Hello everybody, I’m so glad I have found this page just a few days before my procedure. they detected my aneurysm on July 8, I was screened because of family history. My granny died of a ruptured one in 1993 (she went by herself to the ER and the doc told her to go home with a painkiller!), my mom suffered a rupture on 15.12.2012, I’m thankful to God and the doctors she was saved and is doing great now! Of course I was screened and they discovered a 7mm annie on the posterior comm artery, it’s 4mm diameter and 2mm neck. That’s the CT scan result. I’ll get an angiogram on the 9th and it may show different results I heard. Scares me so much. I’ll be getting coils and stent the next day. I’d love to hear your stories on coils and stents and especially the post-procedure period. How do you feel when you wake up? Is the stay in ICU scary? Do most of the coiling and stent go ok or are most of them painful? Anything you can tell me I’m happy to hear. I’m really stressed and am doing mindful meditation and yoga to calm down, this website is of great help too. I am otherwise from Belgium and would be happy to help if anyone in Europe needs any kind of info or support! Thank you so much for this forum, it’s so hard to find people who understand what we are going through. PS: I’m 32 yrs old. No health issues except for a slight managed hypothyroidism
Hi and Again Welcome to BAF ~
Glad you found our site. I was coiled in 2010 and I had some bad headaches for a few months after my coiling...I don't really share too much of my story because I feel I am an oddity because of other health issues. I believe if you have faith in something, hang on to it now...I also believe by the time the date of surgery, one is ready to get this show on the road, so the healing can begin...and lastly, my most important advice...time and rest help the body and brain to heal which takes time to our "new normal"...and taking care of YOU along the way ... will keep you in my prayers...~ Colleen
Thank you Colleen. Did they also find your aneurysm on time, before rupture? Very good to read all these experiences, you people are so brave!
Hi!! me again!-lol GREAT to see you sharing on here- stick with us- the support will be awesome , I guarantee, I had sah 5 yrs ago w headache that Tylenol and rest handled beautifully. The icu is not scary, quite the opposite- it will be a huge weight off your shoulders to know you made it and positivity will surround you with a safe secure feeling, you are on the right path and I am sending our sincere condolences for the loss of your grandmother and for your mothers affliction also, they will both be proud you joined here and are being so vigilant and pro-active. The waiting is the hardest part and prayer and radio, tv sermons is the only thing that helped- I wished I found baf prior! Try meditation too- one lady envisioned the faces of her children and other loved ones as they wheeled her into the theatre. I did a meditation transporting myself to another time/ place as they prepped me-went to the beach imagining all the sights and sounds and warmth- this was taught to me during chemo to keep from getting sick and I was surprised how well it works- the diversion of attention from stress to happy place. This may sound crazy but try it- it works, also find what works for you, maybe reading is a better fix for you. Keeping you and yours in thoughts and prayers- think positive! ps I really do think u will do great- im picking up a positive get it done attitude from you! tc xoxo
Thank you Ron! Was yours clipped or coiled? I remember my mom's SAH, I had never been more scared in my life during the three weeks she spent in hospital, but thank God for the doctors, she is now good. One doctor told me that my grand mother and mother's ruptures were a "gift" to me since i was diagnosed now. I try to take it positively even though I'm so, so scared at times, you have to force yourself to be positive and grateful when those dark thoughts show their head. And I'm praying they won't discover another one...
I started meditation when the aneurysm was discovered and I also find it to be very helpful. I have been having panic attacks for years and years and for no reason and meditation really helps when they arise.
And then reading all your experiences and personal stories is also VERY helpful!
Read your note...both aneurysm's were misdiagnosed...by the time I got to the neurosurgeon the 9mm on my basilar tip was leaking, but hadn't fully ruptured...so I was blessed...~ Colleen
thanks for the vote of encouragement Taniamil! I appreciate your reply! I was coiled but no stent. I cant imagine your fear level, no I am not brave- I was shakin in my boots every procedure!! We are very different but very alike too- my mom and the rest of the family was fearing for my life as you were for your mom, how is mom? have her join us if she needs info or support- its been the best therapy for me by far! tc more {hugs}}}}
Thaks Ron! I will have her join definitely, just spoke to her, she said she'd set up a profile. She thinks her English is not good enough, but i told her nobody judges here, and I'm sure she can also be of great help here since she's been through the dreaded SAH and got out with almost zero consequences. After my procedure I would like to set up a support group here in Belgium, there is nothing similar to what people have in the US and in the UK, no one to turn to, I'd really like to raise awareness about BAs where I live and in other French-speaking countries. Hugs to you too Ron!
You will be fine. I agree - it is very scary. I was coiled/stented with a basilar tip annie 3 yrs ago. I was in the hospital for 3 days, 2 in intensive care. I really don't remember much after the surgery until the next day - I remember the Dr. in my face saying I was going into a cat scan (which was the next day to make sure the stent and coiling were all right). The migraine was pretty bad the 2nd day - they tried to control it with morphine, but it didn't control it. I kept asking for Fioricet, but didn't get it until the end of day 2 - it helped tremendously for me. I took Fioricet and oxycodone (5 mg) for 3-4 weeks, then the migraines started going away. And fatigue is very common - mine lasted for quite a while, but it gets better in time. I learned to just give into it and sleep when it hit me.
You will be fine - please let us know how you are. This forum really kept me sane and gave me so much re-assurance. Sherri
hi, I had a stent assisted coiling in June for anterior comm artery aneurism. Last november I had a ruptured annie with severe sah and vasospasm which is when they found the 2nd and 3rd annies. I had to wait months for the second one to be treated and it got delayed so I just put it to the back of my mind until I got a letter to see the surgeon about the second one for stent and coil treatment. I suddenly got VERY nervous. Ask the doctor lots of questions, about the risks etc, but generally they will only treat annies if the risk is less than leaving them, and at 7mm and a family history of ruptures, I think your risks are up there if it is left untreated.
