Nurianna

Hi everyone, I haven´t been writing much lately but I am still very much around. Things have quietened down a bit, haven´t seen any doctors lately and will probably have my next CTA and visit to the neurosurgeon in April. I am still having some problems with swallowing and my voice is still a little hoarse but I am gradually improving. I might have a broken tendon in my left shoulder, must have happened during the seizure, and if it is confirmed, apparently, the only solution is surgery. Needless to say, the answer is no. I'll recover it as far as it will go on its own accord and settle for that. My head is beginning to feel "more normal" and not like an overblown pumpkin. Honestly, I had lost all feeling of its shape and size and kept banging it! The neck is still stiff. I had to give up one of my part time jobs. I would get home straight from it and start right away with my English classes after having a bite standing up in the kitchen. No rest at all and I was beginning to get snappy at my students. After two hours I was exhausted, my house was a mess because I couldn´t do anything in it due to lack of time and energy and I was beginning to slide into the (warned by many) depression. Now I feel much happier, still keep a two-hour paperwork job at a clinic, take care of the housework and shopping in the morning, eat better, have a rest at midday and I am enjoying teaching again. I can even accept more students because I´m not dragging myself around after 2 lessons. In the last couple of days, I´ve started laughing like I used to again. My head felt a bit weird as it usually does when I do something "new" nowadays, but I didn´t let that stop me. It felt great! I´m ok and grateful. I still believe my family coped with the worst. They still feel sick when someone phones if I am nowhere in sight and it will take time for them to let go of the fear, if they ever do. I was two months in coma while they were awake and with no idea of on what conditions I would emerge out of it...,if I emerged. I was blissfully asleep but for them it was a day-to-day nightmare. It´s my biggest regret of the SAH. The worry and suffering it cost them, though my daughter says it helped her "grow up" and discover she´s stronger than she thought she was. Anyhow, that´s the latest report from down here and I´m glad to be alive. Now that I have more time, I will try to write a bit more and not only about myself. Once again, thanks to all of you for being there and I wish you nothing but the best. Lots of love, Nurianna Lanzarote/Canary Islands

Hello to everyone! Went to Gran Canaria for my check-up last Thursday. Saw the neurosurgeon who had clipped me for the first time since July. My scan showed OK. I had a long list of questions to ask him and I learned a few other things too. He´s only concerned about certain swallowing problems I still have. Can´t eat without a glass of water near me just in case I can´t get the food down. I always thought that had to do with the fact of having had so many tubes stuck down my throat for so long during the 2-month coma and that I just needed time, but apparently the occipital region of the brain (where my aneurism was) is the one that controls that function. He just said we had to pay attention to that and to always eat in an upright position. Next visit in six months time. When I asked him how long for my bone to heal, he answered none because apparently I had a good chunk of internal bone removed permanently so they could get to the aneurysm. The things I find out when I ask the right questions! I can´t touch the back of my head. People don´t see anything weird about it but now it gives me the creeps! Anyhow, glad to be back and cleared. It´s weird, I was watching a film called Babel with my daughter and towards the end there´s this scene in which a helicopter rushes in to take Brad Pitt's wife to the hospital. I had seen this film 3 times before and the helicopter scene had always been my favourite one because of the photography and the beautiful music. Watching it again tonight brought back my own memories of my chopper trip and it can still hit me hard when I realize that all this happened to me and not to someone else. Sometimes the reminders are tough to deal with because each day I feel more "normal" again. I was nervous before my appointment and the previous night found comfort and support in the chat room. I once again thank the members of this board for all the assistance, good advice and help I have received. I really believe my recovery would have been totally different had I not found you all! Blessings and lots of love, Nurianna

Hi! I love that Eleanor Roosevelt quote in the previous entrance! I believe she was right. It´s like the saying: "When I resent someone, I´m letting them live rent-free in my head!" Thanks to all of you for your support. It´s really encouraging! Discovered thru my TAC that I seem to have a serious sinus congestion and they are looking into it to see what it consists on and that it is not an infection. Has anyone had this experience? Lots of love, Nurianna

