So as you guys know, she is awake. She definitely is looking so much better. She is getting her color back on her face. She doesn’t really talk because they just removed the ventilator on saturday and one of her vocal cords is a loose. She whispers. I have a few questions.
Did anyone experience short term memory if so for how long? short term memory is bad. She remembers people but you can go visit her for 2 hrs and once u leave like 1hr later she forgets you were even there. Did any experience that?
Also they mention something about a possible shunt? What exactly is that? Is it viable? will it limit her? is that a forever thing?
Another thing she is very distant with her 11yr old daughter. I am thinking its because she was mad at her before her bleed can her memory still be from when she was mad at her? I am worried about that because I think my niece is noticing her mom being distant with her…
Aside from those things she continues to do well. She started to eat liquids today :0)
Thanks you guys everyone has been to helpful and nice i cant wait to show her this site…
When my son Jake first woke up he had major problems with his memory. He kind of knew who we were, but not our names. I remember taking his little brother Aidan in to see him, as we hadnt allowed him to see him when he was hooked up to all the machines. So it had been about 5 days since they’d seen each other. Jakes face lit up, such a true smile, and I knew that he knew who Aidan was. He couldnt say his name though. As he progressed over the next few days he knew all of us, but I think he still forgot who’d been in to see him etc. I think some of it is down to the drugs they use. Jake was on morphine, among other things, and they take a while to get out of your system,
As he improved over the next week or so we talked to him about school, and he couldnt remember his friends, so we brought in photoss and drawings they had done for him. It started to come back, slowly. We palyed his favourite songs, talked about his football team (something else he couldnt remember).
Over a couple of weeks most of it came back. Some of it never will, he has forgotten how to read, so we are working on that, and he is making great progress.
You just need to give it a bit of time, talk to her, show her pictures, play her music or sing to her!
As for your neice, just try to reassure her. Tell her that her mum isnt herself, try to convince her not to take it personally. It will get better I’m sure.
Wishing you and your sister luck
Jaynie
I thank you soooo much for sharing ur Jakes story. I know memory lost is part of the recovery but since ive never been around people who have suffered such condition its very reassuring to know my sister isnt the only one. Her husband called me last night and asked me based on what i read if that was normal and I told him yes but also told myself the same thing. He has been there for her since day one everyday in the hospital. She was in a induced coma for 17days and its a week tomorrow she has been awake. So I am sure it will take her a while to remember things. As for her daughter she is in counseling and her counselor called me today and I updated her about how my sister has been treating her daughter so If she notices something in their therapy session she can talk to my niece so she can understand mommy isnt herself yet… Its hard…
But thanks so much again for her story… Hope jack dontinues to improve… keep us posted…
Short term memory loss is very common with any type of brain injury. For me it was terrible in the first few months following my bleed. It has improved a great deal, but I have to admit, I still forget things from time to time. It’s very random, no rhyme or reason. I just have to make sure I write everything down because I never know what I might not remember. As for your niece, counseling is a great idea. I would seriously doubt your sister would still be angry at her for something that happened before the bleed. I was hesitant to see my daughters too. They were kept away for the first few weeks, while I was still in a coma. It was over a month before I saw them. I was a little nervous that they wouldn’t want to come near me or that they’d be afraid. That could be part of the problem with your sister. Also emotional problems are common after a brain injury as well. Who knows what’s she’s really feeling? But, as the recovers she’ll be able to express more.
Thanks Trish, Her memory is something that scared me. Like i told JACKS mom (above) she is in and out, she remembers things from the past but her present very short. I haven’t seen her since Sunday I am going today at 8 to spend an hr with her. The doctors told her husband they will attempt to remove the tube that is driaining the fluid and monitor it. Hoping she will not need a shunt. They also mentioned they want to do another angio on monday or tueday. They havent said much about operating but its something they are highly considering. My sister is a fighter and has came along way I have not doubt in my mind that she wouldnt recover 100%. I am so desperate for her to get well so she can share her story with you guys altho ya already know but hearing it from her would be that much special. i am Thankful for everyone of your guys esp the regulars like you and barbara and a few others who really keep me educated about what to expect. Its funny because i work for a doctor and he and I are really close and I am constantly asking him a million questions and altho I trust his answers I go and ask you guys the same question… Its been a long 24days since her bleed who would have every known. I view so differently now I can just imagine how she will view life after this. Life is so short and can be taken away from you as quick as it was given to you. I cant wait till everything goes back to normal. Her daughters birthday is on sept 28th she will be 12. We are planning on cutting the cake at the hospital. I hope by then my sister can speak better, right now her voice is very raspy.
