lisac

Hi David, I'm so sorry to hear you're going through a rough time. I agree with Macca... maybe see your doctor, explain how you feel and come up with a pain management plan. It sounds like the pain is large part of your problem. If you can get that under control, I bet you'll feel better physically and mentally. There's no reason you should be suffering every day when there are things that can be done. Has anyone been able to explain the cause of the weak legs and foot pain? Is it neurological? Would physical therapy help? Maybe an EMG test to see if there if the nerves are responding correctly. I'm actually trying acupuncture to help with my frozen shoulders. I've only had one session, but my shoulders definitely have more range of motion. Gotta think outside the box. Anyway, I hope you feel better soon. Take care. Lisa

Well, it sounds like this is just another dip in the post-aneurysm roller coaster. I really want to get off this ride! The depression has been the absolute worst thing for me to deal with. I'm on 2 anti-d's, go to therapy and I'm still struggling daily. Macca, I'm so sorry for what you're going through. I hope it all turns out well and you feel better. You are right about it being hard on our loved ones and I do try to be positive and help myself, but some days it's very difficult. I know what you mean when you said you thought there were more important things in life to worry about than a soccer game. That's how I feel about lots of things too. At the auction, I remember looking around and thinking how shallow the whole thing seemed. Once again, thank you all for your input. It really helps me feel "normal" and not alone. I can't even imagine going through all these strange changes and not having this website to put things in perspective.

I'm almost 4 months post sah and have noticed that my passion for life seems to be missing. I have little interest in things I used to do, even the things I really enjoyed. For example, I used to love going to auctions. We have a house from the early 1900s and going to auctions looking for antiques and collectibles was exciting. There was a huge 2 day auction a few weekends ago which I normally would have been bouncing off the walls to get to. I had absolutely no interest and only went because my husband wanted to. I had several creative hobbies I used to enjoy. I can't even begin to think about them now. I lived to run and bike pre sah. Now my body just doesn't feel or react the same way to physical activity. I'm not sure I have the passion or energy to try to get my body back to the way it was. I just can't seem to find any excitement, happiness or fun in life lately. I'm curious if this is part of depression or a side effect of going through a traumatic event or maybe my "new" personality doesn't care for these things. Does anyone else relate to these feelings or have any insight? Lisa

Hi Kris, Angry and frustrated here too. I'm also having a hard time accepting this new version of me who always has to worry about over-doing it and the consequences if I do. I have a very active husband and friends and I feel like I can't keep up. I've always been an introverted person, but it seems extreme now and I find myself wanting to be alone a lot. Like you Mary, on the weekends I have so many things I want to get done, but run out of steam half way through. I know I should just accept it and not be upset with myself or the situation, but it's difficult. I'll have a good week and think things are finally starting to get better, then something happens. My mood swings down or I start to physically hurt and the cycle starts over. Ugh.

Hi there, I was wondering if your doctor mentioned Meniere's Syndrome. It's a build up of fluid in the middle ear and can cause severe dizziness, nausea, etc. I have had it for years before my sah. It comes and goes. I was prescribed a water pill to get rid of the fluid. Eating salty foods can cause it to act up. I hope you get to the bottom of it soon. Feel better. Lisa

Hi, I'm almost finished with a fantastic book called "When the Air Hits Your Brain: Tales from Neurosurgery" by Frank Vertosick. It's a memoir-type book about this doctor's experience being a neurosurgery resident in a teaching hospital. Very interesting stuff! It's not specifically about SAHs, but there are stories about doing surgery on patients who have them.

David, nice to see another Michigander! What hospital did you go to for your SAH? Well, I guess I'm not alone in being discharged from the dr. after one follow up visit. Just seems strange to me for such a serious thing as brain surgery. MaryB, No, my therapist wasn't arranged through the hospital. I'm actually 500 miles from the hospital I had surgery at. Yes, I live in the sticks! Many people on this site recommended I see a therapist and I took their advice. Glad I did, she has helped me a lot. I didn't know it at the time, but she has some experience with stroke patients which makes it much easier for her to understand what I'm going through. Teechur, Sorry you had a bad day yesterday. Please try and take it easy and listen to your body. My wise therapist also made me realize that I wasn't doing myself any favors by overdoing it. I think it was a coping mechanism... thinking I could do everything I had done before and pretending that nothing was wrong. I didn't want to come to terms with the fact that my body just can't do it all right now. I thought that if I pushed through it and ignored it, it would go away. Not happening!

Thanks everyone for your kind, reassuring words. Since my original post, my mood has leveled out quite a bit. I notice that the lows aren't quite so low and don't last as long. The last time I saw my therapist, I was in tears before I even walked in. It was a bad emotional day. Her suggestion really helped me cope. She said to not think of how I was feeling that day as "the new me" because it wasn't - I have more healing to do. Instead think of it as just how I was feeling THAT day. So simple, but it really stuck home. It still boggles my mind all of the stuff that we have to deal with post SAH that nobody mentioned. When I left the hospital, I thought once the incision healed on my head and I got my strength back all would be good again. Ha! Here we are almost 3 months later and I have frozen shoulders (a side effect of brain surgery, who knew!) and weak arms and legs which my physical therapist thinks is neurological. All I know is it makes it very difficult to jog when my legs want to send me crashing to the ground.

