marg1 Posted October 6, 2014 Share Posted October 6, 2014 Hi, its been awhile since I've been on here and was coping very well, but just recently I am having doubts about my recovery and don't seem to be getting anywhere with my GP or Consultant. I am post coiling SAH 2 and a half years now and cannot find answers. I am getting headaches and neck pain almost everyday now ,I was due a 2nd scan a couple of months ago and have not heard anything yet. My consultant although very good at what he does has no bedside manner and could not understand why I wanted answers to my questions on our meeting 3 months after my coiling, telling me only that I was 'fixed' easy for him to say!!! I want to believe him but without the 2year scan to prove that everything is ok I am finding it difficult to do 'normal' exercise for fear of something happening. Does anyone know if it is possible to transfer to another consultant? or to go from NHS to Private? My GP has no experience of coiling and has told me as much. Quote Link to comment Share on other sites More sharing options...
Macca Posted October 6, 2014 Share Posted October 6, 2014 Hi Marg, None of us on here can give you direct medical advice because we are not qualified to do so. It strikes me, from what you say, that you need/want a second opinion and/or your scan and results. If your GP has no experience of coiling then he doesn't appear to be the right person to ask, but at least he told you so! Did you make it clear to him that your situation was getting worse? If your headaches are getting worse now then that requires some attention and investigation. Go and seek professional help and put other things on the back burner until you have some answers. However, that shouldn't stop your GP from making a referral to the consultant either, so you could be a bit more assertive and more insistent. Clearly your situation seems to be of growing concern to you - they should investigate the reasons when you report problems. Can your local NHS Trust you to another consultant for a second opinion? - the problem there is that you will have to wait and be anxious in the meantime! There is nothing to stop you going private but of course it will cost you - but the cost may be worth it if it buys you peace of mind, that is a choice only you can make. I would suggest that you chase up the scan instead of waiting to hear from them - let them hear from you, be pro-active, they may have made some administrative error for all you know - at least ask the question and bring yourself to the forefront of their minds. I guess what I am saying is, make things happen, don't wait for them to happen to you! I hope this helps, please let us know what happens. Best regards Macca 1 Quote Link to comment Share on other sites More sharing options...
jess Posted October 6, 2014 Share Posted October 6, 2014 Hi there you need to phone the hospital you had your coiling done at and tell them that you are still waiting for your two year scan, tell them about your headaches and neck pain (probably anxiety because of the waiting) but tell them you are worried and just want the scans that are now overdue xxx Goodluck and drink plenty of water xxx 1 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted October 7, 2014 Share Posted October 7, 2014 Hi Marg, It's a well known fact some Consultants have had humour bypass. Write down what you feel you need to know, keep to the facts and you hopefully will get answers. I said to my surgeon I have a pain in my shoulder since I woke up he just shrugged. He said to me never stress as it is bad for you. Told others on BTG so telling you ~ No Stress Good luck WinB143 x Quote Link to comment Share on other sites More sharing options...
Daffodil Posted October 7, 2014 Share Posted October 7, 2014 Marg Like the others said I think you need to go back to your hospital and question why your follow up scan is taking so long to come through. Anxiety of the unknown is really tough and can make things 100% harder , your GP doesn't have to understand coiling but stress to him/ her that the bleed has had a lasting effect on you and it is probably adjusting to that you need help with. If there was anything for concern they would be scanning regularly I'm sure but if you have headache and neck pain develop then best to get that checked out. You can ask to be referred elsewhere, equally ask to find out what other services and support is available from your hospital and GP you may be surprised. Headway have been tremendously helpful to me but I know it varies from area to area. I hope you get some help to move forward 1 Quote Link to comment Share on other sites More sharing options...
victoria conway Posted October 8, 2014 Share Posted October 8, 2014 Is a 2 year scan a normal thing? I certainly have never been offered one and I'm 3 years on now. Due to see a GP soon and would like to know! Victoria Quote Link to comment Share on other sites More sharing options...
jess Posted October 8, 2014 Share Posted October 8, 2014 Victoria it depends on what treatment and other things I had both mine clipped and they scanned me to check that it was completely closed (aneurysm) whilst I was still asleep then was never due to have another one at all (did nine years later for headaches and dizzy spells) but would never of had another otherwise xxx Just ask your doctor if you are unsure but if it was clipped the likelihood is they won't rescan xxx Quote Link to comment Share on other sites More sharing options...
victoria conway Posted October 8, 2014 Share Posted October 8, 2014 Mine was coiled. They put in an EVD first to drain the fluid (hydrocephalus) and the next day coiled the aneurysm. As far as I can remember, which is none too far these days, they did two MRI scans after that. The first to check for other aneurysms throughout my body (I have Ehlers Danlos Syndrome which may, or may not be a precursor to aneurysms - I have been part of a research programme on that) and a second, probably about six months afterwards, to check that the coiling had not collapsed. Since then - nothing. I will mention it when I go and see the GP next. Thanks Victoria Quote Link to comment Share on other sites More sharing options...
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