Hi there! Life post SAH continues. It's 4 months and a half now and I am definetely feeling better. The SAH does not dominate my thoughts 24/7 as it used to. The pains are slowly decreasing, are much more tolerable and my resistance is building up. Still get tired but much less than before. No comparison. One black spot, I must confess. I´m back smoking. Much less than before, but just couldn´t make it a day longer. Still seeing the neurosurgeon on October 16th. Had my CTA done here and a local surgeon I know had a look at it and said it looks good. It´s not the definite ok, since it´s not his speciality but it gave me a boost. The bad days are still bad but they seem to be spacing themselves out. I´m learning to cope with the whole situation much better. I´m also learning to say "NO" when I´m tired and doing too much. There was a friend who wanted to come over to visit and stay at home while she "helped", and I had to say "NO" because she drives me nuts and leaves my energy flat. It has always been like this over the years but just now I couldn´t bear the thought of it. Wouldn´t have been able to say "NO" before. In that aspect, the SAH has given me like a courage to look after myself better and not try to please everyone else around me. Well, that´s the latest from down here, Lots of love Nurianna

Hi everyone! Went to my appointment with the phisyotherapist on Monday. Really looking forward to it. Dressed in a track suit and ready to start.....whatever there was to start. The rehab doctor just asked a few questions, ordered me to try some movements and requested x-rays of my left shoulder and neck. Won't do any work with me until she gets them. This could take ages....and she has forbbiden me to swim and also told me my handbag is too heavy. I left feeling very low and defeated. The neurosurgeon told me to swim...so I don´t know who's right. I want to swim but I don´t want to harm my neck any further. It´s painful enough as it is. Now the good news. After I wrote a letter of complaint, they have brought my appointment in the island of Gran Canaria with the neurosurgeon forward by 6 months. I´m seeing him next 16th of October and I am having the CT scan done tomorrow at my local hospital so I can take it with me. I have to make sure I write down everything I want to ask him when I go. I have to fly over to see him but we go in little aircraft that don't fly high enough to require pressurized cabins (that always risk depressurization). Since they forbade me to scubadive and reach certain heights, air-pressure has become my most recent post-SAH obssesion. It will pass......as all the others have. I hope Thanks for reading, lots of love Nurianna

Sorry to hear about your ride. I can imagine it very upsetting. I am another who had to go back to work to pay bills. Don´t know if I was ready or not. Just knew my employers couldn´t/wouldn´t wait forever and I was the only earner at home. It takes up most of my energy just to cope and keep up. Wish I could rest more but I do it when I can. Right now I say "no" to most social, fun activities and hobbies because I just don´t have the stamina. We all do what we can and the best we can in our different situations. That is one thing I believe we all have in common. Take care, luv Nurianna

I was 47. Seen my youngest son become 18, and was looking forward to my detachment from my "children" for all the ideas and different things I wanted to do. Don´t get me wrong! I´m doing them, but there are slightly different than planned!

HI! This one and the previous topic are really interesting. My memory is not what is was but someone on the website mentioned that if my relationships were not strong before SAH they didn´t stand much of a chance after it. I spoke with my "man" (how difficult to define a relationship when it doesn´t fit a stereotype) last weekend and I have to admit that since SAH I have been sort of pushing him away. That's his perception and he is right in some things. I think that it´s easier for me to push him away than to risk seeing him unable to cope. I´m just trying to come to terms with it myself after 4 months. Most people have mentioned I have changed after the episode and I guess some will like the change and others won´t. The only thing I know for sure is that I am not willing to "pretend" I am the same person because I am not. Many times I prefer myself now, it depends on the day and how tired I have let myself become! Last night I got a phone call from a man I met months ago in the hospital. His wife had undergone similar surgery to mine a month later than me and he was really concerned about her evolution. Well, he said yesterday that she wasn´t "recovering" as he had expected, she was depressed and did nothing most days and he couldn´t cope with it. It saddened me that neither he or his wife can benefit from this website but I did try to pass on all that I have learned. I also spoke to her but I can already see the expectations of others are making it really hard for her. We plan to continue in contact. I have noticed that some people are afraid of me just because they are afraid of death and I must remind them of it. They ask questions but I see in their eyes that their real motivation isn´t concern but rather fear that it could happen to them. They cannot deal with it and I have to let them go without resentment. I have always been a very perceptive person but this blessing/curse seems to have increased after my aneurysm. It is true that one gets to know people better after something like the SAH. I just hope that I can be better with other people when they have problems now. It works both ways. The people who have helped me have also shown me how to help others. This website is great. I am more in love with it each day! Lots of love Nurianna

