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Thebelleoftheball

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  1. I really appreciate all the advice, thank you, all!! Daffodil, Skippy, & Win- I'm glad you shared your experiences/inspirations, because any anecdotes such as these give me so much hope!!! Subs & Gemma- The biggest problem is, I can't talk to his medical team. He's at a hospital 2 1/2 hours away, & by the time I get there, rounds are over, or it's the weekend, & the doctors aren't really doing rounds. I wish so much that I could. I have a list of 30+ questions written down for them. Macca, bless your heart- that trapped feeling you had, I know that's what Todd feels, but I know he's trying to break free from it (he's now progressed to moving his head, & yesterday, passed a swallow test & is being given puréed foods in conjunction with the feeding tube). You are correct about how this binds us, as I've never experienced a level of devotion inside of myself as I now have for him. It's very new to me, because in the past, I'm ashamed to say, I'd probably have cut & run if I'd encountered something horrible like this with a boyfriend. The thing is, with this whole SAH ordeal, I've had to glimpse the possibility of living without him, & it made me realize...I can't. So, yes, I hope & pray that small progressions will beget larger & larger progressions, & that I'm as much help to his recovery as I can be.
  2. I am just curious if any of you who have experienced an SAH rupture were placed into a medically-induced coma at any point, & if so, if you'd be willing to describe your experiences. My boyfriend, Todd, suffered such terrible vasospasms, that he had to be placed into a coma, as all other treatments were not stopping the spasms. He was in the coma for about a week, but has been lifted it out of it by being taking off his sedation. I saw him 48 hours after sedation had begun to be lifted. He cannot move or speak, but opens his eyes. I asked him to blink if he could see/hear me- he did! I couldn't believe no one had thought to ask him this yet. I wasn't sure if he could understand me, however, there were a couple of things that happened as he laid there that made me realize he could, the most important being, when I asked him for a smile, I saw the corners of his mouth twitching. I continued encouraging him, & eventually, he was able to produce a short, quick smile (no teeth, but clearly a smile), & did so about a half dozen times when I asked him if he please would. You've never seen someone so overjoyed as I was over something so small- it let me know that he is still with me, & can comprehend what I'm saying, & is trying to respond, which is awesome!! The problem seems to be, it is as though even though his brain can hear/see/think/process, his body & talking are still trapped inside of him. That is why I'm curious if anyone on here has ever experienced anything like this- I want to know what your loved ones did that helped you most through that period of time. I can't stand the idea of my baby being trapped & scared. I told him that I can't imagine how terrified he is, & that I will be with him no matter what in getting through this, & that this entire SAH event/ordeal has not changed my love for him, other than making me realize I love him now more than ever. I told him he will get better, & that we will be married, as we had been discussing. I had my head down as I told him all that, because I'd started to cry, & when I looked back up at him, I saw a giant tear coming from his left eye. I told him, "Baby, please don't cry, it's ok!! I'm glad you are able to hear me & understand me, & I never want to make you cry, but in a way, your tears are reason to be thankful, because your brain is still processing words & feelings, so this is good!!" Anyhow, that's kind of where we are at, so anyone who has experienced anything even remotely similar to what Todd is experiencing, please share with me how long it lasted, your process for overcoming it, what most helped you through it, etc. Thank you so much, & I hope wellness & good health forever for all of you who have survived SAH!!
  3. Thank you all so much for the warm welcome & well wishes for Todd & his recovery!! Sarah- thank you for sharing your experience with vasospasms. Todd had his first procedure (still not sure exactly what it was) Sunday night, one Monday morning, & is having another one today (not sure what time). That's amazing that you have recovered so well, especially given the severity of the vasospasms for you, & that absolutely does give me so much hope! Tina- yes, you & Sarah are right, I think the Internet (outside of finding this website) has been creating more scary thoughts than good ones for me. Win- you have helped simply by sharing that even though you may not have had a great prognosis, you obviously have come away from the SAH very well, & yes- people who have experienced this are exactly who I want to listen to & hear from. Louise- yes, I'm thankful he's in hospital care & getting proper treatment, most definitely! Macca- I believe the reason for keeping his BP high was to try to help the blood flow through the vessels with greater intensity, in order to lessen the likelihood of constriction brought on by the swelling (which is what triggers the vasospasms). & yes, having the opportunity to ask questions has definitely helped ease my mind tremendously! Claudette- very true, & I was able to speak to a nurse yesterday, but for some reason, I just didn't feel very reassured after speaking to her. I'm not sure if I'm able to speak to anyone directly with the neuro doctors at his hospital, but that's definitely a great suggestion about calling Headway or the Brain & Spine Foundation helplines. Are they US-based? I am based in the US, so just curious if I'd be able to call them without any sort of crazy phone bill charge, haha. Again, thank you all very, very much for your kindness, encouragement, & the information you are all sharing with me- it is so very much appreciated!!
