erhaps, I am just sensitive. I can admit that. And most pd the time I do not think about my little friend ( I named him blobbo) because he ( it) is small and probably will not do anything in my lifetime. Probably. But I am not a fortune teller ( my ball is in the shop), so who knows? But this is not the point necessarily of my irritation,
Recently, a family member of mine got on this health kick ( which is good) and started talking about that “little yellow magic pill,” which have heard about. However, it got a little out of control when she said, " Remember when you thought you had that thunderclap? You thought you some sort of a brain thing but you didn’t?" Um…1) it was a thunderclap and 2) I do have one. She proceeds to tell me that because I am overweight that is why I got the aneurysm. ( according to Dr. Internet of course). I guess she hung onto some fact that fatty tissue ( not that you are fat) can help cause one. I guess. My doctor never told me that, but what the heck, I never asked.
I tried to explain that though mine was small, it was in a delicate area and it was difficult play with. ( a wide necked pericollsal ) I explained a lot of times those are trauma based and since I have had 3 major concussions,( two losing consciousness, one having to be sowed up) that there could be a high probability that its trauma based- not because you ate at McDonald’s based. There are people who jog 3 miles a day, eat protein bars and are perfectly healthy and drop dead from one of these suckers. They are the silent killer. Most of us,unless they become problematic do not know they even exist.
I was told by another family member ( after going to Dr. internet) it was no big deal people has things in their bodies all the time. True. And perhaps because I had the flu and major headaches for a week I am a little sensitive, but here is the thing:
I do not care if is small - I do not care if it is doing nothing at all. Maybe it is just hanging out playing Bingo with my other arteries. But still it is there. And I get tired of people not respecting the fact that maybe my feelings are valid. Most f the time I do not even think about it. When I started my job ( which I quit because it was so much strain on me-I could not function) I had to fill out a hard that had health issues and so I put it on there. I mean if i suddenly fall down flat, it is a good thing to know. But apparently, i am just being paranoid.
People frustrate me too. This happens with every chronic condition. I have been dealing with peoples’ attitudes, health advice, “be positive” demands, etc. since my teens. They just want you to be better. They don’t want to talk about it anymore. They feel frustrated by “your focus on your problems.” What they don’t realize is that the person with the chronic problem/illness also wants it to go away. Needs to talk about it. And must focus on it to some degree because it impacts their life.
I don’t have the solution, but I hear you. I think you are in the right place to vent.
You are the member of a very exclusive club of aneurysm survivors that the rest of the world knows very little about. They say stupid things because they don’t know what it’s like. Why us? It might be genetics, it might be a hidden birth defect, it might be hypertension, or it might just be bad luck that docs don’t understand. If you were on a health kick lifting weights, that might actually increase the risk, but some of us were just walking on the sidewalk when “Blobbo” burst (love that name).You are not alone, we all have people in our lives that think they know why this happened. So many people! I was told I was stressed at work, so that’s why it happened. My grandmother died when she was 40 suddenly, but no one know why, so it might be genetic. My mother had 6 kids one after the other, so she may not have been eating well or taking vitamins, whatever. I gained weight with my pregnancy the year before, so my mother in-law was sure that was why. I had a difficult childbirth with a lot of pushing, so someone else thought that was why. All of this is just speculation, that might make them feel better because they think an aneurysm can’t happen to them, if it’s our fault. The point is we will never know why this hit us, and neither will anyone else. Maybe talking to a therapist might help you deal with them and all of the anxieties and life effects that come with this diagnosis. I don’t think it would be wrong to say that most of us have gone through the range of emotions from fear, anger, depression, feeling overwhelmed, feeling alone, frustrated, being anxious. You are not alone, you’re just a member of a club that you wish you didn’t have to join!
Gosh, what interesting stories and reflections! Your stories say an awful lot about the others in your lives. They also say that YOU are strong to be able to endure that kind response from others, on top of lugging the rest of the baggage that comes along with being a member of the siblinghood of brain aneurysm survivors. (Sisterhood or brotherhood sounds better, but you know, in this day and age … LOL)
As for me, I don’t have a brain aneurysm, but I do have a rare disease which gives me the admission ticket to a Ben’s Friends community. And you know what? All of us get variations on the same blame-the-victim and just-do-this themes. I also work and drop in on the other 42 Ben’s Friends communities, and it’s a same old story on those communities too.
