Life with an aneurysm survivor

General personal-stories
1

Hi…my husband suffered a ruptured aneurysm on 29th march, 2011 and subsequently underwent a neurosurgical clipping. His prognosis on admission was extremely poor but since the surgery he has shown immense improvement.
As we approach his first anniversary :slight_smile: I reflect back on the year gone by and thank god and his wonderful doctor for the progress that he continues to make. At the same time, I cannot help but hope to see the day when all goes back to “as it was earlier”.

Does that ever happen though ? My husband Gautam is very positive, happy and optimistic - at times, I find myself leaning on him for support rather than the other way round.

As a new member of this foundation, I hope to draw from others experiences and support to get me through this - as positive as my husband is.

Gautam is dysphasic, remembers what happened 10 years ago with remarkable vividity but finds it difficult to recollect what he had for breakfast, drives on his own but finds it hard to read and write.
He has gone back to work part time but does not think he will hold onto his job for long.

How can I help him and my own self?
I have seen and read numerous cases of aneurysm survivors coming through with a near complete recovery. Will Gautam be one of them ?

By no means do I mean to come across as selfish and confused - I just want everything to be as it was and wake up thinking this was a dream. Having said all of this, I am a huge believer in God and I know He is watching out for us. Gautam has a great doctor and I know he has been provided the best healthcare, so I hope I am able to overcome my own fears and self doubt.

2

It is wonderful that you love and care enough about your husband to question all these things...

I guess everyone is different...but I am different since my aneurysm and the surgery...I don't think you find out you have something wrong with your brain and go through all the stuff we go through not to change...but I guess you are asking more about the physical changes then the many emotional changes we go through...

For me...I have a loving husband, who is embracing me being "alive"...he knows that I am different...and sometimes I apologize and he tells me it's ok...he loves me and understands...I guess that is enough for both of us...

Never knowing what the future holds...we try and embrace each new day...with Hubby...and accepting the new changes...and if one day...all goes back to normal...I am not sure what normal is anymore...but if it does...then all the better...

One advice I find is important to all caretakers (usually the spouse)...is to make sure You take time out for YOU...

I am not sure I helped...but it is ok...to feel what you need to feel...as long as eventually we put those feelings in a positive perspective...~ Cyber~prayers your way...Colleen

3

Ruchi, welcome; there are a number of spouses here, who I am so sure will share much w/you. You do have a great anniversay coming up.

Does Gautam have a neurologist? What therapies has he been through? Has he had neuropsych, hearing and

vision testing? Did he go through the driver license testing which may be required by your state? Has his doctor explained the affected, or potentially affected, cranial nerves, which lobe(s), other arteries were affected from the rupture (SAH) and/or the treatment access route? Aphasias vary from expressive to receptive. I still have to read/ outline an article/ book, even fiction. I stopped going to movies and theater; yes, I could "see" some images in memory, but not the story or name of the stars. But, the other night, with a clear sky, I could remember Venus and Jupiter.

There have been so few members here who have stepped forward stating they are the same person with a return to normal life; however, those that do return to normal, may be so active, they do not get involved in groups. Changes for many of us, in a sense, are not that different from other diseases, those treatments, or from TBI. We are not truly unique in our separation from, loss of, what was normal for us.

Prayers for your special one year anniversay celebration and many many more.

Pat

4

I'm glad to hear that your husband is doing well. My wife is a 20 year survivor. Now, you wouldn't know anything was wrong unless you were around her for a while. Some short term memory problems, trouble finding her way to new places, trouble with social situations and odd quirks in her speech. I came here looking for help and support and have found my situation is much better than most. There is no way of knowing how far your husband will progress. Time will tell. We can only hope.

5

Ditto on Mike's response. Eighteen years for my wife and she experiences many of the same problems. Lately she's been adding T's in many common words that don't contain them. We're a little purplexed by this and she can't tell whether it's voluntary or organic in nature.

