survivors

[beagle50]

I would love to hear from survivors of a grade 4 or higher ruptured brain aneurysm.My husband had a grade 4 on Jan. 31, 2009. I need some hope that thing will get better. Can anyone help me?
Thanks, Lori

[Kitty]

Hi Laurie,

I'm not sure what "grade 4" means. I had a rupture 4 years ago, and today I'm doing quite well. But all are different. Healing of the brain does take some time, though. I continued to improve for over a year.

I can't imagine what is it like for you, as I was on the other side of it, but I think it must be quite difficult to see someone you love having these sorts of problems. Hang in there.

[Travelingdueo]

Hi Lori
My husband Ray's was a 3 and he had his clipped Jan 2006
He is still showing improvements but it has taken a very long time.
He has lost his short term memory and could not retain new info past 2 minutes and now 3 years later he has retain some new info. but it takes alot of repeating.
There are little things that I see and when I re-read my notes I had already forgot how bad things were and he has shown so much improvements since then.
So keep the faith that things will get better and just work with him as much a you can- I really did a lot of pushing to do things- like dressing, feeding, and doing childrens work books and puzzles just made the brain have to think.

I recall when he could not tell me a name of an object but he could read it on a card.
He had trouble with talking as the words were all mixed up and now he will make conversations with others... once in a while I notice wrong words being used but it may be I don't notice them anymore.

So how is your husband doing? Is he at home or a care facility?

[NobleNan]

Hi Lori
Like Kitty, I'm not sure what a grade 4 is. I remember asking my husband's neurosurgeon how big his aneurysm was and he just looked and me and said "giant". I know that they rate them on some sort of scale (I believe it is the Glasgow scale) and my husband did not do well with that. His rupture was December 15, 2007. It is now almost 18 months. Like you, I sometimes wonder if it will get any better than it is now. I can safely say though he is MUCH better now than he was at six months post rupture(like your husband). What sort of difficulties is your husband having? Is he home all the time? Do you work? That is something that I am finding quite challenging, working full time and still trying to help him move forward. Take Care - just keep believing.

[lal2llb]

Hi Lori:

I, too, do not know the size but my husband suffered his annie August, 2007 Here we are coming up on two years and I do continue to see improvements. It amazes me things he does remember--i.e. contestants on a reality show yet two minutes after a phone call can't give me the message the person told him to give to me. It just takes time and patience. And patience can be a virtue some days! We were told when my husband was in rehab that people continue to see improvement in themselves even 8 years later. One person told us he felt he was doing so well and then looked back and realized he continued to improve. I think as long as we believe and work towards improvement, then it will continue to happen. If we give up then there's no reason to try. Just keep believing!

Laurie

[beagle50]

Becky,
My husband is home now. He was in a nursing home until May 18th.
I work from home. I run a daycare. Things have been really hard try to take care of my daycare kids and running after him. He is very confused. Some days he doesn't even think this is his house. He talks about strange things all day long and gets mad if I try to correct him. He can't find the bathroom, our bedroom things like that. He wants to be on the go all the time. I'm not getting much help from his family and I'm tired. I don't know how I am going to keep doing this. Do you guys have any suggestions to help me? I feel like I'm dying in side.
lori

[ljt764]

What about an adult day care/rehab? Maybe even just a couple of hours here and there to offer you some respite? It also hasn't been very long since his rupture- even though I'm sure it seems like it! Best wishes-

[Travelingdueo]

