diagnosed 6/24/13. Took the news well at first but since meeting with neurosurgeon I am a nervous wreck. Everyone has a horror story. Friends do call but they really can't handle this kind of news so they talk around it. I really need my friends support. How do I go about asking for that without scaring my support. I feel lucky to have found BAF support community but I also need my friends.
Hi Gwen,
Not everyone has a horror story related to their aneurysms--I've gone thru two clippings (98 and 2010) and no horror stories to relate and no ill effects -- your friends are probably stunned and i'm sure not many of them have gone thru the anxiety and bewilderment of knowing anyone who's had an aneurysm (until now ofcourse) so give them time...A lot of people are uncomfortable with medical issues they know nothing about and they might not want to scare YOU with their lack of understanding (the word "aneurysm" tends to freak people out, I know it did me along with everyone I know)!
The more knowledge you can glean about your aneurysm, the better off you'll be. This is a great place to start! Glad you're here, Peace, Janet
Not many people where I live really understood my situation. In fact, the rumor in my town was that I had 2 tumors. I was also a nervous wreck, but my surgeon was wonderful at making me feel comfortable. ALSO, I was really scared about the surgery itself, and really I should have left that worry to the doctors. My job was to remain calm, follow pre surgery instructions. I know I gave myself unnecessary anxiety. I was taking Xanax to sleep! I don't need that at all anymore! My surgery was on 6/21 and I am relieved that it is over. Good luck to you!! leslie
This is a journey of emotions...and in the beginning it seems the fear and anxiety take over...my Neurosurgeon prescribed some Xanax until my surgery date and that helped take the edge off....but then it took work from me...I walked a lot ...and would tell myself you will get through this .... and got a lot of positive support on site and from my husband...Unfortunately, people are afraid when they here aneurysm....I found this to be humbling experience...because along this journey I learned who were my true friends and family...Your true friends will support you...~ wishing you better days ahead....~ Colleen
Thanks for your input Colleen. I know that friends don't know what to say so they might seem insensitive with what they project. However, I am finding out who I can truly coiunt on to be there for me. I am t ruly surprised with the behaviors of some of my friends.. I am grateful that I found this site. Thanks again for your support.
Thank God for this site. I have had family members with aneurysms but I don't have the information I need. I am adopted and just recently got in contact with biological family and found out about this history of aneurysms. Most of my biological family will not speak to me so the information I get is very limited. I also need to able to speak freely about what I'm going through and the intense fear that I feel every second that I'm awake and even in my dreams. Making an appointment for surgery toiday if possible. I can't wait six more months for an angiogram. Thanks you for yoiur kind words and understanding. Stay blessed.
It's nice to know that there is not always a horror story. I will actively pursue as much information as I can. Thank God for this website which make it possible for us to share their stories and encoiurage others through their sharing.
Gwen,
I was scared to death when I heard the news of my aneurysm, as well. I felt like no one understood what I was going through. My husband really didn't talk about his fears regarding it until the night before my surgery. My husband wasn't able to go to all of my appointments before my surgery because he had taken quite a bit of time off for some appointments that I had before we knew about my aneurysm. I had some heart issues and hospital stays previous. A friend went with me to my initial consult with the neurosurgeon and then to my pre-op appt. It helped having her with me, because she helped some of my other friends understand the seriousness and risks involved with what I was going through and to know how things would proceed. I wish I had something to help calm my nerves. Finally on Friday before my surgery (which was on Monday) I called and let the neurosurgeons staff know that I wasn't sleeping at all and they prescribed a tranquilizer so I could sleep. I finally slept and felt a lot better. I do recommend sitting down and talking with you husband and at least your close friends about how you are feeling and share what you are learning so they will better understand. I sure wish I knew about this site sooner, I didn't know about this site until 3 months after my surgery and it has helped me with my recovery.
But, like I believe I said on your profile page, I would go through a clipping again in a heartbeat and if my new aneurysm is a candidate for clipping surgery, that is the path I will choose again. I know that this makes you a nervous wreck, it certainly did me and still does, there are days that I still just sit and cry on and off all day. But I also know that God is in control and the surgeons are the experts in this and truly do know what they are doing.
Praying for you
~ Carol
hi gwen! great topic! my neighbors always say to call them if i need anything but i don't want to be a bother as they have thankfully helped me tons, your true blue friends will be there-just let them know how appreciative you are-and actions speak louder than words-maybe a card or note, in the meantime your stuck with us !!!!-lol keeping you i thoughts and prayers for great support and healing~~
Gwen,
Because you have been blessed to be diagnosed (unique in itself) before leaks/ruptures...you have the tremendous opportunity to put things together...to think them thru and make decisions...
For family/friends...ask your closest (but most competent) to be your advocate...to sit w/you in your appointments, to follow thru during treatment, for any hospitalization...For basic words...tell them up front because it is brain surgery, there are potential issues...and, even in normal procedures / recovery, there are variants in the recovery time...
Tell that one you will have an outline...their intro to the brain...by the artery/segment of the aneurysm location, the size/shape, (include images from angio or whatever rad procedure...can ask for a CD/DVD of it) )...What the doctors have explained to you about the adjacent/near cranial nerves, which lobe, the main access artery to the artery w/aneurysm... what has been offered/explained in clip vs coil, by when it should be done...potential complications...which brings up who is the contact person on your med records...or who would you put on it....if not yet done?
Try a reversal...pretend you are learning/researching for your child, spouse/partner, parent, sibling, friend...
to determine how you would be able to support, share, give to them...whether cancer, heart, kidney, or brain...
So many of us, from our time here, can realize how little we learned/researched over decades of hearing "stroke"...for the ischemic strokes and, not the variances by location w/in the brain... to help others...
Are you completely satisfied with all you know...or do you have more questions to ask your doctor(s)?
Prayers for your successes...
Pat
Gwen...you are again blessed that you were able to connect w/your bio family...I know other adoptees who were unable to connect and do not know if potential genetic connection...
Pat
Dear Pat: Thank you so much for all the information. Every time I think I know enough I discover more questions that I need answers to. I saw the neurosurgeon for the first time last week and became so overwhelmed that I could not think. I decided to have the operation because I have believed there was no other choice but rupture. However you have given me many things to think about. I won't change my mind about the decision to have operation but will go armed with more information now than I've had before. Thanks again.
Thanks you for your thoughts and prayers Ron. God Bless!!