One question. My sister had a angio before but she was still in coma, do u know how people normally wake up from that procedure? I am hoping they dont do it on her daughters birthday but if they did i would like to know what to expect when she wakes up???
Thanks a million and I am very happy you continue to do well and dont worry writing things down so you can remember even a person who has never had a brina injury does that… (points at myself :o)
Hi Nina. Please remember baby steps…when it comes to healing of the brain. I know how much you want her to be well again. That will come with time. In the meantime…hug and kiss your niece and wish her Happy Birthday!
thanks, and yeah I know baby steps :0) I went to see her last night, She has gotten so strong and actually and a more funnier personality. She is still very confused but expected. Her Left hand on sunday was not strong at all. Today she was playing catch with her husband It was very emotional for me to see her do that in less then a week. The brain is such an amazing organ, Makes me want to learn more and more about it. …
I can’t really answer the angio question. I was in a coma for all of mine too! Don’t be too concerned about her memory. It will improve but it takes time. And just a word of advice…Everything will never go back to “normal”. Your sister will have to define what her new normal is but it will probably never again be like it was before her bleed. The brain is an amazing thing and I am constantly surprised at how it can recover. I look forward to getting to know your sister once she is recovered enough to want to share her story. Tell your niece happy birthday from us. (I also have a 12 year old)
I had a number of Angiograms while I was being treated. Being the research nut that I am and also seeing alot of information on this site with respect to Angiograms, this is considered the Gold Standard of procedures that they can do to see and monitor an AVM. MRIs aren’t as clear as images from an AngioGram. I was awake for all of my Angiograms with the exception of the night when they did my embolization. After the Angiogram is complete, you have to lay flat for atleast 6 hours to completely seal the area in the femora artery. When your sister gets back from her Angiogram, she will be awake and she may feel a bit sore near the femora artery until that seals and heals. She will also have to lay flat for 6 hours so her back may be a bit sore as well. I am so happy to hear that your sister is getting stronger each day and my best wishes and many prayers are still being said for her during this trial she is fighting her way thru!
Did any of you’s have her AVM surgically removed?
how was it waking up from that?
Did your hair grow back the same?
does the scar hurt?
did u go home with the staples still in ur head?
I had my AVM surgically removed. I was slowly taken off the drugs that they had used to keep me in a coma until my surgery. I don’t remember it but my husband tells me that I was responsive pretty quickly. My head was completely shaved per my husband’s request because my hair had gotten so matted it was impossible to get a brush through it. Also since they would have had to shave almost half of it anyway he just told them to shave it all. My hair actually grew back a bit curlier, believe it or not. I did not go home with staples, those were removed several days after the surgery. The scar did hurt, quite a lot. Even now, over 3 years later, it can still hurt if I happen to lay on it wrong. And, the weather reeks havoc on my head now! My scar itches and tingles when it’s cloudy and when it rains. A lot of doctors don’t believe it, but many people here experience similar things.
