Hi everyone...new here...looking for support

(just copied this from "blog," probably should have posted on "forum" instead....

Hi everyone -

I'm grateful to have found this site. I'm 44, married w 3 kids. I had endovascular surgery at Cedars Sinai (coil, stent) 4 weeks ago - have 3 unruptured aneurysms - 2 taken care of by the coiling/stent (one coiled but the stent - 22mm long- covers the neck of the 2nd aneurysm which was only 1.5mm and just above the one they coiled), and another on the other side of my brain that is 2mm, and tho the surgeon tried to coil, he couldnt so its being watched (a source of huge anxiety for me). Wonder how others deal with the watch and wait approach - I know it's only 2mm, but I have family history and (obviously) multiple aneurysms, so even a 2mm one has a higher rupture risk than in someone w/o family history and/or multiple aneurysms.

Recovery has been slower than I expected - SO much exhaustion, but at 4 weeks out I'm doing much better. Have had 2 instances of sudden tingling/pins/needles - one on my whole left arm, one (last nt) just 3 fingers on my left hand - doc checked my plavix and aspirin (325) levels and they were ok - but frightening.

Also supposed to go to Cabo in a month for New Years, and don't know if my anxiety about that trip is justified....they do not have good medical care at all (tiny 5 bed hospital, no neurosurgeon - it's a tiny town in mexico...)

Thoughts on any of this? Its just all so new to me....5 weeks ago I hadn't yet entered this whirlwind of fear, shock, anxiety....I know it will settle, but I'm certainly not settled yet! Getting better tho...

Also - I've read in these blogs about a helpful article called A Letter From Your Brain, but can't find it on the site. Can anyone help?

http://www.bafoundsupport.org/profiles/blogs/a-letter-from-your-brainpleaseears ago if I didn’t manage to get the whole thing go to the main site www.bafound.org. There is a search box in the top right corner.

That’s alink to the article. I had surgery two years ago for a 5-6mm near thecircle of willis. I also have one that’s around 2mm they are watching and waiting on. I go for another CT in 2013. For the most part I don’t even think about it. Although I was back to work in three weeks the exhaustion lasted for a while. You needto give yourself time. As far as Cabo what does your doctor say?


Hi Jennifer, I cut & pasted the Letter From Your Brain for you…here goes…
A Letter From Your Brain


I’m glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That’s why I need you. I need you to take care of me.

As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, “it’s time to get on with life.” That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don’t shut me out. Don’t tune me out. When I’m getting into trouble, I’ll need your help more than I ever have before.

I know that you want to believe that we are going to be the same. I’ll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can’t fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse… I’m scared. I’m afraid that you will do that to me. If you don’t accept me, I am lost. We both will be lost.

How can I tell you how much I need you now? I need you to accept me as I am today… not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It’s as if there is shame, or guilt, in being injured. Silly, huh?

Please don’t be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me, we can make it even further. I can’t say how far. I won’t make any false promises. I can only promise you this: I will do my best.

What I need you to do is this, because neither of us knows how badly I’ve been hurt (things are still a little foggy for me), or how much I will recover, or how quickly: please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I’m trying to get your attention in the only way I can. Stop and listen to me.

I get exhausted easily since being hurt and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.

I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same… you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don’t want to die and I don’t want you to die.

I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don’t want you to give up. Don’t give up on me. Don’t give up on yourself. Our time here isn’t through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn’t easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don’t care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.

Don’t be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit, I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.

Please don’t reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.

©1996 Stephanie St. Claire

1 Like

Hi Jennifer~
My situation is different than yours, I do not have family history nor do I have more than one, but I have undergone two coilings on the large one that had ruptured and I was told there is still a 2cm neck on it 0 this can’t be right, and most only be 2mm, but the report said more so one more question for my docs. Anyway…I am on the wait and see approach, just had a follow up MRI about two weeks ago and no more growth and no others since the last surgery six months ago - so I get another six months of waiting. For me the waiting is easier as I have fear to undergo a third surgery, but again every person and every situation is different.

As far as your Cabo trip that is again a choice you need to make - my surgeons told me to stay out of Mexico due to the medical options that are not available should I need an emergency surgery, on a personal safety issue, I would not recommend Mexico to anyone at this time. There was a recent report from the State department about the safety concerns for American travelers to Mexico. It is common knowledge that the cartels regulary kidnapp Americans for ranson and other horrible things. Previously this was not in the resort areas, but the resorts are being targeted now due to the ability for ransom payments. Again, this is a personal choice - I am sure Cabo, the sun and the sand would be a very beautiful place to relax and recover.

Good luck and I hope you are able to make choices that you feel confident and comfortable with so that you may find some peace and improved health!

Hi Jennifer,
I think you should find a warm and sandy place in America. Yes I am straight to the point. I just went through coiling and for me I want to stay close to home. For me I would hate the watch and wait thing. However, I had my coiled and I am still scared like is it ok, will be there be another one. Don’t think any of us feel like will ever be the same. bless you and I wish you all the best.

Hi Jennifer,
I only had 1 anny and it was clipped in 1998 so I can’t answer your other questions, but I have the Letter From your Brain. I attached it for you. I found it years ago & still like reading it even though I don’t have issues. It’s just a reminder of how precious life is to me now! Enjoy!
455-letterfromyourbrain.docx (110 KB)

Thanks so much, everyone. I had an MRI today b/c I’ve had 2 episodes of pins/needles on my left side (surgery was on right side of my brain) and the GREAT thing is that there was no indication of clot problems or bleeding. Have others of you had numb/strong tingling sensations post surgery? I hope they are a thing of the past - I know that they have to be taken seriously in case it is an indication of a clot. My surgeon is having me stay on plavix for an extra few weeks to be safe (then will keep w/ aspirin - 325).

My surgeon is fine w/ Mexico (more fine than I am!) - said that really the biggest risk is dehydration if I were to get sick (blood thickens when dehydrated). So, I’m going to rest in his confidence and plan to go. We have a time-share, and meet up w/ my husbands whole family - my kids look forward to it all year every year- lots of cousins and family fun. It’s an 8 day trip - only a couple hours by air from L.A. - and I have to try to keep LIVING and not let this frighten me into a lesser existence. That said, I would never do anything that was obviously risky. I’m not adventurous to begin with.

I also feel a need to be and seem healthy and normal for my kids - and if I stayed home, it would give a message that I’m not ok - and I need to live in the (mental) land that I AM okay and WILL have my full life. It;s hard - without the kids, I’d probably be living in the ER waiting room just to feel safe! Just kidding -but the anxiety of all of this is so big.

So - I’m a month out (YAY!) and the last 3 days have been the BEST! I feel like myself again - it’s amazing. I do wish that I’d been better prepared for the length of recovery time - I know that a month is even really short, but doctors would seem to have many of us believe that we’ll be just fine in a matter of days.

Im still really scared about my 2mm one. I’m phobic of surgery, but know that my best scenario might be that this aneurysm grows so they can coil and then really reduce its risk. Ugh. It’s hard to have to be so not in charge.

Thanks so much. I’m so glad to have found this website.