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Juliette

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Posts posted by Juliette

  1. Hi Jill - I will PM you my number. I haven't met anybody who's had a SAH either - would be great to meet up with someone who's been through the same thing & understands what we're going through.

    I started at the Gwent, got transferred to the Heath, but they couldn't do the surgery there (neuro readiologist off or something!) so I was helicoptered over to Frenchay from treatment - roads too snowy/icy to drive safely. All my follow up is done there thankfully as much closer.

    I also have problems with my memory - sometimes simple words elude me when talking. People now take that as a norm for me - always was a bit scatty!! I did for a while practise on one of those brain trainers, which helped a little. I'm almost 3 years post SAH, and I think I am still improving.....

    I'll PM you

    Juliette xxx

  2. Thank you all for your words of encouragement - and Jill I really hope they don't take your license from you. Seems so silly to have to go through it all again so soon!!!

    Had angio on Thursday, and very happy to say the news was good :-) The Dr doing the scan was actually the one who saved my life - for me a good omen. The angio showed slight swelling of the coiled area, which is what they saw as a 2nd annie forming. I found out the reason they checked it out was because my original anni was only 1.3mm, but still caused an incredible amount of blood. If my original annie had been bigger they wouldn't have been so worried about it. Anyway, Dr kept saying good news as she was doing the procedure - and not surprisingly took a while for it to sink in for me laid there trying not to panic or move!!!!

    There is a weekly meeting each Monday, where they will discuss my case, but the plan at the moment is that I am now going to have yearly scans to check whats going on, but at the moment no more surgery. YAY!!!!!

    And Breathe......

    Am sooooo looking forward to my holiday in less than 2 weeks :-D

    Take care all

    Juliette xxxxx

  3. Hi all,

    Spoke with the neuro nurse today - she & the lady booking the angio in have been really helpful. Having Angio Thursday now so thankfully less time to wait and get nervous... The MRI results showed slight compression of the coiling from what I can gather, so want to see how much its compressed by Angio. Also showed another small aneurysm which was not there before which they want to look into..

    Has anyone else had this happen to them?? And, with an untreated annie, have the DVLA allowed you to drive??

    Hoping (maybe stupidly!) that I need no further treatment and the small annie seen was just an anomaly on the day and sorted itself out :crazy:

    Take care all

    Juliette x

  4. Hi Catherine,

    I had this pressure when my head was below my heart, also feel a bit wobbly like I would fall over. Couldn't look up either, without feeling funny. It does get better, takes time and I found that when I eventually got the energy to do gardening (which was many months into recovery) I also got it & was totally wiped out energy wise.

    As for painkillers, I only took Paracetamol/Ibuprofen when I needed it. Although at 3 weeks post SAH I think I used to have them quite regularly... Ask your Dr or the neuro nurse if you're having trouble with the pain.

    Take it easy, drink lots of water (I know everyone says this!), Be safe

    Juliette xx

  5. Thanks Daffodil,

    Had a great weekend. Read something while I was away that said if you;re stressed, just thinking about it can make you more stressed and effect your health - which of course in my case is obviously not good!! Solution was to think of something else (lists of things to do; order of shopping aisles in your local shop...) Sounds weird, but actually worked!

    Angio booked for the 7th, but going to try and get it booked in for this Thursday. Will be getting answers tomorrow, even if I have to drive over to the hospital and seek the people out!!!

    It is very stressful not knowing what they find - and if its life threatening or not. Tomorrow WILL bring the answers I need :-D

    Take care all

    Juliette x

  6. Thanks Iola, I don't live far, but not sure I'd be able to get any information before Monday morning anyway...

    Penny, thanks for the advice - we already asked about flying and thats fine as soon as the angio site is healed. I won't worry the insurance until I know whats gong on. They already know my medical history, and as long as its over 2 years since the "incident" and have no other probe, I now don't need the extra cover I used to get. Although that may change with these results.

    Thanks all,

    will keep you posted - positive thoughts my way please :-)

    Juliette xx

  7. Thanks for the reply. I don't think I feel any different to "normal" - just the odd stabbing pains, foggy head sometimes (especially with weather changes!) and bit of pressure now & then. But from what I remember its always been like that.... Although of course I am starting to doubt myself now, and every little thing today I'm panicking about. I had no indicators before my SAH that anything was wrong....

