Daffodil Posted June 10, 2013 Share Posted June 10, 2013 I'm now at the 15 month mark since my SAH and it's 11 months since I had my VP shunt placed. I'm just sharing and getting off my chest some of the latest goings on in my medical life. One of the harder things to manage in my upsy downsy recovery is knowing sometimes what are the symptoms of the bleed recovery and what are hydrocephalus pressure effects. I had hoped to go to a Hydrocephalus clinic and share some of the facts here but it was weekly for 8 weeks in London, just couldn't manage it,or afford it. Another time maybe Sometimes the effects of hydrocephalus are so confusing when combined with SAH recovery.. I have them all written down so that I or my hubbie can tell. High pressure gives me tingling in hands and feet, extreme lethargy, eye pain, neck pain , I lose words and have all over head headache but it is better when you're upright ... And I can't go too high pressure, that's where the shunt comes in but tolerances can change and what was my high tolerance can shift over time. Low pressure makes me very cold, , makes my head feel heavy , dizzy and nausea and it's better to lie flat with sunglasses on and ear plugs in. Throw regular weather changes into the mix and I don't know whether I'm coming or going some days, not easy. I've been up to the big smoke today for my regular clinic check up at hospital, this is something that will continue now as hydrocephalus is for life so I'm never getting discharged off their books. A strangly comforting yet odd thought. That said it was good to talk through recent events with people who know me after especially as they decided I needed that LP and scans last week. All my scans and results show zero change in the coil or annies but a slight change in ventricle size. They discussed that as my brain is still healing from all the blood and subsequent hydrocephalus CSF pressure effects ( i had a level 4 bleed I found out today , knew i had a bad one but that was news to me) It could be that my CSF might now be absorbing more by itself which is good but it will upset the wonderful ecosystems in the brain thus sending some pretty intense signals.. Makes sense and they admit they don't really know for sure. They do think it's normal to feel this way after SAH plus adapting to hydro. I do know that right the way through this often the weeks I have felt the worst I can then go on and track that I must have had some healing at the same time as I then go on to have a good run. The hard part is that I am super sensitive to pressure changes ( wouldn't you just know it). Not fair eh? I can handle many things i have learnt but take me low pressure and I'm flat on my back beng sick into a bucket. What this all may mean is another adjustment on the old shunt setting, our plan is to wait out another two weeks and if my high pressure symptoms don't fade then i will be heading back for a pitsop to get that done. Mind you that's why they gave me an adjustable one thank goodness as I think my surgeon realised I was a sensitive bunnie. It's reassuring to know nothing is wrong with the coiling or the Annie's. Equally I am comforted that how I am feeling ( rubbish) is normal even though it's no consolation. I have to slow things down again a bit more and see if I can weather this change out but it's not life threatening just a bit scary at times. They are going to send me to see a neuro physiologist though so I will await that with interest. Oh and MRI in a few week. London in June is lovely though. That's something eh. Link to comment Share on other sites More sharing options...
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