Bandicoot

Hi I flew about 10 weeks after SAH surgery. I had surgery 2 years ago and my scar is in about the same area as yours. I had pre-booked a flight from Australia to New Zealand before SAH and wasn't able to cancel or transfer the flight. My neurosurgeon told me there would be no problem, and there wasn't. It was about a 4 hour flight I think. I actually found most of my trouble was that I got in pain when driving in New Zealand. I am the only driver in the family and to ease my discomfort I just booked massages along the way. I did take it very slowly and didn't travel too far. I have posted before about my ongoing head, neck and shoulders pain but am so pleased that I have had the best 5 weeks of only occasional pain. I found a physiotherapist who specialises in cranio-sacral therapy and she has helped me so much. I hope you feel more confident about travelling by plane if you are feeling up to it. Tracy

Hi Viv I really like your photos and the new additions. I think you have a really sensitive and creative eye that captures an essence of the person/image. The new additions are great photos too that are alive and vital shots of children. Congratulations! Tracy (the bandicoot)

Congratulations Win - what a tremendous effort and achievement! Now if the going gets tough climbing the stairs again you can always rest and sing one of your ditties or maybe a Christopher Robin poem: Halfway down the stairs is a stair where i sit. There isn't any other stair quite like it. I'm not at the bottom, I'm not at the top; So this is the stair where I always stop. (thanks A.A. Milne) Thanks for sharing your courage and funnies. Tracy

Hi Thanks again for words of support. I do read and try to use the information and encouragement given. So, yes I will take some rest time after physio and remember to have water. Thanks for that. I'm sorry that you too Carolyn have problems getting good sleep when your jaw. Your jaw problem does sound quite extreme and I hope you too get some resolution of your problem jaw. I reckon we could do a thread on the tricks we try to sleep comfortably with a sore head, or jaw or neck. Today is a good day and I woke feeling better - just minor lower jaw pain. On bad days it feels like a wandering inflammation path that meanders around my lower and upper jaw then can skirt around behind my ears, down the sides and back of my neck and then annoys my shoulders and upper back. These are apparently some of the symptoms of Temporomandibular Joint Disorder (TMJ) which put simply is a pain in the *** head and neck. I am still hopeful though that my TMJ will settle down and that I am just going through an acute stage. I am also always massaging my own head, jaw and neck as well as I can. I use my hands and also have a little electric massage gizmo. I will keep with craniosacral therapy as it feels the best treatment for me now. I am putting a couple of links here for anyone interested in cranio-sacral therapy (I saw in an earlier post that Traci asked about craniosacral info). I am advised there are 4 or 5 levels of courses towards certification. The link to the right shows who are certified practitioners - http://www.iahp.com/pages/search/index.php#result A Dr Upledger was a Professor of Biomechanics and put decades of research into developing cranial-sacral therapy (CST) The website for the Upledger Institute gives background of Dr Upledger http://www.upledger.com/aboutUs.asp There is also a Biodynamic CranialSacral Therapy http://www.craniosacraltherapy.org.au/ which is not related to the Upledger Institute (founded by another Canadian Osteopath) years after Upledger Institute was established. to all Tracy

Hi Thanks Sarah and Win for positive messages. Win my jaw has been 'out' and goes click, click too since SAH and guess yours is same cause - or was it your prospective hubby making your knees shake and jaw tremble? The physio treatment felt great last Friday am but I didn't feel so good after it, but then I did go straight to work and have to start typing minutes of a meeting. I will try to work out better time for physio appointment in future. It seems to take a while for my body to adjust after the physiotherapy. I have only just felt some relief tonight and I hope this more relaxed feeling will stay for a while. I struggle (as most of us do I am sure) in dealing with pain, feeling tired and emotional and at the same time wanting to get some jobs done or have the energy to have a bit of fun. I still have to work out whether my body needs to move or rest. Had a big cry of frustration tonight and feel better for it. Pain gets you down, but then positive support from BHTGM makes me smile as well as Win's funny quips. good wishes to all Tracy

