What is the point of the surgery if people r being left with speech problems balance memory loss, it's not making any sense. I am having difficulty making my mind up, seems more problems taking care of it. I hope I did not offend any 1 but this is not making sense to me at all.
Yes, it can be a difficult decision. I found it quite easy as, at the point of diagnosis of my unruptured aneurysm, I was so symptomatic I could not function in life and it was so large it would eventually rupture and death would be pretty inevitable. I am now much better than I was at the point of diagnosis, though not the 'normal' I was a year or so earlier. For others, and you I presume, it is less clear. The 'do nothing' option means there is some risk of rupture with the associated death risk and/or disability risk, but there is also some risk from surgery. You have to weigh up the risks and decided what is best for you. For many people the 'do nothing' option does not suit them psychologically as they worry too much about what is happening in their head. For others anxiety is much less of an issue. So, when the decision or advice you are getting is unclear decisions about surgery will be affected by the psychological makeup of the person. We are all different and have different reactions to illness/risk etc. Only you, with advice from your surgeon/neurologist/radiologist can make the decision that is best for you.
Also, remember that as this is a patient forum those of us on here are the ones with problems. Those who sail through their diagnosis and treatment with no difficulties and make a quick, full recovery have no need to join a patient forum. We are a select group and probably not representative of the whole group of people who have had brain aneurysms. Our experiences are also not the whole picture. You will, however, find support and encouragement here and others who have been through similar things. If you have specific questions please ask as it is likely there will be someone here who can help. You are not alone.
I hope the way forward for you will soon become clear. Judith
hi! the point is you don't wind up with a sah and be permanently disabled like me, sounds like you need more info from your neurosurgeon to help you, the risks of speech problems is probably very low, balance and memory generally improves in time and can be another underlying cause like infection etc etc. Also sounds like you been reading too much negative stuff , my advice is to stay away from the negative stuff and get some solid advice and info from your nuero. maybe call their office, the nurses are very educated in this field and can either answer your concerns or schedule a consultation. Forgive me if I sound simplistic- I know it must be so hard and my heart goes out to you, I hope you get a lot of response here- we must band together~~~ let us know- it will help to know we are with you 100%
Hi...yes for many of us we are left with effects...but they are so much better than what could be ... and I for one accept my deficits as well as my attributes...remember most of us are at BAF because we are still dealing with this journey, but there are so many who have come through here and have had surgery and are doing so good today... this is a personal decision and truthfully has nothing to do with any of us...~ Good Luck in your decisions...~ Colleen
Like Ron said, you'd be having the surgery in order to avoid catastrophe--a rupture--and keep in mind several things regarding ruptures: most people don't fair all that well after an aneurysm ruptures, the odd's are NOT favorable and many , many people die or are left with a varied range of heavy duty issues--not just not being able to see well or the occassional bout of dizzyness... things like being comatose/semi-comatose/don't know their names (or if they do, they can't speak any longer in order to tell you) and can no longer eat food but gee they've got a nice feeding tube--(I don't mean to sound harsh, but that is stone cold reality). The odd's of getting thru a ruptured aneurysm is NOT in anyone's favor, and anyone who has had a rupture here can tell you, you want no part of it. THAT is the reason behind treatment of an aneurysm..please don't run the other direction, your family and kids are worth much more then that, and so are you.
Janet
Hi… I had a brain aneurysm that ruptured while I was driving. I did not know that I had a brain aneurysm. They coiled it and was in the hospital for 21 days in 09-01-2012. I was blessed because I had no after issues. Not with speech … not memory … and did not have to go to any physical therapy … I also know that I could have died … Yet I am still here and things changed for me on my perception of things … I think that if I would have known that I had one I would have chosen to take care of it before it ruptured … Maybe you need to get more information from your surgeon and look at the positive outcome that has happened for many of the survivors … weight the good outcomes with the not so good and ask those things to your surgeon … Be Blessed and hopefully you take a good decision … God Bless You …
You were blessed...
My annie was found incidentally. I had absolutely no symptoms. While it was on the smaller size (less than 6mm) it was Mickey Mouse shaped with a wide neck. I probably could have said just leave it alone. However, for me, just knowing it was there, was causing too much anxiety. I did a lot of research. With my younger age (38 at the time) and relatively good health I had a very good chance of treating the annie with little to no complications. I chose to "fix it" with a clipping. I was extremely lucky to experience a complication free surgery and a pretty easy recovery. I did have a little issue with balance and endurance. I did physical therapy for a bit and it improved.