Lori
I really understand what you are going thru- my husband did all that and sometimes he still asks if there is a bathroom here. ( been 3 years)
The only thing is, just to be patient with him and give him the answers just like he just asked for the first time...( like last night I'm sitting on the computer and he found this box that his meds came in from the mail and he keeps asking what was in the box and I keep telling him what it was and he ask again 5 mins later.)
I have Ray go to a adult day care 3 days aweek - at the one he goes to they have programs for levels of care.. since I gotten a job and needed him to go all day he is in a level care that is below the one that is geared to his needs but he has improved so much that he is actually a help to them and can help them if needed... is memory is improving where he can keep conversations going in a group or give answers to trivia questions so the help don't have to read to them selves without getting any responses.
So I would check into the day center that will work with him and not just one that lets them sit around.
You mention day care.. does he interact with the kids? Maybe to have him do activities with them? At the first 1 1/2 years I had to work with Ray to get memory issues to work like playing matching games, work books he had trouble with pre-school ones and then he finally was able to do that. we would play yatzee and it was a struggle to write the numbers and then one day he could do the adding.
So if he can do things with the kids, putting puzzles together sorting and etc.
Does he go to any rehabs? Ray was getting out patient for speech and occupation therapy and that helped - even if its an hour my hardest thing was about leaving him- I was and still over protective and I wanted to know what they did and to give me more ideas to work with him at home.
The confussion had lasted for a long time- we tried different drugs but none really helped. It's just a matter of time that the brain gets its new path to help.
One of the things that I used to tell people on how his brain is working is;:
the brain is like a file cabniet with all the files in order for information and then one day someone just knocked it over and all the files are scattered on the floor and the brain is trying to put them back in order but can't find the file it belongs in and put it in the wrong file..
this seems to help some of Ray's family to understand why he is so confussed and that the answers are off the wall.
At the beginning he would get wrong words for what he was telling me things- it was a guessing game as if you try to tell him he would get so frustrated - things did finally get better. A nother thing I did that may help is to use words or pictures for things around the house.., Like the word bathroom on the door what was in the cupboards like dishes or where his clothes are in and made pictures and words on things.
I used alot of post it notes for awhile.l
I hope that some of this helps - ask for help from the family to come and sit with him so you can go out.
I still have fears when we go out as I have lost him in the stores at times. we tried walkie talkies to talk to each other. finally started using a phone just sometimes he will take 3 tries before he would answer it. But it has helped- the first day we got the phone (pre-paid) he walked out of the store- we both went to the bathroom and he got out before me and when I called him he was already outside of the store heading to another store. So that was a big life saver of the phone. but it took him 3 years before he was really ready.
Your husband is only 6 months since so it is going to take some time for the brain to find new paths to correct some of the problems but keep the faith that he will improve and to work with him he is going to take up a lot of your time.. its important to find some one to help you.. even if its only an hour or so please take the time for YOU I took a long time even when someone tells me to .. but when I finally got the time to my self I felt much better to feel the load lift away. wish I did it so much sooner. I waited for over 2 years before I took the help like the day care which was only for 4 hours. once a week to start.
hope things get better and it will as time goes on. but for now ask family or friends to just give you a little time to recoop. Maybe once the family sees how much work they will see for themselves and understand and be willing to help out more.

[Staci]

Lori-

I'm glad to hear from you! I have thought a lot about you this past few weeks.

The grading system usually used is Hunt and Hess. Here is an example of it...

Grade 1: Asymptomatic; or minimal headache and slight nuchal rigidity. Approximate survival rate 70%.
Grade 2: Moderate to severe headache; nuchal rigidity; no neurologic deficit except cranial nerve palsy. 60%.
Grade 3: Drowsy; minimal neurologic deficit. 50%.
Grade 4: Stuporous; moderate to severe hemiparesis; possibly early decerebrate rigidity and vegetative disturbances. 20%.
Grade 5: Deep coma; decerebrate rigidity; moribund. 10%.
Grade 6: Instant Death. 0%

Brian was a grade 4. Honestly, I don't think it necessarily has anything to do with their recovery, it's more a tool to assess chance of survival. I think a better idea would be the location of the aneurysm and extent of the hemorrhage. There are so many factors that affect recovery. I am reading two books right now- one is My Stroke of Insight by Jill Bolte Taylor. I know you might not have much time to read, but it's a great book. She is a neuroanatomist by trade and is VERY good at explaining what happens and what happened to her through her rupture. She had a stroke as a result of her rupture and was pretty aware as she lost many of her functions. Because of her medical background, she knew exactly what was happening to her. I think it's a great story.

The other book I'm reading is also about an aneurysm survivor and it's called Brain, Heal Thyself. It's about a woman who ends up caring for her roommate after her rupture. It talks about how she manages to survive despite the struggles, running out of money, etc...

Do you have home therapy at all? Brian had 6 weeks of in-home therapy. That really helped! He also qualified for skilled nursing which means someone could come and help him shower, shave, brush his teeth, do laundry, simple daily tasks that could just give me a break. We didn't end up taking advantage of it, but you should look into it! Most home therapy is covered by insurance with NO COPAY!