Hi, I'm also from the US - northern Michigan. I was airlifted to the University of Michigan where I spent the required 2 weeks after a SAH. My surgeon was wonderful and I had amazing care. Like everyone, I just received discharge papers with the usual stuff. The hospital has a huge neurosurgery staff and ICU. I can't understand why they don't have someone to talk to patients about what they can REALLY expect after they're discharged. I had a 6 week checkup where the surgeon said I was doing better than expected and released me from his care. I was really surprised by that. Did anyone else only have one follow up visit?? Nobody mentioned anything about having emotional/mood issues, frozen shoulders, weak legs, body aches, weird sensations in my scalp, etc. I'm also very grateful for this site. It has been such a great source of comfort and reassurance. I can't think of anything I'd like to see changed or added. Thank you to all the volunteers who keep it going!

Hi Dawn, welcome! I'm so glad you found the btg website. I was feeling very alone with what I had gone through until I found this site and read other people's experiences. You'll find very supportive and helpful people here. My aneurysm happened on 1/28. I live in northern Michigan and was airlifted to the University of Michigan for surgery where I spent two weeks. I didn't have any problems post surgery and was told I should recover in 6-8 weeks. Not quite happening, but it is getting a little better. Take care. Lisa

Hi, It's been 10 weeks since my craniotomy and clipping. We had a few days of hot weather recently and my scalp around the incision would swell and pull my eyebrow up on that side (I walk around looking quizzical when it's hot!). It also happens when I exercise and start to sweat. Does anyone else notice this happening? I'm curious how long it takes for the incision, nerves and muscles to totally heal. I'm always aware of my scalp on that side. It seems like it's constantly tingling, tickling, pulling, etc. I even notice the numbness moves around... sometimes my forehead, eye or cheek will be numb. So strange! Just wondering if others who had a craniotomy are experiencing similiar things. Lisa

Hi Kris, my therapist suggested using mindfulness when I start to feel upset or like I'm going to cry. Immediately start focusing on your breath (in and out) and bring yourself to the present and notice how your body is feeling (tense, tired, anxious, etc.) and tell yourself a mantra, like, "I'm strong and happy in this moment." It distracts your mind from crying and gives it something else to focus on. It has worked for me quite well. I also do it if I'm thinking of something during my hospital stay that makes me scared or sad. I tell myself, "I'm safe now, that was in the past." This would probably work with laughing too. Hope it helps. Lisa

I wanted to post an update on my shoulders just in case anyone else has a similiar problem. Karen, apparently frozen shoulders are a fairly common side effect of aneurysm surgery. Who knew! I've now been told by my PT I have frozen shoulders and the feeling of my shoulders slipping out of socket may be nerve related. They are stable in the sockets and because I have hand tingling and twitching along with restless arm syndrome (which is also nerve related), he is fairly confident I have some nerve damage from the blood in the back of the neck. I'm going to PT to treat the frozen shoulders and we're hoping the nerve issue will go away on its own.

Thanks everyone... you always know the right things to say. I especially like hearing that at some point I won't think about having had an SAH every day. Right now it consumes almost every thought. I would love to forget about it for just an hour. The mood swings like I had yesterday are just awful. I have no control over them and never know what might set me off. Thankfully, I feel better today. It does help to hear so many of you say that this won't go on forever. The diary and doing one thing I enjoy each day are great suggestions. I will give them a try. Thanks again everyone for your support and kind words. I'm very happy I found this website. I can't wait until the day when I'm past all of this and can give others support.

Yesterday was 8 weeks since my SAH surgery. I'm having a really bad day today. Feeling very sad and frustrated, but mostly guilty for putting my husband thru my roller coaster of emotions. How do you all deal with the guilt of that (or is it just me?)? Today, I'm wishing I never woke up from my surgery. I am so mentally exhausted from all the emotions and guilt. I feel like less of a person and that the SAH ruined my life and took away everything I enjoyed. I used to be an active person - I enjoyed running, skiing and biking. I did something active everyday. Now I'm lucky if I can muster the mental energy to do the simplest task. I feel totally joyless. I started seeing a therapist last week, but only so much can be done in an hour. Well, I think I've been enough of a downer to you all. Thanks for letting me vent. Lisa

Thanks everyone for your input. I've been told I have unstable shoulders from disuse. I guess from not using my arms much during the 2 weeks in the hospital and for several weeks at home, the muscles that stabilize my shoulders have begun to weaken. I just have to do some exercises to help strengthen them again. Glad it's an easy fix!