The bottom line: people . just . don’t . get . it. Until you’ve been there, and got that (whatever rare thing “that” is) you pretty much can’t get it. And that’s the beauty of being a member of Ben’s Friends: here we get it, and here we can support each other in so many ways. We tell, we vent, we share and we laugh. And somehow, we will get through this together.
No, it is either a diseased artery or trauma. Mine was trauma based. So, yes I am fat but mine came from having 3 major concussions. Now, that being said, I am no brain surgeon ( ha ha) so there maybe other things but that is what I was told.
Iam sorry that this happened to you.Because they really don’t understand.But if they were the one with the aneurysm they would feel what your feeling.Some people just can’t deal with it so they try to make it about something else.In my opinion there is nothing that we’ve done to cause them.Unlike most people we know we have them.Hope things get better for you.Hang in their were all trying are best.And I think, Your doing just fine.Good wishes!
Hi I have wide necked pericallosal aneurysm also, discovered after intense headache whilst lifting weights. I took this to be thunderclap, but have been told no bleed. Since then, (March 2018) I have had daily headaches, which I never experienced previously. Told last year would be monitored, but find myself hoping it has altered in order that treatment will be offered, as I find living with this extremely difficult. My life has been adversely affected in so many ways. Sorry to be negative, but I am so worn down with it all
Just wanted to check up on how your doing.By being open on how you feel has made me think about how sometimes I feel like I should be getting better.But wanted you to know your not only one.Thank you for you openness.
Hey Cadia,
Firstly, stop apologising for being negative. None of us consider this a positive situation and the common ‘Wait and watch’ never makes things easier. For me it was like I have a timebomb in my head. I too never had headaches but when they came they came with vengeance and since my first surgery have had them every day. Some days I can push on through, but other days pushing it only makes things worse, MUCH worse.
Initially I was told ‘wait and watch’, then I’m driving down the road and the lights went out, I couldn’t see. This was scary as all hell. This was the trigger that made the dr’s look a bit more thoroughly, but prior things were all minimised by the medicos BUT for me… …Ohh hell… …I couldn’t minimise anything, it was here and it was/is all very real. I don’t see it as negativity, I see it as our reality. If anybody tells you this is simple or easy, I can tell you they have never been here and honestly would have no clue of the realities of it all, and its scary and draining, that’s normal.
You are not alone in all of this. We know what it’s like, because we’ve been there too. Come talk to us.
Hi Merl
Thanks for your reply and encouragement. I had MRA 2 weeks ago and now waiting for results/appointment with neurosurgeon to find out if there is a plan. Not optimistic about that, as was 4mm at last scan and was informed intervention too risky, despite aneurysms in this area being prone to rupture when small. Very very frustrating to be told symptoms are not related, but they cannot say what IS causing them. I will just need to put up with it I suppose, but it’s dreadful how our lives are affected with no real recognition, just dismissive comments. Take care
Cadia
I do think that this is the most difficult part of having any rare disease or condition. The blank looks. The “have you tried cherry juice?” The assurance that they know JUST how you feel because they once ended up in emerge … blah blah blah. The intended-to-be-helpful victim blaming (thanks, I’ll keep that in mind …). I don’t have a BA, but all of us have a lot of have these experiences in common.
It’s not easy. Do be open about your feelings with your neurosurgery team, Cadia. When they talk about percentage risk, ask them to put that into perspective for you. Remember, you need to live and enjoy what you can today as well as make allowances for your diagnosed condition.
Lean on us here. Share. Dump. Rant. And support others with your presence and your empathy. That’s what Ben’s Friends is all about.
“Very very frustrating to be told symptoms are not related, but they cannot say what
IS causing them. I will just need to put up with it I suppose, but it’s dreadful how
our lives are affected with no real recognition, just dismissive comments”
This is VERY common. I have endured a few neurosurgeries and the theory is ‘We operated. We fixed’ but as I’ve said many times before ‘…if this is fixed then I can think of another ‘F’ word that better describes it…’ The ‘not related’ bit can be so frustrating. For us it can be a case of trial and error to work out how best to manage.
