Nurianna

Since the SAH I seem to have developed a strong intolerance to heat which I have noticed for the last two years and which has various negative effects on me. Direct sun is completely off limits right now as the ultraviolet rays index is extremely high where I live and it wears me off like never before. Summer makes me feel absolutely exhausted so now I try to do things either very early in the morning or late in the afternoon. I spend the rest of the day mainly just resting. The barometric pressure also affects me. Call me silly but I took up going out the same times of the day my cat does and I am certainly coping better. She's a wise one and always knows what to do. I suspect my family are slightly put off by my constant "tiredness" but there's not much more I can do right now. Love, Nurianna

HI! I have a blood spill in my right eye. I had felt it like twitching a little in the last two weeks and as I have an awful cold I have felt my head badly strained from the coughing and sneezing fits. My nose-throat connection has never been the same since the surgery and complete intubation I had to live with for months. Yesterday, after a particularly bad unstoppable coughing fit I though my head would burst and something must have. I have an appointment with my GP again tomorrow for the cold and I will also ask her about my eye. Has anyone had this or heard of anything related to it? It is quite scary to say the least. Thanks. Nurianna

HI! My appointment with the private traumathologist came up and he diagnosed a tendonitis on my shoulder. Al least I know for sure that the lack of movement is not neurological. He said the injury could have ocurred when I banged it during the SAH epilectic seizure I had, or for being moved and pulled about all night by the emergency proffesionals during the various transportations, or just by laying 12 hours head down on my left shoulder during the operation. What caused it doesn´t matter in the least. He performed an infiltration in which he injected a mixture of aneasthetic and medicine directly into the tendon and slight improvement was inmediate. What a relief because that could mean that surgery is not necessary! You are not supposed to have too many of these injections so I am hoping that one or two more, plus a suitable physical rehab programme, now that I can move it again, will do the trick. It was worth paying for it because after months of waiting I was really beginning to get depressed. I am glad I took action because there was a solution. The social security rehab doctor I had at the hospital just told me to get used to live with a numb shoulder. That can be true in some cases but not in all and I need to be sure of what can be changed and what has to be accepted.

Leo, I am not sure of the right translation in English, but a traumatologist here is a specialist who deals with physical issues such as broken bones, muscle and joint problems that are not of neurological, rheumatic or any other illness produced origin. They also deal with some post-operative related problems if these enter their field. The rehab doctor referred me to one but I have decided to pay-per-view because I´m tired of waiting to be called. Maybe nothing can be done but I will try to get the most accurate possible diagnosis. I am seeing my GP in about an hour and I will ask her about the antidepressants, bearing in mind much of what I have read here which makes me wiser that just a few days ago! She can also refer me to a psycotherapist regarding my PSTD which is bad at times specially when I feel dragged back to the six-week memory gap I still have when something triggers it. Wow! It has nearly been 2 years since the SAH and only now I have the feeling that I am sort of coming apart on so many fronts! It´s a really weird sensation but on the other hand maybe I wasn´t ready to voice and deal with any of this before. Anything that "rocks my little boat" is scary at first. It makes a whole world of difference to read your shares and suggestions because I realize how little I know about something until I get to it.

Celia, I have the same issue with my shoulder...how curious. About anti-depressants I would have no problem in having them prescribed but I am terrified of them. I fear I won´t be "me" if I take them or that I will never be able to get off them if I start......Urban legends in my head. I don´t really know anything about them, what they do or how they work.

Thanks to all. I really appreciate your replies because it makes a great difference in perspective to know I am not alone and I do need support. In response to Leonie, yes, fortunately I do have a few people I can be honest with about how I truly feel. Not many and these do not include my neurosurgeon, family and less than anyone my boss and co-workers since I have to prove I am still "competitive". I usually am the "strong" one, that has always been my role, even when answering the e-mails I receive from people in my country who also seek help. The problem with that is that when it backfires and it´s my turn to feel down, I find it very hard to deal with. When I go down, I go down. Anyhow, I have made an appointment with a private traumatologist to try to obtain a diagnosis about my neck and some other issues I have with my left shoulder. I have been waiting for six months for the Social Security to appoint me one and I have had enough. It´s my Christmas gift for myself. When making the appointment over the phone to the receptionist and mentioning that I was a neurosurgery patient, in less than ten seconds the doctor was on the line himself to cautiously ask what I needed exactly. After I had explained he was very kind though totally uncommittal and said that if there was anything he could do he would do his best. I intuitively liked him and put down the phone with a good impression which makes a nice difference over the usual. Just taking this little action has given me a boost and though I expect no "miracles", I will be happy if I can just obtain some straightforward information which is much more than I have right now. The worst for me is not knowing exactly what I am dealing with. If nothing can be done, then I can move on to trying to accept it gracefully. I will report on the appointment. thanks again and bless you all, Nurianna

