Brain Aneurysm Support Community

Newly Diagnosed & Nervous

Hi my name is Nelly. Im from a little island called Bermuda. Im 39yrs old, married and we have 4 kids, 13-11-9-8.
May 23/19 I was diagnosed with a 3.9mm Annie. When I heard the word Aneurysm I automatically froze because I’ve had many women I’ve known who have passed from ruptured Aneurysms and now the Neurologist tells me I have 1, just mm behind my eyes. I swear after hear the “A” word, everything coming out of her nouth sounded like Charlie Brown’s School teacher. She immediately referred me to Lahey Medical in Massachusetts for a 2nd opinion.
I arrived in Boston 3 days later and my Neurosurgeon sends me for my 1st Angiogram. I then return to his office to get the results of the Scan. I hear 4 words that gave me chills instantly, We Found Another Aneurysm 3mm. My heart sank and I just turned to my dad and cried. I was terrified. The Neurosurgeon immediately suggested I have a Cerebral Angiogram where they sedate you and go through your wrist to do the Angiogram and have a better look so he can set a plan or make a decision on what to do next.
I then flew back to Bermuda 2days after the Cerebral Angiogram, not having the results back. That was the longest 3wks 6days I ever had in my life. I had so many thoughts going through my head. Am I gonna leave my kids motherless and my husband to raise our 4 kids alone?
I finally received a call from my Neurosurgeon and he suggests going ahead with the Coiling procedure.
I am very very scared. Its been hard, since on one hand I’m so glad they found them and on the other hand I am so sad and scared and anxious and very muh alone. I’ve already had my GP tell me I have borderline depression 2yrs ago.
I wouldn’t say my husband doesn’t care, I just think that since he sees me still “being mommy” & doing what I normally do on a daily basis, he just doesn’t comprehend the severity of the whole situation. Its very hard to be mommy & wife and do what I normally do with a constant thought of having these 2 Time Bombs in my head and I don’t know if or when anything will or will not happen. Its a lonely feeling.
Well surgery is set for August 8th at Lahey Medical. The wait is driving me crazy.
•Can anyone tell me how they felt post-op? Headaches? etc.
•How soon did you return back to work?
•How long were you in hospital for?
•Anyone have any personality changes?
Thanks for taking the time to read,I know its a bit long.

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@Nellybritish - Welcome! I will be having a Pipeline stent placed on this coming Wednesday so I will only be able to speak to that after the procedure. However, there are others who have had one or the other (coils/stent) and some have had both that will be able to speak regarding the recovery as well. From what I have been reading and communicating with others here, the waiting seems to be the most cringe worthy part. This is the phase where I can relate to say it has been nervous energy and fluctuation of emotions but I have been keeping the faith by prayer and knowing things will be ok.

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I will be having Endovascular (coils). Im so nervous. Thank u for your reply. All the best to you Wednesday, I will keep you in prayer. Please don’t hesitate to keep in touch.

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I’ve had three coilings for one aneurysm. The first for the rupture, ICU 26 days. The other two were one night stays. I’ve developed a few inconveniences. Recovering from the rupture was a long road. Each time she did either an angiogram or a coiling, it set me back in speech and cognitive skills. Second coiling gave me Foreign Accent Syndrome. Headaches are common place but they do become manageable eventually. Some of us have issues with lights and sound. Some have no issues other than being patient for the healing process to do its job. Here’s hoping you have no issues other than just being tired!

