hi everyone it’s Sunday 11:02 a.m. and I barely slept. I have been going through hell since June of last year. I had a “routine” septoplasty done where the dr messed up and put a hole through my skull into my dura and I developed a csf leak and a meningocele. After finding this out and many drs later I had to focus on getting a good surgeon to repair it it all happened so fast . Surgery took place 4 weeks ago tell my dr my thunderckap headaches are less common but still there with migraines he sends me for an mra to check my interracial pressure and finds a 2mm Infebulum or aneurism. The nurse practitioner calls me to tell me that everything looks good except for this but it’s so small it’s probably nothing no sooner do I hang up do I get a call from a neurovascular office making appt for the 21 of this month . I’m baffled! I thought it was nothing that everything was ok. I feel like I don’t get clear answers and it doesn’t help that this whole thing has made me feel like I belong in a rubber room. I mean I went through brain surgery to fix a mistake my ent made and now what did she cause this too! I’m angry!!! I’m scared! I feel like every hour im here it might be my last now I think the idea of dying doesn’t scare me as much as all the other stufff that could go wrong with a rupture! At the same time people are like don’t jump the gun….,just wait…. Ummmmm I wish I could . I wish my heart wasn’t beating in my throat every second and the fear wasn’t so debilitating. I have been through so much I fought ovarian cancer , car accident that left me to learn how to walk and talk again other chronic sicknesses now this? What if I don’t have any fight left in me? Is this it? I am litterally afraid of drs now and I don’t trust any of them. I don’t really have a support group. Everytime I get a head pain I think ok this it… and the internet has so much stuff that seems to contradict eachother. I never did anything I wanted to cause I always had responsibilities either my own illnesses or parents or siblings and now I may never get to do anything I wanted. Please someone if your reading this and you know how I feel please write back I can really use a friend. I am not ready to leave this world and at the same time now I’m tooooo afraid to live it I’m just here like a peice of furniture in this house …just here…. Someone anyone please write back and please pray. Thanks g
Hello Godismystrength,
As I am new here but we can all share in the sentiment of pain, ongoing and unexpected issues with our similar lived experiences. Support is so important while the healing needs comfort through others. You have been through so much and yet you are here allowing your heart to spill out. Believe it or not, you are very courageous and loved in this group.
From a fellow ruptured aneurysm survivor, hang in there, keep going, continue on your journey with faith and strength!
Hi Ammena thankyou so much for responding. It’s really been a rough road and I am so sorry you went through that as well. I sound braver than I am. It’s so frustrating when even my neurosurgeon doesn’t seem to care and his nurses treat me like a crazy. Like when I call there’s always a problem. I wish I knew how to handle this anxiety. I’m going to call a psychiatrist I think because this anxiety. Did u develop ptsd or anxiety? Do u have a huge support system? I would really like to keep talking. If that’s ok? Hope to hear from u. G
I’m glad to hear that you know that you can still reach out. You sound like you are beyond brave, it takes a lot of grit and strength to get through issues and have certainly showed that you have it. Despite the circumstances, think about the little things, like the warm sun, sound of a river and reflect on all the amazing things around us. Our hardships make us stronger (eventually) from surgeries to doctor appointments and the ability to be here, still be here, we have a purpose and a beautiful 2nd chance.
All the best,
Ameenah
Hi @Godismystrength -
We are so glad to have you here with us! Thank you for reaching out, and you know have your BA family to be here for you! Like @Ameena145, I am so sorry that all you have been through - but it tells me what a strong soul you are, I know you have it within you!!!
I had a different experience than you in that I ruptured, as I did not know about my aneurysm. After it ruptured, I was left with a 2 mm aneurysm. My neuroradiologist monitored it for awhile, and eventually decided to treat it via a procedure which cut off its blood flow. I also had a couple of related problems to my aneurysm - namely hydrocephalus and meningitis. I mention this because part of my journey, I have had to visit some neuropsychiatrists for testing, etc. Based on my experience as a patient (i.e., NOT a medical opinion), those of us with brain injuries can often face depression, anxiety, etc. [See article from Brain Injury Canada if interested in an explanation.] I think it is a very wise move to find (neuro-) psychiatrist/psychologist who can help you!!!
