My Annie Story

This week is my 1 year anniversary from my clipping everything is going great I have some scar pain and some laughing issues when I should not be laughing :disappointed: But life is awesome and I’m feeling great​:smile::heart:

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My aneurysm was discovered by accident by a dear dear friend of mine who is an ENT doc. I’m a 72 year old female and I have been a walker for 40 years. Thank God I’ve always been very healthy. I walked 4 miles a day in about an hour and five minutes. I did that for many years 5 to 6 days a week. Last March I noticed when I was walking that I wasn’t walking in a straight line. When I would walk with my daughter finally she said to me, mom I love you but you keep running into me. Then to add to that I noticed that my hearing in my left ear was progressively getting worse and worse. I called my good friend who is the ENT doc and he asked if I had a recent MRI. I told him I had one from 3 years ago that was taken because I’ve been getting migraines for over 25 years. I was seeing a neurologist for my migraines. He ordered an MRI to make sure I didn’t have a tumor. He said the MRI came back just fine. I told my ENT friend that was the only MRI that I had. He asked to see it and when he looked at it he discovered an aneurysm that nobody else had caught. So apparently I was walking around with that for 3 years. Now granted it was relatively small on the MRI from three years ago. He told me the area where I had the aneurysm was pressing against my nerves for balance and hearing! I was overjoyed to find out there was an actual reason for what was going on with me. My friend ordered another MRI and it came back that I now had a large aneurysm. Being a doctor himself, he did the research for me and found an amazing neurologist in the Minneapolis area. The neurologist recommended the coil method. I went through that surgery and after 2 1/2 hours they realized that wasn’t going to work because the aneurysm was so deep in my left side. They stopped the surgery. I was devastated when I came out of the sedation. But they explained to me that it would’ve been more dangerous to continue. It was then decided that I needed a full craniotomy. I had that on November 28. So thankfully they were able to cut off the blood supply to my large aneurysm. It has been three months since my surgery and I’ve been experiencing what I thought was lightheadedness so they ordered another MRI. Thankfully that came back showing that the aneurysm has clotted. I am now completely deaf in my left ear and my balance is still “off”. Is there anyone out there that has had a similar situation? My neurologist and my ENT friend have both said they think there’s a good possibility I could get some of my hearing back and my balance issues will improve. I would sincerely love to hear from anybody that could address this issue. Obviously I am incredibly thankful that the aneurysm was found and know it could’ve been so much worse. As I said I just want to see if anyone else has experienced this type of thing. Thank you so much for any help I can get!!

I was knocked down in the street, and subsequent CT scan for for a broken nose also showed a large aneurysm, 13mm. I am 84 years old with COPD on oxygen 24/7 but otherwise healthy and active. Initially, the surgeon wanted to insert intervascular coils, but a contrast scan showed an aneurysm so embedded in the Circle of Willis that he thinks an operation would likely do more harm than good. He tell me I have of 36% chance of the aneurysm bursting in the next ten years (my family is long lived). I have accepted his judgment, but I feel greatly uneasy walking around with a time bomb in my head. Has anyone here in a similar situation?

Hi Everyone,
I was diagnosed with a brain aneurysm that is 2.88 mm in size. The doctor that I saw is fairly young well younger then I am and well I am 41. I know she went through lots of schooling but anyway I felt like she didn’t even look at all my scans. Anyway my father died at 56 years of age from a massive stroke and my uncle had a ruptured aneurysm at 36 he is in his 60s now and doing well. She wants me to monitor it. Check back in 6 months. How do you just wait? She also says that it has to be a direct relative to count as two so if it was a sister or brother or mother then they would operate. I am having a hard time not thinking about it all the time. I am going for a 2nd opinion but I still feel so un easy. I have been getting headaches in the back of my head on the left side where your skull meets the neck and then on the top of my left eye going all the way back. My doctor said it is unrelated? I am so confused. I am tired all the time and well just looking to see what others experience…

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Iam 6 months out.2 BA’s right side, craintomy, clipping and also have scar pain.I have another surgery to go.1 BA’s on left side same surgery.Thank you for sharing, sorry you have pain I do know how it can be problem.Better days to come.

