It’s always great to have your list of questions ready! Get your family and friends to add to it. Do not shake your head in agreement when you speak with any doctor, they think you understand them and move on quickly. If you don’t know, ask, the only stupid question is the one that wasn’t asked as I learned in grade school. When you call for the second opinion appointment you’ll sign a release of medical records so the doctor can get what they need. Make sure it covers the images and not just the Radiologist findings.
Whilst I learned to limit myself to 15 minutes a day pondering my rupture. I can spend a long time doing research on aneurysms that I don’t count for me
I had a 4 mm mid-basilar unruptured aneurysm repaired with coils and a stent 10 months ago. My neurosurgeon discussed all the risks and suggested I do have the coiling done because of the location of the aneurysm. If mine were to rupture, it would be harder to repair if I even made it to the hospital. He really didn’t give me the option watchful waiting in my situation. I didn’t get a second opinion but I think it’s a good idea. I also had no symptoms (no headaches, etc) but was diagnosed when I had an MRI done because of tinnitus. Both my ENT doc and neurosurgeon said the tinnitus is not related to the aneurysm and after the coiling I still have the tinnitus unfortunately. I was very anxious about the whole ordeal but ultimately I trusted my neurosurgeon. My angiogram in October showed the coils and stent has worked and I don’t have to be checked for another 18 months. Good luck to you.
@ccr-4
Having survived a ruptured brain aneurysm definitely puts everything in perspective. The most important thing in life is family and friends. You can imagine how emotional everyone was when I stood up and had a short talk as the mother of the groom at my son’s wedding reception, when I told them how happy I was to be able to share this moment with them, I said that some of you already know, but not everyone in this room knows why the wedding was postponed due to a family emergency. I said that I was the reason because of the brain bleed. Tears were rolling down the face of many of the guests, my son came running to me and sobbed like a child. My two other children and their families were emotional too. Yes, it has been a life changing experience
You wrote that not everyone has the luxury of having their aneurysm mended. This is so true.
My aneurysm was on the A1C, the internal carotid artery on my right side. If I remember correctly, it was 3,5 mm wide and 2,5 mm high. The artery was very torturous the neurosurgeon said, it had a shape like a corkscrew. The broad neck aneurysm made it hard for the coils to stay in place, that’s why he recommended it to be secured with a stent so he could put in more coils. The stent couldn’t be used in the first place, as it required a dual platelet medication, two different types of blood thinners.
I don’t know, and I haven’t asked if I would have been recommended a “wait and watch “ protocol with my aneurysm. I believe it has to do with the size, location and maybe other factors. But I didn’t had the luxury of knowing in advance, two weeks of an almost wiped out memory. My husband called my three grownup children when we were waiting for the helicopter to arrive and take me to the larger hospital for neurosurgery. I said goodbye to them, this is so heartbreaking to think of, of all the pain they had to endure……I don’t remember anything about these phone calls either……
This is my story and I hope your story will be much happier .
I hope that you can make a well informed decision about how to proceed.
All the best to you and yours
SharonD’s initial discovery of her BA closely resembles my own experience. My experience of tinnitus, early last year, prompted me to get tested by an audiologist, who subsequently encouraged me to see an ENT. The ENT then had me go through a MRI to discount the possibility of acoustic neuroma being the source. The MRI showed no evidence of acoustic neuroma, but it did reveal a 9mm unruptured intracranial aneurysm. The ENT then referred me to an Interventional NeuroRadiologist (INR) who ended up performing a stent-assisted coiling endovascular procedure. So in a way, the tinnitus was a mixed blessing because it led to the revelation of an intracranial condition that I would’ve been oblivious to.
What about the tinnitus? Since the endovascular procedure, my neurologist had me perform a videonystagmography (VNG) test which revealed a vestibular issue concerning the inner ear. He believes that the tinnitus may be related to that condition.