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Hi Nelly , it looks like you had almost no time to Psichologically adjust to both factors : having aneurysms and coiling procedure . With first , it’s a problem that takes few stages to accept . I felt the same when I heard about aneurysm ( didn’t expect anything bad ,came to MRI in a good mood ) , like it couldn’t happen with me . ( by the way I am 39 , mine is also behind eye) At the beginning it’s a panic and fear , then little by little after appointments , after more and more reading about aneurysm, I started to feel more normally . It takes time to adjust those things . The good sign your aneurysms were discovered , the desicion about coiling was made , you have a date when it will be fixed . somehow find something that calms you down at this moment ( religion , music , walk , art or hobby .good movie …) …
I really hope there will be ways for your husband to understand more what’s going on , may be let him read some info , or let him talk to the doctor …, I understand what you talking about , and really hope you will get all support you need from your family … and on this forum as well …

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Hey GK,
It feels good to hear from someone my age. Most I’ve read about so far are much older Lol. No I haven’t had any time to really absorb whats been happening . I have been reading any and everything to get some knowledge on this, which has its Pros and Cons. Then I finally decided to take my GPs advice and join a support group. (Glad I did) I still have days where I go through every emotion you could think of. I just do my best to not let it overcome me and try to remain positive. Music & meditation(which I’m still learning) are my go to, it takes everything off my mind for the moment and puts me in a better head space.
You said that you have an Annie behind your eye as well, have you done surgery or plan on doing it? If so which procedure. How have you been feeling?
I sent my husband 2 videos, 1 explaining what Aneurysms are and 1 explaining the Coiling procedure and when I asked if he watched them he said “yea”. The way he responded just crushed my feelings. I’ve come to the conclusion that he doesn’t really care. Since I have to fly out to Boston to do my surgery he will be staying home with our kids, he’s unable to come with me. And I really did need him to be there so he can see an hear what the Dr has to say. Its just not easy to find babysitters for kids during summer break.
I have friends & family & clients that keep checks on me and are supportive. Its just hard not having that support you really need from your spouse.
I just joined this group yesterday so I don’t really know anyone but I can tell people are very supportive here. :slight_smile:

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It seems you do everything is needed !
I was diagnosed 2 years ago , doctors decided to watch it so far , so I just do annually CT. To be honest I don’t feel very well physically :having a lot of headeches , migraines , no energy , but working and taking care of my child and my mom .
It’s heartbreaking to hear about you feeling no support from your husband . We all different , some people are not sensitive unfortunately , however may be he also needs more time to adjust and understand , and later he will …who knows… the one thing is really important you take care of yourself the best way is possible …

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I try my best. I never have 2 days alike.
Sorry to hear that you haven’t been feeling well but continue to be as strong as you know how and all will work out for the best.
I hope my husband comes around soon. I don’t think he will but I hope so.
Ill keep you in my prayers. Take care of yourself and don’t be a stranger. I’m here if you ever need to talk.

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Thank you so much for warm supportive words ! It’s very kind! Please keep us posted how are you doing! I hope you get even more responses how people recover after coiling , there is also some among the old posts on this forum .

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You’re welcome GK. I have read a few older posts and saw where people experienced good & bad recovery. I will definitely keep everyone posted and informed.

Hi Nelly. I’m so glad you reached out for support here. It’s a priceless community because as you said it is something that makes you feel so alone! I’m 41 and was 40 when my aneurysm was discovered, with two young kids. I had so many of the same feelings, worrying about leaving my kids without a mother and worrying about rupture before it was fixed. In my case, it needed to be clipped so I had a craniotomy. I was in the hospital for 3 days (I convinced my neurosurgeon to let me stay one more day than he wanted lol). I was back at work by 5 or 6 weeks but I’ve always only worked part time since having kids so that may have been different if I were full time. Now a year later sometimes my plates bother me but for the most part I’m totally myself. A friend of a friend just had the coiling procedure and said she was 100% herself within a month. I don’t know how things will be but I wanted to give you some hope and also to tell you that you are not alone. Everyone’s experience is different with aneurysms but I think a lot of the emotions are the same. My emotional recovery was definitely longer than my physical. I commend you for working through these emotions now and in many ways I think the waiting before hand was the hardest part for sure. Hugs you you. You’ve got this!