Hello to everyone and Happy New Year! I have been away for a while and in the meantime helping to open, support and try to contribute with what little I know on aneurysm websites in my country. But this was my "first home" and this is where I always return....It´s the best. I am almost 2 years post-SAH now. I can´t believe it! The more time goes by, the more I am finding myself finetuning issues that were left for "time" to take care of. Well, it hasn´t so new questions arise. I underwent a 12 hour invasive craniectomy with permanent flapbone removal to gain access to the aneurysm. After almost two years, these are some of the sequels that have not disappeard over time. - A permanent feeling of having my head badly screwed on - A stiffness in my neck which gives a rubbery-resistant sensation when I rotate it. - Insensitivity in most of the back of my skull. - A bad perception of space-distance regarding my head so I have to be careful of my tendency to bang it easily. All this time I have patiently awaited to improve over time but nothing is happening. According to my neurosurgeon, this is "normal" and to carry on waiting. He doesn´t pay any attention to this type of thing and waves it off. The problem is that I have noticed a tendency in me to move less over time. It´s slide I don´t want to go down. I think I´m beginning to suffer give-up-itis. Has anyone else been through this particular surgery or can relate to any of this? I am beginning to feel desperate on this issue. All the rest, more or less ok. Thanks and love to you all, Nurianna

HI Melbury! I can relate to your post wholeheartedly. I live in the Canaries on one of the smaller islands and flew over to Gran Canaria yesterday for my visit to the neurosurgeon. One every six months and it lasts about 10 minutes at the most! My scan was ok (which I already knew because they do it at my local hospital and I can read the radiologist's report before the neurosurgeon) and once again I had all my questions brushed aside, exactly as you describe. This doctor saved my life and I am very grateful but I am finding it more and more difficult on each visit to put up with his dismissive attitude. This time I said that if I knew as much as he did I would be sitting at the other side of the desk and wouldn´t need to ask any questions! That shook him a bit and he seemed to tone down his obvious burn-out a little. I can see he´s tired and overworked but I am not to blame for that and I deserve to be treated with respect just as any other human being. My "silly little questions" are important to me and I don´t like to be treated as if I were dumb. I also felt dissapointed (again) but then I expected it. I´m just glad that this time I spoke up for myself! As for my queries which included flying in pressurized cabins, diving and other situations which involve changes in pressure I was told that I have to lose my stage-panic and act like if I was a "normal" person. Fine with me. But he could have said it without rolling his eyes, sighing in exasperation and informing me that "you SAHer's are all the same". I felt sorry for him because he isn´t a happy person. It was awful but this time I stood my ground and walked out of there feeling six-foot tall. And next time, I will have more questions and will expect answers but I could really do without all this conflict. After my check-up in April, I had considered filing a complaint and requesting a change in doctor, but I don´t really want to do that. This doctor operated on me when no one else wanted to do it. I do feel a kind of loyalty but I can also answer back. Wouldn´t have dreamt of doing such a thing in the first stages, nor had the energy to do so. He cannot treat me like a doormat without finding resistance. That´s another proof that I am recovering. Lots of love, Nurianna

