new and discouraged

[swirlgirl]

Hi,
I was on MGH years ago in the fibro forum(I was "singlemom") Now I"m on here in the forum because my mother (she's 60) recently had an aneurysm hemorrage. It was a subarachnoid aneurysm at the basilar apex. She survived that and they couldn't do a coil, so they had to do a clip. They sent her via helicopter to a top notch hospital in Chicago. She had the surgery, then had the vasospasms. At first she was awake and just sleepy. But the spasms were very severe and couldn't treat all them due to a congential defect in her vessels in her brain (she has a split vessel and they couldn't get the instruments in due to the smaller size, without risk of rupturing it again) She had a "large" stroke and swelling,they did a "bone flap" as a result. She has been unconscious for about a week now. The doctors think that she will have severe language deficets. She may not even be able to understand language. We are now on day 16.
Today, the doctors started talking about "quality of life" issues.....I just wonder if anyone had anything similar to this happen and recovered. I feel so discouraged. I had really hoped that she would improve. I haven't completely given up hope, but it is fading. What kind of life would she have if she can't communicate at least to her family? If it were only a matter of assistive technology, it would be different. I guess I'm just hoping that someone here will have some insight, words of advice....
I'm leaving again in the morning for the hospital, an hour and a half away if traffic is good. Any thoughts?? Thanks in advance,
Swirlgirl

[phudg]

Hi swirlgirl,

Sorry to hear of your situation. I did not have those complications with my annie and cannot give great insight into it, but I recall reading in the past that some have. So I just wanted to let you know that if you keep checking back you might get some good feedback and keep your chin up. I'll be thinkin of you and your mom.

Love and hugs,

Page

[FireflyR7]

:o I am truly sorry about your Mom!! I have been through similar situations with my grandparents. My grandma died from alshiemer's and grandpa cancer of the bone... (They both ended up in a care facility) It is all so difficult!! :( I will keep you in my prayers, I hope you get a responce from someone in your situation. Sometimes it takes a while because we have Aneurysms too! I had a rupture last June, I am lucky to be here! I am still hombound with headaches, light sensitivity, short term memory. Processing & coordination problems, vision... ... ... It has been a long year+ but I am getting there. The brain takes a long time to heal!! If she comes out of it, she could have permanent damage, but there is not any way to tell?? There is no way to know, some people had paralysis of limbs but regained them over years?? Dr's can't predict the brain!! I am so sorry and I am here if you need someone to talk to!! Take care and I will keep your Mom & family in my prayers! Tricia / FireflyR7 :cool:

[Lyn]

Hi sweetie

First of all, know that you are not alone. Know that there are a lot of members on this board who have faced a situation similar to yours. Know that we understand how frightening all of the uncertainty is.

I was not a carer - I was a patient and luckily they caught mine before it ruptured. But I have experience in caring for someone with end stage cancer - so I do know how awful it is to be powerless and not know what the future holds.

The human brain is VERY slow to heal. Take things one day at a time. Do you have a support network around you? Make sure you are kind to yourself and that you take some time each day to do something just for you. I am not meaning to sound uncaring when I say this, but your mum would want you to take care of your own health.

Feel free to post here anytime, with questions, with opinions or just for a shoulder to cry on if you need it.

Cheers

Lyn

[swirlgirl]

Thanks everyone...
I was at the hosptial today, all day. I can't go every day - I have to work at least some time each week. Work has been very good about it, though.

She also had a stroke ( I posted there as well) and today doctors were referring to it as "massive". It is a left brain stroke in the area of language and speech. We are really just waiting for her to wake up...maybe I"m overly optimistic, probably so, but I want to see when she does wake (doctors seem fairly sure she will) how much she able to do. She would not want to live if she is completely unable to speak or understand language, unable to participate in some manner with her family and friends. I am not giving up hope yet....it is really unknown at this time how extensive the damage is and whether she can understand language.

