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About Cassandra

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  1. Hello, this is Cassandra's husband, Neil. Cassandra's journey of recovery went very pear shaped but she is back on the road to recovery now hopefully. It's been a year since her last brain operation - the sixth in a series between December 2016 and January 2018, all needed to either revise her VP shunt or do some surgery on or around her fourth ventricle. Regrettably, the last two operations left her with significant damage to the 4th, 6th and 7th cranial nerves which has resulted in a range of debilitating deficits. One of the worst is dysphagia, meaning she has a lot of trouble eating, chewing, swallowing, speaking etc. This has led to medical anorexia and the need for her to move to a tube-fed regime. She also has diplopia, which gives her permanent cross-eyed double vision, so its impossible for her to read, watch television, use a computer etc. Which is why I'm writing on her behalf. Anyway, it's been 3.5 years since her SAH, and I feel that her hydrocephalus is now being managed with a twin-catheter shunt which can be adjusted externally. Now she just needs to get back to 55+ kg after hitting 41kg, and have the strength and energy to pick up her various therapies and get back to some normality! Love to all of you dealing with your own challenges!
  2. Hello Elaine and I echo everyone else's responses - welcome to the club and to a whole new life. And well done on getting this far and getting on with your recovery. It's a real achievement, believe me. Hydrocephalus is quite a challenge, because it's literally a fluid situation. After my SAH in June 2015, I had a Lateral Ventricular shunt inserted internally in my brain that drains into my abdominal cavity. I also have a misbehaving fourth ventricle which has already got isolated once, been operated on last December, and is now looking like it needs intervention again. The thing I've discovered about hydrocephalus is that every day is different. it just depends on how much the ventricles are filled with CSF, whether the shunt is operating properly, if there is intermittent blocking of the tube or of the apertures at the base of the fourth ventricle or the aqueduct back up to the other ventricles. I just see the 4 ventricles as tanks of fluid circulating and draining properly or badly depending on whether there are any little bits of protein floating around blocking things, or whether the 'pump' draining them (the shunt) is flowing well, So some days the head is squeezed and pressured, other days it's heavy and full and only occasionally there is no sense of pressure or pain. But it is possible to get on with life by distracting yourself, staying really chilled, and doing only one big thing each day. The other thing I've discovered is that as hydrocephalus increases (the CSF increases in the ventricles), so does dizziness, pressure, poor speech, nausea and fatigue. If the fourth ventricle, near the brain stem, is too dilated, it puts pressure on a node in the cerebellum that 'speaks' to the vestibular system and the vagus nerve, and the dizziness, poor balance and nausea just gets too much. I've been taken to Emergency four times by ambulance and once by car. So it is really important to keep a close eye on symptoms and be ready. But three or four times it has subsided and it's back to normal Time is absolutely the best healer, so just progress in half-hour increments, smell the roses, and embrace every enjoyable moment possible. Take care xx Cassandra
  3. Yes, I think the humidity definitely affects how my brain is feeling. Such a sensitive, fragile part of your body, but so good to have it working as well as it is! Can anyone provide their experience about that incredibly precise medical condition known as foggy head? It has been the one unchanging condition for me, except for a handful of miraculous moments of partial clearing. That and my loss of hearing in one ear (due to a damaged cochlear-vestibular nerve) is all there is really between me and a 100% recovery. I think most people say it does clear sooner or later - anyone got any insight into what causes it and what can be done to help it clear?
  4. Thank you Kempse, Subzero and Daffodil and to everyone else for your ever-present positivity. Legends, the lot of you!
  5. Hi everyone Sorry about the long silence, but I had to return to hospital because the nausea, dizziness etc got worse. The specialist finally agreed that the shunt was not working properly and I had another surgical procedure to basically replace the catheter in the shunt and re-route it. Bingo! Nausea and vomiting stopped, double vision almost resolved, dizziness less, balance improved but still dodgy. Still massively tired, and still a constantly foggy, heavy, congested head and blurry vision. Back to square one rehab-wise as I kinda need to re-learn quite a few things. But the 18 months of nausea, dizziness etc each time i get up from sleeping is over, yay! Thanks everyone for your support, onward and upward
  6. I vomited daily for months after my SAH, then for weeks after I had my AVM radiated, and am now vomiting daily after having surgery to deal with a fourth ventricle that had stopped draining. I'm sick of it lol and wondered what insight and wisdom other fellow sufferers can provide. My husband is convinced it's because of damage to and pressure on the cochlear-vestibular nerve in the original incident, so happy to hear others' views...
