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  1. Today
  2. Hello Janet, and thanks or your positive comments about the comments on this thread which have given you so much comfort about your recovery. It is human nature to try and get back to normal following a major trauma, however as you now realise.... with SAH … pressing on in these early days can be even more detrimental to `getting there` . So glad you have accepted that a much reduced working week is your way ahead. It may well be the case that in time you will be able to gradually increase your time at work. Keep taking that long term approach …. you are early days at 2 months. Work and family life do require to fall into pace with you …. and share your feelings with your son and husband who are also still adapting their thought and lives as they see what is happening to mum. So glad your employer is accommodating too. Non of us, sufferers and Carers alike probably knew anything about `SAH` before it hit us so dramatically... and perhaps even cruelly …. those you meet need you to share what it is like with them and if they are genuine in their concern... they will be there for you. Take care … and keep positive through these early months Subs
  3. I found this thread to be very comforting. It is 2 months since my bleed and I am still adjusting to life as a recovering person. I’ve always been full of energy and purpose- often with plans to accomplish numerous tasks or fun during the day. I’ve always felt the need to “live life to its fullest!” Now, suffering from dizziness and fatigue, I plan only one or two things (if any). I feel so guilty if my son comes home from school and I’m in bed (which I call “my nest”) resting. I am very fortunate that I am able to reduce my working hours to just one day a week. I love my job, but I have to be realistic about the exhaustion and lack of energy. People look at me and say I look great. They say "how are you doing?", and I know they are expecting me to say “I’m fine, feeling great!” Instead, my honest answer is “I’m hanging in there. The recovery is slow.” I wonder if I should just change my answer to “I’m fine.” The problem is, I’m not fine. I am grateful to be alive. But I’m not the energetic person that I once was. I consider myself an optimist, but sometimes I get very sad about this.
  4. Thanks Catwoman. As stated in my original, and subsequent posts, everyone on the course is monitored by both the NHS (our free National Health Service) and by our general practitioner. We attend regular meetings with a dietician and food psychologist. We also have exercise sessions in the meetings (if you don't exercise in every day life). Actually, diet 'soda' is one of the drinks of which you can have a can or two every day if you wish. Full sugar soda is a no-no and frankly should be banned, along with the smoothies that you buy which purport to be healthy but which actually have more sugar in them than the full fat 'soda' drinks! Out shopping this week for more clothes as my old trousers (pants) are now too small. Yay!
  5. Hi AMI A very warm welcome to BTG Well done for getting back to work and really hope you can resolve your shoulder pains. Just a thought, a while after my SAH, i experienced shooting pains from my shoulder down my arm and i could not lift anything without terrible pain. I went straight to my GP who sent me for an X ray and it came back i had severe Calcific tendonitis. Just came out of nowhere, thankfully nothing to do with my SAH. I had to have keyhole surgery to remove the calcification. Ultrasound therapy helped me at first, but it kept coming back with a vengeance, hence the surgery. Good luck and take care.
  6. Hi Paula A very warm welcome to BTG, glad you found us. You have certainly come to the right place for lots of helpful information and friendly caring support. How you are feeling at the moment is all very normal, you have been through a major trauma. Rest up as you have been and drink plenty of water. Listen to your body and be kind to yourself. We look forward to hearing more from you and please feel welcome to join in the daily banter in the Green Room. https://web.behindthegray.net/forum/9-the-green-room/ Take care Love Tina xx
  7. Thank you for the response. No, MRI wasn't done. Three different neurologists were sure it was periarthritis and had nothing to do with SAH. Physio said even if it were something else the only treatment would be physiotherapy. Just wondered if anyone else was in similar situation.
  8. Thank you. Will definitely take a detailed look and discuss with my doctors. Meanwhile, just to share Emilia Clarke's account of her SAHs in case you are interested. 😊 https://www.newyorker.com/culture/personal-history/emilia-clarke-a-battle-for-my-life-brain-aneurysm-surgery-game-of-thrones
  9. Paula, Sorry for your SAH. I hope you are taking it easy and hydrating. You can search this site for lot’s of helpful information about recovery. Please tell is how you happened to find Behind the Gray?