I WAS SENT HOME WITH A PAPER TELLING ME WARNING SIGNS ON THE INCISION OF A CLIPPED SAH (previous quote) Wow, that´s much more than I went home with...... 3 months to get "back to normal"? What is "normal"? If it means to be able to walk, talk, eat and do other things on my own, then, yes, I am "normal". I can also think, work, drive, read and do some physical things though not for too long. People say I look "great". On the outside, I suppose I seem more or less "normal". Yes. My neck is still stiff and I have got a frozen shoulder though it doesn´t show that much. But I do see the world through different eyes now. My physiotherapist tries to unglue my neck and shoulder 3 times a week and, apparently, I am one of the crown jewels of my neurosurgeon. I rang up his office yesterday to ask his secretary about my clip regarding my scheduled magnetic resonance and to my surprise, he picked up the phone himself. He didn´t seem to remember me at all until I mentioned the length of my operation and then he knew who I was. He said with a renewed tone of voice that he remembered the operation clearly though not my face. He sounded incredibly stressed and tired. I believe he is. But that´s the man I owe my life to and he will be always special. By the way, Yasargil clips are compatible with magnetic resonances. I am very grateful and I enjoy life to the best of my ability. I have been very lucky and I am also very stubborn and want to live the best I can. When I have a bad day, I try to cut it short and go to bed early. I more or less manage to carry on with life where I left it (and appear "normal") but emotionally I am a totally different person and I will not pretend otherwise. The person I was is gone and I cannot dwell on that. I believe the change to be more internal than what it shows on the outside. I sometimes grieve her loss but that is also part of my personal recovery process and it´s necessary for me to do it. I consider it part of the healing. There´s much more to all this for me than just the physical side and nobody can put a deadline on how long I need to come to terms with and adapt to the new situation. That only adds unnecessary pressure. I agree that it is a very personal issue. The best to all of you with your individual recoveries... Lots of love, Nurianna

Hi Komodo! Glad to read all went well with your recent operation and thanks for sharing about Tersons Syndrome. I am also a Pica SAH'er. Haven´t had (so far) problems with eyesight but it´s good information to have in mind. All the best to you, Love Nurianna

I definetely believe a universal post-SAH sort of protocol should be created. Now I need to find out exactly what type of clip I have inserted in my brain. It´s the kind of question I would have never thought of asking on discharge (nor was in condition of thinking at that level) and neither my family did. We were all still in shock. 7 months down the path of recovery, today, I would leave the hospital with a real thick file of answered questions but back then.... I will be very happy to contribute to any questionnaire or information you require. Thanks for being such a pioneering bunch, Lots of love, Nurianna

Hi Cal! My best wishes and support for both of you. One of my jobs is as a part time paperwork clerk. For a surgeon!!! First thing he asked me as soon as I got back at the workplace was if I would be able to carry on. Not a word about how I was. I remember feeling petrified at the idea of losing the job and just nodded and was unable to do/say anything else at the time. Totally intimidated. I have been able to manage because it hardly requires physical work. Occasionally I have to shift old boxes with tons of papers in them and it exhausts me. I couldn´t do a physical job. As long as things get done, I am allowed to set my own timetable and I try to go to the clinic when I know I will be on my own. I feel safer. Of all places, I find no understanding there at all. Pre-SAH I was very competitive and pushed myself too hard. Now, I have to discard those old ways and also recognize and protect myself from people who still insist I adopt them. I have made new friends and some people have simply disappointed me but I have developed a certain shrewdness in dealing with people who don´t understand or are uncaring. I try to be one step ahead of them. Wishing you both the best, Lots of love Nurianna

Hi! I was told today I am scheduled on the 19th for an MRI to discover what´s wrong with my left shoulder. A bit scared after what I have read. Guess I still have time to try to get through to my neurosurgeon and ask. What would I do without the info and warnings I obtain here? Thanks, Love Nurianna

Totally agree. Seems like problem crosses geographical frontiers. Down here, the impression I get is that the right hand has no idea what the left one is doing. I have to see a few specialists and I always carry my hospital record with me because they don´t usually have a copy for the first visit. And it´s all in the same computer system. I have to be vigilant for procedures, prescriptions and advice, and usually I double check it in case of doubt. Eventually, I always get where I have to but it´s tiring to have to do the homework myself, and it feels like the whole thing is unglued, inconsistent and lacks proper coordination. There is a department here called Attention to the Patient where you can go and complain. It´s very effective, the people are nice and it usually makes a difference but I am tired of having to organize things through them. It takes its toll in time and waiting. There just doesn´t seem to be a check-list after hospital. I have picked up more (and better) ideas on this website than from any other place. You, fellow sufferers are my reference to keep pointing in the right direction! Love, Nurianna

