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Janet

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Everything posted by Janet

  1. Thank you all will keep you all updated xxx
  2. Hi just to let you all know I spoke to the Nuero Surgeon at Walton today. He confirmed that my anuerysm is 3mm by 6mm and that they are prepared to do a coiling procedure in the next 6 to 8 weeks. When I mentioned my lung condition they said that it would be the Anesthetist decision if it can go ahead. Already asked on my COPD site if people with low lung function have been passed ok for surgery and a few with lower lung function than mine have been passed as ok so fingers crossed. Will let you know outcome regardless.
  3. Up until the last 18 months I would have said that I was managing quite well post SAH. I had learnt to manage living with the limitations and after effects. The dreaded chronic nerve pain was helped by amitriptylene which did allow me to do most things. However I was diagnosed with Chronic Obstructive Pulmonary disease in 2005 the year before my SAH it was thought that I may have had it for several years before diagnosis. I ignored this illness for years just having my yearly spirometry and taking meds prescribed. This may have been in part because of having SAH. I did and do still smoke although do keep trying to stop as I know the damage I'm inflicting. The past 18 months has seen a deterioration in my condition to moderately severe and has impacted on my physical abilities and constant infections and coughing has made my nerve pain worse as well. I have now been finished up at work and finally won at 2nd stage appeal my Ill Health Retirement Pension but still waiting for paperwork to be completed and payment sorted out. Finally this year has been a sad and difficult year for us as a family my youngest daughter lost her baby Liam on 1st of Jan at 28 weeks. My eldest has b-polar and had a really bad relapse in July. Then Wendy the youngest had a really difficult pregnancy and due to placental problems had Freddie at 34 weeks after being terrified all the way through that she might lose him like Liam but on a high Freddie is doing well so far. Sorry for long post just such a lot has happened this year.
  4. Thanks ladies its not quite as dim an outlook as it seems I am only at a moderate stage but for work purposes the amount of time off sick cannot be tolerated. I am able to do most things still just at a lot slower pace. The Ill health retirement is something that I should be entitled and was hoping to be accepted without the Appeal, so busy day Friday Consultant appointment and Disciplinary hearing.
  5. Thanks Karen has been quite stressful which doesn't help with my breathing but seeing a Respiratory Consultant Friday and hopefully he can give me the necessary information needed for the Appeal as think only a double lung transplant will cure the illness and having smoked for so long would not be considered for it.
  6. Hi not been around much for the last 18 months life was very busy with work and daughters increasing their families. We went from having 4 grandsons to having 6 grandsons and 1 granddaughter. I also have another long term chronic disorder that I was diagnosed with the year before my Sah but because it was controlled and stable never took it seriously until last October when my health started to deteriorate. I am now in the process of being dismissed from work as have been unable to attend at all this year. I had applied for Ill heath retirement but even though they acknowledge I am unable to work state that because I have not been referred to a Consultant there maybe some other treatment that may enable me to return to work at some time in the future. I will be around more often once I get my disciplinary and Appeal dealt with so look forward to catching up with both old and new members.
  7. Hi Dawn so sorry you have been made to feel the way you have people just assume that because we look OK we must be. I'm glad you have found a Doctor who at least attempts to understand the problems you have to live with. Take care and hope you feel better soon.
  8. Hi Linda So pleased to hear that you are doing so well.
  9. Hi John So sorry to hear about the ill health retirement and the effect it had on you glad you're getting your mojo back and managing to shift the excess weight.
  10. Hi Moonlite, sorry to hear you're suffering with such bad head pain hopefully your Dr can help with this. I suffer with chronic nerve pain on the side I had my craniotomy and have done ever since the clipping. I returned to my G.P regularly in the first couple of years like yourself because of clipping was discharged by the Neuro hospital. I had a C.T scan done by my local hospital about 6 months after in A & E and it was sent over to Walton who seen nothing suspicious then a further C.T scan 18 months after that and forwarded back to Walton. This was when I got told that the pain is probably caused by a trapped nerve but as I have the clip the only way to find out would be by MRI and this is not an option because of the clip. My lovely Neurosurgeon told me I would have to learn to live with pain and reminded me that at least I was alive. I also take a low dose of ant-depressant which does help to a certain extent. Push your G.P to refer you back to the hospital it is worth it.