Hi there! My description of weird could be feeling my head like if it is as big as a pumpkin. Cannot be more specific. People say the size looks normal but I feel it´s huge. Also I think my neck is too thick. Maybe it has always been but I only notice now that my hair is still short. Maybe my glands are swollen. The sensibility of my head is also "weird". Sometimes it tickles, other times it feels rough and others I don´t feel anything. I think you could throw a brick at me and I wouldn´t feel it. Other times it feels like if I am wearing a rubber band around it. Weird. Also "weird" is sometimes I´m there and I´m not. My daughter says I look as if the "lights are one but there´s nobody home". Can anyone relate to this? Thanks lots of love Nuri

Dear Karen, Reading your post has once again brought tears to my eyes. I seem to be on the verge of them lately! It isn´t a bad feeling at all. After "toughing up my way through life" it´s a relief to be able to let go of some preconceived image or expectation of how myself or things around me "should" be. Tears of gratitude, acceptance, of sheer joy, other times sadness......It´s all about being alive. I´m grateful you had the courage, the strength and the inspiration to set up this website. I don´t know where I would be without it. I belong to other forums but this one is special. It´s magic for me. You remind me of a lady called Hilda. She was the nurse specialized on tracheostomies I met and worked with at the hospital. Of all the people there, and I include my family, surgeons, friends, visitors and most of the staff, she was the only person I could really be "me" with and break down with and cry if I needed to. She never judged, she never tried to "Pollyanish" me or scold me out of how I really felt, she was never annoyed or scared about how I felt, and there was no pretence I had to live up to with her. She just understood, was there, let me be and was kind. Sounds easy to do but very few people really know how to do it. I sort of found myself in the obligation of "reassuring" everyone else around me I was feeling better, when really I was feeling like ****. Felt comfy not having to do it with at least one person. I will never forget her. I believe what I went through is hard. And it has changed my perspective of my life and the rest of the world forever. Now I dance to my own beat. It´s the only way I can do it. A lot of people will never understand, but then as long as I have support coming from somewhere, I´m OK with that. I also believe this has somehow softened me up and made me a better person. I feel at peace on a good day. Bad days are a different story altogether, but I am learning to deal with them one day at a time. Most of the time I believe life is good and that I am fortunate. Thanks again, congratulations and lots of love, Nurianna

Hi! I have been reading all your posts on this topic together with the ones on vasospasm with keen interest. Today is one of those days when I believe I only see the tip of the iceberg of all this. I have also had a hectic weekend and feel tired. Doesn´t help my mood or optimistic outlook on life. One of my jobs is part-time paperwork for a private clinic. I don´t go to the doctors there but I do chat with them sometimes over coffee. There is this neurologist who flies over from one of the bigger islands twice a month to see his local patients. I can´t say I like him much and today he was "discussing my case" with me and said that if I was "his" patient, he would have already put me on anti-seizure, anti-vasospasm, and on some anti-other God-knows-what, too. I am not his patient and I never asked him his opinion. I found the conversation very upsetting. I had a seizure during the SAH episode, while I was trying to call the ambulance. I was concious and managed to keep calm and it stopped. It was quick but awful and scary. Re-reading my clinic history today it is mentioned that while I was in intensive care I went thru a few "comitial crisis'" which where successfully dealt with using anti-comitial crisis medication. No further info on what those crisis consisted on is ventured but they can mean a number of things as I have discovered. I have my next appointment with the neurosurgeon on April 2009. There are no NHS (our equivalent to it) neurosurgeons where I live but there is a neurologist and I am going to try go get an appointment and a second opinion. I don´t want to take really strong medication if it´s not absolutely necessary. I guess it´s a question of approach. The private doc says I should take the medicine as a prevention mechanism (paying, of course) while the Social Security is more "let´s see what happens and if something does happen, let´s hope we get to it on time"....It´s a nuisance not knowing what to do. On Saturday I went to the pictures and saw this modern action film full of high-speed flashing images. Thouroughly enjoyed and felt dizzy when I came out. But didn´t have a seizure. I have been prescribed Valium (a very low dose) and pain killlers for when/if I get headaches. That´s all. My GP is very pleasant but won´t touch me with a bargepole! She´s happy handing out new prescriptions for painkillers when I run out of them and doesn´t wish to get involved any further. I can understand it. I'm going to her tomorrow to demand blood tests and a request for an appointment with the neurologist at the hospital. That´s the action I am going to take. It´s fantastic to have a place to write and someone who understands my doubts and fears. I know this is not a place for medical advice but what I get here I sometimes believe is even more important to me than that. Courage, ideas, new perspectives and support. Lots of love and thanks for being there. Nurianna coming up to 4 month post SAH