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Elizabeth Thank you so much for ur kind words. Its an awesome feeling to finally talk to people who understand. Everyone I normally talk to says “gosh Nelly u seem fine to me”. I dont know what that means, I usually just giggle and say ok. I mean am I supposed to walk around with the Annies on my forehead and be bleeding or something? LOL I’m a hairstylist and I’m still going to work for now. Keeps my mind occupied and busy. So less time to stress. I will be off for the month of August. Hoping thats enough time. I will do my best to keep the group informed on surgery and recovery. Be blessed😊

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Hi, Nelly! My ruptured 11mm aneurysm (SAH - Sub-Arachnoid Hemorrhage) was coiled twice in 2011. No complications post-surgery. 10 days in NeuroICU, 2 days in regular hospital room, another 10 days at home, then back to normal. When my aneurysm ruptured, I didn’t know what was wrong with me…until my healthcare team advised me and discussed with me what procedure they would follow. My surgeon “mapped” the arterial structure of my brain at that time and discovered 2 more aneurysms, 2mm. They were considered non-threatening at that time but would be monitored on my follow-ups.

I remember the 10 days in the NeuroICU as being bizarre and otherworldly. The instruments monitoring me made specific sounds, and my neighbor visited me every day (I’ll never be able to repay that!), and recorded a video of me in my bed answering questions. In that video are the sounds those instruments made, and every time I watch that video, those sounds transport me immediately back to that room! I had never spent any time in an ICU other than to visit a friend, so to spend 10 days lying in a bed was quite the experience. My healthcare team is exceptional and I feel quite fortunate to have had access to them! I was allowed to sit up on Day 2 with the promise of getting out of bed the next day and sitting in the chair next to my bed. By Day 4 I was arguing with my nurse about going for a walk! LOL! They let me do that, and on Day 6 I was chastised for walking too fast…the nurses complained that they couldn’t keep up with me! By Day 7 the physicians were talking about my discharge and that they were “pleased with my progress” and that I was “too well to be in the ICU”. Yay! My follow-ups showed no changes to the size of the ruptured aneurysm; my surgeon knew that I am a scientist and run a research facility in the School of Medicine where I work, so he gave me a stack of research papers as “homework”! That’s where I learned about flow diversion, which was new in 2011 and my hospital had only done a few cases, so they were reluctant to treat me until they had done more. By 2019, they had done over 400, and their success rate was above 97%.

Jan 2019 my surgeon performed pipeline (flow diversion) surgery on the coiled aneurysm, and afterwards I experienced mild headaches for about two months; nothing too severe, but every once in a while I’d have a sharp, shooting pain on the right side of my head (the aneurysm is behind my right eye) but they were always very brief, and my surgeon said it was normal and would pass in time. That turned out to be true. One night stay in NeuroICU. Back to work the next Monday.

June 2019 the other two aneurysms were treated (flow diversion) at the same time. Another one-nighter in NeuroICU, then back to work. No issues, no headaches, no complications. Back to normal, back to work. They have me taking Plavix for 6 mo post-surgery to avoid clotting, and that makes me bruise and bleed easily. Other than that, no problems.

I wish you well on your surgery and recovery! I understand the term “time bombs in my head” quite literally! Your healthcare team will give you their best; that’s what they do. Best to you, keeping you in my thoughts!

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As a survivor of a rupture I gotta tell you I was grinning ear to ear when I read that this Mom of 3 found hers a much better way.

Your hubby may very well understand the situation and be doing his best to hold it all together as it will do you no good to have his fear to deal with as well. It really is tough on our loved ones, I am glad you found us for support though.

Wishing you a speedy recovery with minimal deficits!

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Hi Nelly,

Let me first say, please breathe!! You only make things worse if you are stressed. You have got a lot of support here. Most of us have been through it or know someone who did.

The Good news, they found it early! The other good news, they have not ruptured. My annie also behind my right eye, did rupture. Recovery was slow, but I got through it. If I can offer you one piece of advice, please find away to de-stress, to accept life as it comes. Focus on your kids and husband, think of the good times and the new memories you will make when the surgery is complete!

Ok if your a praying woman, remember that prayers move mountains! Have faith that it will go well! I wish you a successful surgery, and a speedy recovery!
If you need some reading on how I got through it, please check out Only For A Season on amazon. I wrote about what I did to make it through my annie, and how I work with it every day since. I too had a coiling, and its been 10 years, soon you will also have your 10 year story.