  11. Hi Myra hope the hearing aid improves things for you and that the visit to the Neurologist doesn't pick up any further problems for you. Off subject I had problems with my left eye a couple of months ago went to the optician who said my sight in my left eye had deteriorated quite badly since last check up 14 months before and referred me to my Doctor for more tests. Had an appointment with an Opthalmologist had loads of different tests I had never had before at the end of which he told me it all looked fine and it would have been better if he had seen it when it was affected. Thought no more of it and put it down to third nerve palsy....how wrong was I recently had to allow an insurance company to contact my G.P due to medical history and was turned down for life insurance expected to see most of conditions listed but was surprised to see a condition I hadn't been told about "Optical Nueritis" of course googled it and it took me to the M.S site apparently O.N can be precursor for M.S my Doctor is now referring me to Neurology for testing as they can't do an MRI to look for lesions due to my clip. I don't think that it will be M.S but as I explained to my Doctor I have blamed all my symptoms post SAH on it so the testing will be to set my mind at rest.
  12. Hi I don't have a dent as such but where the bone was removed still changes even after nearly 7 years sometimes it is very pronounced and lumpy normally when my head pain is at its worst other times can barely feel it at all.
  13. My taste buds have completely changed since the SAH I now eat things that I never would have considered before. In the first few months I also had the metallic taste it improved over time.
  14. Hi Gazzer and welcome it is early days for you but you will improve with time the first few months in your recovery can be really challenging the important thing is to learn to listen to your body and we're only human so always try to push ourselves too much. You might find it useful to keep a diary in the first few months its good to look back on and see the improvements you make without realising. Hope you have a good weekend.
  15. Happy 1st Annie-versary Sue good to know you are doing well and your mum too.
  16. Hello and welcome Inez you've found the right place for lots of support and help during your recovery. The first few months can be really slow going in your recovery as you said dealing with the shock of the event and the side effects can be quite daunting. Just remember to be kind to yourself and listen to your body rest as often as you need and try to drink plenty of fluids it really will help. Look forward to hearing more from you.
  17. Hi Juliette I'm nearly 6 years in and yes unfortunately even now it does take longer to recover from any other illness be it a stomach bug or flu just wipes me out.
  18. Hi Rachel I have suffered with chronic headpain since my clipping in 2006 after my G.P sending me for ct scans and being sent back to my Neuro-surgeon a few times he finally decided that as it had been constant for so long that it may be caused by a trapped nerve and no further action can be taken. I have been taking a low dose of anti-depressant for about five years that helps with the nerve pain it doesn't get rid of it completely and the pain can flare up quite badly at times but my G.P allows me to increase my dose from anything from 10mg up to 50mg as needed. I manage the pain as best I can but it can and does have an impact on my lifestyle.
  19. Hi Jess Happy Annie-versary sorry its a bit late been away all weekend. Wishing you all the best for the future with your two lovely boys
  20. Extremes of temperature affect me but not necessarily heat itself more so with high humidity added to it and like Sarah a hat in winter is a must. I used have a large selection but had to get rid of most of them so looking forward to hat shopping in Autumn.
  21. Hi Jus and welcome sorry to hear that your results have worried you, will you be seeing your Neuro-surgeon again soon if so maybe he will be able to explain it to you in more detail then if not it may be worth trying to contact him via his secretary. Try not too worry to much about future bleeds although its something we all have done in the early months of recovery so it is easier said than done. I'm glad that you have found the site useful during the early days of recovery and you will find us all helpful and very friendly look forward to hearing more from you.
  22. Hi Bev and welcome we have lots of members who have bleeds with no cause found and its not unusual to be signed off from the Consultant after a few months. Recovery is a very individual thing that can happen over months and years. It sounds like the treatment you've received so far has been quite good with the number of scans and things and also your referral to eye specialist. I think even those of us who have had procedures still worry quite a lot that it might happen again but these feelings do get better with time. I hope that you find by reading previous posts that you're not alone and any questions shout out there is always someone who can offer reassurance. Wishing you well with your recovery and look forward to hearing more from you.
  23. Hi Gaynor and welcome you are still really early on in your recovery and we all heal at different rates only you will know when you feel ready to return to work. The important thing for you at the moment is to get plenty of rest and drink plenty of fluids. The fact that you didn't need coiling or an operation does not mean that the after effects and symptoms from the bleed are any less because of that. Wishing you well with your recovery and look forward to hearing more from you.
  24. Wishing you a Happy 1st Annie-versary hope the day was a good one for you.
  25. Happy Annie-versary hope the day is a good one for you but enjoy whatever you're doing.
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