I chose the surgery because I did not want to risk a possible rupture. There is no way to tell when and if an annie will rupture. Being on this site and reading people's stories actually helped me to make my decision.
Are your chances of something happening during surgery higher for some reason?
Terri
Janet, and any1 else who can read this. I am not going to bable to read all my emails right now I have came down with a cold from hell, and seems like purpose all the pressure is on the left side of my head sneezing coughing feels like my head is going to explode. doc got me in this a.m steroids. Thanks to all and I will get back to u.
Judith, going undiagnosed for so long with my anemia, and the headaches, has made a huge mess of things at the same time I found out about this anni, I was also told that I have a birth deff in the back of my skull, and they also found a heart murmur. My 8yr old daughter who just turned 9 knows something was happening. I could not hide it and I thought I was, however I also have a 4yr old with what I found out yesterday is delayed 2yrs with his speech. I brought this up to pedi when I he months old that something was wrong and it went undiagnosed, but I have been teaching him while neglecting how I felt I thought headaches was due to stress. This is the reason for unable to make up my mind about surgery. My 4yr old son needs me as due my other 2, and I am so affraid to take this gamble. we have no family to help us if something does happen with my walking or vision. if I had no children I wouldn't hesitate. At the moment since I have left the hospital my stress level is over the roof, and my anxiety is awful. my doc r being neglectful as if this is no big deal, all of my doctors r my stress right now and im just trying to think and stay positive because my daughter is not eating as much and she is losing weight, I have told her new pedi, and im trying to find a therapist to help us get through this. Thank you for responding all of u you I am so happy to have joined.
Ron, it's because of my 4yr old son. I am busy taking him to Doc reguarding what the pedi neglected to do when I told them that something was wrong. surgery is not an option for me right now.
You mentioned that you're stressed out to the hilt on this, can't blame you on that ! Have you asked you doctor about getting something prescribed to you to help with the anxiety / stress factor? Like an anti-anxiety medication (like Xanax or Ativan--these are not anti-depressants, they're anti-anxiety drugs classified as a benzodiazepine's) Might not hurt to ask ~ I know there are countless of us here who take them for the same reason as you (Anxiety)
My husband reminds me daily that I am here & I do know who he is. Yes, I get very frustrated some days but very thankful to still be here with my family. My aneurysm did rupture during surgery but they were able to get it clipped in time, I feel very blessed for this. I have 2 other smaller aneurysms that we have to check yearly but I would do it all over again.
Thank you!
I PERSONALLY FIND THAT GOD GAVE ME THIS CHOICE AND ALLOWED ME TO LIVE. IT WASN'T HARD TO CHOOSE. I HAVE SO MUCH TO BE THANKFUL FOR AND TO LIVE FOR. DO I HAVE PROBLEMS WITH MY HEALTH/MEMORY? YES, ABSOLUTELY. BUT, I AM BLESSED. MY THOUGHTS AND PRAYERS TO YOU IN YOUR DECISION.
Hello 1wish,
I can relate. I understand how hard it can be to make a decision to have surgery with the risks involved.
I also ruptured twice. Last year Jan, and then again in Feb. I have a large vertebrobasilar aneurysm that isnt completely secure. I have had stent assisted coiling after the first rupture, and more coils after the second. I went in Nov. 2013 for the PED,pipeline stent, but it wasnt successful. (they were unable to get the catheter to cross the previous stent to deploy the PED, and I had catheter enduced spasms-..making the decision to go fwd w/ the pipeline despite all the consequences there would be If they were to deploy it- was very though indeed! Although it didnt work, I am thankful it didnt!! I don't think it was meant to be for me, and again, must have had angels watching over me...But now, I am looking at a cerebral bypass surgery. Im afraid to go in fine, but not come back the same, that is if I survive. Its a Huge deal.
I don't know if this will help you much, but this is what one of my surgeons wrote me in an email recently:
Taking care of yourself…excellent. Having a good attitude….also excellent. But delaying the treatment is not ideal. You should either make the decision to operate or not. By delaying the operation, you are exposing yourself to the risk of spontaneous bleeding from the unprotected aneurysm (by waiting) and the eventual risks associated with surgery (if you have it). So, you would be taking a course which is the highest risk. However, if you say no surgery, then you eliminate the surgical risk but live with the natural history risk (which I feel is higher that the treatment risk). And if you pick surgery tomorrow, the daily/weekly/monthly risk of the aneurysm spontaneously rupturing is likely eliminated but of course you have the risks of the treatment.