My first neuropsych really recommended meditation/mindfulness to me. From that journey, I learned about Humin (f/k/a Health Minds Innovation) which is an award-winning, free app. I really like that it is an East-meets-West app, so it has lessons about how our brain works intertwined with mindfulness practices. As you will note, it also helps some people with stress and anxiety relief, so it may be one you want to try. Of course, there are all the other popular apps out there, so if one doesn’t work for you, feel free to try another.
As another example, another organization is called Love Your Brain. They primarily focus on those with Traumatic Brain Injury v. those of us with Acquired Brain Injuries, but from my limited experience, they have never kicked me out for being a “cousin” instead of a direct descendant. They seem to offer a variety of programs - all for free to those with a brain injury -so you may want to look around there too to see if something appeals.
It is hard to research information about aneurysms on the Internet, and this is partly due to a very good reason! The miracles of medical science are beginning to figure out how to deal with aneurysms, so information that is five or ten years old is dated - hence why it is conflicting!
Finally, you may be interested in this 2023 webinar hosted by our own BAF titled “Living with a Brain Aneurysm: Struggles of Watching and Waiting.”. This includes some medical professionals so it helps gives some insight into what they are thinking that may be of help to you.
I completely agree with @Ameena145 - please continue to reach out and vent, let us know how you are doing, etc. That is why we are here!
Sending you good thoughts!!
Fin Whale Fan 
Welcome again G! It sounds as if you’ve been through a lot recently. For our members who don’t know what a septoplasty is like me, here’s a link Septoplasty - Mayo Clinic
For some unbeknownst reason I must have deleted what I originally typed, so apologies for being late. It sounds like the doc wants to get a more specialized opinion by sending you to another specialist. It’s probably due to the findings and the radiologist not being sure exactly what they’re seeing. In my experience, radiologists always want me to get another opinion on something they see. I think of it not only as giving me hopefully a better answer, but they’re also covering their hind ends. I’ve had a couple of hiccups with Radiologists over the years on my MRI/As but I know my Neurosurgeon will read them as well. When I first met her she was teaching that class to the Radiology interns so I figure she knows what she sees.
Although you say you’re not as strong as you portray, I’m going to differ in that opinion. Look at everything you have been through and got to this side! That takes incredible strength. There’s no lack of strength in asking for help, it makes us stronger. We are human and sometimes we need a helping hand, but we do need to have the strength to ask for it! We are here please don’t forget that, just covering the world time zones so be patient.
Hi wow your story is powerful and thanks so much for responding. How have you been doing? It’s definitely scary and I feel like it makes us reevaluate our lives like there really is no such thing as waiting for tomorrow . The fact that you went through hydrocephalus and meningitis and a ruptured anyurism and your giving me guidance and kind words shows me the character and strength You have !!! It’s comforting to know that there are still good people in this world . The whole point of closing the cfs leak I had was to prevent me from getting meningitis. I am still in aw that you went through all that you are truly amazing and your strength is admirable!!! I hope u keep in touch. Do u like whales? Ttys G keep me posted on your health!
Awww, thanks for warming the cockles of my heart! 
Yes, it was quite a journey post-rupture for a bit - but I know I am not the only one here in this forum who went through that similar experience, and many others have had similar pieces or their own crazy journey. You are 100% right that it taught me some different priorities, and I definitely have learned not to wait for tomorrow when there are things I want to do (DEFINITELY something I did pre-rupture - e.g., ahhh, I will go to that show later on - no worries… and then the opportunities would pass me by …
)
My health is pretty good after all I have been through. Of course, I haven’t returned to 100% but (anecdotally) my neurologist and I throw around a 97-98% back to me. I was able to go back to work in late 2024, but my big issue - as many of face around here having had a brain injury - is balancing the fatigue that goes along with an injury. I can no longer do in a straight stretch all the things I used to do, but that is probably a good thing as I prioritize what - and who - is important in my life. The rupture forced me to do a lot of “house cleaning,” and I am grateful for that; although it is sad that I don’t have the number of friends that I do, the ones that I do were there for me. 100%. (Family was 1,000,000,000% there for me, and it has made us all that much closer & stronger!)