Iam so sorry it can be so stressful.I think always good to have second opinion.I had 4 Brain aneurysms ,2 mil. For 8 years they didn’t move every year would have scan.Then 3 years ago they started to grow.6 months ago had right side 2 BA’s clipping.Before surgery went to get 2 opinions Stanford Hospital& UCLA is were I had surgery.My heart Really goes out to you.But what your feeling is normal.Its hard to explain to others how your feeling.Iam new to this community but there are so many nice people willing to help and they know a lot.Will be wishing and praying wisdom.

My aneurysms were found 10 years ago.Having Ct-Scan for something different.I know people live with them whole life and never know.Mine didn’t grow for 8 years.Then 3 years ago all 4 grew.I had Brain Surgery 6 months ago.I think that Doctor sound confident this is best for you.It is hard not to worry.But I think One day at time works best for me.Not saying I can always do.Thank you for sharing your story. Strong together we can be.

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Good morning everyone.

I am 2.5 years post-op from a DACA aneurysm clipping. The first months/year after surgery was a little rough. I had a seizure waking up and have had seizures on and off since. The medication so far, is helping. I cannot drive for 90 days after an event as it’s a State law here in AZ. I’m curious to know if anyone coming out of surgery has experienced electrical shock sensations in the head? If I move my head too quick or fall asleep on my right side, it’s horrible I reported this to the neurosurgeon post-op and was more or less dismissed as a healing phase). The shocks go from my head to my arms and makes me so nauseous. I have an appt. with the epilepsy specialist from Barrow tomorrow and am curious what their take is. My skull has yet to heal fully and it’s been over two years. I’m not sure what, if anything, that means. One a side note, I contracted COVID and have since been fully vaccinated.
I pray everyone is doing well and are looking forward to Spring. Be well and stay safe!

I was told the same regarding a 3 mm aneurysm. I immediately made an appointment for a 2nd opinion. I trusted my gut and I thank God everyday that I did. 3 months later when I had the clipping surgery, the walls were ready to burst. I was already terrified and the thought of a wait and see approach was not good for me emotionally. I say go with your heart and what you think is right for you.

I was misdiagnosed for 1 year. I was told my dizziness and headaches were from stress, hormones, or anxiety. I was put on numerous medications for depression, anxiety, and stress. They all made me sick and did not help. I felt like I was going crazy. No one would listen. Finally, an ENT sent me for an MRI and they were found. If I would not have kept pushing the doctors I feel I would be dead now. Unfortunately, I had a wide neck aneurysm that had no treatment at that time. I waited for 4 years for treatment. Scared every day of my life. Finally, in 2012 I had a 16mm aneurysm but still, have a 3mm one. They tell me the risk of rupture is small, but I,m still concerned about whether to have it stented also.

Hello, My story is I had a headache so bad I was throwing up so I went to Emergency Room. No labs no test. I was sent home. I remember waking up with a worse headache. The emergency room informed me this time that my carotid artery had dissected and I was on medicine to stop the strokes.5 days later I had angioplasty stent replacement (2 stents) a day later I was sent home. Primary doctor didn’t do anything. She didn’t do my surgery and told me to go see who did. Fast forward to now. I’m still finding people in medical professions To help me. I have a lot of trauma. My body had a hard time with surgery. I’ve had a lot of physical therapy. I believe strengthening my muscles yes all of them is my key to success. PTSD is overwhelming. My body is tight to protect my neck and head. I am still learning to relax. Anxiety is not nice. I have received occipital nerve blocking shots. This time it didn’t work as well as the first. I remain hopeful because I am to stubborn to give up.

I was in a car accident in late August 2016. I had an awful ringing in my ears afterwards so I went to an audiologist. He couldn’t find any damage so he ordered a CT scan which caused some concern so we followed up with an MRI which showed a 10mm aneurysm as well as a tumor at the back of my brain. I went to a neurosurgeon who recommended either a “coiling” or clipping. I can’t say I was really upset or concerned about myself. My Mom died the following week, so I asked the surgeon if we could postpone the surgery, which we did. The doctor said I may have some short-term memory loss for a few weeks, but it has been 5 years and my memory is still “spotty”. I am very frustrated because there is no remedy for this and it causes me to not remember people I have recently met. I feel depressed and alone and nobody understands.

@Zaplady you’re not alone. Many of us have difficulties. Someone is always here to give a helping hand which is one of the fantastic things about our support group. I’m glad to see you’ve started a new topic, good for you!