    Am trying very hard to convince myself that they are just being over cautious. Will speak with the nurse Monday (not in on a Friday) to hopefully find what they're checking. Have Angio booked for Oct 7th so hopefully they'll be able to tell me the results quickly - off to Disney Florida on the 17th and will not let anything spoil it!!! Turn 40 on the 15th so a birthday treat with my family :-)

    Strictly tonight to take my mind off my mini drama

    Take care Win

    Juliette xx

  8. After chasing & chasing my results, I finally got phone call this am from someone I though was just phoning to say all was ok. Unfortunately not, It was a lady who was booking me in for an angio to check something they'd found on the MRI. Luckily my husband was here at the time, as I broke down in shock.

    2 years, no major problems - all previous scans have been fine. A shocking lack of communication by the departments, the poor lady who phoned up felt awful as she thought I knew what was going on. As it goes, I still don't and the Neuro nurse isn't in until Monday when hopefully she'll call and let me know whats occurring.

    I'm hanging on to the belief that they're just being super cautious and if it was serious, they would have contacted me sooner... I hope. Just a bit of a kick in the teeth really. Thought everything was fine....Feeling very emotional :sad1:, but trying to get on a positive.

    What a way to start a weekend!!! Off to celebrate a friends 40th tomorrow, so need to get focused.

    Juliette xx

  9. Hello all!

    I had my 2 year MRI on June 2nd and am still waiting for the results! Neither myself or my Drs have received them yet... Phoned a few times leaving messages & eventually decided to e-mail the secretary only to find out she had retired the previous day! Anyway, phoned again leaving another message and someone finally returned the call - unfortunately I was out of signal (typical!!) & the message didn't arrive until after office hours!! :roll:

    Anyway, the message said I've found your results and have attached them to your notes. My consultant is on annual leave and should be back by middle of next week when he will contact me or write to me (her words). Am wondering why she didn't say everything looks fine at least to ease my mind. Now I will be worrying until I get the results!! Expecting that everything is fine - no news is good news right?

    Just wondered if this has happened to anyone else - the super long wait that is. And what the outcome was.

    Happy weekend all

    Juliette x

  10. Hi Liz,

    Yes it is more difficult to judge distance with just one eye and like Gill, I always think things are closer than they are! Over time it has got a lot easier. I built up the amount of time I drove & where I drove very slowly & when I first drove on the motorway it did freak me out a bit, but I had my husband in the car with me in case I felt I couldn't cope and didn't go far because the concentration made me really tired & tight headed. But now I'll drive anywhere, for any length as I did before having the SAH & loosing the sight :-D

    Things like playing ball sports/hand to eye co-ordination stuff just takes a little longer to get my eye in (excuse the pun! :lol:), but brains are really remarkable and seem to be able to compensate.

    I hope the eye appointments go well, I had many and the specialists I had were fantastic and honest!

    Take care

    Juliette x

  11. I'm now 2 and a half years post SAH and I still get this on and off, especially when I'm a little run down, over tired or done too much. It feels to me like I have pressure building up in my head - also feels my ears need to pop, pressure behind eyes so want to close them. Our brains are no doubt still healing and adjusting to whats happened.

    Its fine to ask any question even if its been asked before, sometimes i don't have the concentration to scour the site and someone will always have an answer or point you in the right direction :-)

    Take care,

    Love Juliette x

  12. I lost the vision in my right eye (only see shadows and colour in 10% of eye) during coiling. Each case is different, but I was okayed quite quickly by the DVLA to drive after my Drs sent them paperwork saying my left eye meets the driving standards (In fact I received a letter from them saying I was ok to drive until they made a decision before any paperwork from Dr!!). You get used to it, just needs to turn a little more when checking blind spot. It does take time to adjust and build up your confidence, but you'll get there :-D

    I wasn't given any information on bus passes, but I think it might be that you can have one if they take your driving license off you for medical reasons??