Whale watching is definitely one of my favorite things - so much so that I literally would go on vacation and spend days whale watching - so much fun!
There are DEFINITELY a lot of good people still left in this world … and the good thing being part of the BA/AVM family is that you just found a whole bunch of them right in this platform.
Work break is over - back to the routine. Have a beautiful evening!!!
Fin Whale Fan
Hi I was having a meltdown and then got an email from BAF with your post. I can relate to your fears and anxiety. I went for a MRI of my sinuses 2 years ago and it was okay but they found i had a 2mm anuerysm on my right internal carotid artery. I saw a neurosurgeon who basically told me i was going to die of i didn’t get id fixed right away. I didn’t have any peace about him so i got a second opinion. The second surgeon told me that small aneurysms rarely rupture, they are more concerned about any 5mm or larger. He said i could wait 6 months to see if any change so i did but it got bigger so i had a WEB device put in. Its like a mesh basket that conforms to the shape of the aneurysm and no stent is needed. So far no problems, I follow up every year with an MRA. I had to get a cervical fusion in 2022 cause my spinal cord was compressed in three spots by herniated discs and starting to cut off blood supply. I went to specialists for an entire year before that cause i was having weird symptoms but no one could figure out what was wrong! It was my new chiropractor who sent me for an MRI and found out what was wrong. I followed up with my neurosurgery four months to check the fusion and all was great until i went for my last follow-up and xray showed the bottom screws on both sides were broken! I never felt anything. Titanium isn’t supposed to break. I had to get the fusion redone and the fear and anxiety was through the roof and i was on the verge of panic attacks many times. I’m now fused from C2-T3. Four months later i found out i had the aneurysm and more anxiety followed. Last year i started having leg pain so had MRI of back cause i have five herniated discs in my lower back. i fell off a horse when i was younger and my whole spine is messed up. Found out the pain was coming from my hip which has severe osteoarthritis so ortho doc said i needed a hip replacement! Couldn’t do another surgery after just having the aneurysm fixed so i got a cortisone shot instead and it lasted all year till a few months ago when the pain started again in both legs. Just had another xray done and hip is now so degenerated that it’s flattening out the ball of the hip and starting to cut off blood supply to bone! So i’ll be having hip replacement in a few months after i retire in March. I’m writing this as i sit in my chiropractors office cause now the last few weeks i’ve been getting terrible burning pain and numbness in my hand and i have to see another neurosurgeon tomorrow to see if it has anything to do with my neck surgery! It’s a never ending nightmare. I’ve learned that the only way to not lose your mind is not to focus on what you think may or may not happen. Take it one day at a time. And it’s ok to have a good cry. No one can understand what you’re going through except those who have had similar experiences so feel free to reach out anytime. I’m praying for you! Like your name says God is my strength and if it wasn’t for Him I’d be on the looney bin right now. You’ll be fine!
Hi Diane, I am so glad you wrote to me I am so sorry that you are going through all of this. You are definitely strong amd courageous. I want to thankyou for sharing your story with me. I slept today for the first time but woke up 4 hrs later in a panic and dread just spilled over me and then I saw that you emailed and reading your story calmed me down. I think my biggest fear is craniotomy and the risk that go with it. I know I jump to worse case scenario but after what the a so called medical professional did to me I have seen to just see the worst in everything. I am so angry that she screwed up knew she screwed up and left me basically to die and if it wasn’t for me searching and pushing drs to listen they would have never have seem that she put a hole in my dura. I see her on Facebook and Instagram showing off her new baby and all the fun things she does when she has changed my life forever and doesn’t even care. She has lawsuits against her because apparently I am not the only person she has done this too. I thought drs were supposed to care. I was very wrong. I have been ill my whole life and have had MRA in the past as well as ct scans andMRI and never did they see anything but after she puts a hole in my brain I have one. I am trying not to think about her because I am religious abd I know that if I let anger sit in my heart it will consume