  10. Yesterday
  11. Thanks for all your replies and help.. daffodil i have notified my travel insurance already and they have honered my existing policy at no extra cost until renewal in October.. i cant imagine how much it will shoot up to then !! So i have made a note of the company you mentioned.. i will ring the trauma team at hospital and ask them. Thanks Paula xx
  12. Hi there, the main thing here is to check with treating Team as others have said as they know your case and can best advise. I used to fly a lot and didn’t want to be scared to fly so we went to Spain about 15 months after my SAH but i also had Shunt surgery later on so had to be cleared to fly then. Main things though when you do, and you Will, is to allow more time and plan your trip allowing for what the flight will take from you effort wise. invest in some really good noise cancelling head phones and wear them in the airport if you need to. Try to give yourself some time out when travelling.. Drink lots of water before and during flight. Also Birmingham airport now have a invisible disability /condition scheme where you collect a lanyard from the airport assistance and it means staff will go out of their way to help you....may be worth checking if where you fly has similar. Insurance wise, the last few times I have used https://www.enabletravelinsurance.org.uk/ disclaimer that I know one of the founders who was inspired to set this up after hearing some of my horror insurance stories and some of his friends who had cancer treatment. Been very happy with the online quotes and service but other good ones out there too.
  13. I flew 5 months after my SAH and vasospasm... I was very worried and I got a "have a good time" from my team here in Boston. They did not hesitate to say i could fly. In saying this I realize we are all different and for sure check with your team and follow their suggestions. I was afraid but all plans had been made. It was a 5 hour flight. I had no surgery, one week in ICU and had to go to rehab...I am still nearly two years out nervous to leave the country, insurance worries, but I do worry . Your doctors will be your best guide..best wishes, you sound like you are making a very good recovery. Jean
  14. Like Clare I had no surgery, and was lucky enough to spend very little time in hospital... My neurologist gave me the ok to fly 2 months after my haemorrhage- this was a short 27 minute flight from Norwich to Amsterdam (seriously we spent more time taxiing than in the air) and I was fine on this one. I was reassured on this flight by knowing that I could come back by train if it was too much and that the Dutch speak fabulous English! I then took a 4 hour flight to Greece 7 months out (again after checking it was ok) and while flight out was fine coming back there was lots of turbulence and the pilot had to keep changing altitude and this did give me a lot of trouble with head pain, however I wasn’t alone in this and there were several people far worse off than me needing oxygen and close care from the cabin crew. Now I know what to expect as (hopefully) worst case scenario I have booked to fly again this year, but a shorter flight. I’m hoping that there will be fewer/no problems as I really want to go to America next year. I’d be interested in any insurance company suggestions as my premium seems to be even higher this year, 12 months plus after the event, than it was last year at 2 months out...
  15. Is there a nurse specialist at the hospital you were treated at. They will be in a much better position to advise you about when to fly than your GP. GP's very often have little experience of SAH, sometimes never having had a patient who has had one.
  16. Thanks Clare, My consultant said I can fly in future but I had to cancel a Poland trip last weekend as it was to soon and I wouldn't have gone anyway.. But had to see my own GP yesterday and she said she would suggest cancelling my May holiday as the pressure of flying might affect me !! Am now in a quandary and worried xxx
  17. Hi my name is Paula, I am 53 years old and new to the site. My aneurysm burst on Saturday 9th Feb. I was just ready to go out with some of my work colleagues to celebrate a birthday. I came downstairs all ready to go, then came the worst headache and neck pain I've ever had, I said to my hubby there's something wrong with me and I think he should call for an ambulance.. I lay down on the floor and passed out, on waking I started vomiting and couldn't stop. My hubby had rung my sister who is a nurse and had just finished her shift, lucky she lives in the next road. She quickly came round and rang for an ambulance. The ambulance said it would be up to 2 hours!! My hubby and sister got me in the car and took me to our local A and E. It was packed to the rafters but they took me through more or less straight away. I felt dreadful and in agony, after waiting a while I had a scan. When the results were back they told us what it was and we couldn't believe it. I was quickly transferred to the fantastic Walton neurological centre and I was operated on the next day, I had a Web aneurysm embolization device fitted, they said it was 8mm aneurysm.. I was very, very scared and when the surgeon and doctors were speaking to me I was petrified but they said if I hadn't had gone in the outcome would have been catastrophic!! After a couple of days in ICU I went on to another ward. I still felt dreadful and got an infection. As the days went by and I started to feel a tad better. I met lots of lovely ladies on my ward who most had gone through the same thing. Most of them had suffered some sort of disability. I was so lucky, I had not . The consultants, doctors and nurses were fantastic all they way. After over 2 and half weeks in hospital I was discharged. I have now been home 3 weeks feeling bit better but still extremely tired while doing nothing and still very headachy.. I'm trying to be positive but am going through the why me ? Will it come again and scared of doing anything stage. It's good to be able to speak or see how others are doing and coping and knowing your not alone.. Wishing everyone lots of love in your recoveries. Paula xx
  18. Hi Paula I flew 3 months after my NASAH but I did not have surgery other than we evd. I think you need to check with your consultant to confirm if it’s ok. I have flown many many times since then and never suffer any ill effects others than fatigue. I always factor in a days holiday after my holiday now 😀 clare xx
  19. I first flew 12 months after my SAH but that was after taking advice from the doctors. Everyone's circumstances are different therefore you must get medical advice. As a side note you will have to declare it for travel insurance purposes.