    Hope all goes well at your appointment

    Take care Juliette xx

  13. Isn't it strange how differently the DVLA review & respond to each case??! I only have single vision after losing the sight in my right eye during coiling. When I informed the DVLA, the sent me a letter very quickly to say I can continue to drive until they make the decision!! I didn't drive for a few months after my SAH because I didn't feel ready, and then only did very short journeys (5 minutes) with another adult in the car until I was confident enough.

     

    I didn't realise how much concentration it actually takes to drive! Was exhausted after first few outings!! Had someone with me when I did a long journey as well to give option to stop if it was too much for me & didn't drive in the dark for about a year after the SAH (night vision was bad enough before loss of sight in right eye mind!! :lol:).

     

    I eventually received a letter from the DVLA saying I would have short term medical license (reviewed every 3 years), followed by one a few days later saying sorry for they mistake, actually no restrictions just do the usual picture change every 10 years.
    Each person feels differently, but you'll know when you're ready to drive again. Just take it slowly,

    Hope you find out soon,
    Take care
    Juliette xx

  14. How many have had problems with vision after SAH. I lost 90% of the vision in my right eye whilst being coiled. Adjusted quite quickly to vision in only 1 eye - although do have a freak out every now and then when have any problems with left eye!!:crazy:

    My vision (or lack of!!) is my reminder that although it was the worst experience of my life, I'm lucky to be here

    Juliette xx

  15. Hi Doodles!

    Don't know if you've sorted out your travel insurance yet, but I use Atlas - have yearly cover including North America with winter sports coverage and we pay £80 for the 4 of us, then I pay an additional £30 because of the SAH. Much cheaper than a lot - had free travel cover with Lloyds bank with my card & they wanted £118 more to cover me for Europe only last year!!

    Hope you find good insurance at a reasonable price,

    Enjoy your holiday

    Juliette x

  16. Hi Desy,

    We use Arnica a lot here - is fabulous for bruises and may help swelling. Definitely doesn't hurt to try!! I & my physio used it a lot when I had an ACL operation - worked wonders for me with the bruising & swelling. Also had acupuncture which was amazing at getting blood flowing properly which reduced swelling for me - not to be done at home unless qualified though!!! We also use arnica pillules (tiny pills in small single pill release bottle) for mouth ulcers/sore teeth - first prescribed by our dentist (who's trained in complimentary medicine as well) when my youngest was almost 2 and fell and knocked one of her teeth back - was very wobbly. But after 2 weeks of tablets & no pressure on tooth from bottles/sippy cups & crunchy food it settled back and is still firmly in place almost 4 years later!

    Hope it works for you,

    Take care

    Juliette

  17. Thanks for the answers, I'm due to see the Dr again soon, so will ask him then. Will see if it happens again when I go to the gym tomorrow. Generally my blood pressure is ok, but since the SAH has tended to peak & trough a little, but have been given no meds for it so obviously not too bad! In fact was low before SAH! Will update when I've seen the Dr in case anyone else gets this. Need to get fit though!! Used to run a lot before the SAH, and have since. I've probably always had this, but just didn't really take notice of it before. :roll: Bad memory now!!

    Thanks again

    Juliette xx

  18. Does anyone else get a pulsating feeling in head (back left) during hard exercise (running)? I'm 2 and a half years post SAH and noticed it today. Did a 20 min walk followed by 20 min running, then some light hand weights. Only really noticed it when running, then when weights above head. Am sure its happened before, but noticed it today. Must admit haven't exercised much recently & might have been a tad dehydrated due to heat & a little too much wine this past weekend! Just wondered if anyone else had this???

    Thank you

    Juliette x

  19. Hi Claire,

    I'm glad everything is finally - if extremely slowly - being sorted out. You've been through a horrible ordeal and it does make you wonder why it sometimes takes so long to sort out/diagnose SAH. With mine, although i was diagnosed with the bleed straight away, it took a few scans over the week to find the aneurysm - and some of the Drs questioned why i was having further scans. Thank God i had a Consultant who erred on the side of caution and wanted to see what was there after some of the blood had drained off cos there was so much blood initially they couldn't see. Operated as soon as they got the results thankfully, and what a difference it made.