Hello friends I wanted to give a quick update on how I am managing TMJ the inflammation I experience through my jaw, skull, neck and shoulders. FYI I had SAH and clipping nearly 2 years ago. Pain in head, jaw and neck area has been persistent but has flared up in recent months. I think that my driving to work (2hrs per day, 4 days per week) and computer work aggravates head, neck and shoulder area. Not a surprise is it? Also some exercises that put pressure on that area aggravate too e.g. the mountain poses in yoga, lifting weights). My GP confirmed the inflammation I felt in my head and shoulder area was TMJ - my pain had a name, and that made me feel better. He also advised me not to take Ibuprofen anti-inflammatory medication, which I didn't know was not good for people who had SAH. With his help I got a health plan where I get some limited subsidy on health treatments. I can get some rebate for 5 physiotherapy treatments, fixed $ rebate on some dental (who also have a way to treat TMJ) and rebate on another treatment of my choice. The physio is fantastic and I love her because she helps reduce my pain. She has excellent training in cranio-sacral therapy and this is just the right treatment for me now. I have had a lot of massage and light osteopathy work before, but this is the trick at this time. A good friend helped me find her. He searched the internet for people who specialised in cranio-sacral therapy, checked the amount of training they had done and found me the best one. I hope you don't mind if I quote him here where he replied to my email thanking him for his help: That's great that you have found something that can help, and yes I wondered about certain yoga stretches, some may be helpful while others could be adding more stress. The fascia tissue wraps the whole body, so it's understandable if you damage a part of it it will cause stress to other parts (in your case the trauma of necessary surgery, cutting directly through bone, tissues, fascia etc.). I imagine that when things are cut there is thick scar tissue created to heal the cut, and in the case of fascia tissue, that scarring would create a kind of pull on the surrounding fascia (which in the head is a deeper fascia tissue) thus it would have direct affects on the surrounding musculoskeletals (such as tension, pain, discomfort etc.). Regarding yoga (I'm not sure yoga teachers have much training in anatomy & physiology) so you will need to monitor yourself, I'm sure that the physio can give you a set of appropriate exercises that will help (she specialises in movement). I know from my Shintaido practice how the body can react to injuries (large and small) and how movement can both correct problems and/or cause/exacerbate problems. So my physiotherapist is working mainly on the fascia tissue (which includes tendons and ligaments) and it is great so far (3 treatments to date) I even had a week with no pain. I feel a bit excited at the thought that I may actually be able to be without pain. My physio friend Carolyn says to just use her therapy first and not to mix it up with other treatments. Just wanted to share that. best wishes to all Tracy

Hello Robert I am sorry you have had a second SAH, it must be such a blow to you. I do wish you well in your recovery and hope you are able to manage work and family commitments too. My family appears to have a SAH pattern too. My dad had 2 aneurysms rupture simultaneously (as I have been told) when he was in his late 20s. He survived against all odds. His sister and his aunt also experienced SAH and died immediately when they were in their late 20s. I had my SAH (which was clipped) at 52 (2 years ago). I have suggested to my siblings and 30 year old daughter to have a scan by providing information, encouragement and a bit of harassment. I will turn the heat up again on them soon on this issue. It makes me a bit nervous and concerned for you to hear that you have to go through this a second time, and wonder how often we should be scanned if there is a familial pattern? I ditched my GP who told me I didn't need a scan earlier this year, 18 months after SAH. He had recently been to a conference where he heard that scanning was only required every 5 years. I told him I was having one because my neurologist had advised this. I don't know when to have another scan and will have to find this out. Take it easy Robert, a second SAH is enormous thing to go through. Hope to hear more from you on your recovery journey. Tracy

Oh, I feel so sad hearing how tough it has been for you - it makes me want to cry, as of course you must do too. What a difficult and traumatic time you have had! I am glad you have found this site and I do hope you can find some support, information and the practical assistance you need in your recovery. We all say here we get better with time and it's true. Some of us do have a harder journey than others on the recovery path though. We all have a right to get help on this healing journey. Sam, I hope you can find out what support and assistance is available and expect that you should get all the help you can for as long as you need. Good wishes chum on this tough journey Tracy

