txbibi Posted June 17, 2006 Share Posted June 17, 2006 Hello:) I have a few questions. First, is my husband had a stroke 1week ago and has the locked-in syndrome. I am a little confused, I can get him to open his eyes, move his right foot and sometimes squeeze my hand. The doctors said that there is not hope for him. But if he can move then why are they so set that I should remove the Vent? He breaths on his own with just a push from the machine. If anyone could help me this I would appreciate it. Ho Link to comment Share on other sites More sharing options...
Guest lwisman Posted June 17, 2006 Share Posted June 17, 2006 txbibi, It is only a week out from his stroke. It is new. It is too early to predict how much he will get back. Most doctors at your point out from a stroke tend to be pessimistic. I have no idea why. Maybe it is to prepare families for the worse. There are many people on this network who have miracle stories, including those who were locked in. My family was told that there was a 90% chance I would die, and that was nine years ago. But, they quit predicting me death after two weeks. You really don't know. Don't give up hope and continue to reach out to your husband. In addition be prepared to be an advocate for him to the medical team. If they know you are watching and rooting for him they will tend to give better care. Keep pushing for therapies, etc. You never know what he will get back. Give it some time. BTW, how old is he? This can make a big difference in recovery. Younger people tend to have more recovery. Some times in the very old, stroke is a sign that the body is slowing down and getting ready to die. In younger people this is not true. Good luck to you and your husband. Link to comment Share on other sites More sharing options...
kkholt Posted June 18, 2006 Share Posted June 18, 2006 Hi There, I think as you cruise through the site you will see there are many survivors here who have proved their doctors wrong -- The url below is an incredible story of one of the members on this site - she has a video at the bottom of her home page that is very much worth viewing. http://katesjourney.com/index.html -Karen Link to comment Share on other sites More sharing options...
Guest veggie.vampire Posted June 18, 2006 Share Posted June 18, 2006 I was locked in and my husband was told I'd die. Staff believed, I heard them talk and was terrified. Spent time on life support and with a trachy but very much here. Took 2 months to move a thing other than blink. Now 17 months in I breath normal air, left limbs are normal, stand with help; the doctors do get it wrong sometimes. A recovery (sure, maybe not total) is possible, where there is any life there's hope. To help him, be positive, trust me he'll feed off it. As was said, in stroke terms a week is very early to try to predict. Good luck. Diane Link to comment Share on other sites More sharing options...
fking Posted June 18, 2006 Share Posted June 18, 2006 Txbibi, I'd just like to welcome you to the site right now. I'm not that knowledgeable on the lock-in syndrome, but I would guess the doctors make the same statements to many caregivers about their loved ones condition. Very often what they say just doesn't hold water. The thing we do know is he has survived and there are many factors to be determined in his long term diagnoses since each person and their stroke is a bit different from another persons stroke. So many members here has been told the same thing you were told and it simply did not come true. In my mind and beliefs, God is the judge, his grace and mercy prevails every time. I've said to myself boy, I should have been a gonna, but it wasn't in Gods plan, he didn't call out my name, I'm still here. Again, welcome, and I certainly hope you are able to log on whenever possible to really be a talking member and particapate in the board Forums. You will learn a lot and contribute as well. We are here to help you and some members are well versed in the vent and breathing experiences and should be able to give you some insight to your question. One week, even one month out is a short time with stroke recovery, so stay tuned for replies to limit your confusion and perhaps give you a sense of understanding about your husband's situation from their own experiences with their loved ones. We are very glad you found us and became a registered member. Our short term goal is to reach the 5,000 membership mark this year and help more people know about stroke recovery without the confusion or myths they heard about in the past. In my case, I had no idea of stroke signs or anything about strokes until I joined this wonderful organization. There is a lot to learn here, so check in often and let's talk and help each other. Link to comment Share on other sites More sharing options...
PureStirling Posted June 19, 2006 Share Posted June 19, 2006 HI txbibi, I should be dead, doctor told me 85-90 % of people with my injuries die . I yhink they want to prepare the family. Doctor's are not God's they do not make such decisions, all we can do wait. My father was a severe diabetic for 50 years it finally took himat 55 years old.Doctor's do not really know Kent Link to comment Share on other sites More sharing options...