She did finally open her eyes briefly today when she was being turned, it was the first time in over a week that she has done that. Doctors are not generally optimistic about what she will able to do, but I need to see for myself.

I just look at her sometimes and wonder if she still "in there", if she understands when we talk to her. I do feel that even if she does not understand on a cognitive level, she does understand in her heart. Her poor body is so so bruised..... Sometimes I feel like she knows we are there and she is struggling to wake up, other times, I question whether this is fair to her.

I do have a good support system for which I am so grateful. My father, sisters, family and friends are in frequent contact and often present at the hosptial. We try to take turns.

I feel very grateful that this is here, just to talk to people who have been through similar situations. Thanks for listening....

[Kimbo]

Hang in there!

Strange things happen all the time. Do the best you can. I'll be thinking of you and I'll say a prayer for you too. It is a rough thing to go through and not knowing and worring are the worse part and the part you can't change. Good luck!

[gafey]

Dear Swirlgirl,

My prayers are with you and your mom during this time. It is very difficult for family members in the hospital. My husband had gone through it while I was in the hospital for over a month. I have no memory of it, but he does. Family support is so important - we have a huge family network and I am thankful that they were with him while I was in the hospital.

Take care of yourself too, sometimes we forget the necessities like sleep and food.

Godspeed,

Maria (aka Gafey)

[Kathie]

Hi there "Swirlgirl"
I had a SAH from a Basilar aneurysm in May '04, and was coiled. I also had the dreaded vasospasms. I understand your Mum had a stroke on top of everything. The road back is going to be a long one, you can be sure of that, but it's not impossible. But I'm about 29 months on and doing very well. I was off work for 6 months, the hardest 6 months of my life. But this thing wasn't going to beat me, I had faith.
Don't you or your Mum give up. Stay positive!
In my thoughts and prayers.

[joannef]

Hi Swirlgirl,
Like Kathie, I had a SAH from a ruptured basilar apex annie (July 2005) and I was also coiled (I was surprised to read your mom's annie couldn't be coiled and had to be clipped). Unlike many on this board, I was diagnosed within minutes, so I was very lucky and didn't have a stroke. I also had vasospasms, although they were apparently mild. I spent 3 weeks in the hospital and about 3-4 months recuperating at home.

What I wanted to say was, it is still VERY EARLY in your mom's recovery. I think you said in your first post that it was only day 16. Don't give up hope! A lot can and will happen in the next few months. Speech can come back, or if necessary can be retaught. If your mom has a strong will to relearn what she needs in order to communicate, it will happen. Try to be patient. I know that's hard, but we're all here for you, anytime you need to vent.

There's another member of this board who had a basilar tip annie rupture and was in a coma for many weeks. I'm hoping she'll see your post and chime in here. Hang in there, swirlgirl, and remember to take care of yourself, too.

Hugs,
Joanne

[dawnmn]

Hi Swirlgirl,

Hang in there! I had an rupture basilar annie and was in the hosptial for around seven weeks and then an rehab for four more weeks before I came home. The doctor's are great at what they do and I think sometimes they just want to prepare the family for the worse. I was in an coma for the five weeks some of that time was induced by the doctors so my brain could heal and some was due to the rupture. My test showed brain actively but the doctors were not sure how long the coma would continue or to the extend the brain was damage. My family was told many different things during this time. I do have brain damage but relearned breathing, walking, and speech again while in rehab and in fact the doctors thought that I would be in rehab for 6 months to a year and I was out in four weeks. Is your mom in an induced coma? What is her brain activety?

[Happydaze]

Hi Swirlgirl - So sorry about your Mom. I also had a rupture though I was coiled. I suffered a stroke and vasospasms. I was in intensive care for 18 days and my family was told there was not much hope. -- Well, it took a long time but I am now back at work, driving and enjoying my family. Don't give up hope, its a long, long road to recovery . My prayers will be with your family.