Thanks for the information provided in this thread - all helpful and interesting. I really appreciate you all taking the time to provide reference sources and medical information at any time. It helps to fill the massive gap of ignorance I have in this area. Tracy

Thanks Sandi, Traci, Win & Liz Thank you for the information and advice regarding TMJ & cranio sacral therapy. I do believe this problem is a result of the brain surgery operation and having my temporal muscle incised as I never had muscle problems in my neck, jaw and around my ears before. I do know that stress and pain escalates the whole problem for me and I do end up being more tense in my jaw and neck whilst trying to sleep (no sign of teeth grinding but I probably do clench my teeth). I will certainly try cranio sacral massage and talk to my dentist again when I go next. I am willing to try most sensible things to see if they help as long as it is affordable and give me relief. I probably won't bother with the surgeon though as he has given me next to no follow up informaton. I appreciate having your thoughtful input and sharing of experiences. I'll let you know how I go. I am going to try to get a cranio-sacral appointment soon. cheers Tracy

Hi, it's Tracy here, I have posted a thread about yoga helping my jaw problem and how it has reduced discomfort. Unfortunately it has not resolved my jaw, skull and neck tension and I am still in pain at time (well a lot this last week). I am wondering about TMJ and whether that is the problem. (Note I had a clear CT scan in March 2011).:confused: I have attached TMJ info link here . http://en.wikipedia.org/wiki/Temporomandibular_joint_disorder I know my surgeon incised the termporal muscle to do the brain surgery. My jaw has been out on both sides ever since (confirmed by specialist TMJ physiotherapist). I wonder what else to try to relieve the tension/pain I get in my jaw, ears, neck & shoulders. My GP referred me to a prosthodontist. I didn't go as my dentist said the jaw problem does not appear to have a dental cause. I have tried massage, physiotherapy and osteopathy. I am considering (as well as my yoga) trying CranioSacral therapy and maybe Feldenkrais . Has anyone any advice or experience around TMJ and helpful therapy or interventions? thank you in anticipation Tracy;-) Narrabeen (where the bandicoots roam)

Thanks for yoga & exercise tips Ern! I know it takes time to recover but the questions "when will I feel better" and "will I ever get better" keep rolling around my head. I appreciate your enthusiasm and positive spirit to spur me on to slowly increase my physical activity. Gut I actually skipped yoga this week and had a massage instead. I have gone under again with neck, head and shoulder pain. I don't '******' know why and it makes yoga and work hard. Maybe it was the skull operation but this is my reallly vulnerable area still. I will look up the yoga practice that you have mentioned and this might help my patience with my recovery. I think I will start a thread about dealing with head, jaw pain to see if I can get some ideas here to help me along. cheers on a wet Winter Sydney night - I'm not complaining, Sydney cold weather is a cool breeze. Tracy

Thanks for the encouragement Ern I like this Satyananda yoga class for beginners where we are encouraged to go at our own pace and do modifications of exercises to suit our own bodies. It is a challenge for me in this exercise style as it is when I do long walks. I am learning how much I can do, what time of day to exercise and also learn how much I should push myself. I feel very rusty now days (as though blood from the hemmoraghe has sat and caused rust in my spine and joints). I feel I need to do this and still have massage on an ongoing basis now (as long as I can afford it). Sometimes I am sore or tired after and it can be off putting but another of the things I am learning too is how long it takes to recover from tiredness after exercise or work from that matter. Sometimes I feel like I am living in another body and sometimes I feel like I have a few screws loose after they did the brain surgery. What a journey for us all It's so good to be sharing this journey with others though Tracy