Hi! I don´t watch Emmerdale but I can relate to the "not such a big deal" approach....the first one to introduce me to it: the neurosurgeon himself. "You are not sick, you have survived, you are lucky, get on with your life and don´t bother me with the "little details".....(this last bit unsaid but succesfully managed to get across through a dismissive attitude). Next one, please!" No problem, no complaint, I understand. It´s up to me. My new life is made up of "little details" and fortunately for me, I have this wonderful site to provide me with the feedback and understanding I do not find elsewhere when dealing with them.....That´s the way it is. In my country there´s even less public awareness, not to mention there´s nothing like this website available. I am lucky to be able to pass on onto others what I learn here. It´s like a service I can do for speaking both languages and it´s a privilege to be useful. Lots of love to all, Nurianna

Hi Charty! I can relate to your issue with work. I was also glad to get back to it but after a while, I realized it just didn´t mean the same as pre-SAH, didn´t feel the same and I wasn´t the same. I put up a pretense for about 2 months and it was hellish! At that time I had 3 different part time jobs and gave up one of them with no regret at all. Regarding the other remaining two jobs, I scrutinized them because there were things about them that weren´t making me happy. I made some alterations in the timetables to suit myself better and allow me time to rest between them and so far it´s working much better. I would leave one of them too if I could, but I can´t at the moment. I can only try to get it to suit me the best I can for the time being. I wholeheartedly agree with the messages of having to be happy with ourselves and what we do as far as we can. At least for me, it´s essential for my recovery and progress. Having been a busy-bee most of my life, I´ve had to do some soul-searching to rediscover the things I really enjoy doing and it has proven a great way to get to know myself better. I think I used to "identify" too much with my job, but what I "do" isn´t "me". The SAH has taught me that. Wishing you the best for whatever path you choose, Lots of love, Nurianna

I DID IT! I have had my hair dyed. Well, highlighted. We did it the old fashioned way. Using the plastic cap and pulling strands of hair out of holes in it. This way the dye didn´t reach the scalp and the result is very satisfactory. I enjoyed it and feel different. Thanks for all your kind messages of support and for your understanding. I wish you all the best for the New Year. Lots of love Nurianna

HI! and thanks for bringing up this topic. I'm beginning to really address it now, 7 months post clipping. I believe that before I was more focused on survival issues but since I am realizing it´s true I´m going to be around a little longer than I expected, I guess it´s coming up. I am the same and yet I am not. I believe this paradox can only be fully understood by someone who feels the same way. A therapist can show me coping tools, open new perspectives and be very helpful, but I believe the work to be done is up to me in the long run. I try to release too-high expectations on others because I always end up feeling short-changed. I have spent the last week laughing. I suspect my family worry, because I never used to laugh like this before. Life was too "serious" and there was so much to worry, fret and get angry about. But I like this new laughing me. This also, makes me seek the company of other laughing people, maybe in a way I wouldn´t have done before. The changes in my personality also materialize in my life in these little ways. I try to focus on staying balanced, just talking about myself it means trying not to tip into extremes. I am more emotional since the SAH and I try to be aware of what I am feeling and not let it rule my behaviour at the same time. I have to watch out for bipolar tendencies. I cannot let the highs get too "high" or the lows too "low", because of the energy and time it takes to get back on the beam when I fall off it. I find that relaxation techniques, meditation, healthy eating habits and some physical exercise (what I can do and when I can do it) are the best thing to keep me in balance and in the best place. All these things uplift me. I don´t always feel like doing them but it´s important I try. I also need to find time to do things I enjoy doing just for the pleasure of it. I used to carry the world on my shoulders and felt as hunched up as Atlas by the weight of it!!!!! Since the SAH I don't, and though at first realizing the world would still keep on turning without me was a bit depressing...this has turned into a marvellous feeling of relief. From the odd moment of it, to something more permanent. A new perception of life. Love and hugs to all, Nurianna

Thanks for your kind words. Feel better already. It is true that sometimes I forget where and what I come from. These self-pity attacks are spacing themselves out but they can still get me at times. The best antidote I know is gratitude and just let them pass. I think I had reached a more or less comfortable plateau and starting the physiotherapy as awoken new challenges and feelings. I can try to avoid change and anything that "rocks the boat" even when I know down deep it will be good for me in the long run. I am usually capable of seeing the "glass half full". I remember when one of the nurses told me they were going to have to shave all my hair off. It was quite long back then and eventhough I was half-comatose I can remember thinking. :"well, I have needed (and have been postponing) a haircut for a while now and here it is!". It just seemed so unimportant at that moment. It´s great to have this website to write and share the highs and lows. I doubt I would be able to cope without it. Cannot imagine my recovery without it. Wishing you all the best, lots of love, Nurianna

