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Hi everyone

Well I had my Anigio yesterday and all went well.A bit tired had a couple of minor reactions with a lovely light show after for about an hr and a fainting spell because my blood pressure went really low,and a mild headache but otherwise am all good!

We did however get some bad news as we were hoping the aneurysm was in the neck but it turns out its in my brain so i now have to make the decision to treat with a stent or to monitor.My doctor believes it is possible ive already had a rupture so he has put it back in our hands to make the decision to treat or to watch!! why do they do that i have no idea what to do now??? I believe it has rupured already. These were my symptoms I had instant pain in the back of my head not like a headache that comes on gradualy it was bang! The pulse in the back of my head was pumping like i have never experienced.I felt like i was struggling to breath and a few days after the headache my neck became very stiff and sore really heavy like i couldnt hold my head up i was wearing a neck brace because i thought maybe i had pinched a nerve.This headache lasted for 13 days. I am a migranne sufferer and this headache was nothing like a migranne. I was at the accident and emergency 3 times in that 13 days and they passed it of as cluster headache or migranne until finally on day 13 i got a scan done were they finally picked up the aneurysm.But obviously by that stage it was to late and showed no bleeding because apparently it diminishes as the days pass.

So here I am stuck with the risk will it ruture again and be worse next time? Or maybe it will never rupture. Or treat it and take the risk of something going wrong .Or have it and be confident that all will go well.Can anyone offer me some advice I really need it!

Thanks So Much

Tash

Hey Tash,

Glad the angio is over and went well. Are they talking the PED when you say stent? If so, come on over the PED group. Lotsa good info over there and everyone that's had the procedure is more than willing to shoot you some advice. How big is it? Where in the brain is it located? What's the formation/structure?

A lot of us have gone through what you're going through (my headache lasted months, though they still to this day say it was unrelated), either with a rupture that already took place or an unruptured aneurysm that we had to decide which treatment option to run with. So yeah, it's a mind game, risk or risk, there's reward both ways as well, but you ultimately, you have to decide what is best for you.

There's so much behind the decision to get the surgery... insurance, time off from work, a good physician for when you're recovering, a good neurologist to help you with post surgery headaches, a patient and understanding person/husband/so to help you through it all, and patience with yourself for a possible slower recovery time than what the surgeon projects/predicts. My surgeon explained to me that living with the aneurysm unruptured but still in your brain is like winning the lottery in a bad way. He said something along these lines: It's all a numbers game...you have about a 20% shot of it rupturing, and each year of your life that increases by 1%... if it ruptures you have a 50/50 shot of life or death. If you live, you have a 50% chance of being a vegetable or 50% chance of recovering. If you don't become a vegetable, and you win the recovery lottery, you have a 50% chance of not recovering fully... ie, having some sort of physical disability. Since I've never, ever won a lottery, not even a scratch off, or even a bingo game, and I'm REALLY and I mean REALLY bad with math, I figured I'd better get it done. Haha. Plus I have an almost three year old son that I'd really like to see grow up, and an adorable husband that I'd love to get all gray and wrinkly with.

I had the PED inserted on July 31st. Deciding to do it was probably the most difficult decision I've made in my life. But I'm glad I did it, and my latest angio on Nov. 7th showed that it is 98.5% occulated, and shrinking fast and the chance of rupture is down to 1.5% which is a huge weight off of my shoulders and the biggest relief of my life (other than those ahem times, and you girls know what I'm talking about...). I do know one thing with choices. Once you make them it is far more easy to be confident in the decision you made. I won't lie, it's a tough one, and all we can do is tell you our stories... hopefully they'll help.

Tara

hi Tash! gosh so sorry your faced with this and wish i had some advice for you. i don't understand that they don't know if you had a rupture? Did you not have a scan or mra? Did the dr give any indications of which avenue to take? Did they say similar to Taras- 1% per year additional risk? their are so many variables-shape.size, location, your age etc etc. Please know this- we are keeping you in our thoughts & prayers that you decide the best possible way to go & it works the best way whatever you decide. May God bless you & yours!