I have found that trying to obtain a fixed point on which to gauge any improvement can be difficult as my symptoms fluctuate so much, so that ‘fixed point’ is never actually fixed. I have given up on the medicos having any great answers, when we don’t sit within their parameters then the answer is “It must be you or something you’ve done”, like we choose to be in this position. Did you choose to be here? Of course not. None of us have, but we have to learn to manage the best way we can.
To reiterate what Seenie said “Lean on us here. Share. Dump. Rant. And support others with your presence and your empathy. That’s what Ben’s Friends is all about.”
And
“You are not alone in all of this. We know what it’s like, because we’ve been there too. Come talk to us.”
I’m sorry…I started hearing Dr. Seuss and had to chuckle. The internet is a wonderful, frustrating piece of assistance. Most folks don’t know to look at proper websites, most folks want to just say it’s ok. Most folks are probably scared to death at the thought they might lose you, so come up with the dumbest things to say. Trying to educate is a good thing, tell them where to look.
I also look at positives from my rupture - I truly don’t understand innuendos anymore and people have to spell it out for me which makes them very uncomfortable if they aren’t used to being honest. I get to say “I’m brain damaged, what’s your excuse?” and I get away with it because there is nothing that they can respond to. What I often say to people is yes my brain was damaged, but not my hearing so why are you yelling…
And then there are those rare public incidents when someone has done something that confuses me and I go off. Luckily the folks that love me laugh and I’ve learned not to feel quite so guilty.
And I let them know to look at the research on NIH, don’t believe crap on Dr. Google, go to trustworthy sites. You could always ask them if they would buy snake oil… if I was a betting person, I bet they would!
Hi Cadia
Thank you for sharing your story. I have never been able to make anyone understand the visceral fear I experienced, most of it after I survived surgery for an aneurysm that was in the process of rupturing. That was 25 years ago. Over the intervening years I came to the conclusion that it is impossible for anyone who has not been through it to ever ‘get it.’ I love the fact that you deal with it with such humor. That is the only way I got through it afterward, by joking about it.4 years ago I found I have an aortic aneurysm in the top of my heart. They determined that it was too small to warrant surgery, thank God, but I felt for a while as if I have a ticking time bomb in my chest. A couple of months ago I found that I have yet another cerebral aneurysm and here came that drafted fear again. It is tiresome! You however, have given me new life, reminded me that everything is easier when viewed with a healthy serving of humor. I understand how you feel, we all do. And I thank you truly for your gift to me of renewed humor.
There is good information regarding aneurysms on the Mayo Clinic website. I know you want all the knowledge you can get. Ask your surgeons, doctors and I might suggest that I have found PAs to be a great source with a wealth of information. Do not quit asking these professionals until you have all the info and answers you need. It is your body, your life and you have a right to all the in depth info you want and need!!!
Sharron Dupree
You are not being paranoid, and family members need to stop reading Dr. INTER, and maybe go to a doctor’s appointment with you. The fact that your aneurysm is in an area difficult to navigate, it is extremely wonderful that you left a job that caused you stressed. You and you alone come first not any job or other’s opinions. I get irritated at people all the time occupational hazard of our injury😊
Aong with this community site please join a support group near you. You are not alone.
Be blessed
It is frustrating and you are normal. After my rly coiling, family started to say I was fine and it was no big deal. They were not supportive in me learning to drive again, memory loss and general loss of confidence. They couldn’t see my injury, therefore I was fine. 4 years later and back to where I was before, I have lost confidence in them. Now I just say “trade you places”.
Fortunately, family didn’t go on internet or at least didn’t say anything. This is a good site for support. Hang in there and if possible, find someone who will just listen to you. You are in my thoughts
You are not paranoid nor are you being too sensitive, the people you are speaking with are ignorant. And if they’re family members perhaps living with them in your life has made you the strong person you are. You have taken all the right steps, including listing it on a job because that small act could Possibly save your life. I hope they are keeping an eye on it to make sure it stays small.
