Hello,

My mom had 2 anuerysms, one ruptured, 18 days ago. They were on the left side of her brain, so they were the most worried about physical and cognitive issues. She had a bad bleed. The surgeon said on a scale of 1-4 (4 being the worst bleed), that she was a 4. They weren't able to do the coil procedure because she had a vessel coming off the side of the anuerysm that had bled, so instead they did the clipping. It was a miracle she made it through the surgery. 2 days after surgery they were able to wake her and take her breathing tube out. Through the last 2 weeks, we mostly waited to get past day 14, since that was when the chance of vasospasms greatly reduced.She made it through those days with only minor spasms, and they were quickly treated with angiograms, so she never had a stroke or anything. Her feeding tube came out Saturday and her drain tube in her brain came out today. She is very strong, physically. She is able to walk on her own, at her normal speed, backwards, and with one foot in front of the other. However, she is very confused all the time. She talks about events that never happened, or acts like things 15-20 years ago are happening now. She sometimes sees people who aren't really there, thinks the grandkids are grown up (they are newborn-10yrs old), etc. On the hardest days she will cry and scream at us Beg us to take her home, tell us she wants to die, thinks she did something wrong, etc. She was an alcoholic when we were younger, but she has been sober for 19yrs now. Its almost like she thinks she was drunk and we committed her to a rehab center or something. It breaks my heart to see her cry. I know her mental state isn't good right now, but even if she is crying about something that isn't true or doesn't make sense, the pain is still real to her and that crushes me. She has been very confused like this for the last week and a half, and doesn't seem to get better. She has a few good days, and then a day or 2 of these anger/depression "fits." She has always recognized our dad (her husband), all of us kids, her mom and siblings, and all of the grandkids when she sees a picture or the person. I know we are still very early into recovery, and I am soo thankful to even have my mom. I will love her no matter what her recovery is, I just want her to be content and not soo sad and upset alot of the time. If anyone has been through something similar, is all this normal?? Is she doing good, average, or below average for what she has been through (bleeding, etc.)?? I don't know what to expect from here. Will they let her go home with all this confusion in her head? Will she need constant care at home?? Any advice would be appreciated soo much!!!!

Hi Theresa

I am sorry, I can't give you much information - I had an aneurysm clipped, but it was before rupture. I just wanted to tell you that I am sorry that you are going through this - I am sure that it is actually harder on the loved ones than it is on the aneurysm survivor.

Please be aware that the brain takes a very long time to heal. I can recall (after my clipping surgery) dreaming - on the rare occasions that I could actually sleep - and not being able to differentiate between dreams and reality when I woke up. All of my dreams and my nightmares seemed so very real at the time - although on a logical level I knew once people talked to me.

Please remember that your mother has been through a huge physical, emotional and psychological trauma. Depression is so common and so is mood disturbance, anger and emotional outbursts in the first few months.

I think it is a great sign that your mum is so mobile and that her motor coordination and recognition is so good. I am sure it must be so difficult for you that she is feeling trapped and so defensive about stuff in her past. Just keep being there for her - it is still early in her recovery and it will take time to see exactly what (if any) deficits she will be left with.

Please don't give up hope - even with all of your concerns, it sounds like your mum is a very strong person. If she will let you, cuddle her and reassure her when she is scared or upset. Talk to her and encourage her to share her feelings.

Good luck - it can take up to two years for full recovery to take place (and even then things can improve). Just keep loving her like you do.

Regards - and keep in touch

Lyn

I had a ruptured aneurysm 8 years ago, I recovered remarkably well considering and comparing at how others have faired, but I will say with any kind of brain damage whether it is small or extensive, that as a patient, you feel agitated and your short term memory loss is bad and your long term memory suddenly comes to life, it compensates. She will be all over the place for a long time yet but it WILL get better, and it will take a long time, years even, and even if she recovers well in the long run, it is a long haul and could be 5 years before she feels even 90% of her former self.
One thing I can say from a patients point of view is...its very frustrating accepting you may be limited in what activities you can do in future, that is the hardest part because your mind is willing but your body says no and you get angry wondering why this happened to you...for the most part Ive been ok health wise since, but at the moment Ive been having funny 'do's' and understandably worried, thats why I came on this site, for reassurance, coz you feel very alone with this silent killer...hope everything turns out well for you, prayers and thoughts with you

I am right there with you. My Mom experienced an aneurysm on June 11th of this year. That particular day happened to be the 10 year anniversary of a car accident that took my grandmother's life, broke my leg, and put my best friend of 19 years in ICU with a bruised spleen. My Dad told me my Mom wasn't answering the phone or emailing him back. He works over an hour from home so he asked me to check on her. Its not uncommon for her to be off with friends or walking her dog to the pond. Instead, I found her in bed at 2pm with a headache and stiff neck. After deliberation and my husband's insistence I called 911 thinking she had had a stroke.
She was taken by ambulance to a local hospital. They informed us that she had a significant bleed in her brain and would need to be LifeFlighted to a hospital 3 hours away. She has been there since the night of June 11th when they placed a drain tube in her scalp to deplete the pressure. She had a breathing tube for 2 days and woke up understandable confused. By the 3rd day she could walk with slight assistance, eat, talk, etc. She recognized everyone, even people she hadn't seen in years. She asked to only be given Tylenol for pain and on day 3 that is all she was given for the pain of the headache associated with the draining & pressure on her brain.