Hi, I want to add another few cents of optinion to this discussion. I too find it curious what makes me tired. My SAH & op were in Sept 09 and I am feeling generally so much better. The neck and shoulder and jaw pain are easing but I am still feeling the tiredness and findiing it concerning at times. I am glad that I am working out how much physical activity I can do and have been building up the amount of walking I can complete without getting exhausted. I just had a great holiday at Uluru and Kings Canyon in the Australian Central Desert but I did have to ensure I had adquate rest. I went exhausted from work but am proud that I managed 3 big 5 hour walks (including lunch) with a day in between. I find I generally need to do walking in the morning so that I can rest in the afternoon if need (I did that at Uluru). I am doing a yoga class one evening a week and can achieve that ok too. I came back from my holidays feeling rested (as I blended activity and rest well). But one day back at work and I was feeling quite tired at the end of the first day. After my second day I was even tireder and my brain feels a bit mushy. I have a job that requires me to find solutions to problems so I now believe that thinking is tiring, so yes I have mental tiredness that makes me want to curl up and sleep (I'm glad I am not working tomorrow - Wednesday). I wonder if I can apply the same principles of exercise to my brain that I do to physical exercise? I will have to experiment. Perhaps I need more "starng into space" time that Lin-lin and Sandi mention. Perhaps a bit of meditation will help or a power nap - I used to power nap, but now I freefall into deep slumber. Tonight I am now going to blob, maybe have staring into space time or watch the mind numbing Celebrity Chef. Tracy it is getting better

Hello John, it must be tough getting so tired such a stretch after your SAH. I am glad you are getting a medical opinion and trust you will get a helpful result;-) I feel I have done so well 21 months on, but do collapse after I do too much. I feel like my immune system has been compromised too after the SAH and a couple of other things in the past. I feel good, try on too much and then, as many others have said, I get soo tired, soo quickly and I sleep for Australia. Apologies for that reference Penny (see earlier post by Penny in this thread) - I'm a republican:lol: I am looking forward to a week in the desert this week (around Uluru) - I leave this morning. Yeh:-D I did too much over the last 2 weeks, got too tired, got a short but intense sickness and now, damm it I am down on energy and tired. This is a holiday though, so I will reluctantly reduce my plans of doing long walks if my energy doesn't allow me too and do lots of resting and recuperating. I look forward to reading your next post Tracy

Hi I found an exercise that I believe really helped my aching jaw. My jaw has been stiff and ached since I had the SAH cranitomy 21 months ago. I have tried a range of treatments to help my jaw, skull and neck ache including massage, acupuncture, osteopathy and chewing gum. Recently I started a gentle yoga class which has stretched me (pardon the pun) because I am stiff and sore in many places now. I do feel that after 5 weeks the gentle yoga has helped me loosen up and I have freer movement in some areas. The teacher asked if any of us had a specific problem area and I mentioned my jaw. He said he had just the exercise. Our whole class were then instructed in the roaring lion pose and got to make appropriate roaring noise too (which helped). He said to try it at home but use a flannel (or washer dependig on where you come from) to subdue noise. Note, the teacher always guided us in modifying any pose to suit our ability. I am attaching a link to this particular yoga pose for anyone interested. http://www.healthandyoga.com/html/yoga/asanas/roaring_lion.asp Tracy

Hello Rhiann, in downtown Perth (only 4,000km from me in Sydney). I hope your sadness doesn't stay. It is so good that you share your hurt here. I get sad and cry but it does pass. I do find it is scary when I think the sadness is going to visit for a while and I feel some old despair then. Sometimes I have to allow my sadness to flow and let my grief run messily out of my mouth, nose and heart. Often that lessens the load and I feel better after. Sometimes I can feel weighed down and have to physically move and change my environment to get a different perspective. I feel that my resiliance has diminished significantly since the SAH and I am sad for my physical and emotional woes and the pain in the world. On the other hand, I am at times much lighter and thankful to be here and enjoy the beauty of life. I (like many others here) feel I know what matters about life and it isn't the superficial things. It's no wonder that the memory of a such a physical trauma has unsettled you. I didn't feel like that on the first anniversay last year, but going to have a CAT scan freaked me out bit time (and yeh it was clear). I do hope that you have some healing at this anniversay time. best wishes Tracy