  20. I believe that periarthritis is what's commonly known as a frozen shoulder and could possibly be down to age and wear and tear? I've never known a frozen shoulder to be linked to a SAH. I've had two frozen shoulders now, one on my right and the other on my left hand side of shoulder. I believe that the blood that dissapates from the bleed, down the spinal column can affect the nerve endings and the blood can take up to 3 months to clear. If you're worried and can't lift anything with your hand, I would suggest having a chat with your neuro team.
  21. Thank you both for your input, wise words and for calming me down. I think that I just over reacted to the letter, I think I either expected to hear nothing about the ongoing issue until my next clinic appointment or to get an answer. More uncertainty just threw me in a week full of other issues. The letters I get from the neurologist are the same ones he sends my GP but I will ask her when I see her if she can explain the terminology further, I think it is just the word lesion that is freaking me - family/friends who’ve used this term have definitely had bigger problems than my headache/fatigue/cognitive ones. Thank you again Sarah
  22. I can’t give you med advice but did they do mri? I m not sure how your position was when you were out. I am not sure if you do active work with your shoulder or exercised a lot. Ask your neuro about the possible relationship with SAH and maybe see ortho. X Ray will only shows bones and not muscles/ tendons etc etc.
  23. Hi all.. I'm new to the group ...I had my sah 6 weeks ago and had Web aneurysm embolization device fitted. I should have been visiting Poland last week but my consultant said I should not fly so soon ( which I didn't feel well enough to ) however he said I could fly in future.. my next holiday is mid May but i am very worried a 4 hour flight.. how soon after have any of you flown afterwards.. I feel i must try and overcome this as I'll end up never going again.. Thanks Paula xx
  24. Hi all I am new to this site. I had a perimesencephalic SAH on 15th Jan 2019, when I was out cycling with hubby and son. I am 40 yr old. I was not conscious for about a day. On day 2 of hospitalisation I developed severe pains in both the shoulders which persisted for a couple of days and needed IV pain relief. Over a period of 10 to 15 days, I gradually developed weakness of some movements of left shoulder- I can't lift anything with the hand (even now). The neuro team said it was periarthritis of shoulder and suggested physio. The physio did 5 sessions of ultrasound therapy and the pain went off completely. But now my muscles are wasted around the shoulder and still weakness persists. I have recovered well otherwise. Started working again. Fatigue of course, looks like it is universal for all the survivors. Did anyone else experience shoulder periarthritis post SAH? Periarthritis usually happens if a person is bedridden for a long time, but I have been bedridden only for a day. Any inputs will be appreciated. Thanks in advance.
  25. I know I m not supposed to give med advice but your brain and heart needs some form of carbs to function. 800 calorie diet is a bit extreme and someone needs to watch you closely. We don’t expect people to stay on it forever. Unfortunately we eat a lot of carbs here in the states and we drink lots of sodas and alcohol. Like one professor told us we should all get rid of all the bad habits we do with our mouths, smoking, eating, drinking and now vaping
  26. Last week
  27. Congratulations Johnnie on your weight loss thanks for sharing. My husbands daughter used the Exante products (others are available) with the guidance and monitoring of her GP. She did not have Diabetes but was borderline like Louise's husband. It really worked for her too. She now watches what she eats and has kept the weight off. Glad you are feeling the benefits. Not long until June when you can try out your new beach bod Well done, its not easy to stick to i know, well done ! Tina xx
  28. Absolutely do it with the backing of your doctor and the supervision of the NHS groups. I can assure you that all participants are very well monitored. JM
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