis and symptoms. I go back and forth between trying to forget about the diagnosis and feeling depressed and worried that I will wake up and have more deficits. I keep reminding myself that no one needs to know my diagnosis unless I tell them because I look fine. I am able to do everything except for feeling numb and weak on the right side of my body. I am not telling my 10 and 12 year old kids because they do not need the extra worry. My husband and I have not been in a good place which has caused me a lot of stress. I am hoping my diagnosis will force him to take on more responsibility which will take some of the stress and pressure off of me. Could this be the silver lining?
I am thinking of you and hoping you all continue to improve. Thanks again for all of your support.
Marfall
 
Posts: 4
Joined: Sun Mar 22, 2015 7:48 am

Re: Just Diagnosed with Brain Stem Cavernoma bleeding

Postby houdinni » Fri Apr 03, 2015 3:54 pm

HI, I have also had a hemmorhagic cavernoma - 4th bleed on my middle peduncle of my cerebrum.... STILL HERE!!! and doing well... Each time has gradually gotten worse. Last time was a doozy. But with lots of rest and physical Therapy. I pulled through and did well. No surgery yet. Wait and See method here. My two year anneversary since my last bleed just passed and I am counting my blessings daily. And above all else. Enjoying each day and not sweating the small stuff. Spending as much time as I can with my daughter. :)
houdinni
 
Posts: 3
Joined: Tue Feb 19, 2013 7:19 pm


Return to Drug Trials

Who is online

Users browsing this forum: No registered users and 1 guest

cron