_______________
happydaze

[Addledannie]

Hi Swirlgirl,

My mom had a massive stroke 7 years ago. We didn't think she'd pull through as she was in her 80's-but she did. Her cognition was impaired, and I even wondered if she knew when I visited her. Don't underestimate the brain's power to heal. It can take time, but in a few years she was better - not like she was before of course. Sometimes she could remember details that I forgot, other times she'd forget that I had visited her the day before. I don't want to give you false hope, sweetie, but talk to your mom as if she could understand you, don't talk about her diagnosis in front of her with the docs/nurses (your mom understands more than you think). I'll be thinking and praying for you and your mom.
Addledannie
Non-ruptured small annie, post clipping March 29, 2006, still on the long road to recovery

[swirlgirl]

Thanks to everyone who posted....my mom passed away October 9, 2006.

They couldn't coil it because the "neck" of it was too large. Her surgery was successful. She had some unusual issues though. Mom had a congenital abnormality in the main cerebral artery. Instead of being one long vein, it actually split into two veins, then rejoined. The two smaller sides were too small to do an angioplasty on and they tried keeping her blood pressure higher to prevent the spasms from closing the artery. Her heart couldn't take that and she had a heart attack one night, which they were able to stabilize. That left the option of injecting muscle relaxers directly into the area, which worked 3 out of 4 times. Her brain also continued to swell and they performed a bone flap surgery to allow for swelling. This is fairly routine for them at this hospital. On the fourth attempt to relax the spasms, they were unable to do so. She had a massive left brain stroke. After about a week, we sat down and reviewed the scan with the doctors. About 2/3 of the left side of the brain had been impacted. She would not have been able to understand speech, nor use language. She was paralyzed on the right side, and had some smaller strokes on the right side. Her vision was impacted. She also was allergic to the heparin that coated the swan needle and they believe that is why she developed a clot in her foot. She also most likely would have lost her foot.
The doctors at University of Illinois Chicago did everything within their power to help her. I have no qualms about the care she recieved and know that she was in the best hands. I am extremely grateful to them for their skill, compassion, and care.

My mother was a strong, sassy, Irish woman who would have not wanted to live that way. Had she been able to comprehend speech, maybe it would have been different. There are ways to work with that even if the ability to make speech is lost or impaired. But she could not have understood speech. It was her wish that in a case such as this, that she not go on. We were with her at the end, which was difficult for us. She went peacefully.

An odd thing happened however, just minutes after she passed. My sister's cell phone started going off. It was her alarm on her phone. What was so odd was that earlier in the day, my sister had commented in the room that she had this alarm icon on her phone and had no idea how to use it. Her husband looked at it following this to turn it off. We thought she had accidentally hit a button to set it. He had to go through 3 or 4 menu screen to get to it. We believe it was mom's way of saying, "I'm here now, I'm okay, I love you." It was just beyond coincidence.

Thank you all for your comforting words.
Swirlgirl

[gafey]

Dear Swirlgirl,

My condolences to you and your family for the loss of your mother.

Prayers are with you all,
Gafey

[Scared and depressed]

Do you know what your mom wants you to do right now????? Give her all the love you can - talk to her - touch her - stroke her - even sing to her. Not ven the doctors know what the future days will bring; but faith and love can move mountains. I had a brain stem aneurysm which ruptured; when they got me to the hospital before surgery; the surgeons told me that I should have died or been in a coma and my chances were very poor to wake from the surgery. But I did. Medicine can predict many things but not the human spirit. If mom wants to leave you; or if God calls her home; know that you were with her and gave her all the love you had. Her brain has to calm down and that can take a long time sometimes. A lady in the ICU with me was in a coma for weeks and when her brain was ready to be calmer; she awoke. She has a long time in rehab but she's alive and ready to fight. You're doing all the right things - don't second guess yourself. She knows you're there. I'm sure of it. God bless. Margie