I find my memories of my hospital stay very limited too. I'm not even sure some of my memories are correct. They may be a combination of fact, dreams and things I overheard people say. I'm 7 wks post surgery. I find the occasional loss of word or name too, but what I find most odd is my recall of the recent past. If I try to remember details of something a week ago, it's like my brain can't focus. Further in the past I'm okay, just the last week or two. Who knows! A funny story I remember from being in the hospital. A nurse came in and told me she needed to put a picc line in my arm and would be back the next day to do it. For me, they wanted to be able to draw blood easier - I have memories of them drawing from my feet (not sure if that one is correct!). Anyway, I called my husband to tell him they wanted to put a picc line in because they were giving me lots of IV fluids but they weren't coming out and they wanted to find where the fluids were going in my body! My husband is GP and knew this wasn't correct, but got a good laugh. I'm not sure how my brain put the that one together!

I'm 7 weeks post SAH. I had a craniotomy to correct the bleed. Prior to my SAH, I had been on an antidepressant (lexapro) for many years (very successfully). The Dr. kept me on it while in the hospital and I am currently still taking it. Despite the medication, I am suffering from horrible depression and mood swings. I know that's quite common, but I'm wondering why the lexapro isn't working. Maybe I need a higher dose now? Just wondering if anyone has any insight into why. Also, if you had depression and each day was dominated by a different emotion, I'd love to hear how long it lasted.

I don't remember any dreams since the whole thing happened. I used to be a frequent dreamer. Also, it takes me forever to fall asleep, but when I do, I am out! I don't wake up at all throughout the night which is a change. Finally, before the aneurysm, I considered myself a healthy eater. After, I couldn't get enough ice cream, sorbet and sweets. I'm slowly working on getting back to my original diet.

Thanks Karen, I will contact my dr. It's getting very annoying. Like you, it's difficult to put my arms back to put a coat on or get dressed. It seems like it's always something!

Hi, Ever since I got home from the hospital 5 weeks ago, my shoulders and upper arms have felt sore. I thought it was from hunching them from stress. The problem seems to be getting worse and now whatever direction I lift my arms (not even high in the air) they feel like they are going to slip out of joint. I've also started with restless arm syndrome at night. My arms will jump and tingle and tickle (like I don't have a hard enough time sleeping!). I'm wondering if this is related to the aneurysm or something different. Anyone else have this or any suggestions? Thanks.

Teechur, just reading your post made me cry! I can so feel your pain. I like your saying of "I don't know how to be this person I am right now..." - that kind of sums it up for me too. I should be in bed sleeping now, but my brain won't shut off. It's either going over the events of my aneurysm and hospital stay or getting angry at things people said or didn't say. This has not been a good day. Hopefully, tomorrow will be a peak on the roller coaster.

Hi Karen, you are so right. It is about not knowing how to feel. I'm not sure I've come to terms with the severity of the situation either. I'm with you... it felt like a medical condition that was fixed. Because I don't have any lasting issues, I feel like my aneurysm was an "easy" one (no big deal) and I should feel normal. I'm also not typically an emotional person and having this constant stream of emotions is very confusing and disturbing to me. Some counseling might be a good idea. Thanks for sharing your story.

Hi Everyone, Today has been 6 weeks since my SAH surgery. I came home 4 weeks ago. I am very lucky and didn't have any complications after surgery and my Dr. says most of my issues will clear up within a few months. I'm struggling mostly with emotional issues rather than physical. Today I went for a walk and coffee with two friends which normally (pre SAH) would have been fun. Instead today the conversation felt shallow and I felt alone. I've had this feeling every time I'm with others since I've been home. Even in the grocery store among strangers, I feel different from everyone else - like I don't belong. I'm thinking this is probably normal after a life changing event and hopefully will resolve itself. Is that the case? Anyone else feel this and have any advice? Thanks, Lisa

Hi there, I'm very glad I found this forum. I've been looking for support since I got home from the hospital. I had a SAH a month ago. I was cross country skiing with two friends (who luckily were nurse practitioners). I started feeling terrible pressure in my head and neck, then a headache with nausea. They contacted my spouse and brought me to the local ER. A CT Scan showed blood in the brain. Two ambulances and a plane later, I was at a large teaching hospital and had the aneurysm clipped the next morning. I spent 2 weeks in the brain surgery ICU and have been home for a little over two weeks now. My surgeon told me that I'm very lucky and will not likely have any long term neurological issues. I feel very fortunate for that. I am however, struggling a bit since I got home. I don't feel like the hospital prepared me for what to expect when I left. If any of you can help answer some of my questions with your own experience, I'd very much appreciate it. - Do you also have episodes of anxiety and sadness? I often do at night and have difficulty sleeping. My mind tends to go over and over what I can remember of the experience. - The area of the incision on my scalp feels tight and kind of mimics a headache. Sometimes I have a little swelling on my eye and forehead in the morning. Anyone else have this? - At what week or month did you start walking? How long? -Some days I feel achy, tired and emotional. Does that mean I overdid it with activity the day before? -Is there anything that helps with the fatigue (other than napping of course Thank you! Lisa