Weak legs! another issue I can relate to! Going thru the whole website I could share on each topic! The parallelisms will never cease to amaze me! When I got out of bed on my own the first time (disobeying everybodies' orders and refusing to call someone for help) I fell flat on my face. I had been nearly 3 months in bed and thought the warnings about my muscles being "disactivated" were exagerations and meant for everyone else except me. I realized then just how bad it was. Having to deal with the anger (and the "we warned you")of the hospital staff and my family, didn´t help much either. I´ve advanced since then but cannot go up a high step without help. My knees have a limit to what they can do these days. It's worse of course if I´m tired. Also, if I am tired I tend to sway to the right as if I was drunk!. I start my proper phisiotherapy next Monday. I´m looking forward to it. My legs are improving, but still got problems with one arm not raising as it should and stiffness in my neck. I hope they can help. Lots of love, Nurianna

HI everyone! I still haven´t figured out the website completely but I think I can open subject here. Please excuse my mistakes if I am not supposed to. I know I might never have a complete explanation on why I had an aneurysm to start with and why it ruptured. But I have read that some of the believed reasons to have one are: high blood pressure, high cholesterol, family history, use of cocaine and smoking. The only one I qualify for as far as I know is the smoking. 30 years of very heavy smoking. I need to see myself writing about my smoking because I haven´t lit a cigarette since the 19th of May (the night of my SAH) and I am still battling with the addiction. Didn´t suffer through the physical withdrawal because I was in induced coma but gosh! the urge to smoke has returned with a vengeance. I don´t want to start again because I know I wouldn´t be able to stop. I have an addictive personality and belong to various recovery groups because of it. Not only because of SAH but just not to wake up and get up in the morning coughing and wheezing like an old cart horse and being able to breath deeply as I now can, is reason enough not to go back! Whether it had something to do with it or not, I stopped smoking "thanks" to the rupture of my aneurysm and DO NOT want to smoke again. I am not one of those people who can control it and stick to maybe 5 a day (or less). I need to write this down because I mean it. I´m glad I am an ex-smoker, I am proud of it and I don´t want to smoke again. I don´t want to listen to my addiction to nicotine. It only lies to me!. It can never be "just one". Never was and never will be. Not with me! What am I ranting about are my own issues with smoking. Just mine. No opinion on anybody else's. I´d like to make that clear. I´m no anti-smoking fanatic. Thanks for being there, lots of love Nurianna

Hi everyone! I'm 4 month post-SAH and tiredness is one of my main issues. Went back to work last week for 6 hours a day. It´s paperwork for two little offices. Nothing really demanding but I had such a hard time just trying to focus that I would get home and drop in bed to a 2-hour long comatose siesta, wake up in a foul mood and not able to then sleep at night. It was a difficult week and didn´t do much for either my self-esteem or confidence. I spent the last weekend basically in bed, reading, listening to the radio, getting up and trying to do an absolute minimum house cleaning just to realize I couldn´t even handle that.... Felt angry, guilty, depressed, scared....all the "nice" ones. Then, reason found its way through and I realized I just needed a good rest, and pat myself on the back for the things I COULD manage instead of focusing on the ones I couldn´t. Luckily, my son and daughter are grown up and can look after themselves. This week I´m back to work, being able to concentrate much better and feeling less tired at the end of the day. I´m also less scared and less demanding to myself and my body. I realize I expected too much from myself too soon. But then I am becoming an ex-perfectionist and that is never easy. I don´t know if I will ever overcome this fatigue I battle with and am not used to, but que será, será....I just know that beating myself up over it only makes it worse. I have to take it one day at a time. Thanks for reading and being there, lots of love Nurianna