Hello Christoffer and welcome from me too. It's horrid to have pain in such a vulnerable part of our bodies isnt it? I am sorry you are in pain and so worried about your neck. It sounds that a GP check up would help to deterimine if anything has been exacerbated. It is helpful for me to hear of others experince with neck problems as this is one of my ongoing issues too. It is somehow reassurin to find I am not alone in my ailment. It is about 21 months since I had a SAH and craniotomy. I am doing well but my neck, base of head and jaw still get tight and ache. I have to be very careful with the exercise I do and what type of stretching I do to try to relax the area. If I overdo computer work or driving I get sore, let alone lifting weights that strain that area. I like to swim in Summer, but I don't do overarm when my neck and head is sore. I also have don't do gym as I don't like the strain on that part of my body. I had an osteopath prescribe gentle exercise to stretch the neck down, holding the head and relaxing the neck. I think I will have to pay attention and money for treatment for this part of my body for quite some time. I hope you and your neck are feeling better. Tracy

Hello Hazel I am so pleased to hear you have done so well in your recovery so far. What a challenge you have regarding work and managing your recovery. My financial situation and some guilt about not working prompted me to return too soon to work. I had SAH and operation early October 2009. I started part-time after only 4 weeks but was fortunate to do some work from home. I also wanted to test my mind and see what my brain could do. I could do a lot, but there were many things I was slower at and I felt I had to hide my diminished ability as I have slowly recovered. Last year I worked full-time but was coming home from work and having to sleep to recover. I had a lot of small but painful health issues (dizziness, pain in jaw, scalp, and neck etc) that were exacerbated with commuting and being up all day and not having a rest. I also didn't get a chance to exercise much. The annoying pain and aching in my head & neck also tires me. This year I have worked 3 days per week. I work Mon, Tues, Wed off, Thurs & Fri off. I just thought, damn it, I am not going to get better the way I was working and trying to heal at the same time. I make sure I rest and exercise on my days off. (I exercise in the morning to see how much I can do before I get tired). I also try to exercise on other days too if possible. My symptoms have lessened and I recover better now. I still get tired, but a rest does wonders if I allow myself. It is now about 21 months on and I will need to renegotiate with work my hours. I think I will ask for 4 days per week for the next 3 months and have Wednesdays off. I do wish you well in your recovery and hope you can monitor how much work you can manage and the down time you need for recovery. It's all a balance isn't it. Best wishes Tracy

Gee, this is such a unique experience talking to people who have had some similarity of experience and are positive and supportive! Any time I have mentioned to my Dr a health issue that I believe is related to the SAH he has dismissed me. He's a s...t but his wife who is a part-time GP is ok! Lin-lin, your advice about a neuro psychologist is helpful and I will look into it (if I can afford it too). I would like to see if I can actively work to improve my brain pathways. I friend recommended a book called "The Brain That Changes Itself" by Norman Doidge. I will try to get it from the library. I would like to work with my brain injury - now that's a term I have only just allowed myself to use in the past few weeks! I have spent a fair of money having massage and gentle osteopathy. I have had such a bad jaw, skull, neck and shoulder pain. I still do but it has diminished. I also wonder if all the spine can remain stiff and tender after SAH. Mine feels so different and when I was in hospital my spine was so sore (not just from being in bed). I do begninners yoga one night a week and I think it helps. On the whole I really do feel very lucky - I have survived and a lot of issues I had earlier have faded eg. dizziness, lots of sore spots, many strange swellings on my head and face, horrid scalp problems and heaps of hair loss to name some. Weariness and at times deep fatigue go on, but I am now so happy when I have energy I just have to be careful not to use it all up in one go. I know that many people on this forum will have experienced much greater trauma than I so I don't want to be a complainer here but a learner. I will pay good attention to the sage words of advice offered here from people who know what it's like. On a small matter I would like to know how to search better on this forum to find threads for such things like jaw pain - I don't seem to be eliciting much from my searches. Can anyone offer me a tip here? thanks again Tracy