    I'm 2 years on (today actually!!) and i still get the stabbing pains, occasional headaches, dizziness and some tingling. But, for me, some of the symptoms are caused by B12 deficiency - causes headaches, dizziness, tingling, irritability. The list goes on.... Always worth asking for a test, as its not a usual blood test. Made me feel so much better after i had the B12 injections, but can tell when i need a top up. Since I've only been diagnosed recently, am wondering if it was something to do with my SAH???

    Hope you get some proper answers and solutions soon,

    Take care

    Juliette xxx

  20. Hi all,

    Each time i've been ill (with the slightest thing!) it takes at least double the time to recover than it did pre SAH. Right now i've just had mild flu (about 3 weeks of it), and although I'm pretty much better my head feels pretty pressurised still which worries me slightly. Does anyone else have this?? And take much longer to recover?

    I'd be interested to hear :-D

    Juliette xx

  21. Hi Sally,

    Can't be of too much help sorry. When i got home after my SAH I found that i was never hungry. If food was brought to me i would eat it as i knew i needed it to get stronger. I did need sugar in my tea which i never had before. I think, that whatever she wants at the moment she should have it. Her body will start liking food when its ready. Saying that, ginger biscuits always help me when feeling sick. Great to nibble on!! My appetite is fully restored now, which might not be a good thing!!:lol: Hope she starts to feel better soon:-D

    Take care,

    Juliette xx

  22. Hi Daff,

    My girls were 2 (and a half!) and 4 when i had my SAH. Dropped them off to nursery and school and someone else had topic them up. They didn't see me then for 3 days. It was very hard on them, from what i've been told they were a little naughty while i was away - showing a lot of the behaviours you mentioned. Although little angels when they were finally able to see me. My youngest cried when she first saw me and every time it was time to go - although very intrigued and observant about all the tubes and wires! She's 4 now and has no obvious residual issues, but does bring it up in conversation quite regularly. My eldest was very careful with me - scared she would hurt me i think :-( The school knew what happened as i was there when it happened, so were very good with her. She definitely changed at school - work was became very untidy, no concentration... and when i finally was able to take her to school myself she had terrible separation issues. Had to take her to her class room door everytime which the school were very accommodating with. It took 4 months, and lots of encouragement from her teacher and class mates til she would go in the regular route with the other children.

    Nearly 2 years on, she still doesn't like me to go anywhere without her. Although once i'm gone she's fine! It's slow progress, but they have so much to deal with and its not easy for them to express their worry and fears.

    I hope your children will become less nervous with time, and that you get the rest you need to get better.

    Take care

    Juliette xx

  23. I've been suspecting for quite some time that I have an electrolyte, mineral, and/or vitamin deficiency. Sine I've had no luck with Dr.s helping, I'm experimenting on my own. I do feel better overall if I drink a sugar water with electrolytes. I sleep better if I have Himalayan salts. I really need Vitamins once/month or my legs go bonkers. I haven't identified the exact vitamin that's been helping, but I'm suspecting it's iron...but maybe B's of some sort? All I know is that I am the best person to figure this out as no one else is really interested without huge costs to me with little outcome. I figured out the type of exercise I needed and that meditation really helps me, even though society and my physical therapist thought differently. I am getting to know myself better than ever and it makes me more empathetic to others as well. The 'Not Knowing Mind' often helps in these matters as a new sense of understanding comes through me in a new way. I'll let you guys know if I 'Figure' anything out. I'm glad others find comfort in Dr.s care, but that hasn't been the case for me.

    Happy Hunting,

    ~Kris

    Hi Kris,

    I'm glad you seem to be sorting things out by yourself - you are right, your body knows best what its missing and I know how expensive medical care is out in the states having lived there for a couple of years (with one of my daughters, so quite a few trips to the Drs!!). Luckily here Medical care, along with most tests, is free. With B12, I am unable to absorb it through supplements due to pernicious anemia, it has to be injected directly into my blood stream. So, if all else fails to make you feel good, it might be worth getting it tested. Hope you're having a good day

    Juliette xx

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