All the best!

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Hi Nelly! I read your story, and I’m sorry you’re going through this! 3 years ago, I also had coils and stents installed right behind both eyes one annie was 7mm and the other was 5mm. One bled. Recovery for me is day to day and a lot had to change in my life to accommodate my new normal. You will get thru this! You are strong!

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Nelly, We all understand your fears. Are you a candidate for a pipeline procedure? I had one for my large misshapen annie behind my left eye in my carotid artery. It is less invasive as there is no cutting into the skull and they go through your artery from your thigh. Recovery is quicker and with less side effects. I had my procedure done in Ny Presbyterian hospital. Hope this helps.

Welcome to the community! I really enjoyed reading your account–it is good to hear of someone with such good results. My wife ruptured in 2011, also, and is doing well though not quite as well as you. Thanks for writing.

Thank u so much everyone for all your kind words and advice. I am doing my best to stay strong and positive and pray about it. I have been meditating and it seems to be helping with anxiety a bit. I have a lot of Faith in my surgical team at Lahey.
Ill do my best to keep everyone posted on my progres.
Thanks again :blush::blush:

Hi Nelly. It’s tough to wrap your head around isn’t it? Finding them is a blessing though. Indeed this will be a long wait for you. The good thing is that you have time to prepare. I’m wondering if you’re able to search for other things I’ve written on this site. I’ve spent some time responding to posts such as yours & have shared suggestions. I’ll limit my suggestions to a few things that I think are very important and also specific to you, on an emotional level because I understand how emotional this is. I’m a bit concerned about your husband’s reaction, although I do think that it may be that he’s confident you’ll be OK. He’s thinking positive and you’re scared to death. Different sides of the spectrum. I say I’m concerned because you are going to need support, and he may very well come around and be able to provide that. BUT, my advice to you at this point is to prepare to have help. You’ll need it for the day-to-day activities (Lord knows with a husband and 4 children!) following surgery and you’ll need emotional support in the coming weeks and following your procedure. Seek out your people, your friends, your family. Circle the wagons. Talk to those closest to you. Before and after.
I have a wonderful husband who has been loving and supportive, right by my side as I’ve struggled post surgery for 3+ years, but he was very quiet leading up to the surgery, almost nonchalant. I wanted my daughter here in NJ from Boston. He told her she didn’t need to come(??!), it was all going to be fine. I was devastated that she didn’t come and only now, 3 years later, have I been able to talk to her about it. With tears, she said she didn’t know I needed her. So you need to tell people what you need from them. The lesson from this for me was, don’t rely on anyone else to communicate your needs for you. No one can understand how you feel, they just can’t, unless you tell them & let them help you now. Please don’t minimize how you feel because it’s really scary & you’re completely normal to be afraid and worried. My children are grown but I too worried about how people would live without me.
I had conversations like “I want you to know that I love you in case I can’t say it later”, “you get my diamond earrings”, “I understand that if I’m drooling I can’t be the same friend but will you come visit me once in a while?”, “will you still love me or will you return me to my parents?!”. No joke.

You will need to be brave. Build your support system. Plan on having someone stay with you when you get home, your parents, siblings, friends. You can always send them home if you don’t need them. :wink: If you’re depressed, tell your doctor, and if they poo-poo you, tell another doctor. Prepare to take it easy on yourself. Your brain heals when resting. Don’t plan on jumping right back into your life, plan to take it easy as that will take the pressure off. Hey, if you hit the ground running then it’s all good, but put your safety net in place so that you won’t worry so much. Be kind to yourself. Do what brings you peace even if it isn’t at home, make time for it. Go to the beach, ride your bike, walk the dog, whatever it is, breathe and have faith.
Treat yourself to pretty pajamas!

My brain is tired now & you’re probably thinking “when is she going to stop!” so I am wrapping this up by wishing you calm, confidence and loving care. You’ve got this.

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