All the best,
Moltroub

Moltroub, Thank you for your kind words. This is the kind of support I’ve been looking for and I can’t tell you how much I appreciate the response.

Zap

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I still have spotty memory issues since my surgery in 2012. They tell me everything is fine anatomically, but no one can help with the memory issues or explain why I have them. They are random… I can forget entire conversations. It’s very hard on the family as well. I recently found out my other 2mm anuerysm has started to grow. It is always a journey and just know this site with help you when you feel lost and afraid of the life ahead of you.

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In Feb of 2021 I learned I had 2 aneurysms, a 4.9mm right ophthalmic artery aneurysm and an extracranial aneurysm of no concern. One surgeon advocated for the watch and wait approach; two others were adamant that further studies were warranted. All agreed that if treated, flow diversion was the best option. I chose a surgeon and a subsequent angiogram revealed it to be 6.3mm and irregularly shaped. Surgery was scheduled within a month.

Due to tortuosity the device would not remain open and in place. I had read in advance about this happening to some people who were brought back out without treatment, requiring later attempts or clipping. But the condition of my arteries wasn’t good. It began to bulge during surgery, and the extracranial aneurysm ruptured so he persisted for 7 ½ hrs and I finally emerged with 2 overlapping stents. Adding to the drama, I developed a clot during surgery which was treated, but woke up with no feeling on my left side. After 3 days in the ICU I began regaining limited movement and was discharged.

I felt lucky to be alive and whenever I got discouraged, I read the notes from my procedure. Despite the clinical descriptions, it was evident that many people gave everything they had to getting me out of the room in stable condition. If they could work that hard for me, physical therapy was the least I could do for myself. I kept my focus on recovery and prepared for my 6-month follow up.

But that led to a new discovery–my aneurysm failed to collapse and had morphed into a new configuration dubbed a collar sign. I went off the blood thinner and waited 6 more months in the hopes the channel feeding the aneurysm would close. But 6 months later it was still there. We went forward with surgery #2 to place another stent to try to stop the flow. This time I woke up fine, spent a night in the ICU, and left fully functioning.

I’m now halfway through the next 6-month cycle to see what my aneurysm is doing. So far it refuses to go down without a fight. Did it finally resolve or will the next visit lead to another new twist in my weird new reality? Time will tell.

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Hi Judy.
Welcome. I haven’t been on the site in a while. To be honest you are the first person with the same kind of aneurysm I have ( left ophthalmic artery). My son also had one and had surgery at age 27. Very frightening but so far has had excellent results. I am in wait and see mode. I’ve only had MRI/MRA to check mine. Same thing again this year but as I’ve aged my health has changed so I am always interested in learning what others are doing to take care of themselves during such a difficult period. I will be hoping and :pray:t4:that this last procedure will effectively take care of all your past problems. Take good care. Keep me informed. Sending positive vibes your way.
Sincerely,
Lyd

Hi Lyd,

Sorry to hear we’re in the same club! I’m glad yours was found and is being followed. I think if mine had been discovered sooner and monitored regularly, it likely would have gone more smoothly. I would have still had the tortuosity issues because that’s simply my anatomy, but my arteries would have been in better shape. I had been under high stress for several years and my blood pressure was all over the place (tough to medicate because I also experienced huge drops). Of course I knew that wasn’t good but I didn’t know I had something else so significant to fear. Needless to say I have drastically changed my lifestyle now.

I’m very glad yours was detected, as well as your sons. I see you’re up in Woodbridge - I lived in the DC Metro area for many years. You have access to great healthcare up there, so I hope you always feel like you’re in competent hands. That’s always a comfort.

Judi

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Hi There. I’m really glad to hear you are feeling better. I hope you continue to heal and eventually won’t have to worry as much. I was grateful that you shared your story. I was told that having aneurysm in the ophthalmic artery is very tricky to operate on and had never seen anything posted about it. Im glad they found your Annie and were able to find perform the surgery necessary even if it was a bit tricky and I’m sure a very stressful experience for you. I know for me the aging process has not helped and I’ve been reminded by my children it’s time to care for myself first. I’m trying my best to stay physically strong( :roll_eyes::grin:). Anyway Take care. Keep me updated.
Sincerely,
Lyd