I believe u about ur scar. I get a weird feeling in my knee when its ugly out. Well the doctors mentioned something about surgery today to my sisters husband. I told him before they touch her I have questions. I told him to try to book an appt with them to discuss her operation. I would love to now see her ct and mri pictures now that i understand better what i am looking at. I am very nervous just because we finally got her awake and talking and moving dont want to see her in coma again it was very hard for us but i guess what ever they need to do to provide her with a better life :0( I appreciate life but when it comes to getting sick its like damn why??? You have people who raped kids or murder people who live for years in perfect health physically then we have people who are average people work, taking care of family for the rules and laws those are the people that get sick. I guess thats just the way things work. My sisters hair is half cut. I dont know if her husband is going to request it to be completely cut because he says she can wear a bandana and show some hair in the back. lol i think when my sister recovers she is going to just chop it off… She has straight hair, I am curious to see how is grows back… :0) I am looking into rehab centers in two weeks they going to send her to an inpatient center. Dont know if they should send her to one by her house or in the hospital she is already in. The hospital is 35 min drive from her house. She lives in C.T and the hospital is in NYC… … Any suggested on what i should make she the rehab has before i pick one???
Hi Nina. I was shaved totally bald. I left the hospital with staples in my head. Since your sister is not having chemotherapy or radiation done…my guess is it will grow back the same. Never had a problem with my scar hurting me. It may depend on the location of the scar.
I went shopping as soon as I got out of the hospital…great therapy…LOL. Anyway, everywhere I went people started to hug me and tell me about their relatives and friends who were fighting some kind of an illness. It was an amazing experience!
The rehab center I went to was in the hospital where I had my surgery. They actually have a really great inpatient rehab facility because they have a stroke center in that hospital. I’ve been to lots of rehab centers and they all kind of look the same. They have the same type of equipment. I guess the questions would be different depending on what your sister needs the rehab for. I had intense 5-6 hour, 5 days a week, therapy. Physical, occupational, and speech. The biggest challenge for me initially was the physical therapy. Being in a coma for 3 weeks zaped me completely of any strength. I had to learn to walk again, etc. The speech therapy was bascially because I wasn’t able to swallow at first and then it was to help regain some cognitive function. The occupational therapy was to help me do every day things. It seems that your sister will probably need at least physical therapy and speech therapy. I would imagine that most reputable rehab centers have licensed therapists. You may want to ask how long they think she may need rehab and if she will require out patient rehab once she’s able to leave the inpatient facilty. A lot of that depends on insurance too. Sad, but true. I had really great health insurance at the time, I was lucky. But a lot of insurance doesn’t pay for a great deal of therapy, especially out patient. So you may ask her husband to check in to that.
Hey I went through all of that, still having a hard time with my short term memory. It will probably get better over time. She may not be back to the way she was before all of this but time will tell and it will take some work on her part. Hang in there!
Hi, Jake had a few angios while he was unconscious. Then we had to go back for a follow up a couple of months later. There was a big cock up at the hospital, they’d only booked him into a day unit as they thought he was only having an mri scan. Anyway to cut a long story short, he ended up reacting badly to the anaesthetic and couldn’t stop being sick - they think it was probably a combination of anaesthetic and the dye they use in the angio. But I guess your sister won’t have anaesthetic as they usually keep adults awake. He had to stay overnight - my request as they were trying to send him home, I refused to leave! He was ok though, there was no confusion or anything like that, just a bit of dizzyness and then the sickness. I also think they tried to sit him up too soon. From what Ive read on here they keep patients flat for 6 hours to allow the artery to close up etc, but they had Jake starting to sit up after a couple of hours - that was when the sickness started actually, it was probably far too soon.
Im sure your sis will be fine, just expect her to be a little drowsy to start with, and she will have to remain flat. She will probably have a little bit of a headache and may be feeling sickly. It will be a shame if they do it on your neicers birthday - could you maybe put her birthday back a day?
We put Jakes little brothers third birthday back a week, so that Jake could be able to spend it with him.
Wishing you luck xx
the short-term memory, it’s going to be a little different for everyone, but I had a friend in the hospital who had terrible memory loss and within 4 years he was back to work.
God will hold you all trough this, don’t give up hope
Don’t be too concerned about her memory. It will improve but it takes time. And just a word of advice…Everything will never go back to “normal”. Your sister will have to define what her new normal is but it will probably never again be like it was before her bleed. The brain is an amazing thing and I am constantly surprised at how it can recover. I look forward to getting to know your sister once she is recovered enough to want to share her story. Tell your niece happy birthday from us. (I also have a 12 year old)