Founder and Owner smallory Posted June 20, 2006 Founder and Owner Share Posted June 20, 2006 I was locked in for nearly 3 weeks. I know people who are locked in even longer. I was on a vent for almost 2 months exactly and that was not a big deal for my doctor. I don't know the specifics of your husbands condition. Is there more to this that you have not told us? Based on what we know your husband sounds like he has a while to go before anybody can say what will really happen to him. Things almost always improve with time. You have to be pretty patient. Your husband has to set goals for himself. Just take one step at a time. First thing will be to improve from being locked in. I don't know what will be second but communications should be a top priority. Communications is extremely important and chances are that he can communicate with eyes blinking right now, locked in and all! Please, keep us informed. Link to comment Share on other sites More sharing options...
4mom Posted June 20, 2006 Share Posted June 20, 2006 I am the caregiver to my mother who was also locked in. She had her stroke at the age of 55. We were told that her prognosis was poor and that she had a 1 in a million chance of surviving. She was locked in for about a week. She was only able to move her eyes up and down. Her mind was completely there but she was unable to communicate other than by blinking for yes and no. She was on life support for about 2 weeks before they started to weing her off. She had a trech for about 2 months. The first thing she moved was her right foot. Then she began to move her head. It has been almost 2 years and the progress has been extremely slow, but she is here. I think it is a good sign that he is moving his foot and squeezing your hand. It means that there is some flow of blood. That is what her Dr. told us when she started to move. Do not let them force you into a decision you are not ready to make. Take your time. 1 week out is so soon. Make it clear that you are not giving up on him and you won't let the doctors either. It will be a rough road. Make sure to do range of motion excercises with him. They are so important. Once the muscles tighten it is so hard to get the range back. If you have any questions feel free to Pm me. We have been through it and I know how hard it is. Many prayers Ruth Link to comment Share on other sites More sharing options...
mikisteph Posted June 21, 2006 Share Posted June 21, 2006 Hello, I would like to add my support to what Ruth has said. My mother died after a stroke a couple of years ago, not as a result of the stroke but because on the advice of the doctors the remainder of my family agreed nothing could be done so she was allowed to die. Since then members of the family have found out much more but it does my mother no good as she is already dead. My message to you is do what you think and do not listen to the doctors as they often have another agenda. In the UK there is a program on the BBC called any questions. It is not uncommon for a question about the remit of doctors to be aired. The bottom line appears to be that the only difference between God and doctors is that God does not think he is a doctor. All the bast Mike Link to comment Share on other sites More sharing options...
mikisteph Posted June 21, 2006 Share Posted June 21, 2006 Just to add a vital piece of information, The question was invariably asked by a doctor as they were unhappy about the positions they were being put in and the decisions they were more frequently being asked to make Link to comment Share on other sites More sharing options...
fayeforcure Posted July 7, 2006 Share Posted July 7, 2006 txbibi, I'm sorry to hear about what's happening with your husband. Please do not let them take him off the vent. My son Jason became locked-in at the age of 7 when he suffered a brainstem stroke ( blocked basilar artery)after a collision ( hyper extension injury caused vertebro-basilar arterial dissection) with another soccer player. He was completely locked-in, with absolutely no movement other than the eyes for pretty much four months. Then, when he was finally put on aspirin, he regained some movement in his right arm. He has movement throughout his body now, but is still unable to do anything for himself but feed himself. Jason is now 16 years old. Here is how I keep hope alive: I keep advocating for a cure. Of course first you must spent time maximizing any possible recovery for your husband. I did that the first 4-5 years, and now we just work to maintain what he has. Link to comment Share on other sites More sharing options...
kirby Posted July 10, 2006 Share Posted July 10, 2006 Hi Txbibi, I was locked in for 3 weeks. Please don't let them take your husband off the vent. I knew everything that was going on around me, I can still remember conversations between nurses, my family, things going on around me, everything. I couldn't move at all at first, then after about a week and a half I could blink, once for yes, twice for no. Even just that opened up my world, and the first movement I made was my foot. I was vent'ed for those 3 weeks. Give him more time, it takes time.<<Hugs>> Maggie Hi Txbibi, I was locked in for 3 weeks. Please don't let them take your husband off the vent. I knew everything that was going on around me, I can still remember conversations between nurses, my family, things going on around me, everything. I couldn't move at all at first, then after about a week and a half I could blink, once for yes, twice for no. Even just that opened up my world, and the first movement I made was my foot. I was vent'ed for those 3 weeks. Give him more time, it takes time.<<Hugs>> Maggie Hi Txbibi, I was locked in for 3 weeks. Please don't let them take your husband off the vent. I knew everything that was going on around me, I can still remember conversations between nurses, my family, things going on around me, everything. I couldn't move at all at first, then after about a week and a half I could blink, once for yes, twice for no. Even just that opened up my world, and the first movement I made was my foot. I was vent'ed for those 3 weeks. Give him more time, it takes time.<<Hugs>> Maggie Link to comment Share on other sites More sharing options...