  7. Thank you again Macca, and to you Daffodil, brilliant advice, thank you for the insights. you've nailed one of my issues - impatience - and will make an extra effort to keep it slow. Frustrating but it's a life lesson, I guess. i'll keep in touch
  8. Thank you Macca, and Tina, great reassurance and wow, what a story Macca - so many people, all with individual journeys. I've added to mine - two weeks ago, after 5 days of increasing amounts of head pressure, drowsiness, nausea and dizziness, i woke up deeply drowsy, severe double vision, extremely unbalanced - could hardly stand - and feeling very, very unwell. My husband, suspecting a blocked shunt, called the ambulance immediately. To cut to the chase, my neurosurgeon finally took my symptoms seriously and had a close look at the CT scans. He discovered that i had an 'isolated' or 'encysted' fourth ventricle - rare, but can happen following VP shunt insertion. Basically, either the duct to the ventricle closes down, or a cyst surrounds the ventricle and stops the CSF draining, enlarges the ventricle and puts pressure on cerebellum and brain stem. He whipped me into a 2 hour operation, they sliced a gap in the cyst and stitched it open (called 'marsupialisation'!) and the CSF started flowing again. So here I am in recovery mode again, but looking forward to improvements in head pressure, dizziness, nausea etc....... I'd love to hear from anyone who may have had an operation like that (i.e. craniotomy, some quick surgery, and bingo, stitched up and sent off home after only a few days in the ward). What to expect...pain, pressure, other symptoms etc. I'll head to the Green Room!
  9. Thank you so-o-oo much for those uplifting responses, it is so wonderful to hear your reassurances, particularly from people who have been on this journey for so much longer than i have! I will start to note down any relationship between humidity and head pressure, and for the good and bad days. And water! a great reminder. Lots more visits to the loo! Clearly time is the biggest healer here, I've found a great counsellor and a brilliant kinesiologist to help me on the journey. That plus mediation, a choir, community garden and Lumosity (a great brain trainer website, highly recommend it). Oh, and the balance exercises on the Nintendo Wii. Really good. Apparently walking also helps my brain re-calibrate and deal better with the dizziness and vertigo. I'm continuing physio as well. Thanks again and I'm touched to realise that I now belong to a new community of SAH survivors.
  10. Hello everyone. I'm Cassandra, I'm in my 50s, and I collapsed at work in June 2015 with a sub-arachnoid haemorrhage due to a ruptured aneurysm. The aneurysm formed at the site of a really small AVM on the right hand Anterior Inferior Cerebral Artery in my brain stem - an area of the brain one of my specialists describes as 'eloquent', meaning it was a sort of 'Grand Central Station' that basically ran my entire life. For 4-6 weeks prior to the SAH, I experienced a range of symptoms that could well have been related: double vision, dizzy spells, stabbing pains up the back of the head, a regular, rhythmic sound in my head and excessive fatigue and exhaustion. I was referred to a cardiac specialist by my GP but my SAH intervened! I had the aneurysm embolised during angiography, but from what I understand both cranial nerves # 7 and 8 (facial and vestibulocochlear nerves) were damaged through interrupted blood supply and the procedure. I had a 'tiny stroke' which contributed to mild and temporary facial palsy which has pretty well 100% gone away. I have no memory of the first 6 weeks, but I'm told that it was a miraculous recovery from a huge bleed and that I had no vasospasms. I did have hydrocephalus so got a VP shunt (the non-adjustable type which just uses pressure to modulate the flow). Sixteen months after the event, after steady incremental improvement I am mobile and can lead about a 75% normal life. I can't drive or work. The biggest issue i have (aside from the almost constant fatigue) is the continuous chronic feeling of numbness, congestion, heaviness and pressure in my head - largely on the right side. This is the one thing that makes me say ‘I can’t live like this’. My anti-depressant is helping me manage it short term to medium term, but long term, if there is no change, it stands in the way of what could be close to a 100% recovery. None of the four specialists who have handled my case have offered a useful or helpful prognosis or explanation for what is causing this numbness, congestion, heaviness and pressure, and I don’t think waiting to see if it improves over time is satisfactory. I can't help thinking that three years down the track, with no change, a specialist will finally pay attention and say, Oh, let's have a closer look.... I'd rather look now! My husband has done some research and I have found that there appears to be a connection between ongoing neural inflammation and ‘foggy brain’ and a significant ‘double-edge sword’ role played by activated microglia on inflammation I found two papers that support this but no-one in the medical field was impressed.. Norman Doidge, author of The Brain That Changes Itself and, more recently and relevantly, The Brain’s Way of Healing” talks about the role of the glia cells and, importantly, the production of toxic cytokines. He makes a strong case for positively influencing how the brain handles this activity - and others - through laser light treatment. I tried weekly treatments for 3 months, but at $70 a pop it was becoming a bit of a financial drain. Anyway, I've followed this forum for a while and with the help of my husband have signed up, and am hoping to get some insights from others!
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