But you should pick one path.
I ruptured while driving. Very lucky I didn't hurt anyone. They found another right next to the ruptured one that is very large. I came through the coiling with no issues, but had a vascular spasm that caused some issues. I am working with physical therapy and on my own. The rupture happened 02/24/14. I am now walking on my own, no walker or cane. I am almost back to myself already. Several years ago, when my children were very young, I had another illness. I opted for the chemotherapy and other treatments. I found that my young children gave me purpose to fight the illness and do all I could to be there for them. The decision is up to you and I understand not having family nearby to help out. Just giving you another story that may help you out.
Terri,
At the moment the surgeon can't touch me due to my severe Anemia, he wants the Oncologis/hematologist to find out wht is causing the sever anemia, and wants him to also rule out that I don't have leukemia, like I really need more on my plate. These headaches have gone untreated for at lease 2yrs and they have gotten much worst on the past year. Anni's don't cause pain so it has to do with the birth defect I have in the back of my head/spine that's the only thing I can think of. But the Arrogant Neuro surg that went to c me at the hospital said he didn't care to discuss that part of my head that he was more concerned about the Anni. Whatever the day of the appointment he has no file on him not even a pen so this guiy sits us in front of a flat screen and here is your anni, and everything is fine tell your doctor to get you on simivistatin! uh how many mm and for what? what ever she will know then I asked what should I be cautious with he said your fine I asked why do I get these electrical shocks in the back of my neck and when that happens my jaw locks then this idiot tells me stop yelling at your kids......wrong answer I asked him if he was crazy, I really did, I said u don't even know me and I ask u 1 question and the sky is falling the doc replies he understands how kids can be he is ITALIAN, and yes you are also the biggest jackass I have ever met. I said back up! im supposed to let you operate in my brain serious, we have not hit it off thanks but id rather rupture at this point. The reason about the shocking, is because I know longer go to football games or baseball games I get to crazy when im there supporting my teams. I had to stop going because of this pain now I think my doctors r going to kill me because it has been so stressful since my annie. Thanks Terri and my apologies for responding so late.
Raquel
janet, sorry I left you the other nite. yes the stress hilt has been taking care of 1mg of L-pam I have never taken anything in my life 1 time feels weird Norco for my head but I c new nuero on Monday this pain medecin is not working something is very wrong. It's been 2weeks now when I went to my pcp about starting me on antibiotics before I got an infection instead the idiot put me on steroids, well I got a full sinus infection with infection in the left ear and no relief for the pain in my head. im still not well im having a reaction to something but can't go to the hospital with husbands on call schedule until Monday morning. god I hope I live that long. janet im so nauseated the pain in head is constiant. I have not been on line for to long. hope you are doing well again im sorry for your loss.
Hi Everyone! Hope you all are doing well.
I have met so many of you an this site, and I love you all. That's what I have been up to when I have a chance to get online, but now this is an update, I had the thought of giving an up date but this stuff makes me nervous, however my friend RON, reminded me about it Thanks Ron, so here I am.
Last Friday I was informed that they don't believe my Aneurysm is the accurate size the MRI showed on the 1st mri, so I will be having the angiogram on June 24th he wants the right size and location and then we decide where we will be going from there. It is the 1st time ever to have an Angiogram the previous size was 5mm now who knows like that's not big enough already. He did this follow my finger thing and I had no idea that the blurriness of my vision had anything to do with it. I wear glass so sometimes if im reading for to long or tired that will happen, but it goes back to normal pretty quick, well he had me seeing these flashes from my left eye after he finished with his little test and I felt this pressure in the back of my left eye I said what the Hell did u do, and I covered my eye with my hand to ease the flashing and pressure, he said that it's the pressure from the anni I had no idea how this thing really affects this much and people who have bigger aneurysm's can't imagine what effects they have. Well that's my up date, and thanks to all of you for being there. Everyones information is different and someone does benefit from these updates so keep posting and again to all my new friends on BAF's we all kickass and I love you!
1Wish