4mom Posted July 10, 2006 Share Posted July 10, 2006 Any updates on your husband? I hope everything is ok. I have been thinking about you allot and watching for a new post. If you find the time please let us know how everything is going. Take care Ruth Link to comment Share on other sites More sharing options...
txbibi Posted July 17, 2006 Author Share Posted July 17, 2006 :Clap-Hands: :Clap-Hands: Hello Everyone:) I want to Thank everyone for your support and I am sorry I have not responded before now:) My darling Hubby is now moving all parts of his body...more on the right than the left. Locked-in for 3wks.Off the Vent for 2 wks now. Still has the TRACHY that he still tries to pull out!!! I remember being pressured to make a decesion that I thought I never would have to make. I came home from the CCU, and I found your site, I told everyone about this site and how ya told me not to give up and I did not give up on him. Abe (thats my DH) is in Rehab since 7/11..He is talking and starting eating on Friday 7/14. DH turned 44 in the CCU. I think that he is getting depressed!!!! I have returned back to work and taking care of our 3dd, so I dont get to stay but after work and on wkends. He wants be to stay with him all the time. I have been told he does not want to do PT!! He only wants to come home. I have explained over and over how he can come home and he understands. So now I have to get family to assist on M-F, which is hard for me. My parents are not in the best health, my oldest dd does not drive in the big city. Abe family is not reliable. How can I Abe going? He has came soooo far!!!! Any hints on what its going to be like when Abe comes home? Txbibi:) Link to comment Share on other sites More sharing options...
swilkinson Posted July 17, 2006 Share Posted July 17, 2006 txbibi I guess you need to convince him that it is doing the PT that will bring him home sooner. He has a long way to go before you and your family can manage him at home. I spent a lot of time with my husband while he was in rehab so I was with him when he did PT, OT etc and helped him with it. That may not be possible for you but at some stage you will need more time off so you can learn what will have to be done when he comes home. In the meantime if you can rally a few friends and family members to visit and keep his spirits up that might help keep depression at bay. And have guestbook they can sign so you know who came and when if he forgets. Our friends really did rally for the visiting and I am sure that contributed to Ray coming home when he did. Good luck with all you have on your plate right now. Keep eating well, get plenty of rest and you will be ready for him when he is considered ready to come home. Sue, a fellow caregiver. Link to comment Share on other sites More sharing options...
Mrs. Simons Posted October 25, 2006 Share Posted October 25, 2006 Hi My husband has been locked in since Feb. this year. Since you are now his voice, you must relay your husband's desire to recover and survive this incident. The Dr's are always very Pessimestic about this type of stroke and I was continually asked about his desire to recover. The first 3/4 weeks after a brain stem stroke is a period of survival. I will pray for your husband's recovery and for the Lord to give you patience with the medical staff who will unfortunately focus on the grim prognosis for recovery. The truth is they don't know at this early stage exactly what your husband may or may not be capable of in the future. Don't give up-I know from personal experience how hard your situation is so for now give your husband the support he needs to survive this incident. Physical and Speech therapist will be evaluating him and it is of the utmost importance that they realize that the first month after a brain stem stroke is one of healing and recovery of the body through rest. Please feel free to PM me anytime. I've been dealing with many different issues w/my husband, we have 3 daughters and I am still looking for a viable rehab facility option for him. My husband also communicates with his eyes. up=yes down=no. Hang in there and I hope to hear from you again. Great to have you in the network. Hope we can help Sincerely, Mrs. Simons (Ellen) Please PM, if you'd rather contact me that way. Sometimes a public forum is a little hard @ first. ----------------------------------- Your post giving out your email address and/or providing your personal contact information has been edited. This was done for privacy and security reasons. Our organization purposely masks this information about members in order to prevent spam and other abuses of personal information. Hope you understand. Please exchange contact information privately through your Personal Messanger. MBA: JR Link to comment Share on other sites More sharing options...
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