My surgery went fine, I was put under and woke up in the recovery room, then moved to the neuro ward for observation, no complications at all. I was put on blood thinners about a week before and have to stay on them at least 6 months until my next angiogram. Unfortunately this meant I had a lot of bruising. The hardest part was having to lie still for hours afterward (my back started cramping up really bad). It took a couple of weeks for the bruising to heal. I get daily headaches now, but I was told to expect headaches for a while.
For me the only way to get through it was to just jump in and have faith that it was all going to go well. I was lucky that I really trusted my surgeon, he was the same one who went all out to save me when I had my rupture so that made it easier for me. Good luck and I hope all goes well for you.
Thanks Sherri, sounds like you really had a rough ride there... I also suffer from bad headaches, although docs say they're not migraines, but some other kind of headache, I think it's pretty much hormonal and stress-related and sometimes no painkiller on earth helps and I just wait, it always passes.
Were you a migraine sufferer prior to the coiling/stenting or did it start with the stent?
Hi Sharong, thanks so much for your kind words! I try to stay calm as much as I can but I can't help the occasional anxious attack. First time I hear about the bruising. Is it frequent? What causes the bruises? Sometimes I wonder why he wants to put a stent when the neck is so small. From my understanding a small neck is enough to keep the coils inside and a stent is more for wide necks... An with the coils only , no bloodthinners, right? Or maybe I misunderstood?
Are you getting a treatment for your 3rd annie? How big is it and where? How big were the others?
Your rupture experience reminds me of my mom's. She also suffered SAH and then vasospasms for a week after her rupture, sometimes I think that the vasospasms episode was even worse than the bleeding. I was so scared, in the frst days, when th spasms started she couldn;t speak, it was like she was on another planet. She spent a week in ICU trying to get her BP up but even when she was maxed out on adrenaline and fluids she wouldn't go over 140.
Yes, I think I'm definitely a high risk patient, and the doc told me that an aneurysm on the posterior comm artery is like THE riskiest place for ruptures, so it looks like all odds are in favour of the procedure. It helps a lot to hear about your experiences, thank so so much!
Hi, yep your understanding is right as far as what I was told too. Im pretty sure the bruising was because I was on blood thinners/anti coagulants, even my forearm where there was a cannula (sp?) was got so bruised and clogged with blood they had to take it out. I still bruise easily anywhere now (am still on them). mine was a 6.5 mm broad necked annie which is why he also used a stent (to keep the coils in). I was told that the blood thinners were to prevent clots from forming in the stent until it healed over so this was a bit different to my ruptured annie (7mm) which was just coils as far as I know. I was pretty much in la la land for weeks after my rupture, thankfully I dont remember very much about it but the bits I do remember were like some crazy dream (one time I even accused the nurse of calling the cops on me because there were two male orderlies at the foot of my bed!) It was a really confusing time. As scary as this all seems, going through a rupture is very bad and very painful and if you can prevent that then it's a much better place to be. My third annie is about 4mm I think, so it's a "watch and wait". It's small enough that the risk of rupture is low so it wont be dealt with unless it gets much bigger. I'll be thinking of you and wishing for a great outcome for you. All you can really do is ask lots of questions but when you think of the risks it is scary stuff, so you may have to take a leap of faith and believe it will go well.
hi sharong! like that "leap of faith" sooo true. Also I used that term at therapy doing sit to stands- you need faith in that weak knee/leg, take care!
I had never had migraines (except for the years I was on cancer med, which gave them to me). I used Midrin and ibuprofen back then to control them. I hadn't had any for years and didn't have them prior to the brain surgery. I woke up with them after the surgery and the doctors tried different meds even though I specifically asked for Fioricet. Once I finally started that, the migraine was controllable, but they only lasted about a month after the surgery and I don't have them now.
I feel for all of you who have migraines - I know they are not fun. Midrin was off the market for some time because no one was manufacturing it. I have heard it is being manufactured again (probably under a generic). My daughter also used it - she tried everything else and that was the only thing that stopped her migraines (they are from a brain wave disorder).
Have you tried Midrin? It does have a drug that narrows blood vessels, so I don't know if our docs would want us to take that now.
I forgot about the bruising from Plavix (blood thinner). Is that what they put you on? I had an angiogram 3 months after surgery, which is when my doctor took me off them. I remember helping with a huge dinner at church and for some reason I cut myself very little on my face, but it bled like crazy and I had to go home.
Now, with the aspirin, I do bleed sometimes, but not like I did on Plavix.
I'm curious - you say you are getting an angiogram one day and then surgery the next. Can they not do it all in one day?
The doctor thinks it’s more professional to do the angiogram and then have a meeting with the other doctors to decide what the best procedure would be. So far he’s seen only a CT scan of my brain (that I had done at another hospital). Based on those results he says we’ll most likely go with the coiling and stenting but since the angio gives much more precise results he wants to see it a day before proceeding. Also the angio will show if there are other smaller annies that don’t show on the scan. And I’d rather know of other annies before being put to sleep. As for any other medical procedure he wants to have a full diagnosis before operating and I found that quite reassuring actually:)
They haven’t told me yet whether I’ll be on bloodthinners or not but if they stent I guess it’s mandatory. I’ll know more on the 9th, I’ll let you know!
Hi Ron! oh those sit to stands are tough! I buggered up both of my knees from those exercises but I know what you mean. much of this stuff is out of our hands and up to the skill of the doc and maybe even a bit of luck.