Hi everyone and glad to be around another day!!!! Yesterday my physiotherapist wanted me to work in front of a mirror. I refused. I am a long distance swimmer who hasn´t swum in over 7 months. I can´t because of my left shoulder. I am still waiting for a resonance that might show up what´s wrong with it. Until then, they will not allow me to do any exercise with it. I´m getting some very mild massages but so far no improvement....Eventhough I am not eating more than before, I´m putting on weight and I have lost muscle tone that is gradually turning into flab. My hair has always been streaked because of the sea and the sun. After shaving it off it has grown back almost completely black. I don´t recognize who I see in the mirror. I have been feeling low the last couple of days and to give myself a boost I have decided to go to the hair salon and have my hair highlighted. I remember asking my neurosurgeon while I was still in hospital and he told me to wait for a month before using any dye on my hair. I have waited 7 but still feel wary. Can anyone relate to this? Has anyone had their hair dyed after a clipping or has had any further advice? Any info will be greatly appreciated, Thanks to all love Nurianna

thanks for this information, Anne. I have placed the question to the neurosurgeon through his secretary on the phone, since he lives on another island and I am not due to see him again until April. I hope to get a reply tomorrow. In the last session of physiotherapy we didn´t use it the voltage machine, just in case. I don´t know if it´s a TENS or what it really is but I will find out tomorrow in my next session. I´m printing the replies so I don´t forget anything. I know the physiotherapist thinks I overworry and I´m getting a bit tired of his "laissez-faire" attitude. After all, he´s not in my situation but I will take all the necessary precautions I believe I have to, whether he likes it or not. Thank you all for this very useful information, Take care, lots of love Nurianna

thanks, it´s good to hear it sounds pretty safe to use this device. It´s definetely helpful though I think I will ask the physiotherapist to keep it on a low voltage during the sessions for the time being. It´s wonderful to be able to move my head again without having to turn all my body with it.....and after 7 months of this I was, felt and looked quite stiff... Sometimes I have to remind myself that I can now turn my head and do so conciously but it´s definetely an improvement in my quality of life. At the moment, I´m trying to get used to it and to adjust my balance and center of gravity to the new situation. It´s like a new beginning, it requires effort and the level of concentration I need tires me, but it´s worth it..... Thanks once again and bless you all Lots of love, Nurianna

Hi everyone! I have an issue and would be very grateful if anyone knows anything about it, can relate or has had a similar experience. I have started the physio on my neck and it´s proving to be very helpful. Now, the other day, the physiotherapist produced a device to add to the rehab. It consists on sticking on my neck these little plaques that send like an electrical wave to the muscle. The plaques are connected to a sort of battery. The truth is it worked fine and while I was wearing them it was if my neck was completely "normal" and I could move and rotate almost as before my clipping. The voltage was kept at the lowest all the time. Does anyone know or has heard of any counterindication about using these things after an aneurysm? I haven´t had seizures or fits...so far... but it just doesn´t seem like a good idea. The therapist has admitted I´m the first patient of my type he´s worked with so he knows the same as me though "assumes" it´s ok. What if he´s wrong? I plan to ask the neurosurgeon during my next visit, but in the meantime, any info would be really appreciated. Lots of love, Nurianna

HI! I also do "the drunk waltz", specially if I don´t concentrate deliberately on my movements or if I am tired. I have recently started the physio after 6 months of my own Pica aneurysm clipping and have to relearn to coordinate again. My neck was so stiff I couldn't girate it at all so now I have to get used to my head being able to turn and to try to avoid my body turning with it! Balance has begun to be an issue since I started the physio, before I was as stiff as a board and hardly moved so it didn´t bother me. It´s very painful, I get spells of depression and I have to constantly remind myself that I am improving since now I can rotate my head again. The other day, the physiotherapist forced my neck to an angle in which I could almost see what was behind me. I burst out crying because I had never thought I would be able to do that again! I got used to a new physical center of gravity due to stiffness after the operation and now I am changing that. I also have a question: I feel like if the physio is making me very emotional, can anyone relate to this? Is it what they call "muscular memory" being challenged? Lots of love, Nurianna

Great to hear you are going back to work. I can really relate to what you say about working not being priority no.1 and realizing what´s important for you. Take care! Luv Nurianna