Hi everyone! I have recently discovered a song called "Alegria" from Le Cirque Du Soleil. There´s something magic about and it gives me the strength and energy to acomplish anything. I found it on Youtube.com. The best version in my opinion is the one hung by Vinterleker. Lots of love Nurianna

Hi everyone! Pre-SAH I used to have an intolerant streak to a certain extent and with some people, places and situations it has just got worse! What I have noticed is that I can be much more understanding and compassionate with people who struggle with physical and mental issues. I can relate to a much deeper level. Something I could never do before. I have to watch my "I´ve been THERE" attitude at times....it can lead me to self-pity and a sort of disdainful arrogance which acts as cover-up for feelings of inadequacy. I just try to be honest with myself and about what I really feel at all times. My feelings and emotions do not have to rule my behaviour but I do need to acknowledge them to myself, to what I choose to call God and to at least one compassionate human being. I don´t feel isolated or alone when I do. Sometimes the difficulty for me is remembering to do it. I had my SAH surgery 3 months ago and have been out of hospital one month. I´m trying to adapt to my new life. In a way I feel the sadness of saying Bye! to some parts of the old "me" but I can also feel the excitement and am looking forward to the new things all this experience will bring with it. It´s a sweet-sour kinda feeling. I´m ok when I am in the center and in balance. Depression and euphoria/wishfull thinking are the extremes for me. I have to try to be aware if I am tipping into either of them. On this board I have picked up "something" from each person I have read. That "something" is Courage. Lots of love, Nurianna

HI! Thanks for your replies. They have been really helpful. I was envisioning myself having to be scanned every month or so.....and I was really feeling "abandoned" and panicky. I did have a titanium clip inserted. I live in the Canary Islands, in Lanzarote though my surgery was performed in Gran Canaria, in this massive hospital called Dr. Negrín apparently quiet advanced in neurosurgery and one of the best in Spain. I suppose they DO know what they are doing. Lots of love, Nurianna

Thanks Tina and Karen for your msgs. Had a good cry after reading them and feel better. By the way, at this moment of my life, this board is the ONLY place that seems to offer or have any sense. Lots of love, Nurianna

hi! I feel as if I am battling in many fronts at the same time. On the one hand, the delays in my appointment to get a new scan made. On the other hand I believe I have fallen into PTS, depression and God knows what else.....I have gone back to work but have to make a real effort to concentrate and take things "seriously". Everything seems nowadays so unimportant to me...It´s like if my operation and recovery is the only thing that matters. I wonder if anyone else has experienced this. My family and friends have begun to say I have "changed", that I am not so joyful or happy as "before". I feel guilty and also angry when I hear this and the easiest way for me to tackle it is avoiding people I am close with. They tell me I have to "get on" with my life. But I am not the same person. Sometimes I just get tired of being "positive" all the time. It seems that´s the only aspect of mine people close to me want to (or can) deal with. I have stopped seeing the man I was going out with because he cannot support me. Don´t blame him personally but I´d rather not be in his company if I am not feeling ok. Some people are useless for these things. As many of us, I was the one carrying the label of being the "strong" one. Well, my recovery comes first. That much I do know. I am grateful for many things. The other day I could eat a pizza! It took me a whole hour but it was something I had been wanting to do since I came out of coma! I also returned yesterday to my art lessons. My right hand is ok. Couldn´t complete the two hour class due to tiredness but made half of it really focusing on what I was doing. Another milestone..... Lots of love and thanks for the posts Nurianna

Hi! I had my surgery on the 20th of last May and while I was still in hospital had two or three TAC's (a sort of scan and that's what we call them in Spanish, not sure in English). They revealed nothing abnormal and I was eventually released when I could more or less fend for myself. I had my last TAC on July 22nd. Today I was informed that my next appointment to be scanned will be around the end of April 2009. This is the Social Security. Paying, I could have one today if I wanted to, of course. Before I go ballistic, raise hell and say something to someone I will end up apologizing for, I need to know the suggested program of recovery and I have no idea. Every month, 3 months, 6, once a year.......How often after the operation should scans be made? At least for the first year. I still think my appointment is not good enough and ought to be improved. What do you think and have done regarding yourselves? Have I reason to complain? Please note I will not be seen by a neurosurgeon until April 30th. Seems such a long time. thanks, lots of love, Nurianna Thanks a lot Nurianna