6

is it wrong to be so relieved to see people who are stuggleing with the same questions. 14 months ago my 53 year old mother had an one rupture. i'm 25 with 3 very young children and i've taken on so much. unfortantly my mothers can't come home. but like your husband can remember things from forever ago very good but breakfast... no... my visits... nope.. i remember in the begaining i would tell her something than wait 5 mins and ask her what i had said and she would have no idea... 14 months and its amazing who our lives have changed.

we were told from the start that she would never be able to live alone and would need 24 hour care. they said on day 2 that there was no way she would ever be like she was.

we have been told by the nursing home shes in that she will not get any better than she is...

they suck! lol

i remember asking for a time machine... it would be so easy to go back to before it happened.

so to answer your question on how to help yourself. i have no idea... i'm looking for that myself

and as to help him... i'm looking for that too.. is he having a hard time reading vision wise or reading for enjoyment ... as in remember enought to read something long.. my mother has a hard time with that but can read enough that we keep a journal ( which she never writes in ) but we write all the important stuff in it and it seems to help her remember things. i'm trying to get her to write what she does thoughout the day so she can look back on it.. but she forgets that she has a memory problem and thinks i'm crazy for asking her to do it.

this probly isn't that helpful. i wish you the best of luck. and if you find something that works let me know.. sometimes i feel so tapped out emotionaly its hard to get a good thought on how to fix it all...

7

My husband had a SAH on April 17, 2011 he made a remarkable recovery. I did and still do the pity thing once in a while and its OK to do this. My husband thinks he is no different than before but he is. My kids like him better because in some ways he acts like a kid. He walks different, has some short term memory loss, mood swings, and is finally after a year getting his motivation back. It is a long constant road! He can work, drive, and for most people fuction as he did before but to me he is a different person than I married. So many people have reminded me there is a before the annie Jay and after and you just have to accept what God has given you!

8

Ed - There are 2 specific problems in my wife's speech that I would like to ask your advise as to how to handle if you've experienced something like this. 1- She often changes subject without any transition, sometimes in mid-sentence. I try to listen carefully but it's confusing and she gets angry when I don't understand that she's not talking about the same thing she was a second ago. 2- She will often speak inappropriately. Much like a little kid. You remember Art Linkletter's show "Kids say the darnest things"? It's often embarassing when we are with friends and causes a lot of arguements when she is with her adult children. I am never successful in heading it off or diverting it to another topic. Thanks.

9

hello,

everyone is different and i think the main deal is time...in the beginning i didnt thinki was going to return to what i now consider to be the new normal...but i learned to have a whole lot of patience and never stop trying to get better,,,i still have short term memory issues anda few small things that i can and will have to live with..i just thank the Lord above i'm still here,,,will keep ur husband in my prayers..and for you to keep up ur strength....it can be done...God bless

10

Michael,

Sorry, the best I can do is speculate. If you know where the location of the rupture or clipping was that might provide some clues as to whether it is located in a speech center. Another possibility to help solve this would be so try and reach out to someone that is involved in speech therapy such as in a specialized rehab center. Broaching this subject with your wife might get a little difficult especially if she is adament about her feelings. If she see's a Neurologist, you might consider sending a confidential note to the doctor advising of this problem but also let them know to please handle it sensitively. Hope these thoughts help.

Ed

11

Thanks, Ed. I was hoping that someone else had seen a similar problem but I guess every survivor is different. The clipping was in the right temperal lobe which does deal with language in a wholistic or global sort of way. She is not seeing a neurologist. I did insist several years ago that she be tested by the state rehab division. I was hoping they might either point us toward some therapy or job assistance. It was very upsetting to her because there were so many things on the tests she could not do. I don't know how accurate they were as far as this kind of condition but they showed damage in all areas not just language. We got no help at all from the state rehab folks. On the advise of my minister, I have started looking for some professional help again. My being here is part of that. Thanks.

12

I know what you mean. There is a before and an after person. I don't know if it's good or bad but I didn't know the before Cindy. We met some 2-3 years after her clipping. There are times I get frustrated and times I lose patience. Having read some of the storys here I feel guilty because it could be a lot worse. Yeah, a lot of it is a matter of just accepting.

13

My wife had her SAH on October 1, 2011. She came home on March 1 after rehab. Her physical recovery has been amazing. But like others here, her short term memory is severely affected. She also has trouble with her vision and suffers some dizziness. Of course the standard line is that each patient is different and will come back to different functional levels. At times I get frustrated but it is good to have her home.

When she was in the hospital and in rehab I thought my life was challenging, turns out, it is much more challenging now that she is back. I have hired a full time aide because she can't be left alone at this point. I am bringing her to a Neurol Psychologist next month for testing. I am hoping they will be able to help her.

14

Ed and Michael...and All...geared here for longevitiy of their situations...

Have either/both wives had neuropsychology testing; any aphasia/speech therapy?

There are many aphasias, the main we hear/read are Broca's and Wernicke's...the expressive and receptive... Broca's relates to the frontal lobe area; Wernicke's to temporal lobe (and, the CN VIII vestibulocochlear nerve) for what is "heard" and transmitted to thinking/memory, etc.