me but it’s a battle. I definitely now see how little things that I thought were so important really aren’t and I should have been grateful from the start for every little thing I had because now I feel like I can lose all of it any second. You have been through so much how do you cope ? Do you ever get angry? I always go back to God because It is He who grounds me otherwise I’m lost. The whole thought of being awake for a cerebral angiogram scares the heck out of me and honestly that fear is enough to stop me from even trying to move forward. I am confused is that the only test and why do I have to be awake? I know I’m ranting but my heart is heavy. Did you have a cerebral angiogram? Were u awake? My heart goes out to you you have gone through so much and your empathy is refreshing. I am sorry that your going through so much. What are some things you do to try not to think about it? I hope your resting Dianne and that your able to sleep tonight and your pain subsides. In my thought and prayers ! Please keep in touch. G
Hi I’m glad you wrote back. I think it’s great that you went back to work the vertigo and fatigue def suck! I am so sorry. But your right self care is important and I to have learned who to keep in my world and who to keep out. I don’t have a lot of friends I lost a lot when I had to battle ovarian cancer. I do have two good friends and I’m happy with that. I feel like good friends are hard to find so when you do find one or two you truly are blessed. I have my family and this has definitely brought us closer but some family members had to be cut out because the stress and problems they gave me litterally was making me worse and that’s hard to do especially when you love them but I really have to be selfish and look after and protect me somthing I never really did always putting people ahead of me now I realize what I should have realized from the beginning. I am in the process of putting new self care practices into play and learning to enjoy the littlest thing. I love whales too. I frequently listen to them to fall asleep or goto the aquarium to see them they don’t have them here anymore so I have to watch online or you tube but they always calm me. I hope this email finds you in good spirits friend and I hope your resting. Keep in touch ! Reach out when ever you like ! I have some questions like what did you do to repair your anyerism? Did u have a cerebral angiogram? How often do you monitor it? How did u find a good dr team.(mine kinda sucks) Do u experience positional headaches? Hope to hear from you! Talk soon! G
Great questions re repair of aneurysm!
Immediately post rupture, I had 3 coils placed, and then I went through all of the aforementioned stuff. Throughout though, I would periodically have CT scans, MRIs to check on how my remaining aneurysm was doing. Was it stable? Was it growing, etc.? Seems like I had an appointment with my neuroradiologist around every 4-6 months or so.
Coils can compact after some time, so - in my case - he installed a pipeline flow diverter under the aneurysm (basically a mesh wire tube). Cells then grow over the mesh, and basically cut off the blood flow to the aneurysm - hence stopping it - but officially calling it occluded. I had a small-ish aneurysm so it took about 3 months or so for that to happen.
And, yes, I have had many a cerebral angiogram! I understand it to be considered the “gold standard” since that is how they can get to the aneurysm and do whatever they need to do (install a stent, determine if it is occluded, etc.). Angiograms aren’t so bad: from my experience I have had angiograms when I don’t remember a thing and others where I felt wide awake the whole time - I am suspicious that it just depends on what cocktail the anesthesiologist gives me that day!
In terms of finding my medical team, it was very situational as they are associated with my closest hospital (albeit that group is about 40 miles away or so). If you are not comfortable with your medical team, then you may want to consider getting a second opinion. We do have a posting with medical recommendations, and I noticed that there is one in NY (not sure if you are upstate or not).
That being said, I have a feeling you can get second opinions virtually as another option.
My aneurysm was declared occluded not-even a year ago, so I am in a bit of a break for another few months to go back and check and see if any additional ones have grown.
Finally, I don’t really get positional headaches. Because of the shunt inside my brain (helps with the hydrocephalus) I do feel things when I lean/bend quickly things get a little out of whack. After a moment or two, everything seems to settle back down into place though.
… and that’s it from me. Let us know what other questions you have and how we can help!