She suffered a vasospasm on June 18th (my daughter's 7th birthday) and I was so scared I'd have to tell my daughter her grandmother passed on her birthday. She managed to beat the odds again and made it through with only slightly more problems after. Her issues are mainly mental but there are some significant physical obstacles to overcome. My mother is only 56 but she smoked cigarettes and they said that that could cause the damage & weak spots that are the aneurysms. She had one burst, but there are other smaller ones they can't do anything about right now.

As of today, my mother has been in a rehabilitation facility for 3 days. She thinks she drove herself there, thinks her truck is in the parking lot. She tries to leave so they have an ankle monitor on her to prevent her escape. She asks everyone to bring her home (which bothers her 82 year old mother enough to not call her or visit much). She is well physically but acts unreasonably and impulsively like a child. She pushes every button in her room, on her roommate's remote, the panic button on the wall, and wanders into other areas where she starts pushing more buttons. There are more issues, but with respect for her dignity, I will refrain from getting into further detail.

Its heartbreaking. We celebrated my Dad's 60th birthday and their 30th anniversary the weekend before. We had family in the house the day before. And then life came crashing down. It is good to have the support of family and friends, but in reality: my Dad and I are in this alone. I am her only child other than two step sons. They are wonderful and do care for my Mom after all the years she treated them like her own while they visited on vacations from school. They have lives and a mother of their own so the responsibility falls on Dad and I. My husband could help, but mostly it will be watching our kids while I take care of her while my Dad works. Every day he hasn't worked, he's been with her at the hospital. Now even he is worried about how this will all work out when we finally bring her home.

I'm so sorry you're faced with this and hope that with time you've found more comfort and the answers to some questions have cleared themselves up. I'm still in the scared/dazed/confused/what's next? phase of all of this. Anyone who can testify that their loved one was scarily confused and at times irrational but recovered with time & patience they've gotten better, I'd love to hear about it. I'm reading a lot of negative facts regarding aneurysms and the future of the person affected so I'd love to hear some positive stories to give us all a little hope. Thanks

You are a great daughter keep it up. I'm the mom in this situation you speak of and my husband and children couldn't take it. The symptoms she's having I'm told may or may not go away. Keep strong in the lord. God bless

My Mom had a brain stem aneurysm on Nov 27th 2012. After 3 hospitals in 36 hours, the aneurysm was clipped successfully. Mom was extubated within 12 hours and had full memory. Less than 24 hrs later, she developed meningitis and pneumonia. Back on the breathing tube for 2+ weeks. When she woke up, total confusion! Was speaking in her native language of German for a few days. Scary!!

Well, 2 weeks later, Mom was transferred yet again and needed an emergency VP shunt. Here we go again!!! After a week or so (Christmas day) Mom was transferred to rehab hospital. She is still quite weak and cannot walk alone. She exhausts easily! She is now at home, only brcause we refused to put her in a SNF! It is very difficult! My sister stays with her always!! (She has MS) mom is very frustrated when awake and depressed as well! My hopes are down. I know it takes time but I'm not a patient person. Don't have a clear prognosis yet. I know the brain is very slow to heal.
I guess just pray a lot!
Hope things get better for you!!!

Hi Lynn, this is Jasmine. You mentioned you had an unruptured aneurysm clipped. I am from NSW too and am very much interested to know who your surgeon was and if you would highly recommend him or her. I have a 9mm aneursym in my MCA and had sought an opiniion with one surgeon, however, would like to seek a 2nd and possibly a third opinion. I would like to know your experience with the doctor - and also your experiences post operation - what side effects you had, how long you were out of action from work, and if your cognitive skills were affected. I am really very scared. My concern is that I would no longer be able to do my job that entails a lot of analyses, spreadsheet formulation, use of statistical tools, etc. Appreciate it very much if you can help. Thank you.

Best regards,
Jasmine

Hi Jasmine

I had my aneurysm clipped by Dr Mark Dexter at Westmead Private Hospital, and I will be completely honest - I think he is almost a god! He was absolutely fantastic, and although it was done in 2004, I saw him for a routine follow up last year, and he also treated my friend's mother - she had terminal brain cancer, so her outcome was not good, but once again, he was fantastic - caring, compassionate and incredibly talented - even the nurses love him (and that says a lot).