Hi Tara & Ron k

Thanks for replying to answer some of your questions. This is the situation .They did the scans to late after my headache and apparently this diminishes signs of a bleed .So they can only go of my explanation of my headache they dont know either way. I also have a family history of them grandmother died from rupture at 54 and also 2 uncles 49 and 48. My mothers sister just had a rupture she had 3 annies and one burst she is now in rehab not doing so great. My mother has also just been diagnosed with one and also currently in process of hers being treated.So the family history is a big factor also in our decision. Now about this aneurysm it is small 3mm it is in the Right Carotid Artery just proximal to the origin of the right ophthalmic artery. It is shaped like a horse shoe.Thats all i know. So our fear is I truly believe with all my gut this thing has already leaked or ruptured once.My family history. On the other side its small which makes my only option ped. My doctor wants us to make the decision him and his team are happy to go ahead now after angio with whatever we decide ??? Does this help? I have no understanding really of positioning or anything he did a pic for me and it looks to me like its behind the right eye in my language. Appreciate your thoughts :)))))

oh and i forgot to say I too have a baby 18mths Tara and am 42 years young :)) in total though i have 6 kids. 24,20,18,10,7 and our baby

Cool, I'm 42 as well -- though you have me beat on the kids front. I only have one -- we tried for forever, but nothing ever happened until we got a puppy and then, whammo! Insta-preggers! The only thing I can tell you is figure out if you trust your surgeon. Mine had a list of credentials miles long, and I was PED #100 for him -- he taught the procedure to other surgeons, and even had other surgeons sitting in on his surgeries so they could get some of them under their belts. If you have such a history of aneurysms, that might weigh me heavily in the direction of just getting it done. The PED surgery is pretty straight forward -- you take plavix and aspirin for about a week and get a lot of bloodwork done until your blood is at the optimum slipperyness and fluidity. Then you go to the hospital and check in like you did your angio -- in fact its much like getting your angio, except you're asleep for the procedure. Everything is done through your femoral artery, just like the angio. When you wake up, you're being wheeled out of the surgery room and into the ICU where you get your own fabulous room, hopefully with a tv to distract you, and you have your own light show if the aneurysm is behind your eye. You lay flat for a few hours then they come in and take the thingy out of your leg. And you might notice a thick IV in your arm where they placed an arterial line should they have needed it as a 2nd option to get in if they needed it. After they take the thing out of your leg and push on it for 20 minutes or so, you continue to lay flat for a few more hours then they gradually raise you up to sitting position over the course of a few hours. Then they put you in a chair and feed you god awful hospital food. Depending on how you are doing and your pain threshold, they may admit you to the hospital or send you home from the ICU later on the same day you had surgery. There's a video of the surgery here: http://www.youtube.com/watch?v=2oksKBwYAKs which will give you a better idea of what it entails.

If it ruptured already, it will again in my opinion, so I'd do it, but it is your choice on what you do, darlin' and a lot to weigh. The recovery can be quick for those that have little other problems. I happen to have a lot of issues going on which is why they found the aneurysm to begin with. It took me about 2 months to feel like I could deal with life again, but others have gone back to work in as little as 8 days with little problem. Mine was in the same location oddly enough and was 5mm, but showed as 7-10 on the original CTA, then 7 on the MRA then 6 on the angio, then 5 during surgery... I think all the tests we did scared it into shrinking. hehe

Anyway, do some careful planning and figure out what's best for you. I actually did a pro/con list for myself, but being around for my son outweighed everything else.

Hope this helps--

Tara

Thanks Tara Sorry to keep asking you questions but its just great to me that yours is in the same spot as mine. My other symptoms are really violent headaches with vomiting .They flatten me for about 4 days out of the month.Another weird thing i had was face Paralysis once only and my mouth as well went to sleep twice on the left side both oposite though to the aneurysm.I also suffer from nausea and dizziness.The nuro said the headaches or these symptoms arent related but i question it. What i wanted to ask is it more dangerous that it will rupture again during this procedure if it already has? And what would they do then? ive also been told that its one night in icu and 4 days hospital stay must be different in Australia. Thanks sorry for asking a million questions :)

All of my symptoms (extreme bring-you-to-tears headaches & blurred/decreased vision with green light show) were on the left and my aneurysm is/was on the right. Even the TIA I had was on the left side of my head. I figured it was because the brain crosses things over, but the neurosurgeon said the brain wouldn't where the aneurysm is located. I'm still working on what is wrong with my left side, and still have issues there, but am working with a neurologist that actually listens to me, is actively testing for odd things, and helps find medications other than narcotics to help with the pain. My neurologist told me that it appears that the right side of my face is drooping just a touch, she called it bells palsy, but said most likely it would likely work itself out over time.

I'm not sure what to tell you about the rupture during procedure -- that's a great question for your neurosurgeon, and one that you should definitely call and/or email and ask before you make a decision. Don't feel weird in calling them, remember, they work for you (even if they do seem intimidating at times). In fact, my husband and I started a list of questions for the surgeon before we made a decision -- something you might want to do as well.

Tara, do you mind telling me who did your surgery/hospital?

Dr. Alexander Coon & team at Johns Hopkins in Baltimore