I have in my records: receptive, expressive, global, anomia, alexia, and dysnomia (sp? - may be dysphasia?) and, there are another half a dozen or more terms/types on-line... they all relate to slightly diff locations in the brain (neighbors) One of them refers to reading/writing vs hearing / conversing, and so much more.

Re: reading/comprehension somehow got started in vision therapy, and, helped writing and memory (slowly) I - could -have - read- each - word...but not able to turn around and tell you what I read or what it meant. When one word would 'catch' old memory (vice versa?), I would save the article (yet clearing squalor.) My humor is that it is now my pre-estate cleaning...and, I am yet so slow.

All so aggravating...at times I "see" a word floating in my brain and cannot bring it to speech; other times I say a wrong word; i.e. during a snow, told a friend that a rabbit was at top of street light...it was a crow; this word popped out; did not float in my brain unable to get to speech. It's so frustrating; sometimes when typing, an odd, unrelated word, will be typed in.

Worse, on a fatigue day, it can all slip backwards...

I think the aphasias are not being addressed well for many of us.

Wishing you a great weekend...

15

As far as I know my wife has not been specifically tested for aphasia. I am a school teacher and have some small training with recognizing behaviors. She has some noun aphasia, unable to say the word for a thing. More troubling is that she often jumps from one subject to the next in mid sentence. I try to listen very hard but am sometimes left confused as to what she is talking about. This is all on the expressive side. Although she has trouble learning new things if I write it out and we go over it several times she gets it. This seems more short term to long term memory than aphasia. I don't expect to be able to 'fix' her difficulties. I just need some tools to cope with it and help her compensate for it.

16

it seems to me you are helping more than you'll ever know- you sound super supportive and caring and it shows in that he is happy and positive,also i think you can help you by not "beating yourself up"i think your already doing a great job-this is not easy,we learn as we go.Maybe try to accentuate the positives like his driving ability and the fact he has gone back to work,you don't realize how much you;ve been blessed-he's only 1 year,the reading & writing will get better- iam living proof-i am almost 3 years & can't drive or work-I'm not complaining,i thank God every day for the little things i can now do like tie my shoes & dress,a year ago i wouldn't be up at midnight typing!reading is still very annoying since i cant see the left side & i lose which line i;m on,please don't lose faith-God is with us,the surgeon told my family my best case scenario is a nursing home for the rest of my life-he was wrong.fear & self doubt are the enemy We shall overcome-Good luck &may God Bless you and yours

17

Michael;

You, Ed and many others have been so great in supporting/leading spouses, family.

What keeps surprising me is that the neuros and PCPs have not recommended the testing and potential therapies. Besides the potential for the patient, it could have so many advantages for all you supporters...from hubby to a salaried caregiver.

I would not expect you or others to' 'fix' something, but I pray you all ask the docs about the potentials. And, perhaps it will open more doors for others on the testing and therapies.

18

Ok as far as doctors... I met my wife a couple years after her aneurysm and don't know all the details. She had a great surgeon but I don't think she got a lot of after care beyond the physical recovering from surgery stuff. When I met her she was not under any doctor's care for her aneurysm and she has not been since. I am currently an unemployed school teacher and we have no insurance so I can't see seeking out a top neurologist or psychologist at this point. She did go through a state rehab evaluation about 8 years ago. She was very upset by it and the rehab folks had nothing to offer her once we finished. Had she needed to learn basic self care skills, yes, but higher level skills, no. I was hoping in coming here someone might have encounter similar problems and have helpful advise as to how they dealt with them.

19

Thank you, Pat.

Ed

20

Hi There,

It is hard to imagine (know it is true in present economy) teachers being unemployed; then so many survivors who struggle for disability. I do not know the State Rehab test; do know Social Security disablity test...

Please, stay in touch w/Ed here, and go onto the group (name blanking on term) for spouses / familiy members.

Also, check your area for a local group; those sponsored by BAF; check into any local stroke group, a TBI group...because brain injury is brain injury...it does not have to be from sports, MVAs, other injuries. At our local group, spouses/family do accompany survivors; not all, some.

There are two other orgs like BAF; TAAF (in CA) and another named after a sports hero (cannot say if player or coach). May want to check our group sites for all that may help you...

Prayers and wishes for you and your wife for best available to you. It is highly important for spouses / family to take care of themselves, their health, too.