I was in hospital for nearly two weeks when I had my surgery - I live in Parkes (Central Western NSW) - five hours from the hospital, so they wanted to keep me there to make sure all was well. I also have a blood disorder that causes me to have low platelets and I have multiple sclerosis - so my risk of bleeding was higher, and recovery rate a little slower.

I am a TAFE teacher, teaching business, word processing, spreadsheets, database etc. I was lucky enough to be able to take six months off work - and I confess I REALLY needed it. Cognitively, I had lots of trouble at first with word finding, short-term memory, processing sequential data/tasks, sensory overload (lights, colours, movement, noise). I also found that the fatigue was crushing and debilitating - especially for the first six weeks or so.

BUT IT GOT A LITTLE BIT BETTER - EVERY DAY

And so did I. We all have our own experiences. I don't know how many of mine are attributable to the aneurysm surgery and how much belongs to my MS - although, I think if you check out other people's posts, my road is similar to many others.

Bear in mind, that when this surgery is done in a controlled environment, by expert doctors, it is very safe - the alternative does not even bear thinking about, so consider it an extraordinary gift to have found it and be able to take control.

Lots of people are able to return to a full workload after six weeks - I guess a lot depends on your age and general health. Dr Dexter told me 'not to rush back' to work. Things may have changed, but I was not allowed to drive for three months after my surgery. I guess you will find out about that when it is finalised.

Keep me posted, ask me anything you like and I will try to help. I assume they are talking about clipping rather than coiling??? Let me know.

Regards

Lyn

Hi Lynn, thanks so much for your quick reply and for sharing with me your post op experiences. Sorry I was not able to reply sooner. I drove to ACT to visit my niece who is studying there. Have not seen her for almost a year. Thanks too for recommending your surgeon - I will call his office to make an appointment. I have seen one surgeon (referred by my GP) who had a good look at my MRA and scan and recommended crationomy (not clipping). The radiologist was in his room and also looked at my scans. My aneursym must be fixed by clipping. Coiling was not recommended. To be really honest, I am very nervous. I understand that each person is different - age, health issues, attitude to surgery, etc - but I have read so many post op experiences on the internet and they have similar side effects as you've described. You were lucky you could be away from work for 6 months. I cannot be away that long, I have limited sick leave days earned, but I will take time off work (even without pay) to recover and I will not force myself to return to work when I am not yet ready. I do have a few questions, I hope you do not mind. When you spoke to Dr. Dexter in your initial consulation/s with him prior to your surgery, did he explain to you in detail the possible side effects? I am asking because the surgeon I saw, he was over confident and he kind of disregarded my questions re side effects. I did spell out some issues about possible memory loss, problems with sensory overload, etc. But he cut me shrot and just said there will be no side effects (assuming operation went well and there are no dramas post op) and I should be back to work on the 4th or 5th week after operation. I still want to see another surgeon and will try to see Dr. Dexter too. Then I have at least seen 3 neurosurgeons and would be able to make a better judgement. My other questions - how long did it take before your memory problems disappeared? And how long before you can say you were able to do your job properly without feeling fatigued and with the same confidence as you had before the operation? I have read so many people's comments that they never returned to their old selves after surgery, they never really recovered completely from memory loss, and some had to do different work after their surgery. The driving bit does not really bother me, I do drive but I live walking distance to a train station and there are also bus stops close to my house. Lynn, I would like to correspond with you, is it possible to write to you directly via email? Thank you! I truly appreciate your kindness. Best regards, Jasmine

Hi Jasmine

No problem at all with emailing me - I just tried to email you, using the Neurotalk 'send an email tool' which said that it meant that the sender would then know my email address. If that doesn't work, send me a private message - click on my profile name, and it should come up with 'send Lynn a private message' and send me you email address.

I will contact you from there.

I know you must have a thousand questions. I too had a craniotomy (naturally with a clipping). Where are they talking about making the incision? Mine went from the top of one ear, across the top of my head, to the top of the other ear - about ten inches long in total. Bear in mind, that was nine years ago, and professional practice may have changed in that time - and it all depends on size, location and type/structure of aneurysm.

We all have our own experiences, although as you have already noticed, there are lots of similarites. My memory problems were at their worst in the first few weeks, and improved steadily over the next couple of months. I found crosswords, sudoku (basic level), word finds, trivia quizzes etc really useful. I will never forget being asked post-op what the sum of 15 and 27 was - and being completely devastated because I couldn't answer it for two days - I used to work in a bank - so horrible!

One thing you will notice, is that if you push yourself too hard, you will pay the price in fatigue, confusion, headaches and in many cases, even the development of depression (which has its roots in physical, emotional and psychological causes - and doesn't discriminate).

Still.....you will get past this.....the love and care of friends, family and people who have been there before you, will help.

I look forward to your email, and remember there is no such thing as a silly question (I am not a medical professional - I can only share personal experiences).

Hugs

Lyn