I wish I could tell you things WILL get better or when. I know how hard it is to have patience and how irritating it gets to deal with the same questions or problems or happenings over and over again. I know it was a huge help to me to connect with some people in our area who had suffered ruptures. I know I've mentioned trying to find a support group before, but even just trying to connect with someone who has been through it... I think it would be SO helpful for you. Then again, sometimes I know it just helps to vent about it. I wish I had the magic solution for you. Just hang in there- it is a SLOOOOOWWW process like everyone else has said :)

[wendyv]

Hi Lori,
My name is Wendy. My husband Richard had a grade 4 ruptured aneurysm on Oct 31 2005. He bled twice and had his clipped, he developed hydrocephalus and had a shunt placement at one point he had such severe pressure from brain swelling that they had to remove a piece of his skull for two months to give his brain room to swell. He was in the hospital for 87 days had pnuemonia a shunt infection, blood infection he really had just about every conceivable problem and complication you can have. We are going on 4 years now and I have to tell you his recovery has been amazing. When he came home he had to have 24 hr supervision he did not know where he was, his confusion was massive. He also talked about things that made no sense and had lots of false memories it is called confabulation or confused fabrication when your brain doesnt know the answer it will make something up the person really believes it is the truth they are not doing it on purpose. I also had no real help from family I did have some friends who helped me out. Has your husband had any memory compensation therapy? Richard went to a occupation therapist 2 times a week for nearly a year she taught him compensation techniques that he still uses today a daily planner and a watch with an alarm ect there are alot of things he can use but first he needs a great deal of time to heal. Is he doing any puzzles or games this will help his brain reorganize and make new connections. Richard had 25 % chance of survival those first 21 days in the hospital today while he no longer works he drives he runs errands he cooks he works in the yard he can go fishing and his memory improves everyday. His your husband on medications? Richard was on a blood pressure med which he still takes but they also had him on ritalin and seroquel (antipsychotic) I spoke with his Drs early on within 3 months of him coming home and weened him off everything except blood pressure meds it made a huge difference the other meds where adding to his confusion. Hang in there and try to get some rest take it from me I know where you are I have been there. Richard stays home all day now while I am at work and does fine for the most part. When he is tired he has more problems he is very aware now of what happened to him so sometimes he can become very frustrated but he still continues to improve. You can email me if you need anything wendyvalentine123@yahoo.com I have lots more info to give you if you want it. God bless never give up.
LOVE, WENDYV

[beagle50]

I just got Craig cat scan results and the ventricles are still enlarged. Do you think this is part of his confusion? We go to the neurologist on Monday.

[Staci]

I hope the neurologist has some answers Lori, but yes if the ventricles are enlarged that means hydrocephalus and can definitely cause confusion!

[lal2llb]

The most important thing for you is to get a break whether it's from medical or from family/friends or from daycare. You can get through when you have time away from your spouse. That sounds cruel but you can't repeat things 24 hours a day 7 days a week and still be patient. Some days the patience runs thin. I have companions during the day so I can work. I'm very, very lucky and I know it. It is hard to keep life going while keeping your spouse moving forward. Hopefully the doctors will help find a correction to your current situation. That seems to be what we do, find answers and solutions and move forward to the next situation. It does get better. It takes time. When they tell you at the hospital it will be a long time and you say I know, you don't know. I'm still learning what that means at almost two years now. They told me we aren't sprinting, we're running a marathon. We need to find ways to keep our stamina up. Hang in there.

[beagle50]

Craig had surgery on Wednesday. We are now on shunt number 3. We came home last night. So far I haven't noticed any change, but I know it takes time.Please keep us in your thoughts.
Lori

[Beachgirl]

Hi Lori, I'm keeping both you and Craig in my thoughts and prayers. Fingers crossed that this third shunt will help improve things. Hang in there.

Hugs,

Nat xx

[19steve53]

Hi Lori, My name is Steve I am a grade 4 survior, but mine was Oct. 1996 and I had 3 surgerys in a 48 hour period. The clipping and several hematomas. Today I am still improving, I go to all the BA support group meetings every month . I help out in the Neurology office, filling paper work, and I volunteer for BRAIN ANEURYSM WEEK every Sept. been doing it 12 yrs. Good luck and with time and humor and the willingness to get buy it will happen. Take care. spmcauliffe@verizon.net

[19steve53]

Hi Lori, I tried to get back to you but the e-mail is invalid,HELP Steve spmcauliffe@verizon.net