Hello Sarah, Sandi and Traci Thank you for the warm welcome, I really appreciate it. It is reassuring to hear that it is common to be tired and have some problems with memory. I do wonder if I will gain my full health back, I guess it's hard to know and I am getting older too. I will need to practice using this forum to search for info I need, I am still confused about doing searches at this stage and would appreciate any tips. I wish you all better health and some happy times. it's 9pm in Sydney time (not Traci Sidney time) which is about 11am your time. So time for me to go to bed on this wild and wet night. Work tomorrow;-) Nice to meet you, so to speak Tracy I

I am so pleased to have found this forum! It has a great sense of support and postivity about it as well as some useful advice and resources. I am an almost 54 year old woman and I live with my partner in a beautiful beach side suburb of Sydney, Oz. We both have grown up children and my partner has had to support and endure me as I have endeavoured to regain my health after my SAH. Still, I have felt a bit alone in my journey since having a SAH in early October 2009 and although having recovered very well, still have some annoying health issues. I am keen to explore this forum to learn from others who have similar issues as me and possbily to share as well. My SAH happened while visting with my family, the Blue Mountains which is 100km west of Sydney. I got a sudden strong headache while walking in a park. I thought I would test how bad it was and drove to our next desitnation (only 500 metres down the road). I decided I couldn't drive any further and asked if someone could drive me home (I didn't want to alarm anyone especially as I was with my brother in law who was being treated for leukemia). My sister offered to drive me and I then told her I think I need to get my blood pressure tested. An instincitve reaction I guess as 3 members of my family have had SAH and 2 died on the spot. I was quickly assessed and treated at the local hospital and transferred by ambulance to a specialist trauma unit in a Sydney hospital. Still I had to wait from 4pm on the Saturday to 11pm on the Sunday to be operated on and have my aneursym clipped. I then had 2 weeks in intensive care and was then sent to a general ward. I hated it and the hygiene was appalling (really bad). I asked to go home after one day and they let me. Hooray. The problem was I had no information at all as to what I could or couldn't do and what I could expect in my health. I still don't know much. I saw the neurosurgeon after a couple of weeks and said I wanted to go back to work asap and he agreed. So, maybe stupidly, I went back to part time work 4 weeks after the SAH. I worked full-time for all of 2010 and then decided this year that I was so tired and struggling with work, commuting and life (and trying to hide from work some of my memory probs). So now I have contracted to work 3 days per week until June 30 this year. I have been walking regularly to try to get my strength and resiliance back and have just started yoga too. My ongoing health issues include chronic stiffness and pain in the jaw, around my skull and neck and shoulders (I feel like they put on head on wrong and i have a few screws loose). Tiredness can be an issue and some memory problems, some short-term memories and in recalling names). I have had to practice using my brain at work where I do new work reguarly. I would still like to improve the short-term recall though. I do feel very lucky though but really hope that this was a one-off event. I look forward to exploring this forum and finding out more about others and myself.

Hi Fiona I also had a very bad scalp after my SAH operation. I didn't have the problem before and thought that perhaps ph balance in my scalp was different or whether I had become susceptible to a bacterial skin problem. I thought I might have psoriasis but never had it diagnosed (I mentioned it to my doctor but he didn't look). 21 months on, my scalp is still dry but I don't have the acute itching and flaking which resulted in me loosing quite a bit of hair. I tried a few things which are: - shampoo less - change shampoo to a gentle scalp treatment shampoo - I put oil treatments on my scalp and hair regularly. I made up a bottle of hair oil and tried to leave it on overnight (or in the day if I was staying home). Maybe you can buy an oil, but I made one with almond as a base and added drops of rosemary, tee-tree (Australian product), lavendar, neem and maybe jojoba. The bottle of oil I made has lasted a long time and I still use it. A couple of web links for itchy scalp that may help: http://searchwarp.com/swa214765.htm (Itchy scalp treatments) http://www.naturalskinrepair.com/scalp-psoriasis.html I know it's horrible and I hope you get on top of the problem soon.