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About GasconAlex

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    South West France

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  1. @Sushi I wear them during the day when I'm up but when I've been hospitalised and forced to stay absolutely horizontal all day (try eating and drinking lying on your back without being able to turn to your side) they insisted I must have the stockings (thigh) 24 / 7 along with the anti clot injections. @Delta The problems started when I was away on holiday normally I take pills and spend most of the day vertical but on holiday I was forced to use my wheelchair all the time. Because of the peripheral vascular disease ( sort of super Raynaud syndrome that affects the feet, hands and lower
  2. Do you become dependent on compression garments? I've had to restart using these because of blood pooling in my lower legs caused significant damage. Now as the damage is mostly repaired I am reducing their use but have found that my heart rate variation is much worse without the garments but I got no corresponding improvement when I started wearing them again initially. I would prefer not to use them (except when I'm not mobile) as it complicates an already fairly difficult life.
  3. @bombsh3ll the pots symptoms are just ridiculous heart rate changes. I feel pretty awful being vertical and it gets worse the longer I'm up. After the operation (5 days absolutely flat including eating, toilet) felt much better. Then had a month mostly flat no effort. When I started being up more it hurt more, but I don't want to be horizontal all day so take pain pills for the headaches and when too much lie on floor / bench or recline wheelchair. ( I have balance issues and mobility issues). The leak was right sided, now left sided so is new. The surgeon has little expectation that the
  4. @bombsh3ll the treatment helped, but never touched the POTS. I think I always had this but was never symptomatic, again a history of a connective tissue disorder but I have it mildly (my boys are showing much more in the way of symptoms) After some success now I am more vertical I am leaking again, but from a different point. I do have a little nasal discharge but mostly only after I've done way too much. I have a metallic taste issue, orthostatic headaches and muscular rigidity and tremors. The skull base surgeon is leaving it 3 months, then he'll do an MRI, then try to fix this new diff
  5. I disliked my first blue badge, even though I use a wheelchair. I have disability but hate applying for it. It's hard having medical assessments that say you're not really functional, but I try to do as much as possible. It's good news to have stuff fixed, and maybe you will get better - it is always possible.
  6. @bombsh3ll I'm not sure about fainting or pre syncope as the only time I am sure I fainted was in hospital waiting for an xray on my shattered and visible kneecap. This happened hours after the injury and was chalked up to significant blood loss. Sometimes (even with taking lots of painkillers) the headaches were so intense that I had to lie down before falling down. I knew I could not remain vertical and conscious so perhaps that counts as presyncope.
  7. I haven't had lumber puncture opening pressure done (even though I pushed for it when being tested for chronic meningitis), but after my first lp which I cannot comment on as I had meningitis at the time I've found that whenever they took a sample I have the exact same headache but even more intense than normal. When they tried blood patches it helped the headaches, the best one was 36 hours headache free. But the neurologist have always gone with the radiologist and he was wrong. I have the full scans, CD and cover letters. I've got to contact several neurologists with these and the sur
  8. @bombsh3ll Thanks. I can stay seated all day at the moment no problems, which is really great. I also lost a whole host of secondary neuro symptoms in the two or three days after the operation - I have fine motor control again and can do alternating movement. My point with the POTS is I think I had it before but it never affected me. I'm not too concerned about POTS if it is asymptomatic for me. I have other fairly serious issues that need sorting. My gp is concerned with either Marfan's or EDS for my boys who both have more symptoms than me but I and one side of my family is marfano
  9. Thanks @Pistol, I really hope the headaches have been mastered now been 24hrs + with no pain meds which is really really good. I don't 'feel' my heart rate it's the doctor who worries! In one of the post op problems I suffered heart rate was over 160 whilst horizontal - I don't feel this - I was obviously a little stressed at not being able to breathe. Ruined the doctors Saturday night spending an hour or so clearing my throat properly.
  10. Back home after the operation and 8 days (mostly absolutely horizontal only on back - no turning to side allowed) in hospital (not fun in an older non air con hospital at 38°C/100F) but there you go. Firstly a recap I've had a CSF leak and serious ear/brain work on the left in 2016 including meningitis. For that, and since that, I've had 11 Cranial MRI's (and a full 3 Tesla complete brain/ spine MRI - about 1 hour in machine time). None of those, particularly those tasked with looking for a leak, have given any indication of any CSF leak. One radiologist (who helps define the national pro
  11. @bombsh3ll I know you have the headaches too, I was really surprised at how little faith in the MRI he had compared to the CT scans - normally it's the reverse. That said MRI scans have little risk (with the macrocyclic gadolinium contrast) which is why I keep having them, the CT scans (especially the ones I've been having) have the xray risks so I try to minimize the number I have as I have already had a few... Hopefully I will be released in about 5-7 days, but that's what they said in 2016 when it took 142 days before they were comfortable releasing me from hospital and rehab. At
  12. Finally had the consultation with the ENT nose guy. After yet another MRI he is going to operate next week. The MRI does not show any CSF leak (none of mine ever have - even the one a few days before a surgically confirmed leak), however one of my problems is with the skull base. The skull base is a bit of a surgical battleground between various groups of neurosurgeons and different factions of ENT surgeons. Even though the problems are in basically the same bone and are a few centimeters apart the surgery is done a different way (endoscopic rather than microscopic) by different surgical
  13. At last a neurologist who listened, and did a thorough exam too. Unfortunately he has a strong suspicion of Corticobasal degeneration, which frankly isn't great news. He is not convinced that the tumor, CSF leak, skull base problems and meningitis fit some of the neuro symptoms (although the headaches may well be - hoping the operation in July works) so he is arranging a brain scintigraphy to see if this turns up indications. So a mixed day overall.
  14. Prism glasses can help, even if they aren't perfect. The other option is an eye patch. An orthoptist (OK I didn't know it was a thing before I was sent) is usually someone dealing with squints and the like. They are a bit like physio for the eyes and this can help. However having your vision split by various prisms to 'exercise' the eye muscles is surprisingly tiring and headache inducing. It does help some people. My orthoptist did several tests with different prisms over several sessions before deciding what compromise would work best for me. I never wore glasses before and had pl
  15. You may want to try an orthoptist for your diplopia. They have lots of headache inducing tests and some people respond to the reconditioning they can do. Don't plan on driving straight afterwards as having your vision split really does your head in. Prismatic glasses can also help in my experience and the orthoptist should be able to add this to a current prescription, and if you don't have a prescription you can always have just the prism.
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