One of my main problems is my neck. My surgery was occipital/cerebelum area. Apart from the feeling that my head weighs a ton at times, it hurts to turn round quickly and other times there´s a feeling of pressure and pain if I start doing physical jobs around the house and have to bend down. I´m waiting for an appointment with a physiotherapist any day and in the meantime, I´ve been advised by a neurosurgeon to swim and my GP has given me a stiffneck collar to wear a couple of hours a day. I have to admit that it does provide a feeling of relief as is takes off the pressure of the weight from my muscles. Has anyone had a similar experience with a stiffneck collar? Should I try to make do without it? My GP is not a neurologist. Is there any counterindication in using this device? Sorry if I sound paranoid, but my SAH is recent and everything seems suspicious and dangerous..... Any tipis will be very welcome, Love, Nurianna

I had no idea there were so many of us.......Thanks for making me feel so welcome. It´s incredible.

Hi, My name is Nurianna, 47 and suffered a ruptured aneurysm with SAH on last 19th May. I have been reading many posts and it is as if my story is being told over and over again. I have found great comfort reading the shares and stories. Also this awful feeling of being isolated and alone is abandoning me gradually. I would like to thank David for recommending this site to me. Looking back on it now, I can say the last year I wasn´t in all that good shape. A feeling of pressure in my head, the ocassional headache, smoked too much, slept a lot, got tired easily, little things that didn´t mean much at the time taken separately and dutifully ignored as they would pass. I blamed it all on menopause. I live on the island of Lanzarote. It all started with a blasting headache one evening and stiffness at the back of my head. Thought I had meningitis. It happened as I was getting into the car. I never started it up. I used my last ounce of clear thinking (and speech) to call for an ambulance. Crawled out of the car, started having spasms, that stopped, and I owe my life to two Spanish tourists who were passing by and wouldn´t let me go to sleep until the ambulance arrived. I just wanted out. Fortunately the ER doctor on duty at the general hospital that night was bright enough to suspect SAH and make a scan. At first, I was diagnosed as having a low pressure episode or cervical problems. Then someone noticed my eyes were completely rolling and out of focus, did the scan and they called for a helicopter to send me off to Gran Canaria after seeing the results. On that island they have a huge University Hospital called Dr.Negrin which specializes and is worldwide known on neurosurgery procedures. They clipped my aneurysm in an operation that lasted 10 hours and 3 neurosurgeons and their teams intervened. Spent the next 6 weeks in the Intensive Medicine Unit in induced coma, had neumonia, hidrocephalia which needed draining, other minor complications and eventually a tracheostomy was performed when they tried to see if I could breath on my own and couldn´t tube me back in when they realized I wasn´t ready yet. Eventually I was sent to the ward when I awoke and was there a fortnight. There, I gradually relearnt to walk, talk, eat, breathe, and only then I had the tracheostomy tube removed. That tube is my worst memory of all. The experience of suffocating every time it got stuck still haunts me and probably will forever. Apparently I have no great disfunctions. My short time memory is affected a little. I forget tiny silly little things when I have always been razor sharp. It´s very frustrating. Sometimes I feel like Forrest Gump. Other times, it´s as if I don´t care about things that used to have me in a tizzy. When everyone around me is dancing the "Oh my God! Jig" about something in particular, I appear aloof and removed. Like disconnected. My aneurysm was in the occipital cerebelum area and the muscles of my neck were affected during surgery. It is still very painful but getting better very very slowly. I started driving 3 weeks after discharge from the hospital. On this island distances are very short. On Monday I´m going back to work. 3 months after the operation. My job isn´t stressful. I´m giving it a try. Some days are better than others. I respect myself enough to rest or slow down when I notice I need to. I´m still learning about aneurysms and SAH. Knew nothing at all about it. What I usually hear from doctors is that I was very very lucky, first to survive and second to not show any apparent disfunctions. But there are slight disfunctions that no one seems to consider important (in relation to what it could have been) and I find that very frustrating. It´s not to say I am not grateful. I truly am but I also could do with some support. Specially with my fear of recurrence. Thanks for being there, lots of love, Nurianna