Fin Whale Fan
Hi Fin, I am laying in bed with a headache feeling sorry for myself. I live in NY and am looking for a team I feel comfortable with it seems like every Dr I think is good has lawsuits against them. I mean is that to be expected? Maybe one ok but more then 3 is scary. I am starting to feel that no one understands me except the people here on this forum. You certainly have been through a lot and you’re a true survivor!! I keep closing my eyes picturing myself whale watching ….sigh…..I feel like I’m dreaming and at any time I will wake up. So have you been ok for a bit? I hear what your saying about the angiograms but honestly I think I have ptsd because of what happened with that ent! It’s one of those days my kitty is cuddled with me and it looks like rain. The silence is deafening and comforting at the same time. My psychiatrist gave me somthing to calm down maybe IWill take 1/2 in a bit since I’m really anxious. I am preparing for the worse scenario. As that’s my only way to feel like I have some sort of controls. I am also trying to keep busy. I wrote down what you had done so I could speak to my neurosurgeon about it when and if the time comes. I’m going to attempt to play some computer games . Thanks for responding hope your well today ! Sending you positivity !!! —g
Hello
I have been reading your posts and I am sorry to hear about your medical and mental condition. My aneurysm ruptured 5 1/2 years ago, you can read about it in my profile. When I had my angiogram to check out the stent, I have to admit that I was anxious but I knew that I was in safe hands. I was told that I would be in a twilight state and that scared me. We are all different, but I will tell you how it went. I was waiting in the pre op room and the anesthesiologist showed up , the anesthesia nurse and last but not least my neurosurgeon. The anesthesia folks told me that they will give me intravenous meds to take the anxiety out. I got the meds and they wheeled me in to the operating room. They told me what they were going to do so I was prepared. I must say that they have very good and effective drugs 
I was totally relaxed but I was babbling and joking with the anesthesia people that stood by my head. I was told to stop talking and hold my breath four times when the neurosurgeon wanted pictures. I felt some discomfort when he injected the dye in the artery that had ruptured, but that lasted only a few seconds. He told me not to worry. Other than that it wasn’t as bad as I thought. To lie flat in the bed for four hours afterwards was almost the worst thing.
My advice is; wear soft and comfortable clothes, type jogging pants and a sweater. No jeans because it will be uncomfortable if they use your groin for the angiogram. Have someone take you home and stay with you for 24 hours. Prepare some food, have ready meals in the fridge and freezer and stock up your pantry so you don’t have to go grocery shopping the first days. Just relax when you get home, follow their instructions when and how to start moving and notify them if something doesn’t feel right. Have something to read or watch Netflix.
I wish you all the best .
Hi! Thanks for writing me! I am so so sorry you went thought that! It’s so frustrating because I really don’t have an answer rn. And some health professionals seem to think they are God especially here in the city. I am squeamish when they take my blood (mind you I have tattoos) so the thought of a tube going alll the way up to my brain seems soooooo invasive and I feel like my heart will just give out! I don’t do well with anesthesia it’s the scariest thought and I have been through some scary stuff! Honestly I think what upsets me the most is I have spent my life taking care of others (sick family, parents) and I always thought I’d be able to do stuff one day …..now just with csf leak repair I can’t do a majority of the things I loved to do. My family has a hard time with stuff like this we have lost a lot of family and our huge family is now quite small and they seem like they would rather stick thier head in the sand then understand that I feel cheated and scared and angry. I have become more reclusive but ironically things that never made me happy make me so happy rn. Like a good show or a nice cup of tea. I wasted so many years being angry for everything I went through I never realized how much I actually had. I don’t want to be that person again. Were you left with any complication or side effects from the rupture? I did have thunderclap headaches but I thought it was the cfs leak before the repair .aPost repair positional headaches. I don’t know what the future holds for me and sometimes I’m totally fine like I’m not thinking about and then I remember and my heart starts to pound! Life isn’t easy and I had to cut out some really toxic people because deep down I knew even before the leak they were slowly killing me like I felt it! That hasn’t been easy and I sure learned boundaries now, I feel like I have become more of a recluse if I said that forgive me still some brain fog. I sometimes wonder if I would have been better off them not finding it since it was an accidental finding. I gess my next biggest fear besides a rupture is a craniotomy. I know they have other options so I don’t know and am hoping a craniotomy is a last resort. I hope your doing well now. I hope you have a great night please stay in touch….g
I didn’t feel a thing when the neurosurgeon went through my artery into the brain, the only thing I felt was that he poked a little in my groin, but it didn’t hurt. I remember that I was thinking that this is really strange, I don’t feel the catheter and now it’s in my brain 
The anesthesia people will make sure that you are comfortable, they will most likely ask you how you feel during the procedure. The neurosurgeon would like you to be still at the table but enough awake so you can hold your breath when asked to during the angiogram. The staff knows that we are anxious for the procedure, make sure that you tell them how you feel. I can understand your concerns after everything you’ve been through. As someone mentioned, you can always try to get a second opinion. About my own recovery from the rupture, I recovered very well physically. I was extremely tired the first months and needed to take naps during the day but it got better during the first year. I’m almost back to my old self, I don’t need to sleep as much anymore , I try my best to exercise, going for walks and riding on my stationary bike if the weather is bad. I like to knit and paint watercolors. Do you have a hobby that you enjoy doing? I’m retired so I didn’t have to worry to go back to work, but I sometimes give watercolor classes so I try to keep myself busy. My mental recovery took longer time than the physical recovery. I need to process what happened, this forum helped me a lot. I hope that you can take small steps forward so you can put all this misery behind you. It’s good that you have found us. This is a place where you can vent.