I haven’t had any memory issues that I attribute to the coiling procedure. And no new headaches (just my usual sinus headaches that I’ve had all my life off and on). One thing that happened that I had never had before was aura without migraine (my optometrist explained what it was when I went to see him later). It scared me because I had no idea what was happening. It first happened in the recovery room after the 6 month followup angiogram-twice. I told the nurse but she didn’t seem concerned and neither did the neuro team when I messaged them later. But that’s it. I feel no different after the coiling. The hardest thing for me was coming out of the anesthesia, but the next day before being released, I joked with the radiologist and asked if they really did anything to me because I felt great and continue to feel normal. I had a lot of anxiety making the decision about having the coils and stent placed because it’s not without risks, but the alternative of it rupturing would have been devastating because of its location. Even though I didn’t get a second opinion, I think it’s a good idea. Good luck to you.
Oct20 - thank you so much for sharing your story with me. So tragic at its start and now so heartwarming to be living and experiencing the joys of family. Your details with your children brought tears to my eyes as I think of my children. My whole life is centered around my family. You didn’t have a choice and I do. I try so hard to see the blessing in all things. The choice I have comes with a risk of rupture no matter which way I choose. That choice and fear of choosing the wrong way is causing anxiety. But reading your story - and other stories of ruptures in this foundation and other articles I’m finding etc are leading me to answers to prayers. Thank you again for sharing your story - it truly has helped
Thank you SharonD !!! So calming to read you can have the procedure without major side-effects. When mine was discovered via MRA I was referred to a local neuro radiologist - he performed an angiogram in December and told me that mine could go either way - he would be fine watching and waiting and just as fine treating - my choice. So my research went into overdrive and I found a highly rated vascular neurosurgeon doctor at the Mayo Clinic and went and saw him. He gave me the exact same diagnosis but also said that if I choose to watch and it grew at all then he would recommend treating. So they both left me with a choice that seems almost impossible to make. Reading stories of those that had ruptures and now reading that you can have the procedure without major side effects is a huge help. Still scary - but the thought of walking around and never knowing if or when it might rupture is scary too. I have a few follow up questions for the Mayo dr when he is back in the office next Monday - but pretty sure now I am going to get it treated by him and then just pray. Again thank you. If you think of it after a few months - since you are 10 months ahead of me and yours is basilar as well - let me know how you are doing - thank you !!
@ccr-4
I’m glad to hear that my story has helped you. Yes, the emotional burden has been heavy on my family but also on myself. I think of the rupture every single day! The only thing that is good is that it doesn’t create any anxiety anymore, there was a time after the rupture, when I was alone at home while my husband was working, if I felt any strange sensation in my body, my mind went almost into a panic mode “is this it” is this the time when I should die? I don’t react the same way anymore, which is a blessing. I forgot to mention that I too, sometimes had a visual disturbance in my outer left corner of my left eye . It started when I was in the ICU after having my stent, and it randomly showed up maybe during the following 1 1/2 years . My neurosurgeon said that it may be because of the stent, but it will probably go away over time, my eye doctor said something similar and neither of them was worried. I haven’t seen this flickering light since the summer of 2022.
You have to make the decision that is right for you. The surgery is called a “minimal invasive procedure “ but it still has its risks. Please let us know how everything goes
Please keep in touch also. We are the fortunate ones because the aneurysm was found before it ruptured. One more thing I’ll add to my story as to why I decided to have the coils and stent. My father died when he was 44 from an ruptured aneurysm. There might be a familial connection even though his family said he was hit in the head with a baseball bat when he was young. But my kids will be having screening MRIs to catch an aneurysm early (my daughter has had hers but my son’s doc won’t write a referral because he has no symptoms. So frustrating.)
SharonD - I just sent a text to all three of my children earlier today (all adults now) about getting testing. The Brain Foundation had this YouTube video I sent them - see link below - hopefully it works. If the link doesn’t work - it’s on YouTube and it’s called How to get a brain scan if brain aneurysm run in your family. Maybe do a search for it - it’s from the Brain Foundation. Maybe that will help your son. It’s so frustrating when there are doctors that just won’t listen.
I had surgery to apply a clip before my aneurysm burst. They found the aneurysm during a case of Bells Palsy. I lived with the aneurysm for seven years before the odds for surgery were more in my favor than it bursting. The doctor who invented the coil was the assisting surgeon. My surgery was in Arkansas and Dr. Ramos was my surgeon.