  4. Hi, all. My name is Jade, & I am new to all this, so please bear with me if I'm not doing this correctly. So, here is the background of the situation that brings me here: Right now, my boyfriend & the love of my life (his name is Todd, & he is 45) is in the ICU at a hospital 2 1/2 hours away from me. He suffered an SAH on Sunday, April 10, in the evening, while he was in the shower. I did not know what had happened until the next day (Monday) evening, when I called him after work & he told me he felt very sick (had gotten awful headache, vomited, had neck pain, etc.), & had been sleeping on & off since it happened. I urged him to go to the urgent care center by him, & he said he was feeling better, but would call the doctor the next day (Tuesday). He did, & scheduled an appointment for Wednesday. Late afternoon Wednesday, he texted me to tell me the doctor thought he had meningitis, or a brain aneurysm. I figured, surely, if it were an aneurysm, he'd have been sent to the emergency room. He told me a CT scan was planned for Thursday, but that he wasn't sure what time it would be. I received a phone call & voicemail from him Thursday morning (I was still asleep), telling me he was in quarantine in the ER for meningitis. I immediately called him, & was able to speak with him briefly. Later that afternoon, a phone call from his mother informed me that he'd had an aneurysm, & was in surgery for a coiling procedure. I immediately broke down, of course. She called later Thursday evening to tell me his surgery had been successful, & that he'd woken up & was able to speak. I was overjoyed that he came through surgery successfully, & told her I would be headed to hospital to see him Friday after work. When I arrived Friday, he seemed to be doing well, considering he was only a day removed from surgery. He was talking, smiling, able to open his eyes, move his arms & legs, & only seemed groggy/sleepy. They let me stay with him past midnight, & he seemed to be doing well when I left. Saturday was much more difficult- the occupational therapist asked him questions, & he struggled greatly with remembering the answers, & also, w/ his words in general. They told us his blood pressure must be kept high, to avoid "vasospasming". When his lunch arrived, he ate every last bit of it, which delighted me to see he had an appetite. He then became very sleepy (to the point his mother & I could not wake him), although he did kiss me goodbye & say, "I love you", before I had to leave to head home. Yesterday (Sunday, so one week after his SAH occurred), his mother told me he seemed to be doing better, but that they were still concerned about the risk of vasospasming, & were trying to adjust his fluids, salts, etc. accordingly. I called the hospital this morning to learn from the nurses that he'd required a procedure for the vasospasms late last night, was on a ventilator, & would be having a second procedure this morning. When I asked his mother a few hours later how he seemed, she said he was very sleepy prior to the second procedure, & that they'd made him fully unconscious. She told me the doctor said they'd do the procedure (again, I'm still not exactly sure what it is they're doing) as many times as necessary to stop the vasospasms, but from what she gathered, the doctor was indicating that my boyfriend is still remaining very strong through all this. As someone who is geographically removed from her loved one during a terrifying event, I am asking anyone to please give me any advice/information you may have about this situation, based on your experience during your/your loved one's SAH & recovery. Is it normal for me to feel more afraid than I ever have over these vasospasms?? I was so thankful & filled with joy that he survived the SAH, seemed to be cogent afterward, & seemed to be doing well after his coiling procedure, but this vasospasming has me in a panicked, sobbing frenzy. I cannot stop scavenging the Internet trying to find evidence that vasospasming does not necessarily mean fatality or permanent impairment. Please, if you can, help me understand the impact of vasospasming, & share your positive outcomes with me- I'm really, really scared for my boyfriend. Thank you all for reading this, I know it was a lot.
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