Take care and good night.
Hi G, I’m glad you were able to sleep a little. I’m sorry you’re going through all this. I am definitely not strong or courageous. I like to be in control but i’m slowly learning that I can’t be and the only way to have peace is to totally surrender to Gods plan even though that plan doesn’t make sense to us. I’ve been angry at God for all these non-stop problems that never seen to end these last five years knowing He can do anything to heal me but His ways are different than ours and ultimately He does know what is best for us. Today i saw another neurosurgeon for the terrible burning and pain in my hand. He doesn’t think it’s coming from my neck although on the MRI i had done he said it’s hard to see the nerves in my neck because of all the hardware in the fusion! He thinks it may be carpal tunnel so now i have to see a neurologist for a nerve test! Of course its my right hand and im right handed so i said to God are You kidding me? What else can go wrong??? Never ending mess continues. But God understands how we feel and is always available to help you Sometimes i’m so overwhelmed all i can do is sit in His presence and not say a word. He will get you through it all 
.
I did have a cerebral angiogram while awake so the surgeon could see what the aneurysm looked like. It was ok doing it. They went thru my wrist and just had a little discomfort in my arm when it was over. For the second angiogram when they put in the WEB device i was put out, they went thru the groin artery since it was bigger and was only in the hospital overnight. My neurosurgeon is Thomas Link in Great Neck, NY. He’s very down to earth.
Hey Diane! Please start a new topic on your nerve study if you’d like. Some of us have had them,
Aha! You are in “the city!!”
As mentioned in a prior post, my beloved medical team is in Philadelphia, so that is where my care is driven out of.
However, since I am torn between two locations, in my mind (with zero experience - I never met the guy, although one time I fantasized I saw him in NYC 
), I have a back-up doctor should something disastrous happen and I couldn’t make it to Philly.
As mentioned in this post, Dr. Nelson became my go-to, and he gets bonus points for having invented my flow diverter which is what occluded my aneurysm.
Honestly, when dealing with something as complex and challenging as the brain, I would think that 3 lawsuits isn’t that bad. These people do multiple surgeries a day then multiply that over weeks, months and years! 3 seems like a small number in the grand scheme of things, while acknowledging that - of course - you don’t want hundreds either
Curling up with cats on a chilly day is the perfect way to spend a day! Focus on him/her. I also suggest some box breathing …if Navy SEALS use it for stressful situations, than it is good enough for me! [Repeat as often as needed.]
Sending you all good today!!
Fin Whale Fan
Good morning friend!!! Hope you’re feeling ok! Yes I am in the city! Are u referring to Dr.Nelson from my Langone in the city? I am currently seeing someone from nyu Langone but not happy because no one ever lets me talk to him and there’s always like a month wait , Today makes 1 mo since my brain surgery and honestly I feel kinda happy, like I made it 1 mo since that horrible horrible ordeal! Needless to say the 21 will be hard but I am trying not to think about that today. Today is my day. I’m not going to let anyone mess it up. How are you feeling? It’s hard for me to go back to your message since I’m typing from my phone are u currently ok? I will watch the video you sent I will try anything. A lot of people are saying that the brain angiogram isn’t so bad but 
I’m still chicken! Sending positivity your way…g