Surgery was in 2007. I have a few side effects due to the interruption and realignment of the neurotransmitters. I no longer have the ability to perspire, my thighs do not respond well so even though I can walk I have to use my arms to raise and lower myself into a chair. I experience minor problems with memory and word recall. All of these problems are manageable. I hope this helps. May God watch over you as he has me. Take care!
I appreciate all those that have provided their experiences, suggestions, and encouragement. I have decided to move forward with treatment and get my basilar tip aneurysm coiled through this WEB procedure. I did find out the actual size of the aneurysm is 4.5mm by 3.5mm. Although I was told the risk of rupture at this time was 1% or less, I was also told that if it grew at all it would need to be fixed. Two doctors told me that they would be just as comfortable waiting and watching as they would be to treat - the choice was mine. The thought of just waiting and watching seemed overwhelming and I think I would worry every day. Especially after reading stories on this site of those with aneurysms of similar and smaller sizes rupture. Any risk of rupture just doesn’t seem worth it at my age. Especially when it could be anywhere at any time. While I know there is a risk of rupture (also less than 1%) during the procedure to fix, it seems to me that at least that risk would be in a controlled situation with an experienced surgeon right there to immediately respond. The decision to watch and wait or fix has been extremely stressfull and full of so much anxiety and hours of research - but at the same time I realizing having the choice is a such a blessing when so many others did not have a choice. I’ve scheduled the procedure for February 29th. While I currently have few symptoms now, I do worry that fixing it will cause new or worse symptoms. I’m leaning on those experiences I’ve read on this site that have had minimal or short term symptoms post repair. I pray I’ve made the right decision with the right doctor. Again, thank you to everyone. I am so glad I found this site because I had no one to talk to with any experience and just getting a doctors view of the situation is not enough.
@ccr-4
We will be thinking of you before, during and after the procedure. I hope that everything goes well with no or minimal issues. I had the same thought about the possibility of a rupture during the surgery, then the neurosurgeon would already be there and taking care of the problem. I felt so relieved when I made my own decision to go ahead with the second surgery, but I was anxious too. I took daily walks in our neighborhood which eased my mind. The morning after the procedure my neurosurgeon said that he was pleased that I agreed to do the surgery, he said that it was the best thing to do, before other health problems arise with age. This was actually on my 66th birthday and he said that I could have chosen a different day, but I answered that this was the best birthday present I could get. The nurses gave me a cake before I went home.
Please keep talking to us. We are here for each other.
I am a year out from coils and a flow diverter for an unruptured 8mm near my opthalmic branch. They found mine because a couple years earlier they had incidentally found a splenic anuerysm and the doc monitoring that felt like we should check my brain. So glad we did. Mine was on the fence size wise for treating or watching and I lived with it for a year before deciding I no longer wanted that risk sitting in side my head. I did lots of reading during that time and another group was as helpful as this one, a facebook group called Unruptured Cerebral Aneurysm Support. Between the two groups I read enough to feel quite comfortable with my deicsion to treat it. I also found that between the two groups I could get answers to most of my questions. I too got visual migraines freqently after my surgery, and still get them once a week, but they are pretty mild, only last 5 minutes, and don’t stop me from doing anything. I also had some occurences of numbness down one arm and the first time it happened they had me zip in for some scans to make sure it wasn’t a stroke, which it was not. Happened on and off for a month, then stopped happening. But I was fully back to all activities by the third week after my surgery, I flew the second week after, and I really had no issues of any kind other than what I describe here. At my 6 month angiogram my aneurysm was fully occluded so at my one year check they were comfortable doing must an MRA. I did get a second opinion when I found this, and chose to have the second doctor do it, though the first one would have been great as well. I was just so revlieved after it was repaired to no longer have the lingering concern. And fyi, during that watch and wait year, my docs were even OK with me going scuba diving, which I did. So living a normal life was their recommendation during the watch period. Good luck making your decision!!
I have had a ruptured aneurysm and then a few years later an unruptured one showed up. Without hesitation, I chose repair. I think you made a great choice
