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Found 3 results

  1. It has been almost three years now since my SAH, and I feel that I have come quite a long way in my recovery. Fatigue is still a problem, but it’s slowly getting better, or maybe I am just getting better at adjusting my pace. I have recently been able to exercise more without having to rest up too much afterwards, which has been very helpful. Yesterday I had my first angiogram in two years, and this has left me so upset and emotional afterwards and I just can’t get back to a positive state of mind. I have had a few angiograms before, so I knew beforehand that it would be a bit uncomfortable, but this time I just panicked. I was so deeply afraid that something would happen during the angio that my heart was racing even the night before. And when I got to the hospital in the morning, they told me I would have to wait because the doctors had to perform an emergency surgery first. So three more hours of worry. The fear I felt during the angio made me so tense that it felt like it took forever. And this was even though I had had a mild sedative before. Afterwards I was very lucky to have a nice surgeon, who told me straight away that from what he could see, everything looked fine. He even came to my ward to give me copies of the scans, and explained them to me. After that, I was so relieved and felt happy for a while. Today however, everything just hit me at once. The toll on my brain from the wait, the irrational fear and the anxiety before the angio. And also having to rest and not being able to exercise for a week or so because of the risk of bleeding. It reminds me so much of how I felt at the beginning of my recovery, and I feel confused, angry and a bit sad. And I can’t even explain why, I can honestly say that I haven’t felt this affected mentally for a long time now. I guess I just wanted to share this with you because even though I have been talking to my husband about this, he can’t really understand why I was afraid in the first place, I am usually a very rational person. So thanks for listening. /Tina
  2. Hi, I'm not sure if I should post here or in the avm section but here we are.... Three years ago I had a large avm removed and suffered an SAH during the 14 hour op. Because of the SAH I completely lost use of my left side and had to spend six months in a rehab hospital learning to use my left arm/hand/leg/foot etc again. A horrific time and one which still terrifies me today. Three years on I'm still suffering the after effects of such a huge ordeal. I can walk unaided (albeit a bit clumsily) but have v little use of my left hand and only some small use of my arm. I have many other problems due to the avm/SAH but I'm just detailing the physical problems here for purpose of this post. After the craniotomy the hospital did a follow up angio which they were surprised was clear (the prof thought there'd be some residual avm left). Then two years later, I had an MRI with contrast dye as another check to put my mind at rest. They told me the MRI doesn't show up small parts but they were 95% sure it was gone. He slso was satisfied an angio wasnt needed. I was happy enough with that and was discharged. However, when I saw my rehab consultant (6-9 monthly check up) I told her I had been having headaches lately and had noticed again a slight noise in my right ear. The avm was originally found because of a v audible and loud whooshing noise in that ear. Because of this she referred me back to the professor who discharged me last year just to be sure. I saw him today as a re-referral. As expected he said they would do an angio purely to put my mind at rest and also obviously to check there was no avm left. I explained I was literally terrified of an angio because of the risk of stroke but he just kind of said well its the only way you'll be satisfied. He's right in a way; obviously I'd like to know 100% but I absolutely don't want to have another angio and risk another stroke. I am so frightened that it'll cause a stroke. I know the risk is roughly 1 in 1000 but I also know my luck and that if one persons going to have one it'll be me. The thought of going back to square one - that terrible, dark place of losing mobility and working working working constantly to get tiny parts back is too much to bare. I just can't face even a slight chance of it happening again. The flip side is what if an angio does show up residual avm and basically it gets caught before it gets massive like the last one? Or, i don't have one and end up cap in hand back there again in ANOTHER years time? I have trouble making decisions as it is but this is even worse than usual. I feel like its a toss up between a rock and a hard place. Does anyone have any experience and/or advice on what the best route to take is? Or helpful stats? anything! Any help would be truly appreciated.
  3. Hello everyone I've just had a phone call from a radiographer at Southampton General Hospital to say that he has a request card to do a cerebral angiogram and that it seems to have slipped through the net and is therefore overdue! I've been booked in for Friday at 1030. I also have to go to Southampton tomorrow (Tuesday) for pre-assessment, whatever that is. It's all a bit short notice really, but I guess it has to be done. I understood that the first follow up angiogram would be performed at between 1 and 3 months post SAH, and as I'm only 7 weeks post SAH, I was not unduly concerned that I had not heard anything. Does anyone know what the pre-assessment is all about? How long will I be at the hospital on Friday? I've been told to be there by 0800. Anyway, 7 weeks on... I'm having a bad week. After a week of quite rapid recovery, I seem to have gone back about 3 weeks. The headaches are worse and I am more tired than I was last week. Perhaps my brain is telling me to slow down. I hope you are all OK. Best regards Keith
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